I hope this post finds everyone enjoying the holiday season. My husband and I were fortunate to spend Thanksgiving with my sister and her family in Arizona. In addition we were able to visit with my dad and his wife in Tucson, so Thanksgiving turned out to be a great holiday for us.
Last week, after several years of dealing with the unknown, I finally received the answers that I have been searching for. During my last visit with my Movement Disorder Specialist, she stated that her opinion is that I do not have one of the PD-Plus conditions. Her opinion is that I do have idiopathic Parkinson’s Disease. Due to the lack of any significant tremor, it appears that I have the akinetic-rigid form of PD, rather than the tremor dominant form.
I am certain that many people would find this diagnosis to be devastating. As I listened to her diagnosis, I felt as if I were receiving a blessing. Although Parkinson’s Disease is a chronic and progressive disease, the disease itself does not reduce life expectancy. Had I been diagnosed with one of the PD-Plus conditions, my life expectancy could have been reduced significantly. Therefore, this diagnosis is a blessing in my life.
During my journey through the diagnosis process, I have met many others who have blessed my life. Many of those have had a diagnosis for several years, while others were struggling for a diagnosis as I had to. Too many of the people I have met were young people who have been told that they are “too young” for Parkinson’s Disease. Regardless, this diagnosis and the journey to get here, has brought wonderful people into my life. Additionally, now that I know that I have Parkinson’s Disease, this blog becomes all that more important. I hold this belief, because it should not have been as difficult to deal with the medical community as it was, in order to finally receive my diagnosis.
While visiting with my family in Arizona for Thanksgiving I was blessed to be able to personally meet one of my new internet PD friends for the first time. She is also a young person who has been having a difficult time trying to get a firm diagnosis from the medical community. It was wonderful to be able to finally meet this person after the many internet and telephone conversations we have shared.
More recently I was contacted through this blog by a young woman known as Indymama. She has a very unique story that I believe that young onset patients may benefit from. This young lady has a strong family history of Parkinson’s Disease, and she began exhibiting symptoms at the young age of eighteen. Despite her strong family history with this disease, she has been having many difficulties getting the medical community to acknowledge that she could potentially be dealing with Parkinson’s Disease. Like many others, she has been told that she is too young.
Indymama has graciously added a link to my blog on her site. I went to her blogsite and was amazed to read about her history and what she is currently dealing with. Her site is very informative and motivational. With her permission I am adding a link to her blog. It can be found in the “Resources for PD, PD-Plus, & Other Movement Disorders” section titled, “Indymama’s Young Parkinson’s Journey”. I believe you will be very blessed by visiting her site.
Before I close, I want to wish everyone a safe and wonderful Christmas, just in case I do not get a chance to post again before then. As we all know this is a very busy time for most of us each year. To all my new friends that have come into my life, I will continue to keep you in my prayers. You all know who you are, and each one of you have touched my life in ways that I never thought possible. Many blessings to all.
Thursday, December 13, 2007
Monday, December 3, 2007
Man's Best Friend
It has been some time since I have posted, and I do apologize. As I mentioned in my November personal medical journal post, I have been making some changes with my medications. These changes have had beneficial effects, but have also caused some extreme fatigue. I am slowly working my way through the various changes, and I am hoping to post more often.
Through the many years of internet research, I have often read that chronically ill people can benefit from having a pet. I am primarily referring to a dog, otherwise known as man’s best friend. On November the 10th I woke up, and without any real depth prior thought, I headed to one of the local animal shelters.
My husband had expressed concern in the past that having a dog might cause more harm than good. His greatest concern was that I could trip over a small animal and fall, since my balance is not very good. Up until that trip to the animal shelter, we had agreed that a dog was not in my best interest. In fact, my husband did not know that I was going to the animal shelter until I called him from there later that afternoon.
Several dogs were ready for “adoption” that day. Essentially, these dogs already had their shots and had been spayed or neutered. I looked at those dogs first, and I even took one that caught my attention for a short walk. Unfortunately, the little guy would have been more than I could have handled. He did not walk well on a leash, showed little interest in me, and spent the majority of the walk marking his territory.
I then began looking at the dogs that were available for adoption, but could not be released until they were spayed or neutered. As I walked past each kennel, most of the dogs were barking, jumping around, and just trying to get my attention. When I reached one particular kennel, there was a small dog that did not do any of these things. She was just quietly lying in the kennel with the saddest brown eyes I had ever seen. I almost immediately knew that this little dog was supposed to be mine.
It took the staff member a few minutes to get her on a leash, so that I could take her for a walk. She was very timid, and it was evident that she had not been treated well in the past. Within about five minutes, she broke out of her shell, and all she wanted was to be held and pet. She walked on the leash like an old pro, constantly looking up as if to check to see if I was still there. I knew this dog was meant for me.
It was about this same time that I called my husband and told him where I was. I spent the next thirty minutes telling him about this dog and how well behaved and calm she was. I told him that I knew in my heart that this dog was the reason I had been lead to the animal shelter that day. He reluctantly gave his blessing for me to let the shelter know that I was interested in adopting her.
After filling out the required paperwork and paying the fee, essentially this little dog belonged to me. Unfortunately, the animal shelter workers said that I could not take her home until she was spayed, but they told me that I could visit her as often as I wanted. I stayed at the shelter for another thirty minutes, until they closed, and I reluctantly went home. The shelter workers informed me that it would be about two weeks before I could bring her home.
Therefore, I visited with her at the shelter on Monday, Tuesday, and Wednesday. On Thursday, my mom and aunt went with me to the shelter to meet her. Like me, they instantly fell in love with her. As we were getting ready to leave the shelter, one of the workers said she wanted to check the dog, realizing that she had not been checked to see if she had already been spayed, prior to arriving at the shelter. To my surprise, the worker stated that she had absolutely been previously spayed, and she could leave with us that day. I am not sure whether the dog or I was happier about this turn of events. Regardless, on November the 15th she was able to come home with me.
I had no trouble deciding on a name for this little dog. The first time I saw her she looked so sad and pitiful, that she reminded me of a doll that I have that had belonged to my grandma, who died many years ago. This doll’s actual name when sold back in 1965 was “Little Miss No Name”. When my mom graduated from high school, she had bought it for my grandma. My grandma, who I was very close to, cherished that doll when she was alive. I remember how much I loved the doll as a little girl, and my grandma would tell me that I could look at her, but I could not touch her. I used to ask her why the doll was so sad and wore a dress made of burlap. She said that she was sad because her mom had died in a fire when she was eight years old, and she wore a burlap dress because she was very poor. I believe that this doll represented how my grandma felt growing up poor and after her mother died in a fire when she was eight years old. The last time I saw my grandma before she died, she had promised me that I could have “Little Miss No Name” after she passed away. Six months later, “Little Miss No Name” became mine.
I knew that “Little Miss No Name” was much too long for a name, so I named my new four-legged friend Maryjane. Maryjane was my grandma’s name. I was a little worried that some of the family would not understand why I chose the name, but most of them did. Although my mother said that had I named a “cat” Maryjane, my grandma would have turned over in her grave, because she had hated cats with a passion. Therefore, Maryjane is the name of my new little friend.
Little Maryjane has settled in very nicely. The veterinarian gave her a clean bill of health and stated that she was only about one year old. Her age surprised me, because she behaves like a much older dog. Although she will play occasionally, her sole purpose in life seems to be getting as much love as she can. She enjoys sitting in the sun while I am out in the garden, and she enjoys sitting on my lap for hours having her tummy rubbed. She enjoys car rides and knows to do her “business” outside. She has even bonded with my husband and enjoys cuddle time in bed with us each night, before he puts her in her own bed to sleep.
Although this topic does not have much to do with Parkinson’s Disease, PD-Plus, or dealing with the medical community, it does have much to do with well-being. Since Maryjane came into my life, she has played a large role in reducing stress and providing companionship. She has slipped so perfectly into our lives that I can only presume that she was the reason I felt lead to the animal shelter that Saturday afternoon. Her personality and behavior matches well with the limitations that this disease has placed on my life. Someone mentioned to me that she was the perfect dog for me. I may have rescued her from the shelter, but she has added benefits to my health that I never thought possible.
Our local animal shelter is a wonderful place. I found the workers to be helpful and friendly to deal with. Additionally, when a person adopts a pet, the adoption includes a bad of dog food, all of the first year’s required shots, and a certificate for a free veterinarian visit to insure that the animal is in good health. I believe that many of the animals at the shelters are not there because they are bad animals. I do believe that many are there because of circumstances caused by humans. I would now highly advocate that anyone seeking a four-legged companion to first check out the local animal shelters. There are so many unwanted, well-behaved animals who only need a good home in order to thrive.
To complete this little story, I am including pictures of both the real “Little Miss No Name” and Maryjane, who reminded me so much of this little doll when I first saw her.
Through the many years of internet research, I have often read that chronically ill people can benefit from having a pet. I am primarily referring to a dog, otherwise known as man’s best friend. On November the 10th I woke up, and without any real depth prior thought, I headed to one of the local animal shelters.
My husband had expressed concern in the past that having a dog might cause more harm than good. His greatest concern was that I could trip over a small animal and fall, since my balance is not very good. Up until that trip to the animal shelter, we had agreed that a dog was not in my best interest. In fact, my husband did not know that I was going to the animal shelter until I called him from there later that afternoon.
Several dogs were ready for “adoption” that day. Essentially, these dogs already had their shots and had been spayed or neutered. I looked at those dogs first, and I even took one that caught my attention for a short walk. Unfortunately, the little guy would have been more than I could have handled. He did not walk well on a leash, showed little interest in me, and spent the majority of the walk marking his territory.
I then began looking at the dogs that were available for adoption, but could not be released until they were spayed or neutered. As I walked past each kennel, most of the dogs were barking, jumping around, and just trying to get my attention. When I reached one particular kennel, there was a small dog that did not do any of these things. She was just quietly lying in the kennel with the saddest brown eyes I had ever seen. I almost immediately knew that this little dog was supposed to be mine.
It took the staff member a few minutes to get her on a leash, so that I could take her for a walk. She was very timid, and it was evident that she had not been treated well in the past. Within about five minutes, she broke out of her shell, and all she wanted was to be held and pet. She walked on the leash like an old pro, constantly looking up as if to check to see if I was still there. I knew this dog was meant for me.
It was about this same time that I called my husband and told him where I was. I spent the next thirty minutes telling him about this dog and how well behaved and calm she was. I told him that I knew in my heart that this dog was the reason I had been lead to the animal shelter that day. He reluctantly gave his blessing for me to let the shelter know that I was interested in adopting her.
After filling out the required paperwork and paying the fee, essentially this little dog belonged to me. Unfortunately, the animal shelter workers said that I could not take her home until she was spayed, but they told me that I could visit her as often as I wanted. I stayed at the shelter for another thirty minutes, until they closed, and I reluctantly went home. The shelter workers informed me that it would be about two weeks before I could bring her home.
Therefore, I visited with her at the shelter on Monday, Tuesday, and Wednesday. On Thursday, my mom and aunt went with me to the shelter to meet her. Like me, they instantly fell in love with her. As we were getting ready to leave the shelter, one of the workers said she wanted to check the dog, realizing that she had not been checked to see if she had already been spayed, prior to arriving at the shelter. To my surprise, the worker stated that she had absolutely been previously spayed, and she could leave with us that day. I am not sure whether the dog or I was happier about this turn of events. Regardless, on November the 15th she was able to come home with me.
I had no trouble deciding on a name for this little dog. The first time I saw her she looked so sad and pitiful, that she reminded me of a doll that I have that had belonged to my grandma, who died many years ago. This doll’s actual name when sold back in 1965 was “Little Miss No Name”. When my mom graduated from high school, she had bought it for my grandma. My grandma, who I was very close to, cherished that doll when she was alive. I remember how much I loved the doll as a little girl, and my grandma would tell me that I could look at her, but I could not touch her. I used to ask her why the doll was so sad and wore a dress made of burlap. She said that she was sad because her mom had died in a fire when she was eight years old, and she wore a burlap dress because she was very poor. I believe that this doll represented how my grandma felt growing up poor and after her mother died in a fire when she was eight years old. The last time I saw my grandma before she died, she had promised me that I could have “Little Miss No Name” after she passed away. Six months later, “Little Miss No Name” became mine.
I knew that “Little Miss No Name” was much too long for a name, so I named my new four-legged friend Maryjane. Maryjane was my grandma’s name. I was a little worried that some of the family would not understand why I chose the name, but most of them did. Although my mother said that had I named a “cat” Maryjane, my grandma would have turned over in her grave, because she had hated cats with a passion. Therefore, Maryjane is the name of my new little friend.
Little Maryjane has settled in very nicely. The veterinarian gave her a clean bill of health and stated that she was only about one year old. Her age surprised me, because she behaves like a much older dog. Although she will play occasionally, her sole purpose in life seems to be getting as much love as she can. She enjoys sitting in the sun while I am out in the garden, and she enjoys sitting on my lap for hours having her tummy rubbed. She enjoys car rides and knows to do her “business” outside. She has even bonded with my husband and enjoys cuddle time in bed with us each night, before he puts her in her own bed to sleep.
Although this topic does not have much to do with Parkinson’s Disease, PD-Plus, or dealing with the medical community, it does have much to do with well-being. Since Maryjane came into my life, she has played a large role in reducing stress and providing companionship. She has slipped so perfectly into our lives that I can only presume that she was the reason I felt lead to the animal shelter that Saturday afternoon. Her personality and behavior matches well with the limitations that this disease has placed on my life. Someone mentioned to me that she was the perfect dog for me. I may have rescued her from the shelter, but she has added benefits to my health that I never thought possible.
Our local animal shelter is a wonderful place. I found the workers to be helpful and friendly to deal with. Additionally, when a person adopts a pet, the adoption includes a bad of dog food, all of the first year’s required shots, and a certificate for a free veterinarian visit to insure that the animal is in good health. I believe that many of the animals at the shelters are not there because they are bad animals. I do believe that many are there because of circumstances caused by humans. I would now highly advocate that anyone seeking a four-legged companion to first check out the local animal shelters. There are so many unwanted, well-behaved animals who only need a good home in order to thrive.
To complete this little story, I am including pictures of both the real “Little Miss No Name” and Maryjane, who reminded me so much of this little doll when I first saw her.
Monday, November 12, 2007
Personal Medical Journal November & December 2007
November 12, 2007
It has been a long time since I have posted anything new, due to a variety of reasons. I had meant to add a final entry for the month of October, but it just never happened. Therefore, I will give a quick update on everything that has been happening over the last few weeks.
The greatest challenge over the last few weeks was completing the process of replacing the Mirapex for the Azilect. Once I was a little more than half-way through the process, I felt as if I suddenly hit a brick wall. I had no energy, and I spent much of my time either reading or napping. It was the most bone weary fatigue that I have ever experienced. I am pleased to say that it has gotten better.
I have been completely off of the Mirapex for almost two weeks, and I have been taking the Azilect for a little over one month. Thankfully, the obsessive-compulsive side affect of the Mirapex has disappeared, which was the main reason for discontinuing the Mirapex. The Azilect has actually improved the motor fluctuations that I had been experiencing. It does appear that the medication switch was a positive decision.
Last week I had to have an epidural injection in my cervical spine, which was a procedure that had been planned for quite some time. So far, it appears that this injection was a success. I have less neck and arm pain from the herniated C5-6 disc. It took about six days for me to fully "recover" from the procedure. The sedation that I was given during the procedure stayed with me for a little over twenty-four hours, which I thought was strange. I slept after the procedure and for the majority of the day following the procedure. There was some significant pain for the first four to five days following the procedure, but all of that pain disappeared by the sixth day. I am very hopeful that this injection keeps the pain under control for a while.
I saw my MDS on Tuesday, and it was a very eventful visit. She agreed that the sleep study was "inconclusive", but she was able to glean enough information to make some additional medication changes. We are increasing the Azilect from .5 mg to 1.0 mg. each morning. Additionally, based on my husband's description of the REM Behavior Sleep Disorder types of symptoms he has observed, she had prescribed Klonopin to be taken right before bed. I have now taken it for four nights, and I do believe that it is helping with the quality of my sleep. I know that my husband is getting better sleep, because I have not kicked or hit him during my dreams. This particular mediation is supposed to help suppress the symptoms of REM Behavior Sleep Disorder. Although it has only been four days, it does seem that it is having beneficial effects.
All of these recent changes appear to have been beneficial. The only negative aspect is that I am still quite fatigued during the day. The positive results far outweigh the one negative aspect. The fatigue could be a bi-product of the medications or just the disease itself.
I am going to end here for now. I am working on another post, and I do hope to have it complete by this week. I will continue to add information updates on my medical process on this post for the months of November and December. God Bless to all.
December 12, 2007
On December the 5th I saw my Movement Disorder Specialist. She was very pleased with the benefits that adding the Azilect has had on my symptoms. Additionally, I informed her that the Klonopin was helping me get better sleep at night. I am still experiencing extreme daytime fatigue. I often nap daily, but she said that is perfectly okay to do. I do still have breakthroughs of symptoms, but not as extreme as prior to starting the Azilect.
Before we ended the visit I asked her if she had a clearer picture or thought as to which form of Parkinsonism I have. She believes that I do have idiopathic Parkinson's Disease. Rather than the tremor dominant form, she feels that I have the more akinetic-rigid form. I was so happy to hear that she no longer thought that PD-Plus was a possibility. I almost began crying right there in her office.
Since it appears that the new medication regimen is working well, I am to start seeing her every three months again, rather than monthly. I still have bad days, which is to be expected with this disease. I am better able emotionally to deal with those bad days, now that I know exactly what I am dealing with. It is a blessing to finally have the answers I have been searching for.
December 21, 2007
As much as I enjoy the Christmas season, I can really feel the effects of the PD with the additional hustle and bustle of the season. There are so many things that I need to get done, but many times my body just will not allow me to keep up. This is difficult for me to accept at times, because I have always been such a go-go person.
It is so remarkable how the things I used to take for granted have changed. If I spend an hour or two shopping, I find myself done physically for the rest of the day. Naps are now an almost everyday event.
I spent yesterday baking, and by evening I was a wreck. My lower back hurt worse than prior to the fusion, and somehow the effects of my medications wore off worse than they have since making all of the adjustments. The bradykinesia left me hardly able to walk or speak just prior to bed. The pain from my back was so bad, that it brought me to tears. Yesterday was a good lesson for me in the sense that I must come to grips with the fact that I just no longer have the abilities to physically do what I once was able to.
Aside from the extreme fatigue, there are still some minor symptom breakthroughs. Again, these are most often brought on by trying to do more than I should. My goal for 2008 is to really start listening to my body, in order to prevent some of the effects that occur when I try to keep "pushing myself". I have been given the opportunity to have the time to take care of myself, since I am no longer able to work. Therefore, my new focus is to use this time to try new things in order to keep the PD under the best control as possible.
It has been a long time since I have posted anything new, due to a variety of reasons. I had meant to add a final entry for the month of October, but it just never happened. Therefore, I will give a quick update on everything that has been happening over the last few weeks.
The greatest challenge over the last few weeks was completing the process of replacing the Mirapex for the Azilect. Once I was a little more than half-way through the process, I felt as if I suddenly hit a brick wall. I had no energy, and I spent much of my time either reading or napping. It was the most bone weary fatigue that I have ever experienced. I am pleased to say that it has gotten better.
I have been completely off of the Mirapex for almost two weeks, and I have been taking the Azilect for a little over one month. Thankfully, the obsessive-compulsive side affect of the Mirapex has disappeared, which was the main reason for discontinuing the Mirapex. The Azilect has actually improved the motor fluctuations that I had been experiencing. It does appear that the medication switch was a positive decision.
Last week I had to have an epidural injection in my cervical spine, which was a procedure that had been planned for quite some time. So far, it appears that this injection was a success. I have less neck and arm pain from the herniated C5-6 disc. It took about six days for me to fully "recover" from the procedure. The sedation that I was given during the procedure stayed with me for a little over twenty-four hours, which I thought was strange. I slept after the procedure and for the majority of the day following the procedure. There was some significant pain for the first four to five days following the procedure, but all of that pain disappeared by the sixth day. I am very hopeful that this injection keeps the pain under control for a while.
I saw my MDS on Tuesday, and it was a very eventful visit. She agreed that the sleep study was "inconclusive", but she was able to glean enough information to make some additional medication changes. We are increasing the Azilect from .5 mg to 1.0 mg. each morning. Additionally, based on my husband's description of the REM Behavior Sleep Disorder types of symptoms he has observed, she had prescribed Klonopin to be taken right before bed. I have now taken it for four nights, and I do believe that it is helping with the quality of my sleep. I know that my husband is getting better sleep, because I have not kicked or hit him during my dreams. This particular mediation is supposed to help suppress the symptoms of REM Behavior Sleep Disorder. Although it has only been four days, it does seem that it is having beneficial effects.
All of these recent changes appear to have been beneficial. The only negative aspect is that I am still quite fatigued during the day. The positive results far outweigh the one negative aspect. The fatigue could be a bi-product of the medications or just the disease itself.
I am going to end here for now. I am working on another post, and I do hope to have it complete by this week. I will continue to add information updates on my medical process on this post for the months of November and December. God Bless to all.
December 12, 2007
On December the 5th I saw my Movement Disorder Specialist. She was very pleased with the benefits that adding the Azilect has had on my symptoms. Additionally, I informed her that the Klonopin was helping me get better sleep at night. I am still experiencing extreme daytime fatigue. I often nap daily, but she said that is perfectly okay to do. I do still have breakthroughs of symptoms, but not as extreme as prior to starting the Azilect.
Before we ended the visit I asked her if she had a clearer picture or thought as to which form of Parkinsonism I have. She believes that I do have idiopathic Parkinson's Disease. Rather than the tremor dominant form, she feels that I have the more akinetic-rigid form. I was so happy to hear that she no longer thought that PD-Plus was a possibility. I almost began crying right there in her office.
Since it appears that the new medication regimen is working well, I am to start seeing her every three months again, rather than monthly. I still have bad days, which is to be expected with this disease. I am better able emotionally to deal with those bad days, now that I know exactly what I am dealing with. It is a blessing to finally have the answers I have been searching for.
December 21, 2007
As much as I enjoy the Christmas season, I can really feel the effects of the PD with the additional hustle and bustle of the season. There are so many things that I need to get done, but many times my body just will not allow me to keep up. This is difficult for me to accept at times, because I have always been such a go-go person.
It is so remarkable how the things I used to take for granted have changed. If I spend an hour or two shopping, I find myself done physically for the rest of the day. Naps are now an almost everyday event.
I spent yesterday baking, and by evening I was a wreck. My lower back hurt worse than prior to the fusion, and somehow the effects of my medications wore off worse than they have since making all of the adjustments. The bradykinesia left me hardly able to walk or speak just prior to bed. The pain from my back was so bad, that it brought me to tears. Yesterday was a good lesson for me in the sense that I must come to grips with the fact that I just no longer have the abilities to physically do what I once was able to.
Aside from the extreme fatigue, there are still some minor symptom breakthroughs. Again, these are most often brought on by trying to do more than I should. My goal for 2008 is to really start listening to my body, in order to prevent some of the effects that occur when I try to keep "pushing myself". I have been given the opportunity to have the time to take care of myself, since I am no longer able to work. Therefore, my new focus is to use this time to try new things in order to keep the PD under the best control as possible.
Sunday, October 28, 2007
Filing For SSDI / SSI Benefits
Because many patients with a chronic illness may have to file for permanent disability at some point, I thought it was important to add a post about the role the medical community plays in this process. Aside from that role, there are multiple ways that a patient can become prepared should the need arise to file for permanent Social Security benefits due to disability. In fact, many of the suggestions that I have previously posted can become key elements during the Social Security application and approval process.
When it was determined that it was time for me to file for permanent disability, I was not looking forward to dealing with Social Security. Most people have heard the numerous horror stories about denied claims, the appeals process, and the length of time it takes for approval, etc. Many of us even know someone who has been through the process and had trouble with getting their claims approved. These horror stories were the nexus of my fears about dealing with Social Security.
When I was ready to begin the process, I went to the Social Security Administration’s website, in order to find out what the process was for filing my claim. I was pleasantly surprised to find that a person can file the initial application for benefits right through the website. What I found out during the online application process is that the application is very long and detailed. Depending on the amount of information a person has, the application process is probably a two to four hour process. In my case, I have difficulties with sitting for extended lengths of time, so it took me two days to complete the application. Their process allows a person to save and return to the application as many times as needed, which was a redeeming feature.
Based on my experience, the following information needs to on hand, prior to starting the application process for Social Security benefits:
1. List of all physicians, including mailing addresses, telephone numbers, and associated dates of contact. (Approximate dates are appropriate. Example: from 01/01/01 thru 12/01/02) This list should also include physical therapists, mental health professionals, physician’s assistants, and any other medical professional / practitioner that the patient has had contact with.
2. Dates that chronic illness began, including various symptoms associated with illness onset
3. List of diagnostic tests, including dates and results
4. List of past and current treatments including physical therapy, prescription medications, surgeries, over the counter medications, etc.
5. List of specific limitations and symptoms that prevent a person from being able to work. Specifics are required and looked at very closely. (Example: how long can a person sit before having to get up and move around, distance a person can walk before taking a break, amount of time a person can stand, etc.)
6. Copies of as many medical records that a person can find.
The application for Social Security itself is the greatest indicator of the amount of detail that Social Security looks at when making a determination for benefits. The more details that supplied during the initial application process, the better the chances are that a claim may be approved. If Social Security determines that there is not enough information to confirm that a person is permanently disabled, the claim most often will be denied.
Although there are many more aspects involved with the Social Security process, I primarily want to point out how some of the suggestions I have previously written about can assist in the process. Let us look at the following:
1. Finding and establishing a good doctor / patient relationship with physicians – This is essential for a person with a suspected or diagnosed chronic illness, but it can also be the most important aspect when filing for disability benefits. Social Security makes contact with a person’s physician(s) both in writing and by telephone, in order to verify a person’s disability status. If a patient does not see a physician often or does not have a good relationship with the physician, the physician’s response to Social Security may not help with the claim, simply because the physician may not be fully aware that any limitations exist. My Primary Care Physician and I had discussed my health issues prior to me filing my application, and he was well aware that his input to Social Security was essential. Because I have a good relationship with my Primary Care Physician and see him on a regular basis, he had enough information about my conditions, symptoms, and limitations to confirm my disability status and back up his opinions.
2. Personal Medical Records File – The person who has copies of his / her own medical records already has a large portion of the information that the Social Security application asks for. This includes diagnostic tests, treatments, information on physicians, etc. Keeping a personal medical file is not only an asset when dealing with the medical community, but it insures that a person does not have to spend hours searching for critical information that essential when filing for Social Security benefits. Additionally, I was able to provide the records I had to Social Security immediately, which allowed them to begin their process of determining my disability status. I believe that being able to provide them with an almost complete set of my medical records, expedited the process, because they were not dependent on sending out requests to the many physicians I have seen or waiting for those records to be sent by my physicians. They would have only had to wait for any additional information that they may have thought necessary to make a determination. Of course, this is only my opinion based on my personal experience.
3. Personal Medical Journal - Keeping a personal medical journal is not only an asset during and after the diagnosis process, but it is a great resource for the person who is applying for Social Security Benefits. Although medical records are important, they may not reflect or detail all of a patient’s symptoms, daily struggles, or the effects that the chronic condition has on the patient’s life each day. Additionally, a personal medical journal is a first hand account about symptoms, dates when symptoms emerged, responses to treatments, and other aspects that may not make it into a physician’s medical records. My journal became my main source for detailing my conditions, symptoms, and especially the progression of those conditions. Although I did not submit my journal to Social Security, I did use the information to insure that the information I was submitting was accurate. If Social Security had denied my claim, I would have then provided my journal during the appeals process.
4. Copies of my written correspondence to my physicians – Written documentation became essential during the diagnosis process, but also assisted me during the Social Security Application process. As with my personal medical journal, I referred to my copies of written correspondence to assist with detailing my symptoms, significant dates, and for general accuracy purposes. Again, I did not submit these copies to Social Security, but would have included them during an appeals process.
The most important thing that I discovered is that no information can be withheld when filing a claim with Social Security. Too much information is better than not enough information when going through this process. For example, I remember how angry I was with some of the specialists’ opinions about my conditions in the early years, along with their written reports that they submitted to my Primary Care Physician. However, during this process their content became less important. The reports actually helped to establish that physical symptoms of chronic conditions existed, as well as a timeline of when I first began seeking treatment and a diagnosis for these conditions. Therefore, during the Social Security process, some records that I once felt were detrimental, became evidence that the onsets of my conditions occurred several years prior to any diagnosis. This information, along with more recent records that indicated the severity of symptoms progression, helped to establish the likelihood that my conditions were both chronic and progressive.
I was pleasantly surprised again when I went to deliver my medical records to my local Social Security office, the day after I submitted my application via the internet. The man I met with was polite and informative. He assisted with helping to fix a problem with the records of my past earnings in order to insure that my award amount was correct in the event that my claim was approved. Additionally, he made sure that I had his contact information in the event that I had any further questions while waiting for a determination on my claim. Almost four months later, this same man called me on a Saturday to let me know that Social Security approved my claim, and advised me of additional documentation that I needed to bring into the local office as a result. Again, I was very amazed.
In my opinion, my experience with Social Security was remarkable considering all of the horror stories out there. I believe that the following factors may have played key roles during the claim process:
1. I have two diagnosed conditions that are considered as qualifying conditions for permanent disability by the Social Security Administration.
2. I have at least seven years of consistent visits to my Primary Care Physician and multiple specialists for diagnostic and treatment purposes.
3. I took extra time to provide as much detailed information as possible while filling out the online application, including information on other minor health conditions not directly related to the two chronic conditions.
4. I had 100% support from my Primary Care Physician who had full knowledge of my past medical history as well as my current conditions, and how these conditions affect my daily life.
5. I made certain that Social Security had access to as many medical records as possible.
6. I made sure that the person, outside of the medical community, who knew the most about my conditions and the associated disabilities, was the person who could best support my claim of permanent disability if contacted by Social Security.
Prior to applying for benefits, I came across an internet site that clearly outlines the Social Security claims process. This site gives complete information on the entire process including application, denials, appeals, hearings, etc. It offers information about legal resources, how Social Security determines if a person is disabled, and answers many common questions that come up during the process. It is one of the best resources out there for anyone who may need to apply for SSDI or SSI benefits. I will include a link to this site under the “Resources for PD, PD-Plus, and Other Movement Disorders” section.
It was a blessing that my experience with Social Security went as smooth as it did. It alleviated the potential for additional stress in my life, which has a tendency to affect my condition in a negative manner. I hope that by sharing my experience and the information that I found valuable that someone else might also have a good experience when dealing with Social Security. My positive experience may have been the result of the depth of information supplied to Social Security, a little help from the Lord, or a combination of both. Regardless, attention to every detail and a little prayer, cannot hurt when dealing with the Social Security Administration.
When it was determined that it was time for me to file for permanent disability, I was not looking forward to dealing with Social Security. Most people have heard the numerous horror stories about denied claims, the appeals process, and the length of time it takes for approval, etc. Many of us even know someone who has been through the process and had trouble with getting their claims approved. These horror stories were the nexus of my fears about dealing with Social Security.
When I was ready to begin the process, I went to the Social Security Administration’s website, in order to find out what the process was for filing my claim. I was pleasantly surprised to find that a person can file the initial application for benefits right through the website. What I found out during the online application process is that the application is very long and detailed. Depending on the amount of information a person has, the application process is probably a two to four hour process. In my case, I have difficulties with sitting for extended lengths of time, so it took me two days to complete the application. Their process allows a person to save and return to the application as many times as needed, which was a redeeming feature.
Based on my experience, the following information needs to on hand, prior to starting the application process for Social Security benefits:
1. List of all physicians, including mailing addresses, telephone numbers, and associated dates of contact. (Approximate dates are appropriate. Example: from 01/01/01 thru 12/01/02) This list should also include physical therapists, mental health professionals, physician’s assistants, and any other medical professional / practitioner that the patient has had contact with.
2. Dates that chronic illness began, including various symptoms associated with illness onset
3. List of diagnostic tests, including dates and results
4. List of past and current treatments including physical therapy, prescription medications, surgeries, over the counter medications, etc.
5. List of specific limitations and symptoms that prevent a person from being able to work. Specifics are required and looked at very closely. (Example: how long can a person sit before having to get up and move around, distance a person can walk before taking a break, amount of time a person can stand, etc.)
6. Copies of as many medical records that a person can find.
The application for Social Security itself is the greatest indicator of the amount of detail that Social Security looks at when making a determination for benefits. The more details that supplied during the initial application process, the better the chances are that a claim may be approved. If Social Security determines that there is not enough information to confirm that a person is permanently disabled, the claim most often will be denied.
Although there are many more aspects involved with the Social Security process, I primarily want to point out how some of the suggestions I have previously written about can assist in the process. Let us look at the following:
1. Finding and establishing a good doctor / patient relationship with physicians – This is essential for a person with a suspected or diagnosed chronic illness, but it can also be the most important aspect when filing for disability benefits. Social Security makes contact with a person’s physician(s) both in writing and by telephone, in order to verify a person’s disability status. If a patient does not see a physician often or does not have a good relationship with the physician, the physician’s response to Social Security may not help with the claim, simply because the physician may not be fully aware that any limitations exist. My Primary Care Physician and I had discussed my health issues prior to me filing my application, and he was well aware that his input to Social Security was essential. Because I have a good relationship with my Primary Care Physician and see him on a regular basis, he had enough information about my conditions, symptoms, and limitations to confirm my disability status and back up his opinions.
2. Personal Medical Records File – The person who has copies of his / her own medical records already has a large portion of the information that the Social Security application asks for. This includes diagnostic tests, treatments, information on physicians, etc. Keeping a personal medical file is not only an asset when dealing with the medical community, but it insures that a person does not have to spend hours searching for critical information that essential when filing for Social Security benefits. Additionally, I was able to provide the records I had to Social Security immediately, which allowed them to begin their process of determining my disability status. I believe that being able to provide them with an almost complete set of my medical records, expedited the process, because they were not dependent on sending out requests to the many physicians I have seen or waiting for those records to be sent by my physicians. They would have only had to wait for any additional information that they may have thought necessary to make a determination. Of course, this is only my opinion based on my personal experience.
3. Personal Medical Journal - Keeping a personal medical journal is not only an asset during and after the diagnosis process, but it is a great resource for the person who is applying for Social Security Benefits. Although medical records are important, they may not reflect or detail all of a patient’s symptoms, daily struggles, or the effects that the chronic condition has on the patient’s life each day. Additionally, a personal medical journal is a first hand account about symptoms, dates when symptoms emerged, responses to treatments, and other aspects that may not make it into a physician’s medical records. My journal became my main source for detailing my conditions, symptoms, and especially the progression of those conditions. Although I did not submit my journal to Social Security, I did use the information to insure that the information I was submitting was accurate. If Social Security had denied my claim, I would have then provided my journal during the appeals process.
4. Copies of my written correspondence to my physicians – Written documentation became essential during the diagnosis process, but also assisted me during the Social Security Application process. As with my personal medical journal, I referred to my copies of written correspondence to assist with detailing my symptoms, significant dates, and for general accuracy purposes. Again, I did not submit these copies to Social Security, but would have included them during an appeals process.
The most important thing that I discovered is that no information can be withheld when filing a claim with Social Security. Too much information is better than not enough information when going through this process. For example, I remember how angry I was with some of the specialists’ opinions about my conditions in the early years, along with their written reports that they submitted to my Primary Care Physician. However, during this process their content became less important. The reports actually helped to establish that physical symptoms of chronic conditions existed, as well as a timeline of when I first began seeking treatment and a diagnosis for these conditions. Therefore, during the Social Security process, some records that I once felt were detrimental, became evidence that the onsets of my conditions occurred several years prior to any diagnosis. This information, along with more recent records that indicated the severity of symptoms progression, helped to establish the likelihood that my conditions were both chronic and progressive.
I was pleasantly surprised again when I went to deliver my medical records to my local Social Security office, the day after I submitted my application via the internet. The man I met with was polite and informative. He assisted with helping to fix a problem with the records of my past earnings in order to insure that my award amount was correct in the event that my claim was approved. Additionally, he made sure that I had his contact information in the event that I had any further questions while waiting for a determination on my claim. Almost four months later, this same man called me on a Saturday to let me know that Social Security approved my claim, and advised me of additional documentation that I needed to bring into the local office as a result. Again, I was very amazed.
In my opinion, my experience with Social Security was remarkable considering all of the horror stories out there. I believe that the following factors may have played key roles during the claim process:
1. I have two diagnosed conditions that are considered as qualifying conditions for permanent disability by the Social Security Administration.
2. I have at least seven years of consistent visits to my Primary Care Physician and multiple specialists for diagnostic and treatment purposes.
3. I took extra time to provide as much detailed information as possible while filling out the online application, including information on other minor health conditions not directly related to the two chronic conditions.
4. I had 100% support from my Primary Care Physician who had full knowledge of my past medical history as well as my current conditions, and how these conditions affect my daily life.
5. I made certain that Social Security had access to as many medical records as possible.
6. I made sure that the person, outside of the medical community, who knew the most about my conditions and the associated disabilities, was the person who could best support my claim of permanent disability if contacted by Social Security.
Prior to applying for benefits, I came across an internet site that clearly outlines the Social Security claims process. This site gives complete information on the entire process including application, denials, appeals, hearings, etc. It offers information about legal resources, how Social Security determines if a person is disabled, and answers many common questions that come up during the process. It is one of the best resources out there for anyone who may need to apply for SSDI or SSI benefits. I will include a link to this site under the “Resources for PD, PD-Plus, and Other Movement Disorders” section.
It was a blessing that my experience with Social Security went as smooth as it did. It alleviated the potential for additional stress in my life, which has a tendency to affect my condition in a negative manner. I hope that by sharing my experience and the information that I found valuable that someone else might also have a good experience when dealing with Social Security. My positive experience may have been the result of the depth of information supplied to Social Security, a little help from the Lord, or a combination of both. Regardless, attention to every detail and a little prayer, cannot hurt when dealing with the Social Security Administration.
Thursday, October 18, 2007
The Sleep Study
Although I originally added this information on the “My Personal Medical Journal September & October 2007” post, I decided that it was significant enough to expand on.
Several years ago and prior to any symptoms of Parkinsonism, I began having various symptoms related to sleep disorders. In my late teens I began having sleep paralysis, which is described as paralysis upon sleep initiation or awakening which can include visual hallucinations. Additionally, I began to have sudden onset sleep attacks, excessive daytime sleepiness, and minor cataplexy-like episodes about five years ago. These are all listed as symptoms of Narcolepsy. Also, in my late teens I began having episodes where I would act out my dreams by talking, screaming, kicking, hitting, running motions, etc. This is characteristic of REM Behavior Sleep Disorder. These problems still exist.
Since the onset of my motor symptoms, I now experience intermittent insomnia. Additionally, I also have multiple nocturnal awakenings that occur on a nightly basis.
The reason I decided to give this topic its own post, is because sleep related disorders are very common in both Parkinson’s Disease and Parkinson-Plus Disorders. Although I am not a foremost expert on this, I will offer the information that I now know, based on my internet research. The Parkinson-Plus Disorders that I do not mention, are those which I have not done adequate research on.
1. Narcolepsy has been specifically linked to Parkinson’s Disease. Narcolepsy can pre-date the onset of Parkinson’s Disease symptoms by several years.
2. REM Behavior Sleep Disorder is common in Parkinson’s Disease, Progressive Supranuclear Palsy, and Multiple System Atrophy. Some literature states that up to 80% of patients who have Multiple System Atrophy, also have REM Behavior Sleep Disorder. REM Behavior Sleep Disorder can pre-date any form of Parkinsonism onset by several years.
3. Insomnia is common in Parkinson’s Disease, Multiple System Atrophy, and Progressive Supranuclear Palsy.
4. Sleep Fragmentation, which is defined as multiple nocturnal awakenings, are common in Parkinson’s Disease, Multiple System Atrophy, and Progressive Supranuclear Palsy.
5. Sleep Apnea / Hypopnea is more common in Multiple System Atrophy and Progressive Supranuclear Palsy, than in Parkinson’s Disease.
Although there are numerous additional manifestations of sleep disorders in Parkinsonism related conditions, these exemplify the more common ones. Based on the information I have found, I can fully understand why my Movement Disorder Specialist wanted to confirm or rule out REM Behavior Sleep Disorder and Narcolepsy. The following is my recent experience with a sleep study that was done, which was supposed to determine whether or not I have these conditions. It is a duplication of the original post.
I went for a sleep study on the 9th, which was intended to confirm or rule out REM Behavior Sleep Disorder and Narcolepsy. Sleep disorders are common in Parkinson's Disease and Parkinson-Plus Disorders. Unfortunately, it is my opinion that the wrong type of study was done. I am not a doctor, so I plan to confirm this with my MDS in two weeks.
There are two main types of Polysomnograms that can be done, according to the information I found on the internet. One is specifically used to determine if sleep apnea is present. Basically, a patient is wired up with sensors and goes to sleep. After about 90 minutes, the patients is told to change sleeping positions. (Example: switch from sleeping on the back to sleeping on the side) After an additional 90 minutes the patient is awakened and fitted with a mask that is connected to a C-Pap machine. The patient goes back to sleep and is monitored while using the C-Pap machine. The second test is geared more toward ruling out REM Behavior Sleep Disorder and as part of the testing for Narcolepsy. The patient is still wired to various sensors, but is never awakened throughout the night or hooked up to a C-Pap machine.
I was given the first test. The problem with this is that I never entered into REM sleep during the test, due to frequent nocturnal arousals, as well as being wakened every 90 minutes. Therefore, having never entered into REM Sleep, it is my understanding, that it is impossible to determine if I do have REM Behavior Sleep Disorder. Additionally, because the second test that is used in conjunction with a Polysomnogram for ruling out Narcolepsy was never done, it is impossible to determine whether or not I have Narcolepsy.
The only information that was gained by the test that was performed, is that I have multiple episodes of "hypopnea" while I sleep. In general terms this means that I have episodes of shallow breathing of less than 50% of normal, that cause arousals during sleep. Unlike true apnea, I do not stop breathing altogether. It also confirmed that I have multiple nocturnal arousals of unspecified origin that occur. These unspecified arousals continued even while attached to the C-Pap machine. Additionally, my sleep onset latency time indicated excessive sleepiness, and I only achieve 61% sleep efficiency. Normal sleep efficiency is 85%.
Again, I am not a doctor, but after researching my results on the internet, they raised more questions than there were prior to the sleep study. For example, apnea-hypopnea episodes are common in Multiple System Atrophy. These episodes can be decreased with anti-Parkinson medications, which I do take at night. This raises the question of whether or not the episodes would have been more numerous or severe had I not taken my medications the night of the sleep study. Frequent nocturnal arousals are common in both Parkinson's Disease and Parkinson-Plus Disorders. One of my original complaints was excessive daytime sleepiness, which the sleep onset latency time and the sleep efficiency percentage both support. Unfortunately, there is now no determination on the REM Behavior Sleep Disorder or Narcolepsy, but also no real explanation on what these results mean in terms of my condition.
I fully intend to bring these issues up with my MDS for her interpretation. If I am correct in the opinion I have made based on my research, a second sleep study will need to be done. It angered me quite a bit, because I had raised the question about the type of study being done, a week prior to the appointment. I was told that this is the standard test. I now believe that I was misinformed.
As I have stated previously, I am not a doctor. I reached my opinions after doing research on the internet. I will depend on my Movement Disorder Specialist to determine if my opinions are correct. Once I am able to speak to her, I will update this post with that information. Even if the two main issues were not resolved with this sleep study, I am hopeful that the information that was gathered may help her better determine which form of Parkinsonism I have. I will know more about all of these issues in two weeks.
Several years ago and prior to any symptoms of Parkinsonism, I began having various symptoms related to sleep disorders. In my late teens I began having sleep paralysis, which is described as paralysis upon sleep initiation or awakening which can include visual hallucinations. Additionally, I began to have sudden onset sleep attacks, excessive daytime sleepiness, and minor cataplexy-like episodes about five years ago. These are all listed as symptoms of Narcolepsy. Also, in my late teens I began having episodes where I would act out my dreams by talking, screaming, kicking, hitting, running motions, etc. This is characteristic of REM Behavior Sleep Disorder. These problems still exist.
Since the onset of my motor symptoms, I now experience intermittent insomnia. Additionally, I also have multiple nocturnal awakenings that occur on a nightly basis.
The reason I decided to give this topic its own post, is because sleep related disorders are very common in both Parkinson’s Disease and Parkinson-Plus Disorders. Although I am not a foremost expert on this, I will offer the information that I now know, based on my internet research. The Parkinson-Plus Disorders that I do not mention, are those which I have not done adequate research on.
1. Narcolepsy has been specifically linked to Parkinson’s Disease. Narcolepsy can pre-date the onset of Parkinson’s Disease symptoms by several years.
2. REM Behavior Sleep Disorder is common in Parkinson’s Disease, Progressive Supranuclear Palsy, and Multiple System Atrophy. Some literature states that up to 80% of patients who have Multiple System Atrophy, also have REM Behavior Sleep Disorder. REM Behavior Sleep Disorder can pre-date any form of Parkinsonism onset by several years.
3. Insomnia is common in Parkinson’s Disease, Multiple System Atrophy, and Progressive Supranuclear Palsy.
4. Sleep Fragmentation, which is defined as multiple nocturnal awakenings, are common in Parkinson’s Disease, Multiple System Atrophy, and Progressive Supranuclear Palsy.
5. Sleep Apnea / Hypopnea is more common in Multiple System Atrophy and Progressive Supranuclear Palsy, than in Parkinson’s Disease.
Although there are numerous additional manifestations of sleep disorders in Parkinsonism related conditions, these exemplify the more common ones. Based on the information I have found, I can fully understand why my Movement Disorder Specialist wanted to confirm or rule out REM Behavior Sleep Disorder and Narcolepsy. The following is my recent experience with a sleep study that was done, which was supposed to determine whether or not I have these conditions. It is a duplication of the original post.
I went for a sleep study on the 9th, which was intended to confirm or rule out REM Behavior Sleep Disorder and Narcolepsy. Sleep disorders are common in Parkinson's Disease and Parkinson-Plus Disorders. Unfortunately, it is my opinion that the wrong type of study was done. I am not a doctor, so I plan to confirm this with my MDS in two weeks.
There are two main types of Polysomnograms that can be done, according to the information I found on the internet. One is specifically used to determine if sleep apnea is present. Basically, a patient is wired up with sensors and goes to sleep. After about 90 minutes, the patients is told to change sleeping positions. (Example: switch from sleeping on the back to sleeping on the side) After an additional 90 minutes the patient is awakened and fitted with a mask that is connected to a C-Pap machine. The patient goes back to sleep and is monitored while using the C-Pap machine. The second test is geared more toward ruling out REM Behavior Sleep Disorder and as part of the testing for Narcolepsy. The patient is still wired to various sensors, but is never awakened throughout the night or hooked up to a C-Pap machine.
I was given the first test. The problem with this is that I never entered into REM sleep during the test, due to frequent nocturnal arousals, as well as being wakened every 90 minutes. Therefore, having never entered into REM Sleep, it is my understanding, that it is impossible to determine if I do have REM Behavior Sleep Disorder. Additionally, because the second test that is used in conjunction with a Polysomnogram for ruling out Narcolepsy was never done, it is impossible to determine whether or not I have Narcolepsy.
The only information that was gained by the test that was performed, is that I have multiple episodes of "hypopnea" while I sleep. In general terms this means that I have episodes of shallow breathing of less than 50% of normal, that cause arousals during sleep. Unlike true apnea, I do not stop breathing altogether. It also confirmed that I have multiple nocturnal arousals of unspecified origin that occur. These unspecified arousals continued even while attached to the C-Pap machine. Additionally, my sleep onset latency time indicated excessive sleepiness, and I only achieve 61% sleep efficiency. Normal sleep efficiency is 85%.
Again, I am not a doctor, but after researching my results on the internet, they raised more questions than there were prior to the sleep study. For example, apnea-hypopnea episodes are common in Multiple System Atrophy. These episodes can be decreased with anti-Parkinson medications, which I do take at night. This raises the question of whether or not the episodes would have been more numerous or severe had I not taken my medications the night of the sleep study. Frequent nocturnal arousals are common in both Parkinson's Disease and Parkinson-Plus Disorders. One of my original complaints was excessive daytime sleepiness, which the sleep onset latency time and the sleep efficiency percentage both support. Unfortunately, there is now no determination on the REM Behavior Sleep Disorder or Narcolepsy, but also no real explanation on what these results mean in terms of my condition.
I fully intend to bring these issues up with my MDS for her interpretation. If I am correct in the opinion I have made based on my research, a second sleep study will need to be done. It angered me quite a bit, because I had raised the question about the type of study being done, a week prior to the appointment. I was told that this is the standard test. I now believe that I was misinformed.
As I have stated previously, I am not a doctor. I reached my opinions after doing research on the internet. I will depend on my Movement Disorder Specialist to determine if my opinions are correct. Once I am able to speak to her, I will update this post with that information. Even if the two main issues were not resolved with this sleep study, I am hopeful that the information that was gathered may help her better determine which form of Parkinsonism I have. I will know more about all of these issues in two weeks.
Organizing Your Personal Medical Files
Although this topic does not really affect directly how a patient deals with the medical community, I thought that it might be of benefit to share how I maintain my personal medical files.
I have two main conditions that affect my daily abilities. For better understanding, these conditions are severe enough that each are considered a disabling condition. Additionally, I have a few minor conditions that while not disabling, are surely affected by the two major conditions. For example:
Parkinsonism – major condition causing disability
Degenerative Joint Disease of the Spine – major condition causing disability
Osteoarthritis (knees) – minor condition not causing disability
Bursitis (hip) – minor condition not causing disability
Restless Leg Syndrome – minor condition not causing disability
Each patient’s medical condition(s) is / are unique to him / her. One patient may be dealing with one major chronic condition only, while another patient may have more than one major chronic condition. If a patient has additional minor conditions thrown into the mix, the variables are endless.
Based on my conditions above, I created a filing system for the sole purpose of quick and easy accessibility. Because I am dealing with more than one condition, I have a large quantity of records. While all of these records are important, not all of these records need to be provided to each physician. Therefore, due to the number of conditions I have been diagnosed with, plus the large volume of records associated with these conditions, I came up with the following file system:
File #1 – Complete set of all medical records in my possession
File #2 – Complete set of all medical records relative to Parkinsonism; includes any reports from specialist during the diagnosis process, diagnostic tests done to rule out other disorders, a copy of any related written documentation, and copy of personal medical journal entries that relate to Parkinsonism.
File #3 – Complete set of all medical records relative to Degenerative Joint Disease of the Spine; includes any reports from specialist during the diagnosis process, surgical reports, diagnostic tests, a copy of any related written documentation, and copy of personal medical journal entries that relate to the spine.
File #4 – Complete set of all diagnostic tests, regardless of type or conditions associated with these tests
File #5 – Complete set of all types of written documentation; includes written correspondence and personal medical journal.
Here is how this filing system assists me with quick and easy access to specific records. I will refer to the file number followed by a brief explanation for the purpose of that file.
File #1 – If I were to find myself in the position of having to see a new Primary Care Physician, that physician will need to have a complete set of my records. Although the physician’s office personnel would likely send out for copies of my records, the ability to offer the majority of my records during an initial appointment could give the physician a jumpstart on becoming familiar with my health related issues. Additionally, during an initial diagnosis process for an unidentified condition, a specialist should be provided a complete set of records, especially any results from diagnostic tests. This complete history, in addition to the exam, will assist the specialist who is attempting to determine a potential diagnosis and the course of action necessary to reach a diagnosis.
File #2 – Once a confirmed diagnosis of Parkinsonism was given, any specialist who I see now or will see in the future, only needs those records that are specific for Parkinsonism, unless otherwise requested. I have found that verbal information given to a specialist about other unrelated conditions is usually sufficient.
File #3 – Once a confirmed diagnosis of Degenerative Disc Disease of the Spine was given, any specialist I see in the future will only need those records that are specific to my history with this condition. This includes all documents related to diagnostic testing, and in my case, two surgeries. Again, I have found that verbally communicating the other unrelated conditions to a specialist is usually sufficient.
File #4 – Although this file comes in handy primarily when dealing with a new “unknown” potential chronic condition, I continue to keep this file for my own easy reference. For example, I will occasionally think about something I want to research about my conditions, and many times will pull my diagnostic test results for the correct medical terminologies or because it pertains specifically to the actual information on a specific diagnostic report that I want to research.
File #5 – This file gives a running history in writing and from my perspective, about every aspect of my health. It includes chronological information that can be used to gauge progression as well as the length of time that each condition has existed in my life. This information is invaluable not only when dealing with the medical community, but also when dealing with Social Security.
Essentially, I created my files based on my own experiences, which included the many specialists I have seen and what type of information each specialist required. Additionally, the documents in each file are arranged in chronological order by date, with the most recently dated document in front. I found that this not only assists me, but also assists a specialist who can look at my medical records from the beginning to the present, in chronological order. Again, each patient’s medical history is different. In my case, my system helps me spend less time figuring out what to give to a particular specialist, since I have created condition specific files. I only need to grab the file, make a copy, and proceed to the appointment. I do not have to spend hours digging through all of my records trying to determine which ones to provide to a specialist. Finally, I do not end up providing information overload to a specialist; by including information that is not relevent to the condition that specialist treats.
I have found that organization has become a key benefit for me, and it is just another aspect of dealing with my chronic conditions. It saves me time, which allows me to focus on the more important things in life.
I have two main conditions that affect my daily abilities. For better understanding, these conditions are severe enough that each are considered a disabling condition. Additionally, I have a few minor conditions that while not disabling, are surely affected by the two major conditions. For example:
Parkinsonism – major condition causing disability
Degenerative Joint Disease of the Spine – major condition causing disability
Osteoarthritis (knees) – minor condition not causing disability
Bursitis (hip) – minor condition not causing disability
Restless Leg Syndrome – minor condition not causing disability
Each patient’s medical condition(s) is / are unique to him / her. One patient may be dealing with one major chronic condition only, while another patient may have more than one major chronic condition. If a patient has additional minor conditions thrown into the mix, the variables are endless.
Based on my conditions above, I created a filing system for the sole purpose of quick and easy accessibility. Because I am dealing with more than one condition, I have a large quantity of records. While all of these records are important, not all of these records need to be provided to each physician. Therefore, due to the number of conditions I have been diagnosed with, plus the large volume of records associated with these conditions, I came up with the following file system:
File #1 – Complete set of all medical records in my possession
File #2 – Complete set of all medical records relative to Parkinsonism; includes any reports from specialist during the diagnosis process, diagnostic tests done to rule out other disorders, a copy of any related written documentation, and copy of personal medical journal entries that relate to Parkinsonism.
File #3 – Complete set of all medical records relative to Degenerative Joint Disease of the Spine; includes any reports from specialist during the diagnosis process, surgical reports, diagnostic tests, a copy of any related written documentation, and copy of personal medical journal entries that relate to the spine.
File #4 – Complete set of all diagnostic tests, regardless of type or conditions associated with these tests
File #5 – Complete set of all types of written documentation; includes written correspondence and personal medical journal.
Here is how this filing system assists me with quick and easy access to specific records. I will refer to the file number followed by a brief explanation for the purpose of that file.
File #1 – If I were to find myself in the position of having to see a new Primary Care Physician, that physician will need to have a complete set of my records. Although the physician’s office personnel would likely send out for copies of my records, the ability to offer the majority of my records during an initial appointment could give the physician a jumpstart on becoming familiar with my health related issues. Additionally, during an initial diagnosis process for an unidentified condition, a specialist should be provided a complete set of records, especially any results from diagnostic tests. This complete history, in addition to the exam, will assist the specialist who is attempting to determine a potential diagnosis and the course of action necessary to reach a diagnosis.
File #2 – Once a confirmed diagnosis of Parkinsonism was given, any specialist who I see now or will see in the future, only needs those records that are specific for Parkinsonism, unless otherwise requested. I have found that verbal information given to a specialist about other unrelated conditions is usually sufficient.
File #3 – Once a confirmed diagnosis of Degenerative Disc Disease of the Spine was given, any specialist I see in the future will only need those records that are specific to my history with this condition. This includes all documents related to diagnostic testing, and in my case, two surgeries. Again, I have found that verbally communicating the other unrelated conditions to a specialist is usually sufficient.
File #4 – Although this file comes in handy primarily when dealing with a new “unknown” potential chronic condition, I continue to keep this file for my own easy reference. For example, I will occasionally think about something I want to research about my conditions, and many times will pull my diagnostic test results for the correct medical terminologies or because it pertains specifically to the actual information on a specific diagnostic report that I want to research.
File #5 – This file gives a running history in writing and from my perspective, about every aspect of my health. It includes chronological information that can be used to gauge progression as well as the length of time that each condition has existed in my life. This information is invaluable not only when dealing with the medical community, but also when dealing with Social Security.
Essentially, I created my files based on my own experiences, which included the many specialists I have seen and what type of information each specialist required. Additionally, the documents in each file are arranged in chronological order by date, with the most recently dated document in front. I found that this not only assists me, but also assists a specialist who can look at my medical records from the beginning to the present, in chronological order. Again, each patient’s medical history is different. In my case, my system helps me spend less time figuring out what to give to a particular specialist, since I have created condition specific files. I only need to grab the file, make a copy, and proceed to the appointment. I do not have to spend hours digging through all of my records trying to determine which ones to provide to a specialist. Finally, I do not end up providing information overload to a specialist; by including information that is not relevent to the condition that specialist treats.
I have found that organization has become a key benefit for me, and it is just another aspect of dealing with my chronic conditions. It saves me time, which allows me to focus on the more important things in life.
Friday, October 12, 2007
The Importance of Keeping a Personal File of Your Medical Records
Up until five years ago, I never gave my medical records any thought. I presumed that those records were important references for my Primary Care Physicians, and that they held no benefit for me. This perception was not only naïve, but very incorrect. In time, I would discover that having copies of my own medical records enabled me to maneuver more quickly and efficiently within the medical community.
My education on the importance of my medical records was a slow and painful one. Early on I recall having initial visits with specialists as being non-productive, because the specialists required information contained in my medical records, which had either not been provided or were not given to me to take with me to the appointments. This resulted in wasted time, not only for me but also for the specialists. Other than a routine exam and requesting basic diagnostic blood work, often no further evaluation was done until the specialists had my records. Additionally, if the specialist’s office requested my records, additional time was added between the initial appointment and a second appointment.
This scenario served as my first lesson in my education. It only took a few of these initial appointments before I decided I was not going to allow this scenario to occur again.
I began preparing for an initial visit with a specialist on the same day it was determined that I would be referred to one. If my Primary Care Physician referred me to a specialist, before leaving his office I would talk to one of his office staff about getting copies of my medical records for the visit. Often the staff person would tell me that they would send the records to the specialist prior to my appointment. I would then tell the staff person that I preferred to hand carry my records with me to the appointment. Taking my own medical records with me to an appointment with a specialist provided a guarantee that the specialist would receive them.
Taking my medical records with me worked like a charm. As time moved forward, another scenario began to emerge. As I was going through the referral process from specialist to specialist, I was not getting any closer to finding any answers to my medical issues. This applied to both my spinal problems as well as the Parkinsonism. Additionally, each time I was referred to a new specialist, my Primary Care Physician’s office staff had to make the same copies of my medical records for every new specialist. Therefore, I decided that whenever I received copies of my medical records to give to a specialist, I would make a copy for my own personal records, prior to handing then over to the specialist. Additionally, anytime my Primary Care Physician sent me out for new diagnostic testing, I always requested a copy of the results for my personal records. Some of the benefits of doing this are as follows:
1. Eliminated the need for my Primary Care Physician’s staff from having to make copies of the same information each time I saw a new specialist; they only had to provide me with any records that were in addition to the ones I already had in my possession.
2. Allowed me flexibility when I found it necessary to see a specialist outside of my insurance without having to inform my Primary Care Physician prior to doing so.
3. Allowed me direct access to the medical terminologies that were being used in reference to my health, which allowed me to research my own health on the internet; this contributed to a better understanding of potential conditions and assisted with my ability to communicate with the specialists in an educated manner.
4. Allowed me to research various topics, conditions, etc., based on the information in my medical records, that were possibly associated with my symptoms; this provided enough education to have the ability to recognize when a physician made statement that were contrary to known facts.
5. Allowed me to compare what was in writing versus what may have been communicated verbally during an appointment.
This method worked for quite some time until I was faced with the inability to continue in the workforce. My initial intent was to discontinue working, only temporarily, while I went off my medications in order to obtain a diagnosis. So, initially I filed for short-term disability through the state. This process did not require me to provide medical records. It was only necessary to fill out a form and have my Primary Care Physician fill out a form as well. I received approval for my claim, and I was relieved to be able to concentrate on my health, without having to worry about a loss of income.
Approximately two months later, the state sent me a letter stating that a neurologist of their choosing must evaluate me. I will not go into any detail about my experience with that visit, except to say that it was a waste of taxpayers’ money. What I will elaborate on is the fact that I now had to obtain all of my medical records that pertained to my medical conditions, without exception. Up to this point, the only medial records that I was keeping for my personal files were the records I had received from my Primary Care Physician, which did not include any reports from past visits with specialists. Again, until faced with this new scenario, it never occurred to me that I should probably have copies of my medical records from every specialist who had evaluated me. I now had to contact each specialist’s office, request the records, and pay for the records. Since I had to provide these records to the state appointed neurologist, I made sure that before I provided her the copies, I made copies for my own personal files.
The situations that I encountered throughout the last five to ten years provided the lessons I needed to learn about the importance of having copies of all my medical records for my personal files. Of course, there are some missing pieces in my personal files, because it was difficult to recall every doctor I had met over the last ten years. Therefore, I have a set of medical records, that are as complete as possible, and I continue to add to them as necessary. Building my personal medical files became my greatest asset when I came to the realization that I was no longer able to be in the work force permanently. With this realization, I was fully aware that it meant that I would now have to deal with Social Security. Like many others who find it necessary to file for permanent disability through Social Security, I did not look forward to the task.
I began the process of filing my application for Social Security. I was very pleased to discover that I could complete the initial application online. Although I will detail the Social Security process on a future post, I would like to address the important part that my personal files of my medical records played in the process. Because I now have the majority of my medical records in my possession, I was able to provide Social Security the entire portfolio of my medical history. I believe that providing my medical records when I filed the initial application decreased the length of time I had to wait before I received a determination from Social Security.
Every patient has a right to request copies of their medical records. When a patient makes a request for their records, he / she will normally be required to fill out a request form. Additionally, I did find that most physicians charge a fee to the patient for providing the patient with copies of their records. The fees vary, but I found that many charged a fee per page. (Example: 25 cents per page) Some physician’s offices will make the copies while the patient waits, while others will provide the patient a future date to return to pick up the requested copies. Each physician’s office has its own policies.
In a future posting, I will address how I have set up my personal medical files. Although each patient’s situation is different, the patient with a chronic condition will more than likely have a large medical records file. Additionally, patients with multiple conditions will have an even larger medical records file. Therefore, I fine tuned how I have my medical records organized, based on my two main chronic conditions. Keeping my records in an organized filing system has proven to save time and has added convenience when I must access my files.
The point I want to make in closing is this: If you are a patient, who is in the diagnosis process or already has a diagnosis, make time to create your own personal medical files. There is a high probability that a chronically ill patient will need to provide medical records to various entities. The patient should take a proactive approach, and have those medical records in hand, so that he / she is not dependent on people in the medical community to provide those records in a timely manner. This is just another way in which a patient can take charge and become his / her own advocate, with respect to insuring that his / her medical needs are met in a timely and efficient manner.
My education on the importance of my medical records was a slow and painful one. Early on I recall having initial visits with specialists as being non-productive, because the specialists required information contained in my medical records, which had either not been provided or were not given to me to take with me to the appointments. This resulted in wasted time, not only for me but also for the specialists. Other than a routine exam and requesting basic diagnostic blood work, often no further evaluation was done until the specialists had my records. Additionally, if the specialist’s office requested my records, additional time was added between the initial appointment and a second appointment.
This scenario served as my first lesson in my education. It only took a few of these initial appointments before I decided I was not going to allow this scenario to occur again.
I began preparing for an initial visit with a specialist on the same day it was determined that I would be referred to one. If my Primary Care Physician referred me to a specialist, before leaving his office I would talk to one of his office staff about getting copies of my medical records for the visit. Often the staff person would tell me that they would send the records to the specialist prior to my appointment. I would then tell the staff person that I preferred to hand carry my records with me to the appointment. Taking my own medical records with me to an appointment with a specialist provided a guarantee that the specialist would receive them.
Taking my medical records with me worked like a charm. As time moved forward, another scenario began to emerge. As I was going through the referral process from specialist to specialist, I was not getting any closer to finding any answers to my medical issues. This applied to both my spinal problems as well as the Parkinsonism. Additionally, each time I was referred to a new specialist, my Primary Care Physician’s office staff had to make the same copies of my medical records for every new specialist. Therefore, I decided that whenever I received copies of my medical records to give to a specialist, I would make a copy for my own personal records, prior to handing then over to the specialist. Additionally, anytime my Primary Care Physician sent me out for new diagnostic testing, I always requested a copy of the results for my personal records. Some of the benefits of doing this are as follows:
1. Eliminated the need for my Primary Care Physician’s staff from having to make copies of the same information each time I saw a new specialist; they only had to provide me with any records that were in addition to the ones I already had in my possession.
2. Allowed me flexibility when I found it necessary to see a specialist outside of my insurance without having to inform my Primary Care Physician prior to doing so.
3. Allowed me direct access to the medical terminologies that were being used in reference to my health, which allowed me to research my own health on the internet; this contributed to a better understanding of potential conditions and assisted with my ability to communicate with the specialists in an educated manner.
4. Allowed me to research various topics, conditions, etc., based on the information in my medical records, that were possibly associated with my symptoms; this provided enough education to have the ability to recognize when a physician made statement that were contrary to known facts.
5. Allowed me to compare what was in writing versus what may have been communicated verbally during an appointment.
This method worked for quite some time until I was faced with the inability to continue in the workforce. My initial intent was to discontinue working, only temporarily, while I went off my medications in order to obtain a diagnosis. So, initially I filed for short-term disability through the state. This process did not require me to provide medical records. It was only necessary to fill out a form and have my Primary Care Physician fill out a form as well. I received approval for my claim, and I was relieved to be able to concentrate on my health, without having to worry about a loss of income.
Approximately two months later, the state sent me a letter stating that a neurologist of their choosing must evaluate me. I will not go into any detail about my experience with that visit, except to say that it was a waste of taxpayers’ money. What I will elaborate on is the fact that I now had to obtain all of my medical records that pertained to my medical conditions, without exception. Up to this point, the only medial records that I was keeping for my personal files were the records I had received from my Primary Care Physician, which did not include any reports from past visits with specialists. Again, until faced with this new scenario, it never occurred to me that I should probably have copies of my medical records from every specialist who had evaluated me. I now had to contact each specialist’s office, request the records, and pay for the records. Since I had to provide these records to the state appointed neurologist, I made sure that before I provided her the copies, I made copies for my own personal files.
The situations that I encountered throughout the last five to ten years provided the lessons I needed to learn about the importance of having copies of all my medical records for my personal files. Of course, there are some missing pieces in my personal files, because it was difficult to recall every doctor I had met over the last ten years. Therefore, I have a set of medical records, that are as complete as possible, and I continue to add to them as necessary. Building my personal medical files became my greatest asset when I came to the realization that I was no longer able to be in the work force permanently. With this realization, I was fully aware that it meant that I would now have to deal with Social Security. Like many others who find it necessary to file for permanent disability through Social Security, I did not look forward to the task.
I began the process of filing my application for Social Security. I was very pleased to discover that I could complete the initial application online. Although I will detail the Social Security process on a future post, I would like to address the important part that my personal files of my medical records played in the process. Because I now have the majority of my medical records in my possession, I was able to provide Social Security the entire portfolio of my medical history. I believe that providing my medical records when I filed the initial application decreased the length of time I had to wait before I received a determination from Social Security.
Every patient has a right to request copies of their medical records. When a patient makes a request for their records, he / she will normally be required to fill out a request form. Additionally, I did find that most physicians charge a fee to the patient for providing the patient with copies of their records. The fees vary, but I found that many charged a fee per page. (Example: 25 cents per page) Some physician’s offices will make the copies while the patient waits, while others will provide the patient a future date to return to pick up the requested copies. Each physician’s office has its own policies.
In a future posting, I will address how I have set up my personal medical files. Although each patient’s situation is different, the patient with a chronic condition will more than likely have a large medical records file. Additionally, patients with multiple conditions will have an even larger medical records file. Therefore, I fine tuned how I have my medical records organized, based on my two main chronic conditions. Keeping my records in an organized filing system has proven to save time and has added convenience when I must access my files.
The point I want to make in closing is this: If you are a patient, who is in the diagnosis process or already has a diagnosis, make time to create your own personal medical files. There is a high probability that a chronically ill patient will need to provide medical records to various entities. The patient should take a proactive approach, and have those medical records in hand, so that he / she is not dependent on people in the medical community to provide those records in a timely manner. This is just another way in which a patient can take charge and become his / her own advocate, with respect to insuring that his / her medical needs are met in a timely and efficient manner.
Tuesday, October 2, 2007
The Importance of Keeping a Health Journal
Over the years, I have had multiple symptoms for various conditions, and I have been evaluated by a variety of physicians for these symptoms and conditions. With this in mind, it is impossible for me to remember each symptom and its date of onset. Additionally, it is also impossible to remember all of the details surrounding the various conditions I am either diagnosed with, or the individual diagnostic tests and dates for numerous probable conditions that have been ruled out along the way. With respect to both symptoms and conditions, although I may remember the names of physicians who have evaluated me, I cannot rely on my memory for the dates of these visits or the outcomes. Therefore, although I have always prided myself on the ability to rely on my memory, I did discover that even the best memory is incapable of keeping track of all these issues. This is certainly true for someone who has been experiencing symptoms and searching for a diagnosis for any significant length of time.
Whether a patient has been diagnosed with a chronic condition or is still in the diagnosis process, keeping a health journal is a great way to document the patient’s health history. There are several benefits to keeping a health journal, which include the following:
1. Establishes a timeline for the initial onset of symptoms, which can be critical when seeking a diagnosis for certain conditions
2. Establishes a timeline for progression of symptoms as each new symptom is documented, or established symptoms worsen
3. Can be used as a tool for the patient to recall specific events that need to be discussed with a physician during an appointment
4. Can be used as a tool for physicians, if the patient has provided him / her a copy
5. Establishes a running history of diagnostic tests for conditions that have been ruled out or confirmed.
6. Establishes a running history of treatments for known conditions, as well as treatments for symptom alleviation where a cause has not yet been determined
7. Can be a great asset for the patient who is filing for disability benefits, again because it establishes a timeline and documents progression of the chronic condition
There are several methods that a patient can use when keeping a health journal. Some methods are better than others are, and I have tried quite a few. I now use a combination of two methods with respect to my journals, so I will share those methods. Essentially, there is not a right or wrong way to keep a journal as long as essential information is included. Some examples of essential information are:
1. Date of journal entry
2. Description of topic – new symptom, changes in established symptom, reaction to medication, outcome of a visit with a physician, etc.
3. Complete explanation about the topic which answers the basic questions of what, where, when, how, and why, although not all of these are applicable to every topic. (Example: Where was the patient when the new symptom emerged? How long did the new symptom last, or is it ongoing?)
4. Notations on telephone conversations with physicians or office personnel in the physician’s office – include date, time, topic, and follow-up information
The first type of health journal that I keep is a journal that I write in only as new issues come up. Although my symptoms change from day to day, I do not write in the journal daily, because the day-to-day changes in symptoms are typical of my condition. Actually, the symptoms can change from minute to minute, but again, this is typical for my condition. I use my journal to document new symptoms, changes in how my medications affect my symptoms, appointments with physicians, and any significant change in condition that may be of importance.
In the beginning, I began writing in the journal daily, but I found that this only added additional material for reading without offering additional benefit or information. Because I often will provide my Primary Care Physician with a copy of sections I think he needs to see, I wanted to insure that the amount written was not overwhelming. Therefore, by only writing about significant changes / events, I believe I increased the likelihood that my physician will take the time to read what I have provided to him. Besides, I am one of those people who just cannot stick to writing in a daily journal, regardless of the topic.
The second type of health journal is probably better referred to as a complete “list” of all health related issues. This “list” begins with my first surgery when I was seven years old, and it continues through today. Included on this list are major illnesses, symptoms, surgeries, medications (past and present), etc. I created this list in 2001; therefore, any information prior to 2001 came from memory recall. Although I am certain that there have been some omissions due to faulty memory, this list contains approximately 95% of all issues pertaining to my health. The following is a sample of how my health related issues are noted in this journal:
1976 – Tonsillectomy and Adenoid removal at 7 years old
1984 – Walking Pneumonia at 15 years old
1988 thru 1989 – First pregnancy w/ multiple complications including pre-term labor and premature delivery at 33 weeks gestation. 19-20 years old (Terbutaline prescribed throughout pregnancy for pre-term labor and Magnesium Sulfate administered in hospital to stop active labor at 26 weeks gestation.)
October 14, 2003 – While walking for exercise, I noticed that my right arm no longer swings while I walk.
Most of my health related entries are one-lined notations, with the exception of major surgeries or illnesses. My entire health history is now summarized in date order, on four pieces of paper. If more in depth information is required, my alternate journal can provide the additional details.
The benefit from this type of health journal or “list” is it enables me to hand my physician(s) a few sheets of paper that gives an almost complete history of my health. It provides the dates (approximate dates prior to 2001), the medical events, and the results if any. Not only does my journal (list) include my symptoms pertaining to my current diagnosis of Parkinsonism by date of onset, but it also includes unrelated symptoms and information, that may be of importance for a physician who is looking at the entire picture, when trying to make a more precise diagnosis. The physician may see an event on my list that occurred ten years ago, prior to the onset of my symptoms of Parkinsonism, which may actually have been an early potential indicator for one of the various forms of Parkinsonism. This entire picture may help my physician during the process of trying to determine which form of Parkinsonism I have.
I maintain my journals on my computer and keep a printed copy in my own personal medical file. I have found that by using the computer, I can print out specific entries easily, to forward to my physician(s) as needed. If I am ever unsure of an event related to my health, I have easy access to my history. Additionally, based on the methods I use, it takes very little time to add new information to the journals. The little extra effort to track my medical health accurately through my two journals became a great asset during my diagnosis process. I have the security of knowing that I have the ability to provide a complete medical history to my current or future physician(s), without the potential to leave out essential information.
As I have stated in previous posts, written documentation is a key factor when dealing with the medical community. My journals make up a large portion of my written documentation. My journals are just as important as my written communications with my physicians. The same theory holds true for both. Verbal information can be challenged, but written information through appropriate documentation / communication is unlikely to be questioned. Keeping a health journal adds yet another level of security and helps increase the odds, for the patient who is searching for a diagnosis.
Whether a patient has been diagnosed with a chronic condition or is still in the diagnosis process, keeping a health journal is a great way to document the patient’s health history. There are several benefits to keeping a health journal, which include the following:
1. Establishes a timeline for the initial onset of symptoms, which can be critical when seeking a diagnosis for certain conditions
2. Establishes a timeline for progression of symptoms as each new symptom is documented, or established symptoms worsen
3. Can be used as a tool for the patient to recall specific events that need to be discussed with a physician during an appointment
4. Can be used as a tool for physicians, if the patient has provided him / her a copy
5. Establishes a running history of diagnostic tests for conditions that have been ruled out or confirmed.
6. Establishes a running history of treatments for known conditions, as well as treatments for symptom alleviation where a cause has not yet been determined
7. Can be a great asset for the patient who is filing for disability benefits, again because it establishes a timeline and documents progression of the chronic condition
There are several methods that a patient can use when keeping a health journal. Some methods are better than others are, and I have tried quite a few. I now use a combination of two methods with respect to my journals, so I will share those methods. Essentially, there is not a right or wrong way to keep a journal as long as essential information is included. Some examples of essential information are:
1. Date of journal entry
2. Description of topic – new symptom, changes in established symptom, reaction to medication, outcome of a visit with a physician, etc.
3. Complete explanation about the topic which answers the basic questions of what, where, when, how, and why, although not all of these are applicable to every topic. (Example: Where was the patient when the new symptom emerged? How long did the new symptom last, or is it ongoing?)
4. Notations on telephone conversations with physicians or office personnel in the physician’s office – include date, time, topic, and follow-up information
The first type of health journal that I keep is a journal that I write in only as new issues come up. Although my symptoms change from day to day, I do not write in the journal daily, because the day-to-day changes in symptoms are typical of my condition. Actually, the symptoms can change from minute to minute, but again, this is typical for my condition. I use my journal to document new symptoms, changes in how my medications affect my symptoms, appointments with physicians, and any significant change in condition that may be of importance.
In the beginning, I began writing in the journal daily, but I found that this only added additional material for reading without offering additional benefit or information. Because I often will provide my Primary Care Physician with a copy of sections I think he needs to see, I wanted to insure that the amount written was not overwhelming. Therefore, by only writing about significant changes / events, I believe I increased the likelihood that my physician will take the time to read what I have provided to him. Besides, I am one of those people who just cannot stick to writing in a daily journal, regardless of the topic.
The second type of health journal is probably better referred to as a complete “list” of all health related issues. This “list” begins with my first surgery when I was seven years old, and it continues through today. Included on this list are major illnesses, symptoms, surgeries, medications (past and present), etc. I created this list in 2001; therefore, any information prior to 2001 came from memory recall. Although I am certain that there have been some omissions due to faulty memory, this list contains approximately 95% of all issues pertaining to my health. The following is a sample of how my health related issues are noted in this journal:
1976 – Tonsillectomy and Adenoid removal at 7 years old
1984 – Walking Pneumonia at 15 years old
1988 thru 1989 – First pregnancy w/ multiple complications including pre-term labor and premature delivery at 33 weeks gestation. 19-20 years old (Terbutaline prescribed throughout pregnancy for pre-term labor and Magnesium Sulfate administered in hospital to stop active labor at 26 weeks gestation.)
October 14, 2003 – While walking for exercise, I noticed that my right arm no longer swings while I walk.
Most of my health related entries are one-lined notations, with the exception of major surgeries or illnesses. My entire health history is now summarized in date order, on four pieces of paper. If more in depth information is required, my alternate journal can provide the additional details.
The benefit from this type of health journal or “list” is it enables me to hand my physician(s) a few sheets of paper that gives an almost complete history of my health. It provides the dates (approximate dates prior to 2001), the medical events, and the results if any. Not only does my journal (list) include my symptoms pertaining to my current diagnosis of Parkinsonism by date of onset, but it also includes unrelated symptoms and information, that may be of importance for a physician who is looking at the entire picture, when trying to make a more precise diagnosis. The physician may see an event on my list that occurred ten years ago, prior to the onset of my symptoms of Parkinsonism, which may actually have been an early potential indicator for one of the various forms of Parkinsonism. This entire picture may help my physician during the process of trying to determine which form of Parkinsonism I have.
I maintain my journals on my computer and keep a printed copy in my own personal medical file. I have found that by using the computer, I can print out specific entries easily, to forward to my physician(s) as needed. If I am ever unsure of an event related to my health, I have easy access to my history. Additionally, based on the methods I use, it takes very little time to add new information to the journals. The little extra effort to track my medical health accurately through my two journals became a great asset during my diagnosis process. I have the security of knowing that I have the ability to provide a complete medical history to my current or future physician(s), without the potential to leave out essential information.
As I have stated in previous posts, written documentation is a key factor when dealing with the medical community. My journals make up a large portion of my written documentation. My journals are just as important as my written communications with my physicians. The same theory holds true for both. Verbal information can be challenged, but written information through appropriate documentation / communication is unlikely to be questioned. Keeping a health journal adds yet another level of security and helps increase the odds, for the patient who is searching for a diagnosis.
Friday, September 28, 2007
The Emotional Side of a Chronic Illness – Part 2
After Diagnosis
I have already outlined many of the emotions that I experienced during the initial diagnosis process. Emotions such as anger, disappointment, frustration, depression, loss, mourning, and guilt, were emotions that came and went, often triggered by an unexpected event or change in my condition. Anger, disappointment, loss, and mourning are emotions that I have been able to overcome. They did not follow me into my post-diagnosis life. Unfortunately, frustration, depression, and guilt decided to follow me into the world of Parkinsonism. Additionally, feelings of being alone and fear had joined the party.
Although frustration, depression and guilt are still with me, they do not intrude in my life as often. Depression is directly tied in with medication and low dopamine levels. Frustration tends to appear more often than guilt. It is my opinion that I will continue to experience frustration primarily due to the continuous changes typical of my condition, which can happen at any time during the day without warning. Of the three emotions and associated feelings, I believe that guilt will soon be a part of the past.
When I first heard Parkinsonism was my diagnosis with the probability that I may have one of the PD-Plus conditions, fear and the feeling that I was alone with my condition, entered into my life.
I immediately set out doing research on all of the PD-Plus conditions, and I was not pleased with the information I was able to find. Parkinson’s Disease can be a devastating condition in its own right, but the PD-Plus conditions were far worse with respect to prognosis. This information was all it took to kick-start the fear, which took off running.
There were several aspects of fear that dominated my thoughts. If I am dealing with a PD-Plus condition, it may only be a matter of time that the Sinemet will no longer offer any benefit for my symptoms. This scenario means that I would always walk slowly with significant difficulty, and my speech would be so affected that verbal communication would always take significant effort. My major symptoms would never be improved, and I would have them with me every minute of the day. Honestly, my fear is whether I have the strength within me to deal with this possibility. I also know that PD-Plus conditions progress more rapidly and reduce life expectancy, and I am definitely not ready emotionally for either. Do not misunderstand, I do not fear death. However, I have so much more I want to accomplish before I am ready to leave this earth. Unfortunately, these fears cannot be put to rest for a while, because I am now in a waiting game to see how quickly my symptoms progress or if the medications decline in benefit.
I now understand how a person can feel alone, even if surrounded by a dozen people who love him / her. My husband understands this condition and how it affects my life better than anyone else does. Yet, his understanding is limited, because he does not have this condition. Without having the condition, he can only observe and imagine what it feels like to constantly fight your body, depend on medication to move and speak, and to experience all of the emotional aspects involved. Therefore, although my husband understands more than anyone else who is unaffected by Parkinsonism, I began to feel very alone with my condition. I had no one to talk to about the various struggles, feelings, symptoms, etc., who could understand completely what I face with this condition. Initially, I never thought that there might be someone else out there who was facing a potential PD-Plus diagnosis.
On July 20, 2007, I was again searching the internet for information regarding PD-Plus conditions. On this day, I came across a blog called PD Plus Me. The author of this blog was writing about his experiences with a medical condition that may in fact be one of the PD-Plus conditions. As I read the blog, I was completely overwhelmed, not only with the author’s complete detailed account of his experiences and struggles with his condition, but also the knowledge that I was not the only one.
As soon as I finished reading the author’s story, I sent him an email. I let him know that I had a recent diagnosis of Parkinsonism that could potentially be a Parkinson-Plus condition. I included a little history about my symptoms, and the reasons why they might be associated with a PD-Plus condition rather than regular Parkinson’s Disease. Additionally, I let him know that his blog was one of the most informative and in depth sites I had come across, with respect to Parkinson’s Disease, as well as the PD-Plus conditions.
Within a short time, the author, Dan Brooks, responded to the email I had sent. From that point on we began exchanging information on our conditions. With each email I sent regarding my experiences with my condition, I looked forward to receiving a response in order to compare symptoms. Although there were some differences, there were also so many similarities, and I was so thankful for the opportunity to communicate with another person who understood completely the struggles and emotions involved when dealing with a potential PD-Plus diagnosis.
Dan’s blog, which is such an open and honest account of his journey through the PD-Plus world, was the final inspiration I needed to begin this blog, which had been something I had wanted to do for a while. His blog not only details his own personal story, but also offers insight into how his faith in God has influenced how he deals with his condition. It is very impressive how his blog has evolved into a great source of information for Parkinson’s Disease and PD-Plus Conditions, and that all of this information is available in one place. Additionally, the words he writes are not only educational, but also inspirational and uplifting.
I now consider Dan a friend, as well as a fellow writer with a longing to help others who are dealing with the physical and emotional aspects of these life-changing conditions. Dan’s focus is on providing in depth information on Parkinson’s Disease and the various PD-Plus conditions, while my focus is on providing assistance for those who are experiencing problems with the medical community while searching for that elusive diagnosis. Both of our blog sites share PD-Plus as a primary focus. Therefore, he has added a link to my site on his blog, and I have added a link to his site on my blog. We agree that by doing this, we may have an opportunity to reach more people who are searching for answers and feel alone with their illness. You will find the link to Dan’s Blog under “Resources for PD, PD-Plus & Other Movement Disorders.” The link is titled, “PD Plus Me, Patient’s Personal Story.”
In the short period since PD-Plus entered my life, a new set of emotions and feelings have emerged, and have become powerful forces in fighting the negative emotions. Contentment, enthusiasm, hope, and peace are working hard to replace the negative emotions that this illness promotes. I am now content with my new life as it is today and no longer mourn the life I once had. This blog has created a renewed excitement and enthusiasm that what I share may help someone else who feels alone in their struggles. Hope has been renewed in me through the love and support of my husband and the unending encouragement he gives to me daily. Peace has been provided by my faith in the Lord and the several people who He has recently put in my path who are uplifting as well as encouraging. When I look around me, I now can see how truly blessed I am, in spite of my illness.
I have already outlined many of the emotions that I experienced during the initial diagnosis process. Emotions such as anger, disappointment, frustration, depression, loss, mourning, and guilt, were emotions that came and went, often triggered by an unexpected event or change in my condition. Anger, disappointment, loss, and mourning are emotions that I have been able to overcome. They did not follow me into my post-diagnosis life. Unfortunately, frustration, depression, and guilt decided to follow me into the world of Parkinsonism. Additionally, feelings of being alone and fear had joined the party.
Although frustration, depression and guilt are still with me, they do not intrude in my life as often. Depression is directly tied in with medication and low dopamine levels. Frustration tends to appear more often than guilt. It is my opinion that I will continue to experience frustration primarily due to the continuous changes typical of my condition, which can happen at any time during the day without warning. Of the three emotions and associated feelings, I believe that guilt will soon be a part of the past.
When I first heard Parkinsonism was my diagnosis with the probability that I may have one of the PD-Plus conditions, fear and the feeling that I was alone with my condition, entered into my life.
I immediately set out doing research on all of the PD-Plus conditions, and I was not pleased with the information I was able to find. Parkinson’s Disease can be a devastating condition in its own right, but the PD-Plus conditions were far worse with respect to prognosis. This information was all it took to kick-start the fear, which took off running.
There were several aspects of fear that dominated my thoughts. If I am dealing with a PD-Plus condition, it may only be a matter of time that the Sinemet will no longer offer any benefit for my symptoms. This scenario means that I would always walk slowly with significant difficulty, and my speech would be so affected that verbal communication would always take significant effort. My major symptoms would never be improved, and I would have them with me every minute of the day. Honestly, my fear is whether I have the strength within me to deal with this possibility. I also know that PD-Plus conditions progress more rapidly and reduce life expectancy, and I am definitely not ready emotionally for either. Do not misunderstand, I do not fear death. However, I have so much more I want to accomplish before I am ready to leave this earth. Unfortunately, these fears cannot be put to rest for a while, because I am now in a waiting game to see how quickly my symptoms progress or if the medications decline in benefit.
I now understand how a person can feel alone, even if surrounded by a dozen people who love him / her. My husband understands this condition and how it affects my life better than anyone else does. Yet, his understanding is limited, because he does not have this condition. Without having the condition, he can only observe and imagine what it feels like to constantly fight your body, depend on medication to move and speak, and to experience all of the emotional aspects involved. Therefore, although my husband understands more than anyone else who is unaffected by Parkinsonism, I began to feel very alone with my condition. I had no one to talk to about the various struggles, feelings, symptoms, etc., who could understand completely what I face with this condition. Initially, I never thought that there might be someone else out there who was facing a potential PD-Plus diagnosis.
On July 20, 2007, I was again searching the internet for information regarding PD-Plus conditions. On this day, I came across a blog called PD Plus Me. The author of this blog was writing about his experiences with a medical condition that may in fact be one of the PD-Plus conditions. As I read the blog, I was completely overwhelmed, not only with the author’s complete detailed account of his experiences and struggles with his condition, but also the knowledge that I was not the only one.
As soon as I finished reading the author’s story, I sent him an email. I let him know that I had a recent diagnosis of Parkinsonism that could potentially be a Parkinson-Plus condition. I included a little history about my symptoms, and the reasons why they might be associated with a PD-Plus condition rather than regular Parkinson’s Disease. Additionally, I let him know that his blog was one of the most informative and in depth sites I had come across, with respect to Parkinson’s Disease, as well as the PD-Plus conditions.
Within a short time, the author, Dan Brooks, responded to the email I had sent. From that point on we began exchanging information on our conditions. With each email I sent regarding my experiences with my condition, I looked forward to receiving a response in order to compare symptoms. Although there were some differences, there were also so many similarities, and I was so thankful for the opportunity to communicate with another person who understood completely the struggles and emotions involved when dealing with a potential PD-Plus diagnosis.
Dan’s blog, which is such an open and honest account of his journey through the PD-Plus world, was the final inspiration I needed to begin this blog, which had been something I had wanted to do for a while. His blog not only details his own personal story, but also offers insight into how his faith in God has influenced how he deals with his condition. It is very impressive how his blog has evolved into a great source of information for Parkinson’s Disease and PD-Plus Conditions, and that all of this information is available in one place. Additionally, the words he writes are not only educational, but also inspirational and uplifting.
I now consider Dan a friend, as well as a fellow writer with a longing to help others who are dealing with the physical and emotional aspects of these life-changing conditions. Dan’s focus is on providing in depth information on Parkinson’s Disease and the various PD-Plus conditions, while my focus is on providing assistance for those who are experiencing problems with the medical community while searching for that elusive diagnosis. Both of our blog sites share PD-Plus as a primary focus. Therefore, he has added a link to my site on his blog, and I have added a link to his site on my blog. We agree that by doing this, we may have an opportunity to reach more people who are searching for answers and feel alone with their illness. You will find the link to Dan’s Blog under “Resources for PD, PD-Plus & Other Movement Disorders.” The link is titled, “PD Plus Me, Patient’s Personal Story.”
In the short period since PD-Plus entered my life, a new set of emotions and feelings have emerged, and have become powerful forces in fighting the negative emotions. Contentment, enthusiasm, hope, and peace are working hard to replace the negative emotions that this illness promotes. I am now content with my new life as it is today and no longer mourn the life I once had. This blog has created a renewed excitement and enthusiasm that what I share may help someone else who feels alone in their struggles. Hope has been renewed in me through the love and support of my husband and the unending encouragement he gives to me daily. Peace has been provided by my faith in the Lord and the several people who He has recently put in my path who are uplifting as well as encouraging. When I look around me, I now can see how truly blessed I am, in spite of my illness.
Thursday, September 27, 2007
The Emotional Side of a Chronic Illness – Part 1
Pre-Diagnosis
I thought it was time to write about something on a more personal level. The majority of my prior posts have focused on issues patients face when dealing with the medical community and methods that can alleviate some of those issues. Although my previous posts represent my purpose for creating this blog, I think it is important to share the issues I have personally faced with respect to the Parkinsonism diagnosis. Therefore, I decided to begin by writing about how Parkinsonism affects me emotionally now, as well as how it affected me emotionally prior to the diagnosis.
My true diagnosis journey to Parkinsonism began in late 2003. It was at this time that I became fully aware that some of my symptoms were not related to the herniated cervical disc, which had been surgically addressed by a fusion in August of 2003. Because the fusion had corrected the symptoms that were related to the herniated disc, I was better able to recognize that the symptoms that remained were due to a separate cause. Therefore, in order to draw a line in the sand, I now state that my Parkinsonism related symptoms began in late 2003.
For the first couple of years, I did not actively search out a cause for the existing symptoms, nor the additional symptoms that began to emerge. Since many of the symptoms were not consistently present, I was fully aware that seeing a specialist would not produce any results. My previous Primary Care Physician and I made the decision to monitor the symptoms until they were progressed enough that a cause could be determined. I often provided written communication to my physician as symptoms changed or new symptoms emerged. Emotionally, this period caused frustration more than anything else did. I was frustrated because I wanted answers, yet I fully understood why I had to be patient.
The intense search for a diagnosis began in August of 2006. By this time, my symptoms had progressed to the point that without appropriate treatment, my ability to function in all aspects of daily life would have been non-existent. My symptoms were not only consistent and present, but they had progressed to a very severe level. For the first time since my symptoms began, I was frightened. It was at this point that I realized that I was not dealing with a minor disease. I knew that whatever it was, it had the power to rob me of my ability to walk, speak, or do any type of activity that required normal speed of movement. My biggest fear was that whatever I was dealing with might not have a treatment or cure.
I previously posted on how Parkinson’s Disease came into the picture that August day that I tried Sinemet. Between that day until June of 2007, three different Neurologists evaluated me. Two were Movement Disorder Specialists, and the other was a regular Neurologist. Without going through all the details again, I will only briefly describe the roller coaster of emotions during this time.
Anger was a huge emotion that I experienced. I was not angry at the prospect of having PD. I was angry about how I was being treated by the two Movement Disorder Specialists. One made statements contrary to known information about PD, focused on conditions that do not benefit from Sinemet use, and discounted or did not answer questions that my husband and I would bring up. The other specialist blew me off, because I had dared to question the methods of the first specialist. Angry does not even describe the depth of emotion that these experiences caused.
Disappointment was prevalent throughout this process. My third Neurologist was a wonderful, caring physician. Unfortunately, after 6 months, he felt that he did not have the necessary experience needed to diagnose the condition. This contributed partially to my disappointment. The majority of my disappointment stemmed from the knowledge that I was losing a wonderful physician who I knew I was able to work with. Additionally, this event meant that I had to start over again with yet another specialist.
Frustration was a daily emotion, which had multiple contributing factors. During "wearing off" times or when I went off medication for medical evaluations, the return of motor symptoms was very frustrating. The inability to speak normally or to walk with a normal rate of speed and fluency was not only exhausting but also frustrating to the point that I often spent the day in solitude on the couch. Additionally, I felt like I had to be one step ahead and ready for battle when dealing with the specialists, which became a major trigger of frustration. I became more frustrated than ever before with not knowing my diagnosis and I felt that the specialists due to their methods, attitudes, lack of interest, etc., were wasting time. Finally, my biggest frustration was the inability to explain to other people how it feels when the symptoms are present. I never felt that anyone understood completely what I was feeling and trying to express.
During this period, the big “D” entered my life. Yes, whenever my symptoms would return I would be hit with an overwhelming feeling of depression. At first, this really frightened me, because it was a feeling I had never been exposed to before. Initially, I really did not understand that the feeling was in fact, depression. Of course, I began to do some research on the internet, and the information I found explained it all. It appears that when the dopamine levels in the brain are low, such as in between doses or when completely off medications, depression can manifest in the same manner that motor symptoms return. Depression is known as a non-motor symptom of Parkinson’s Disease. This appeared to be what was happening in my case. If my motor symptoms returned to a significant degree, depression would envelope me also. The next dose of Sinemet, which helps with controlling the motor symptoms, would also alleviate the depression. Therefore, I only had to deal with depression during those times when my dopamine levels were low, which I tried to prevent as much as possible.
Loss and mourning go hand in hand. This was the beginning of the sense of loss and mourning for those losses. The feeling of loss involved many factors, primarily the loss of my ability to maintain the fast-paced lifestyle I had always thrived on. I mourned the loss of my ability to work. In many ways, I felt as if I had completely lost the person I once was and had no idea how to deal with the person I was becoming. Additionally, the loss of complete independence and having to rely on other people for certain things was one of the greatest aspects of my former self that I mourned. I had been independent my entire life, and for the first time, I began to realize that my independence and self-reliance were now becoming a part of my past life.
I believe that loss and mourning are such strong emotions for someone dealing with a chronic illness, that often they become barriers to acceptance of the chronic condition, even if the chronic condition has not been firmly diagnosed. It was not until I was able to accept my various losses associated with my condition and get through my mourning of those losses, that I was finally able to envision a positive future, despite my physical health. Once this occurred I began searching out new interests to replace the activities that I was no longer able to do. This enabled me to wake up each morning with new purpose and helped me to realize that there were many things I could still do.
Finally, guilt was a heavy feeling that entered my life. Although my health condition was beyond my control, I began to feel guilty for the burden I felt I was becoming, in the lives of my family, especially my husband. I was no longer able to contribute as much financially as I had been. My condition would sometimes dictate when and for how long we were able to go places. These are just two examples of situations that fueled my guilt. I spoke openly with him about this feeling many times, and each time he would reassure me that I was not the burden I perceived myself to be. He would always say that he fell in love with my heart and my mind, rather than the physical condition of my body. Despite his words, the feelings of guilt, whether rational or not, were and still are difficult to remove from my life.
Through this initial diagnosis process, there were only a handful of people who I shared all of the information I had with respect to my health. My faith in God played a key role whenever I had to deal with these emotional factors of my condition. There were many times when the emotions were so overwhelming, and the only way to get through the negative feeling, was to turn it over to God and let him take control. He always brought me through the rough patches without fail.
The Lord provided a partner here on earth that became my daily strength and the voice of reason whenever my emotions were running in high gear. This partner was my husband. When I needed to talk, he would listen for as long as needed, sometimes for several hours, allowing me to work through my emotions. If I needed to cry, which I rarely ever did prior to this disease, he would hold me for as long as I needed, until I completely cried out whatever emotion I was experiencing. My husband has only spoken words of encouragement with respect to my condition, and has never made me feel like our lives are less full because of it. When I am walking slowly, he holds my hand, and has learned to let me speak for myself even if it takes ten times longer than normal. When my husband has done everything he can to help me through a bad emotional event without success, he is the one who reminds me that it is time to give it to the Lord to deal with. My husband is my partner and best friend on earth. The Lord is my Savior who carries my burdens when we no longer can.
I thought it was time to write about something on a more personal level. The majority of my prior posts have focused on issues patients face when dealing with the medical community and methods that can alleviate some of those issues. Although my previous posts represent my purpose for creating this blog, I think it is important to share the issues I have personally faced with respect to the Parkinsonism diagnosis. Therefore, I decided to begin by writing about how Parkinsonism affects me emotionally now, as well as how it affected me emotionally prior to the diagnosis.
My true diagnosis journey to Parkinsonism began in late 2003. It was at this time that I became fully aware that some of my symptoms were not related to the herniated cervical disc, which had been surgically addressed by a fusion in August of 2003. Because the fusion had corrected the symptoms that were related to the herniated disc, I was better able to recognize that the symptoms that remained were due to a separate cause. Therefore, in order to draw a line in the sand, I now state that my Parkinsonism related symptoms began in late 2003.
For the first couple of years, I did not actively search out a cause for the existing symptoms, nor the additional symptoms that began to emerge. Since many of the symptoms were not consistently present, I was fully aware that seeing a specialist would not produce any results. My previous Primary Care Physician and I made the decision to monitor the symptoms until they were progressed enough that a cause could be determined. I often provided written communication to my physician as symptoms changed or new symptoms emerged. Emotionally, this period caused frustration more than anything else did. I was frustrated because I wanted answers, yet I fully understood why I had to be patient.
The intense search for a diagnosis began in August of 2006. By this time, my symptoms had progressed to the point that without appropriate treatment, my ability to function in all aspects of daily life would have been non-existent. My symptoms were not only consistent and present, but they had progressed to a very severe level. For the first time since my symptoms began, I was frightened. It was at this point that I realized that I was not dealing with a minor disease. I knew that whatever it was, it had the power to rob me of my ability to walk, speak, or do any type of activity that required normal speed of movement. My biggest fear was that whatever I was dealing with might not have a treatment or cure.
I previously posted on how Parkinson’s Disease came into the picture that August day that I tried Sinemet. Between that day until June of 2007, three different Neurologists evaluated me. Two were Movement Disorder Specialists, and the other was a regular Neurologist. Without going through all the details again, I will only briefly describe the roller coaster of emotions during this time.
Anger was a huge emotion that I experienced. I was not angry at the prospect of having PD. I was angry about how I was being treated by the two Movement Disorder Specialists. One made statements contrary to known information about PD, focused on conditions that do not benefit from Sinemet use, and discounted or did not answer questions that my husband and I would bring up. The other specialist blew me off, because I had dared to question the methods of the first specialist. Angry does not even describe the depth of emotion that these experiences caused.
Disappointment was prevalent throughout this process. My third Neurologist was a wonderful, caring physician. Unfortunately, after 6 months, he felt that he did not have the necessary experience needed to diagnose the condition. This contributed partially to my disappointment. The majority of my disappointment stemmed from the knowledge that I was losing a wonderful physician who I knew I was able to work with. Additionally, this event meant that I had to start over again with yet another specialist.
Frustration was a daily emotion, which had multiple contributing factors. During "wearing off" times or when I went off medication for medical evaluations, the return of motor symptoms was very frustrating. The inability to speak normally or to walk with a normal rate of speed and fluency was not only exhausting but also frustrating to the point that I often spent the day in solitude on the couch. Additionally, I felt like I had to be one step ahead and ready for battle when dealing with the specialists, which became a major trigger of frustration. I became more frustrated than ever before with not knowing my diagnosis and I felt that the specialists due to their methods, attitudes, lack of interest, etc., were wasting time. Finally, my biggest frustration was the inability to explain to other people how it feels when the symptoms are present. I never felt that anyone understood completely what I was feeling and trying to express.
During this period, the big “D” entered my life. Yes, whenever my symptoms would return I would be hit with an overwhelming feeling of depression. At first, this really frightened me, because it was a feeling I had never been exposed to before. Initially, I really did not understand that the feeling was in fact, depression. Of course, I began to do some research on the internet, and the information I found explained it all. It appears that when the dopamine levels in the brain are low, such as in between doses or when completely off medications, depression can manifest in the same manner that motor symptoms return. Depression is known as a non-motor symptom of Parkinson’s Disease. This appeared to be what was happening in my case. If my motor symptoms returned to a significant degree, depression would envelope me also. The next dose of Sinemet, which helps with controlling the motor symptoms, would also alleviate the depression. Therefore, I only had to deal with depression during those times when my dopamine levels were low, which I tried to prevent as much as possible.
Loss and mourning go hand in hand. This was the beginning of the sense of loss and mourning for those losses. The feeling of loss involved many factors, primarily the loss of my ability to maintain the fast-paced lifestyle I had always thrived on. I mourned the loss of my ability to work. In many ways, I felt as if I had completely lost the person I once was and had no idea how to deal with the person I was becoming. Additionally, the loss of complete independence and having to rely on other people for certain things was one of the greatest aspects of my former self that I mourned. I had been independent my entire life, and for the first time, I began to realize that my independence and self-reliance were now becoming a part of my past life.
I believe that loss and mourning are such strong emotions for someone dealing with a chronic illness, that often they become barriers to acceptance of the chronic condition, even if the chronic condition has not been firmly diagnosed. It was not until I was able to accept my various losses associated with my condition and get through my mourning of those losses, that I was finally able to envision a positive future, despite my physical health. Once this occurred I began searching out new interests to replace the activities that I was no longer able to do. This enabled me to wake up each morning with new purpose and helped me to realize that there were many things I could still do.
Finally, guilt was a heavy feeling that entered my life. Although my health condition was beyond my control, I began to feel guilty for the burden I felt I was becoming, in the lives of my family, especially my husband. I was no longer able to contribute as much financially as I had been. My condition would sometimes dictate when and for how long we were able to go places. These are just two examples of situations that fueled my guilt. I spoke openly with him about this feeling many times, and each time he would reassure me that I was not the burden I perceived myself to be. He would always say that he fell in love with my heart and my mind, rather than the physical condition of my body. Despite his words, the feelings of guilt, whether rational or not, were and still are difficult to remove from my life.
Through this initial diagnosis process, there were only a handful of people who I shared all of the information I had with respect to my health. My faith in God played a key role whenever I had to deal with these emotional factors of my condition. There were many times when the emotions were so overwhelming, and the only way to get through the negative feeling, was to turn it over to God and let him take control. He always brought me through the rough patches without fail.
The Lord provided a partner here on earth that became my daily strength and the voice of reason whenever my emotions were running in high gear. This partner was my husband. When I needed to talk, he would listen for as long as needed, sometimes for several hours, allowing me to work through my emotions. If I needed to cry, which I rarely ever did prior to this disease, he would hold me for as long as I needed, until I completely cried out whatever emotion I was experiencing. My husband has only spoken words of encouragement with respect to my condition, and has never made me feel like our lives are less full because of it. When I am walking slowly, he holds my hand, and has learned to let me speak for myself even if it takes ten times longer than normal. When my husband has done everything he can to help me through a bad emotional event without success, he is the one who reminds me that it is time to give it to the Lord to deal with. My husband is my partner and best friend on earth. The Lord is my Savior who carries my burdens when we no longer can.
Tuesday, September 25, 2007
Communicating With Your Physicians - Part 2
In part one, I addressed the importance of effective written and verbal communication when communicating with a Primary Care Physician or Specialist. I gave examples of various situations that often arise and the type(s) of communication I normally choose to utilize for those situations. Additionally, I outlined some of the benefits and protections that the patient gains through effective verbal communication, and to a greater degree through written communication.
In part two I am going to offer suggestions on how a patient can be more effective in both verbal and written communication. Keep in mind that effective communication is only beneficial if the patient has a patient friendly physician.
Verbal Communication
I will outline below the key elements of verbal communication that are particularly important when communicating with physicians, and I will include examples.
1. Prior to any visit with a physician, the patient should make a list of all issues that he / she wants to address during the visit. Example: new symptoms, changes in existing symptoms, medication changes, alternative treatment options, etc. This will insure that the patient does not leave anything out due to faulty memory. Obviously, there will not be effective communication at all, if the patient cannot remember what he / she wanted to discuss.
2. Listen to what the physician is communicating, more than how he / she is communicating. Example: A physician may speak in a tone that may give the impression that the physician is skeptical of or not interested in a patient’s medical situation. That may be the case, or it may be just the way that the physician speaks, and is not a reflection on his / her actual opinion. If a patient moves into a defensive mode because of the manner of speaking, he / she may miss the information that the physician is trying to provide. Rather than concentrating on “how the words” are spoken, the patient needs to maintain his / her focus “on the words” that are being spoken.
3. The patient needs to make sure that he / she fully understands what the physician is communicating. Example: If the patient is unclear of something the physician just said, the patient can repeat back to the physician (paraphrase) what the physician just said. The patient should then ask, “Is that correct?” Once the physician confirms that the words the patient repeated back to him / her are correct, the patient can ask additional questions if further clarification is necessary.
4. The patient must be willing to state his / her position or opinion in a polite but firm manner, even if it is not in agreement with the physician’s position or opinion. Example: The physician tells the patient that it is not necessary to order an MRI of the lower back, although the patient has had radiating back pain for over a year. An X-ray two months prior did not produce the cause. This patient has done research and now understands that the type of pain he / she has been experiencing could be caused by a herniated disc or some other soft tissue injury, which will can not be seen on standard X-rays. The patient should communicate to the physician the information he / she believes to be relevent, remind the physician of the duration of time the pain has been present, and firmly state that it is his / her understanding that an MRI of the lower back is the best way to determine the source of the symptoms. By making a firm, educated statement, the physician is now obligated to provide specific reasons for his / her position. On the other hand, the physician may now concur with the patient’s educated statements and request the MRI. (I have had both scenarios occur.)
5. The patient must communicate in a clear, descriptive, and detailed manner. Example: A patient is seeing his / her Primary Care Physician for an abdominal problem and says, “My stomach hurts when I eat, but it does not hurt every time I eat”. Although a physician should ask multiple questions in response to this vague statement, this may not happen. This vague statement leaves the option open for a physician, especially one who is running behind schedule, to make a quick diagnosis of convenience, rather than take the time to extract more information from the patient.
The patient with the abdominal problems must clearly communicate the following information:
1. Type of pain (burning, stabbing, constant, intermittent, etc.)
2. The specific portion of the abdominal area affected by this pain
3. When the pain occurs (after meals, before meals, before bed, etc.)
4. How often the pain occurs (after every meal, daily, weekly, etc.)
5. Conditions that contribute to the pain (types of food, time of day, exercise after a meal, exercise prior to a meal, etc.)
By providing clear, descriptive, and detailed information, the patient enables the
physician to offer a more accurate initial differential diagnosis. It also provides enough information for the physician to quickly determine what type of diagnostic tests should be done, as well as a possible initial treatment plan to ease symptoms. Communicating in this manner saves time during the visit by limiting the number of back and forth questions and answers. This is especially important when dealing with a physician who is running behind schedule and is trying to limit the time spent with each patient in order to catch up.
6. A patient should communicate with emotion and feeling, but should not react emotionally. (This is easier said than done.) Example: If the patient is told something by a physician that he / she disagrees with, the patient can verbally respond in a passionate manner in order to get a point across or for emphasis on that topic. However, if the patient becomes visibly angry or bursts into tears, this can be very detrimental, especially if the patient is being told that his / her physical symptoms are being caused by a mental health disorder. These types of emotional reactions or outbursts will only serve to strengthen the physician’s opinion that the symptoms are mental health related rather than being caused by a physical medical condition. Even if mental health is not in question, a physician may be less inclined to want to work with the patient, if the patient is unable to keep emotional outbursts under control.
7. Before allowing a visit to end, the patient needs to inquire and understand the follow-up protocol, as well as a date for the follow-up. Example: A patient is trying a new treatment for a chronic condition. Any new treatment should include a follow-up appointment, especially if associated with a chronic condition. The patient should not allow for an open-ended statement such as, “Try this and call me if there are any problems”. Because the patient has a chronic condition, there should already be regularly scheduled follow-up visits in place. If this is not the case, the patient should insist on a follow-up visit, including the date the follow-up would take place. Depending on circumstances, at the bare minimum, a telephone follow-up should at least be scheduled.
8. Prior to any appointment, a patient should research medical terminologies associated with the chronic condition, as well as the medical terminologies often associated with the field of medicine that the chronic condition falls under – Example: A patient has been given a differential diagnosis of Parkinson’s Disease and is seeing a Movement Disorder Specialist. During the visit the patient should use the most accurate medical terminologies when discussing
symptoms, previous diagnostic testing, medications, etc. This will allow the physician to get a more accurate picture of what the patient has been or is currently experiencing. The greatest benefit of using and understanding the correct medical terminologies is that it demonstrates to the physician that you have a firm understanding of not only the differential diagnosis, but of other associated conditions. Because the patient has educated himself, it makes it more difficult for a physician to offer a diagnosis of convenience or statements contrary to known facts about the condition.
Written Communication
I will outline below the key elements of written communication that are particularly important when communicating with physicians, and I will include a sample written correspondence.
1. If the written correspondence is in letterform, which is my preference, always include the date, name of physician, physician’s address, subject of correspondence, and correspondence delivery method.
2. In the opening paragraph, provide a short, detailed summary that includes the purpose for the correspondence. If it is a summary being sent to the patient’s Primary Care Physician, in reference to a visit with a specialist, include the specialist’s name, location, and the date of the visit. Likewise, if it is in reference to concerns with or changes in a patient’s medical condition, the date of the patient’s previous visit and the specific concerns or changes since that visit should be included.
3. In the body of the correspondence, provide the details clearly. It is particularly important to use appropriate medical terminologies when corresponding in writing. Each paragraph should be limited to one subject, concern, symptom change, etc. Too many subject matters in one paragraph can cause confusion and may promote a less clear picture of the patient’s purpose for addressing the subjects.
4. Once all individual subjects have been addressed, the next paragraph should include either a summarization, if known, of future visits with a specialist, treatments, goals, or a question on how the physician would like to proceed based on the information in the correspondence.
5. The final paragraph should include a statement of thanks to the physician. A sentence that states that the patient looks forward to hearing from the physician should be included. This type of statement lets the physician know that you expect some form of response to the correspondence.
Sample: Written Correspondence to Primary Care Physician
September 24, 2007
Dr. Physician’s Name
1111 Any Street. Suite 1
Any City, Any State, Zip
Re: Patient’s Name – New Symptoms and Medication Concerns
Via Facsimile: xxx-xxx-xxxx
Dear Dr. Physician’s Name
Since my last visit with you on July 1, 2007, I have had two new symptoms develop, that I believe relate to my condition. I am now experiencing insomnia and multiple awakenings during the night. Additionally, the medications I am taking for this condition are not controlling my symptoms as well as they were. As you may recall, I am taking medication A and medication B for the last six months with positive results up until two weeks ago.
Within the last two weeks, I have had multiple episodes of insomnia. Most evenings I got to bed at 10:00 P.M. It usually takes no longer than twenty minutes to fall asleep. I have had difficulty falling asleep on ten of the last fourteen nights. On those evenings it has taken anywhere from two to four hours to fall asleep. I have had no recent lifestyle changes or stressors that could be contributing to this problem.
The multiple awakenings during the night began to occur at the same time as the insomnia. This now appears a nightly occurrence. On most nights, I wake up approximately six times per night. Of those awakenings, only one can be attributed to needing to use the bathroom. The rest appear to have no known cause. Again, I have no recent lifestyle changes or stressors that could be contributing to this problem.
For the last six months, medication A and medication B have been sufficiently controlling most of my symptoms. I have been taking both medications every four hours as directed. Two weeks ago, I noticed that my symptoms would return three hours after taking the previous dose. As a result, I now have one hour per every four-hour period that I must deal with the symptoms at their maximum levels. This has caused a great deal of hardship for my family and me. This change in effectiveness has been consistent throughout the entire two-week period.
At this time, I think it may be necessary to return to the specialist in order to address the new symptoms and medication issues. The onset of new symptoms appears to correspond with the onset of medication issues. Historically, it normally takes four to six weeks before an appointment is available with the specialist. If this is the case currently, should I make an appointment to see you in the interim? If you do not believe that an appointment with you is necessary at this time, then I would like to request that a prescription sleep aid be called in to my pharmacy. If it enables me to get a few more hours of sleep each night, I will be better able to handle the four to six week wait to see the specialist. I also believe I can handle dealing with my symptoms returning every four hours. Additionally, if it is possible, I would appreciate if your office could expedite the referral to the specialist.
Please let me know how you would like to proceed. I look forward to hearing from you. As always, thank you in advance for your assistance.
Sincerely,
Patient With A Plan
This correspondence provides clear and accurate information to the Primary Care Physician with respect to the patient’s immediate concerns. Additionally, it provides a potential temporary solution for those concerns, until they can be addressed appropriately. In the manner written, this correspondence reflects the patient’s comfort level with the physician. The patient does not hesitate to state the need for a referral to a specialist, nor does the patient hesitate to offer input for an immediate course of action. A good doctor / patient relationship is evident, as well as the patient’s previous experience in dealing with the changes that can occur with a chronic condition.
Although personal information was not included, this correspondence represents my personal experience with this scenario. More often than not, my Primary Care Physician will call me, rather than have me come in for an appointment. This of course depends on the severity of the situation. Additionally, he has often been willing to call in prescriptions when situations warrant, as long as it does not pose a risk to my health. Again, because I have a good relationship with my Primary Care Physician, which was built through effective communication, there is a mutual understanding that my healthcare is a team effort.
The willingness to correspond directly with me outside of an office visit is something that is not common in the medical world today. In fact, this is the first Primary Care Physician that I have met, who goes above and beyond with respect to communication. There is no guarantee that a patient who communicates effectively will have the same exact results. However, the patient who communicates in an effective manner, both verbally and in writing, has a better chance of building a good relationship with his / her physician. That relationship, along with effective communication, provides the patient with the security that is essential when dealing with any chronic condition.
In part two I am going to offer suggestions on how a patient can be more effective in both verbal and written communication. Keep in mind that effective communication is only beneficial if the patient has a patient friendly physician.
Verbal Communication
I will outline below the key elements of verbal communication that are particularly important when communicating with physicians, and I will include examples.
1. Prior to any visit with a physician, the patient should make a list of all issues that he / she wants to address during the visit. Example: new symptoms, changes in existing symptoms, medication changes, alternative treatment options, etc. This will insure that the patient does not leave anything out due to faulty memory. Obviously, there will not be effective communication at all, if the patient cannot remember what he / she wanted to discuss.
2. Listen to what the physician is communicating, more than how he / she is communicating. Example: A physician may speak in a tone that may give the impression that the physician is skeptical of or not interested in a patient’s medical situation. That may be the case, or it may be just the way that the physician speaks, and is not a reflection on his / her actual opinion. If a patient moves into a defensive mode because of the manner of speaking, he / she may miss the information that the physician is trying to provide. Rather than concentrating on “how the words” are spoken, the patient needs to maintain his / her focus “on the words” that are being spoken.
3. The patient needs to make sure that he / she fully understands what the physician is communicating. Example: If the patient is unclear of something the physician just said, the patient can repeat back to the physician (paraphrase) what the physician just said. The patient should then ask, “Is that correct?” Once the physician confirms that the words the patient repeated back to him / her are correct, the patient can ask additional questions if further clarification is necessary.
4. The patient must be willing to state his / her position or opinion in a polite but firm manner, even if it is not in agreement with the physician’s position or opinion. Example: The physician tells the patient that it is not necessary to order an MRI of the lower back, although the patient has had radiating back pain for over a year. An X-ray two months prior did not produce the cause. This patient has done research and now understands that the type of pain he / she has been experiencing could be caused by a herniated disc or some other soft tissue injury, which will can not be seen on standard X-rays. The patient should communicate to the physician the information he / she believes to be relevent, remind the physician of the duration of time the pain has been present, and firmly state that it is his / her understanding that an MRI of the lower back is the best way to determine the source of the symptoms. By making a firm, educated statement, the physician is now obligated to provide specific reasons for his / her position. On the other hand, the physician may now concur with the patient’s educated statements and request the MRI. (I have had both scenarios occur.)
5. The patient must communicate in a clear, descriptive, and detailed manner. Example: A patient is seeing his / her Primary Care Physician for an abdominal problem and says, “My stomach hurts when I eat, but it does not hurt every time I eat”. Although a physician should ask multiple questions in response to this vague statement, this may not happen. This vague statement leaves the option open for a physician, especially one who is running behind schedule, to make a quick diagnosis of convenience, rather than take the time to extract more information from the patient.
The patient with the abdominal problems must clearly communicate the following information:
1. Type of pain (burning, stabbing, constant, intermittent, etc.)
2. The specific portion of the abdominal area affected by this pain
3. When the pain occurs (after meals, before meals, before bed, etc.)
4. How often the pain occurs (after every meal, daily, weekly, etc.)
5. Conditions that contribute to the pain (types of food, time of day, exercise after a meal, exercise prior to a meal, etc.)
By providing clear, descriptive, and detailed information, the patient enables the
physician to offer a more accurate initial differential diagnosis. It also provides enough information for the physician to quickly determine what type of diagnostic tests should be done, as well as a possible initial treatment plan to ease symptoms. Communicating in this manner saves time during the visit by limiting the number of back and forth questions and answers. This is especially important when dealing with a physician who is running behind schedule and is trying to limit the time spent with each patient in order to catch up.
6. A patient should communicate with emotion and feeling, but should not react emotionally. (This is easier said than done.) Example: If the patient is told something by a physician that he / she disagrees with, the patient can verbally respond in a passionate manner in order to get a point across or for emphasis on that topic. However, if the patient becomes visibly angry or bursts into tears, this can be very detrimental, especially if the patient is being told that his / her physical symptoms are being caused by a mental health disorder. These types of emotional reactions or outbursts will only serve to strengthen the physician’s opinion that the symptoms are mental health related rather than being caused by a physical medical condition. Even if mental health is not in question, a physician may be less inclined to want to work with the patient, if the patient is unable to keep emotional outbursts under control.
7. Before allowing a visit to end, the patient needs to inquire and understand the follow-up protocol, as well as a date for the follow-up. Example: A patient is trying a new treatment for a chronic condition. Any new treatment should include a follow-up appointment, especially if associated with a chronic condition. The patient should not allow for an open-ended statement such as, “Try this and call me if there are any problems”. Because the patient has a chronic condition, there should already be regularly scheduled follow-up visits in place. If this is not the case, the patient should insist on a follow-up visit, including the date the follow-up would take place. Depending on circumstances, at the bare minimum, a telephone follow-up should at least be scheduled.
8. Prior to any appointment, a patient should research medical terminologies associated with the chronic condition, as well as the medical terminologies often associated with the field of medicine that the chronic condition falls under – Example: A patient has been given a differential diagnosis of Parkinson’s Disease and is seeing a Movement Disorder Specialist. During the visit the patient should use the most accurate medical terminologies when discussing
symptoms, previous diagnostic testing, medications, etc. This will allow the physician to get a more accurate picture of what the patient has been or is currently experiencing. The greatest benefit of using and understanding the correct medical terminologies is that it demonstrates to the physician that you have a firm understanding of not only the differential diagnosis, but of other associated conditions. Because the patient has educated himself, it makes it more difficult for a physician to offer a diagnosis of convenience or statements contrary to known facts about the condition.
Written Communication
I will outline below the key elements of written communication that are particularly important when communicating with physicians, and I will include a sample written correspondence.
1. If the written correspondence is in letterform, which is my preference, always include the date, name of physician, physician’s address, subject of correspondence, and correspondence delivery method.
2. In the opening paragraph, provide a short, detailed summary that includes the purpose for the correspondence. If it is a summary being sent to the patient’s Primary Care Physician, in reference to a visit with a specialist, include the specialist’s name, location, and the date of the visit. Likewise, if it is in reference to concerns with or changes in a patient’s medical condition, the date of the patient’s previous visit and the specific concerns or changes since that visit should be included.
3. In the body of the correspondence, provide the details clearly. It is particularly important to use appropriate medical terminologies when corresponding in writing. Each paragraph should be limited to one subject, concern, symptom change, etc. Too many subject matters in one paragraph can cause confusion and may promote a less clear picture of the patient’s purpose for addressing the subjects.
4. Once all individual subjects have been addressed, the next paragraph should include either a summarization, if known, of future visits with a specialist, treatments, goals, or a question on how the physician would like to proceed based on the information in the correspondence.
5. The final paragraph should include a statement of thanks to the physician. A sentence that states that the patient looks forward to hearing from the physician should be included. This type of statement lets the physician know that you expect some form of response to the correspondence.
Sample: Written Correspondence to Primary Care Physician
September 24, 2007
Dr. Physician’s Name
1111 Any Street. Suite 1
Any City, Any State, Zip
Re: Patient’s Name – New Symptoms and Medication Concerns
Via Facsimile: xxx-xxx-xxxx
Dear Dr. Physician’s Name
Since my last visit with you on July 1, 2007, I have had two new symptoms develop, that I believe relate to my condition. I am now experiencing insomnia and multiple awakenings during the night. Additionally, the medications I am taking for this condition are not controlling my symptoms as well as they were. As you may recall, I am taking medication A and medication B for the last six months with positive results up until two weeks ago.
Within the last two weeks, I have had multiple episodes of insomnia. Most evenings I got to bed at 10:00 P.M. It usually takes no longer than twenty minutes to fall asleep. I have had difficulty falling asleep on ten of the last fourteen nights. On those evenings it has taken anywhere from two to four hours to fall asleep. I have had no recent lifestyle changes or stressors that could be contributing to this problem.
The multiple awakenings during the night began to occur at the same time as the insomnia. This now appears a nightly occurrence. On most nights, I wake up approximately six times per night. Of those awakenings, only one can be attributed to needing to use the bathroom. The rest appear to have no known cause. Again, I have no recent lifestyle changes or stressors that could be contributing to this problem.
For the last six months, medication A and medication B have been sufficiently controlling most of my symptoms. I have been taking both medications every four hours as directed. Two weeks ago, I noticed that my symptoms would return three hours after taking the previous dose. As a result, I now have one hour per every four-hour period that I must deal with the symptoms at their maximum levels. This has caused a great deal of hardship for my family and me. This change in effectiveness has been consistent throughout the entire two-week period.
At this time, I think it may be necessary to return to the specialist in order to address the new symptoms and medication issues. The onset of new symptoms appears to correspond with the onset of medication issues. Historically, it normally takes four to six weeks before an appointment is available with the specialist. If this is the case currently, should I make an appointment to see you in the interim? If you do not believe that an appointment with you is necessary at this time, then I would like to request that a prescription sleep aid be called in to my pharmacy. If it enables me to get a few more hours of sleep each night, I will be better able to handle the four to six week wait to see the specialist. I also believe I can handle dealing with my symptoms returning every four hours. Additionally, if it is possible, I would appreciate if your office could expedite the referral to the specialist.
Please let me know how you would like to proceed. I look forward to hearing from you. As always, thank you in advance for your assistance.
Sincerely,
Patient With A Plan
This correspondence provides clear and accurate information to the Primary Care Physician with respect to the patient’s immediate concerns. Additionally, it provides a potential temporary solution for those concerns, until they can be addressed appropriately. In the manner written, this correspondence reflects the patient’s comfort level with the physician. The patient does not hesitate to state the need for a referral to a specialist, nor does the patient hesitate to offer input for an immediate course of action. A good doctor / patient relationship is evident, as well as the patient’s previous experience in dealing with the changes that can occur with a chronic condition.
Although personal information was not included, this correspondence represents my personal experience with this scenario. More often than not, my Primary Care Physician will call me, rather than have me come in for an appointment. This of course depends on the severity of the situation. Additionally, he has often been willing to call in prescriptions when situations warrant, as long as it does not pose a risk to my health. Again, because I have a good relationship with my Primary Care Physician, which was built through effective communication, there is a mutual understanding that my healthcare is a team effort.
The willingness to correspond directly with me outside of an office visit is something that is not common in the medical world today. In fact, this is the first Primary Care Physician that I have met, who goes above and beyond with respect to communication. There is no guarantee that a patient who communicates effectively will have the same exact results. However, the patient who communicates in an effective manner, both verbally and in writing, has a better chance of building a good relationship with his / her physician. That relationship, along with effective communication, provides the patient with the security that is essential when dealing with any chronic condition.
Tuesday, September 18, 2007
Communicating With Your Physicians - Part 1
Communication between patient and physician is an important factor in the diagnosis process. At one time, I thought that verbal communication was the only form of communication necessary, when communicating with my physicians. I have since changed my opinion.
There was a time when I only saw my Primary Care Provider for an annual exam. I was normally a healthy person, and I was not prone to automatically seeing a physician for minor illness. Therefore, a quality doctor / patient relationship was not established with my primary care physicians during my healthy years.
Once I began having medical problems, I went through two Primary Care Physicians, prior to finding a patient friendly physician who was willing to work with me. Since I had become a frequent visitor to my Primary Care Physician’s office, the development of a good doctor / patient relationship was able to take root. Familiarity, as well as communication during appointments, helped to solidify a good working relationship between us. Unfortunately, he retired prior to my symptoms progressing enough for him to render a differential diagnosis.
My current Primary Care Physician inherited me because of my previous physician’s retirement. In the beginning, I was not sure that he and I would be a good match for an acceptable doctor / patient relationship. However, I did not throw in the towel. One afternoon we engaged in an intense verbal discussion by phone, which turned the potentially disastrous doctor / patient relationship into probably the best doctor / patient relationship I have had to this date. Clear communication and some human emotion had turned this relationship around.
While I was a patient of the now retired Primary Care Physician, I incorporated written communication into my doctor / patient relationship. As it became clear that I was potentially dealing with a chronic illness, I wanted to insure that every symptom I experienced was communicated and documented. My previous Primary Care Physician was very thorough at taking notes, but for my own peace of mind, I wanted my symptoms and other health related concerns, documented in writing from my perspective as the patient. Additionally, not all physicians are thorough when taking notes, and there are often key pieces of information that are left out. Therefore, when a patient brings up a previously discussed symptom at a future date, and if that symptom never made it into the notes, the physician is very likely not to recall ever discussing the symptom. Physicians see so many patients, that it is impossible for them to remember every word of every verbal communication with every patient.
It is now my standard practice to communicate with physicians verbally, as well as in writing. The type of circumstance dictates whether I utilize verbal communication, written communication, or both forms of communication. The following is a list of various scenarios, and the type of communication I will normally use:
1. Office visit with Primary Care Physician for minor illness or basic follow-up appointment – verbal communication
2. Initial visit with a Movement Disorder Specialist or other specialist – verbal and written communication. If time permits, I send a letter of introduction and copies of my medical records, prior to the appointment. I also make sure to bring backup copies with me to the appointment, in the event that my letter and medical record copies somehow did not make it into the physician’s hands.
3. Follow-up visit with a Movement Disorder Specialist or other specialist – verbal and written communication. Prior to the appointment, I write a brief summary including symptoms, changes in symptoms, medication problems, etc., to give to the specialist during the appointment. This summary not only helps me to remember the topics I want to verbally discuss during the appointment, but also serves as a permanent record that the information was provided to the physician on that date.
4. Non-office visit follow-up with Primary Care Physician after seeing a specialist – verbal and written communication. Following a visit with a specialist, I write an informational short report detailing the visit. This includes information pertaining to symptoms, treatment, topics discussed with the specialist, and future visits. Additionally, I include a copy of any written communication I had given to the specialist. I then fax these items to my Primary Care Physician’s office, and call to make sure they were received.
5. New concerns, which may or may not be related to my spinal condition or Parkinsonism, that I want my Primary Care Physician to be aware of – verbal and written communication. I call my Primary Care Physician’s office and provide a brief description of my concerns to his office assistant. I then write a more detailed summary of my concerns and fax it to my Primary Care Physician’s office. Again, I then place a call to his office to confirm that my fax was received.
Why do I now communicate with physicians both verbally and in writing?
Verbal Communication
Verbal communication is obviously the primary form of communication used during a visit with a physician. During a visit with a specialist, a patient verbally describes his / her symptoms, duration of symptoms, differential diagnosis, diagnostic tests performed, and current treatment(s) to date. Likewise, a physician may verbally ask questions for clarification, explain his / her findings after examining the patient, present a need for further diagnostic testing / evaluation, and render a preliminary diagnosis with a treatment plan. A patient will normally be able to ask questions, in order to make sure he or she fully understands what the physician has said. Even if the specialist does not render a diagnosis during the visit, if the verbal communication is adequate, the patient will understand the physician’s course of action necessary to assist with the diagnosis process.
Written Communication
I have found that written communication is an important tool, especially for the patient who has an undiagnosed chronic condition. Additionally, for patients who do have a diagnosis, written communication is a great way to keep your Primary Care Physician, as well as your entire team of physicians, informed on any changes in your condition, in between appointments. Aside from and including some of the situations that I have previously listed, here are a few examples of the benefits of establishing written communication with your physicians:
1. Patient provided written documentation of symptoms gives an exact description and complete information that leaves little room for misinterpretation. Verbal communications have the potential to allow incorrect interpretation and potentially incorrect note documentation with respect to the patient’s symptoms. Patient provided written documentation eliminates these issues, because it is the patient’s accurate, first hand account that can be added to the patient’s chart for future reference by the physician.
2. Patient provided written documentation of changes in the chronic illness helps in two manners. First, if it is provided to a physician during a visit, it gives an accurate, first hand account of those changes. Again, a patient can request that the documentation be added to the patient’s records / chart. If the patient is in-between visits, he / she can fax the written account of the changes to the physician’s office. This allows the physician to determine whether or not the issues need to be addressed immediately, or if the issues can be addressed at the patient’s next appointment. I have found that my Primary Care Physician will often call me to discuss my correspondence, and then he will determine the necessity for an earlier visit.
3. Patient provided written documentation provides security for the patient. In my experience, there are times when a physician may not recall a specific issue of a verbal conversation with a patient, and may not have taken detailed notes of that conversation. For example, a patient may be at an appointment and wants to talk about a symptom that had been discussed six months ago. The patient goes on to describe changes involving that symptom. The physician states he / she does not recall discussing this particular symptom and it is not noted in your patient file. In this scenario, a patient may then remind the physician of the previous verbal conversation and can offer to provide him / her with another copy of the written documentation. Providing written documentation to your physician and having it added to your patient file provides the patient the security of knowing that there is an accurate record of any concern, new symptom, medication issues, etc. in the physician’s possession.
Another aspect of security provided to the patient who provides written documentation, is that it tells the story of your “history” with respect to the diagnosed or undiagnosed medical condition. This history becomes a great asset if the patient applies for permanent disability through Social Security. When the Social Security Administration sends out a request for your medical records, your written documentation / correspondence with your physician, can assist in establishing degree of disability, progression, length of chronic illness, etc. It also provides evidence that the medical condition causing the disability has existed for an extended period of time, and it is likely to continue.
Here is my personal example of how written documentation saved me from an incorrect differential diagnosis that could have potentially caused an enormous delay is my search for a diagnosis. I have written of this previously, but it deserves additional attention at this point.
When my symptoms progressed to a point where every aspect of my daily life was affected, I made an appointment with my Primary Care Physician. My physician had previously not observed most of my symptoms, due to their intermittent frequency in the beginning. Being the master procrastinator that I am, by the time I finally went to see my physician, my symptoms were not only constant, but also profound. The most prominent features were my extremely slow walking pace and the quality of my speech, which was low in volume and slow. By this time, I had virtually no facial expressions or bodily animations when speaking.
When my physician saw me in this condition, he was shocked. After speaking to my husband and me and performing an exam, he stated that I was possibly bi-polar. He also did not recall ever hearing about these symptoms before this particular visit. My husband was with me for this appointment, and he began to explain to my physician that my symptoms reminded him of his mother, who had been diagnosed with Parkinson’s Disease prior to her death. He also let my physician know that he had never observed any signs of depression, bi-polar disorder, or any other mental health related condition in the six years that he has known me. My physician agreed to prescribe Sinemet, which I still take today. He also believed an appointment with a Psychiatrist was needed.
That afternoon someone from my physician’s office called me to give me the name of a Psychiatrist that my physician wanted me to see. I was annoyed that he was still going down this trail, but I wrote the name of the Psychiatrist down. At this point, the biggest thing that was bothering me was that I was certain I had previously told my physician about all of the symptoms.
That evening I began going through all of my copies of written correspondence that I had given to my physician on previous occasions. I not only found written correspondence from two years prior that had detailed many of the symptoms to that date, but also written correspondence to my previous physician that noted a few of the symptoms that had emerged during that time period. Both correspondences should have been in my patient records file at my physician’s office. So, at this point I became even more upset about the initial bi-polar opinion. I composed a new written correspondence, detailing the beneficial effect of Sinemet on my symptoms, as well as referencing my previous correspondences. I faxed this new correspondence along with the previous correspondences to my physician’s office. Within an hour of that fax, my physician called to apologize and let me know that I would receive a referral to a Movement Disorder Specialist, and that there was not a need to see the Psychiatrist at this time.
Had I not implemented written communication into my relationship with my physicians, I believe that valuable time might have been wasted while chasing after a mental health disorder that did not exist. Of course, a few months later I took the steps necessary, as I noted in a previous post, to insure that in the future, mental health conditions could not be offered as the source of my condition. Additionally, had I not retained copies of my previous written communications, I would not have been able to offer proof that I had already shared that information with my physician. I also would not have had the ability to prove that the symptoms even existed prior to the most recent appointment.
In the second part of communicating with your physicians, I will better define some key elements that can assist a patient on how to be more effective in communicating both verbally and in writing. I will also post a “sample” written correspondence.
There was a time when I only saw my Primary Care Provider for an annual exam. I was normally a healthy person, and I was not prone to automatically seeing a physician for minor illness. Therefore, a quality doctor / patient relationship was not established with my primary care physicians during my healthy years.
Once I began having medical problems, I went through two Primary Care Physicians, prior to finding a patient friendly physician who was willing to work with me. Since I had become a frequent visitor to my Primary Care Physician’s office, the development of a good doctor / patient relationship was able to take root. Familiarity, as well as communication during appointments, helped to solidify a good working relationship between us. Unfortunately, he retired prior to my symptoms progressing enough for him to render a differential diagnosis.
My current Primary Care Physician inherited me because of my previous physician’s retirement. In the beginning, I was not sure that he and I would be a good match for an acceptable doctor / patient relationship. However, I did not throw in the towel. One afternoon we engaged in an intense verbal discussion by phone, which turned the potentially disastrous doctor / patient relationship into probably the best doctor / patient relationship I have had to this date. Clear communication and some human emotion had turned this relationship around.
While I was a patient of the now retired Primary Care Physician, I incorporated written communication into my doctor / patient relationship. As it became clear that I was potentially dealing with a chronic illness, I wanted to insure that every symptom I experienced was communicated and documented. My previous Primary Care Physician was very thorough at taking notes, but for my own peace of mind, I wanted my symptoms and other health related concerns, documented in writing from my perspective as the patient. Additionally, not all physicians are thorough when taking notes, and there are often key pieces of information that are left out. Therefore, when a patient brings up a previously discussed symptom at a future date, and if that symptom never made it into the notes, the physician is very likely not to recall ever discussing the symptom. Physicians see so many patients, that it is impossible for them to remember every word of every verbal communication with every patient.
It is now my standard practice to communicate with physicians verbally, as well as in writing. The type of circumstance dictates whether I utilize verbal communication, written communication, or both forms of communication. The following is a list of various scenarios, and the type of communication I will normally use:
1. Office visit with Primary Care Physician for minor illness or basic follow-up appointment – verbal communication
2. Initial visit with a Movement Disorder Specialist or other specialist – verbal and written communication. If time permits, I send a letter of introduction and copies of my medical records, prior to the appointment. I also make sure to bring backup copies with me to the appointment, in the event that my letter and medical record copies somehow did not make it into the physician’s hands.
3. Follow-up visit with a Movement Disorder Specialist or other specialist – verbal and written communication. Prior to the appointment, I write a brief summary including symptoms, changes in symptoms, medication problems, etc., to give to the specialist during the appointment. This summary not only helps me to remember the topics I want to verbally discuss during the appointment, but also serves as a permanent record that the information was provided to the physician on that date.
4. Non-office visit follow-up with Primary Care Physician after seeing a specialist – verbal and written communication. Following a visit with a specialist, I write an informational short report detailing the visit. This includes information pertaining to symptoms, treatment, topics discussed with the specialist, and future visits. Additionally, I include a copy of any written communication I had given to the specialist. I then fax these items to my Primary Care Physician’s office, and call to make sure they were received.
5. New concerns, which may or may not be related to my spinal condition or Parkinsonism, that I want my Primary Care Physician to be aware of – verbal and written communication. I call my Primary Care Physician’s office and provide a brief description of my concerns to his office assistant. I then write a more detailed summary of my concerns and fax it to my Primary Care Physician’s office. Again, I then place a call to his office to confirm that my fax was received.
Why do I now communicate with physicians both verbally and in writing?
Verbal Communication
Verbal communication is obviously the primary form of communication used during a visit with a physician. During a visit with a specialist, a patient verbally describes his / her symptoms, duration of symptoms, differential diagnosis, diagnostic tests performed, and current treatment(s) to date. Likewise, a physician may verbally ask questions for clarification, explain his / her findings after examining the patient, present a need for further diagnostic testing / evaluation, and render a preliminary diagnosis with a treatment plan. A patient will normally be able to ask questions, in order to make sure he or she fully understands what the physician has said. Even if the specialist does not render a diagnosis during the visit, if the verbal communication is adequate, the patient will understand the physician’s course of action necessary to assist with the diagnosis process.
Written Communication
I have found that written communication is an important tool, especially for the patient who has an undiagnosed chronic condition. Additionally, for patients who do have a diagnosis, written communication is a great way to keep your Primary Care Physician, as well as your entire team of physicians, informed on any changes in your condition, in between appointments. Aside from and including some of the situations that I have previously listed, here are a few examples of the benefits of establishing written communication with your physicians:
1. Patient provided written documentation of symptoms gives an exact description and complete information that leaves little room for misinterpretation. Verbal communications have the potential to allow incorrect interpretation and potentially incorrect note documentation with respect to the patient’s symptoms. Patient provided written documentation eliminates these issues, because it is the patient’s accurate, first hand account that can be added to the patient’s chart for future reference by the physician.
2. Patient provided written documentation of changes in the chronic illness helps in two manners. First, if it is provided to a physician during a visit, it gives an accurate, first hand account of those changes. Again, a patient can request that the documentation be added to the patient’s records / chart. If the patient is in-between visits, he / she can fax the written account of the changes to the physician’s office. This allows the physician to determine whether or not the issues need to be addressed immediately, or if the issues can be addressed at the patient’s next appointment. I have found that my Primary Care Physician will often call me to discuss my correspondence, and then he will determine the necessity for an earlier visit.
3. Patient provided written documentation provides security for the patient. In my experience, there are times when a physician may not recall a specific issue of a verbal conversation with a patient, and may not have taken detailed notes of that conversation. For example, a patient may be at an appointment and wants to talk about a symptom that had been discussed six months ago. The patient goes on to describe changes involving that symptom. The physician states he / she does not recall discussing this particular symptom and it is not noted in your patient file. In this scenario, a patient may then remind the physician of the previous verbal conversation and can offer to provide him / her with another copy of the written documentation. Providing written documentation to your physician and having it added to your patient file provides the patient the security of knowing that there is an accurate record of any concern, new symptom, medication issues, etc. in the physician’s possession.
Another aspect of security provided to the patient who provides written documentation, is that it tells the story of your “history” with respect to the diagnosed or undiagnosed medical condition. This history becomes a great asset if the patient applies for permanent disability through Social Security. When the Social Security Administration sends out a request for your medical records, your written documentation / correspondence with your physician, can assist in establishing degree of disability, progression, length of chronic illness, etc. It also provides evidence that the medical condition causing the disability has existed for an extended period of time, and it is likely to continue.
Here is my personal example of how written documentation saved me from an incorrect differential diagnosis that could have potentially caused an enormous delay is my search for a diagnosis. I have written of this previously, but it deserves additional attention at this point.
When my symptoms progressed to a point where every aspect of my daily life was affected, I made an appointment with my Primary Care Physician. My physician had previously not observed most of my symptoms, due to their intermittent frequency in the beginning. Being the master procrastinator that I am, by the time I finally went to see my physician, my symptoms were not only constant, but also profound. The most prominent features were my extremely slow walking pace and the quality of my speech, which was low in volume and slow. By this time, I had virtually no facial expressions or bodily animations when speaking.
When my physician saw me in this condition, he was shocked. After speaking to my husband and me and performing an exam, he stated that I was possibly bi-polar. He also did not recall ever hearing about these symptoms before this particular visit. My husband was with me for this appointment, and he began to explain to my physician that my symptoms reminded him of his mother, who had been diagnosed with Parkinson’s Disease prior to her death. He also let my physician know that he had never observed any signs of depression, bi-polar disorder, or any other mental health related condition in the six years that he has known me. My physician agreed to prescribe Sinemet, which I still take today. He also believed an appointment with a Psychiatrist was needed.
That afternoon someone from my physician’s office called me to give me the name of a Psychiatrist that my physician wanted me to see. I was annoyed that he was still going down this trail, but I wrote the name of the Psychiatrist down. At this point, the biggest thing that was bothering me was that I was certain I had previously told my physician about all of the symptoms.
That evening I began going through all of my copies of written correspondence that I had given to my physician on previous occasions. I not only found written correspondence from two years prior that had detailed many of the symptoms to that date, but also written correspondence to my previous physician that noted a few of the symptoms that had emerged during that time period. Both correspondences should have been in my patient records file at my physician’s office. So, at this point I became even more upset about the initial bi-polar opinion. I composed a new written correspondence, detailing the beneficial effect of Sinemet on my symptoms, as well as referencing my previous correspondences. I faxed this new correspondence along with the previous correspondences to my physician’s office. Within an hour of that fax, my physician called to apologize and let me know that I would receive a referral to a Movement Disorder Specialist, and that there was not a need to see the Psychiatrist at this time.
Had I not implemented written communication into my relationship with my physicians, I believe that valuable time might have been wasted while chasing after a mental health disorder that did not exist. Of course, a few months later I took the steps necessary, as I noted in a previous post, to insure that in the future, mental health conditions could not be offered as the source of my condition. Additionally, had I not retained copies of my previous written communications, I would not have been able to offer proof that I had already shared that information with my physician. I also would not have had the ability to prove that the symptoms even existed prior to the most recent appointment.
In the second part of communicating with your physicians, I will better define some key elements that can assist a patient on how to be more effective in communicating both verbally and in writing. I will also post a “sample” written correspondence.
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