Uplifting Events This Week

Hi Friends,

This past week I needed a little pick me up, and there were two events that happened that really did the trick.

As some of you may remember from a previous post, I introduced Diane's blog to you. Diane has Multiple Sclerosis and has a wonderful blog. She not only reaches out to others with Multiple Sclerosis, but she also has a link section to 100 blogs that are written by people with chronic conditions in addition to Multiple Sclerosis. A few examples are links to blogs about cancer, fibromyalgia, mental health, etc. This is an inspirational example about not only how Diane helps those who share her condition, but taking it a step further, she is reaching out to those with other forms of chronic illness.

Additionally, Diane created a unique method of introduction to other blogs. She recently left me a comment that stated that I received an award. When I went to her site this is what I found. This is the exact post from her blog at: http://dj-astellarlife.blogspot.com/

Sunday, March 16, 2008
The Award Goes To:

The envelope please. The winner of the
You Make My Day Award goes to...
Parkinsonism - Road to Diagnosis
"I am a 39 year old female, and I have been diagnosed with Parkinsonism. (Parkinson's Disease or Parkinson's-Plus; yet to be determined) I am married to a wonderful and supportive husband, and I have two children. My daughter is 18 and just graduated from highschool. My son is 14, and is a freshman in highschool. After several years of undiagnosed medical problems, numerous surgeries, at least a dozen doctors, and multiple diagnostic disappointments, I am finally the closest to a diagnosis than I have ever been. It has been a long, frustrating road, but I have gained so much knowledge through my diagnostic journey. I decided to share my experiences, with the hope that it might help other patients avoid the diagnosis pitfalls that I encountered. Whether it is PD or any other chronic illness, if my story and my experiences with the medical community can help just one person obtain that illusive diagnosis more quickly and easily, then my long journey and the knowledge I gained, was well worth it. It is only due to my faith in God and the support of my husband, that I have been able to continue in the struggle to seek a diagnosis, as well as reach out to others like me. "

She then added a link to this blog at the end of the text.

As you can see, her introduction to my blog is not only unique, but it is also eye catching. By inserting my own words from this blog as a reference, she has let her readers know exactly what my blog is all about. If you have the opportunity, it is definitely worth a visit to Diane's blog. Her blog has something for everyone. I want to personally thank Diane for the pick me up she gave me. We all need that in our lives once in a while. I have found that it is the people that I have met through blogging are often the source of encouragement when I need it the most. Thank you again Diane.

On a separate note, I decided to give myself a pick me up last week. As you might recall, in November I rescued a dog from our local animal shelter. She has been a great source of comfort and companionship, especially on those days where the recliner by the fireplace seems to be the place where I need to be. Because Mary Jane has been such a trooper, I thought that she deserved a friend. Although she is a great source comfort to me, I felt that there were times that she may not have been getting enough play time, especially on my "bad" days. Therefore, last Wednesday I went to another local animal shelter and got her a friend. Here is a picture of Mary Jane and her new friend Eldon.

Eldon is quite a bit smaller than Mary Jane, but he does not seem to have a problem when they play or wrestle around. He is 7 pounds compared to her 12.5 pounds. My intuition was correct, and Mary Jane seems to fully enjoy Eldon, although it did take her a few days to get used to the idea of sharing me. In addition, on those days when I just do not have the energy to "play", they have eachother for companionship. Both dogs definitely enjoy sitting with me in the recliner during their down time. The two of them are quite a pair, and I enjoy knowing that Mary Jane has a friend that she can play with anytime she feels the need. Of course, both dogs are extremely spoiled by both my husband and myself.

An Update On My Letter Writing Campaign

Hi Everyone,

I just wanted to make sure that everyone knows that I am still here. I have finally completed all of the letters to the doctors. I wrote a total of nine doctors. Rather than sending them out one by one, I wanted to make sure that I sent them all at the same time. So, I will be making a trip to the Post Office today.

More than anything, I hope that by writing these letters, doctors may take a step back before presuming that a patient must have mental health problems, because he / she does not fall into a neat little category. Each person is different, and it is well known that Parkinson's Disease appears differently in each individual. No two people with PD will have the same symptoms. Some patients will exhibit slow progression, while others may progress more rapidly than expected. Just as each of us is unique, so is our Parkinson's Disease.

On an additional note, I hope to add a few new posts that may be useful to those who are still trying to find a diagnosis. I did get a bit sidetracked due to some extreme fatigue, as well as trying to get our taxes done. So, although I still fight daily fatigue, I do hope to get back to writing posts that relate back to my original intent for starting this blog.

This blog has opened up many doors for me personally. Through the contacts I have made because of this blog, I have learned so much from each new person I correspond with. Each person seems to touch my life in such a positive manner. These contacts help drive my desire to continue to write and share my experiences.

I will definitely offer an update if I receive any responses from the letters. For now, I am going to attempt to get some sleep, since insomnia has had me up for most of the night.

Blessings to you all.

Two Great New Blogs

I hope this post finds everyone doing well and in good spirits. I have felt a little better over the last few days which I am very thankful for.

I contacted a fellow blogger after finding her blog and reading it. It is called “Life With Shaky”. It is written by a wife, whose husband has been diagnosed with Parkinson’s Disease. Additionally, her husband recently began writing his own blog called “Shaky’s World”. I believe that their combined blogs give great insight to not only how Parkinson’s Disease affects the person who has it, but how it affects the spouse. With their permissions I am adding links to both of their blogs. I believe it will be interesting and very informative to read about each of their perspectives as time goes on.

On a different note, I have begun writing letters to all of the former doctors that I have seen throughout my entire diagnosis process. I intend to write to doctors who not only were helpful, but especially to those who were not quite so helpful. I think it is important to let the doctors who tried hard to help me, know that I thank them and inform them of my diagnosis. On the flip side, those doctors that were not helpful and sometimes downright arrogant might find it interesting that their depression theories and other theories were incorrect.

I will be including the address for my blog in all of the letters. Hopefully, with the many links provided on this blog, along with my detailed story included on my blog, those doctors might think twice before presuming that a patient’s symptoms are mental health related. Hopefully, they might find that it is much more beneficial and morally correct to take each patient they see seriously. If only one of the doctors that I had a bad experience with takes the time to do a little reading, he or she may find that the negative experiences I had with the medical community are all too common. Although we share knowledge with one another through our blogs, I believe that doctors can gain a little education from our blogs also. This is my hope, and this is what I am currently working on. I will offer further updates on this topic, if I receive any feedback from any of the doctors that I write.

Are There Any Decent Specialists Out There?

Since my last post I have become enlightened in several ways, so this post will touch on a few different topics.

After the holidays I was hit with a change in my physical symptoms which included excessive fatigue, an increase in daytime sleepiness, drops in my blood pressure, and just a general feeling of lethargy. At first I thought it was due to over-exertion during the holidays. I have had plenty of down time since then, and these changes in symptoms have only improved partially. Adding more salt to my diet has helped with my blood pressure immensely, but the other symptoms are not as improved as I would have hoped. I am now wondering if this is just another new phase or change due to PD that has entered my life that I will just have to adjust to. I will be discussing this with my MDS next month.

I received a comment from Diane on my previous post, and I have exchanged a few emails with her. Diane has a diagnosis of Multiple Sclerosis, and she has a great site that I have added a link to.

Although I write primarily about Parkinson related diseases and dealing with the medical community, these recent emails with Diane reminded me that my main purpose for starting this blog, was to try to help others who are struggling with the medical community, regardless of the type of chronic illness. I was further reminded that in the very beginning of my own search for a diagnosis, I was told that there was a possibility that I might have Multiple Sclerosis, so I have done quite a bit of research in the past on that disease. From what I have read, it is not uncommon for a patient with PD, especially females, to originally be told they may possibly have MS. Additionally, from my own experience, it took approximately three years to completely rule out MS.

Multiple Sclerosis and Parkinson’s Disease are both neurological conditions. I know that in theory, a Movement Disorder Specialist deals with the diagnosis and treatment of PD, and a Neurologist who specializes in Multiple Sclerosis deals with the diagnosis and treatment of MS. I have been to both types of specialists. The neurologist that was originally recommended to me by the MS Society was wonderful, and he did finally rule out MS. On the flip side, I had been examined by a Movement Disorder Specialist who was highly recommended in the Parkinson’s community, and I was told that I was too young to have PD. My own GP and a general Neurologist did more for me during the last two years, than the multitude of specialists that I have come in contact with, not including my current Movement Disorder Specialist, who is awesome. In my experience, the “extra” training that a specialist receives for specific neurological conditions, does not guarantee that a specialist will give you an accurate diagnosis. Additionally, a patient may get lucky when they see a specialist that is referred by specific organizations, or they may be out of luck. I have experienced both scenarios.

So, I will now get to the point. I believe that the best referral for specialists, or any other type of doctor, comes directly from other patients. In earlier posts I mentioned that I had added a link section for specialists that other readers would highly recommend. I began that section by adding the link to the Parkinson’s and Movement Disorder Institute, which is where my Movement Disorder Specialist practices. This section is not limited to Movement Disorder Specialists or Parkinson’s Disease. If you have a general neurologist who diagnosed and treats your neurological condition, who you would highly recommend, then please let me know. If you have a neurologist who specializes in Multiple Sclerosis, but diagnosed and treats your non-MS neurological condition, then get that specialist on the list. My goal is to eventually have at least two neurological related specialists that come highly recommended by you, for each state. These are the specialists, who not only have the knowledge, but also have the desire, concern, and willingness to help both the diagnosed and yet to be diagnosed. These are the specialists that think out of the box, especially since many patients with neurological conditions do not initially fit neatly into a box of predetermined criteria for diagnosis.

Since I began blogging I have learned so much from all of the people I have come in contact with, through their stories and experiences. With each new story I read, I gain new knowledge and insight, not only about Parkinson’s Disease, but about the similar physical, mental and emotional struggles that neurological conditions in general have in common. I just want to say a big “thank you” to those I have met through your stories and to those who I have not met, whose stories I have yet to read. Together, we can all make a difference just by reaching out through our words and our knowledge that we try to share. We are a great support for those who already have a diagnosis, but may even be a greater support for those still seeking a diagnosis. I found this to be true during my diagnosis process. With that being said, let me say once again, if you have a great specialist, please let me know.

Fluctuations In Parkinson’s Disease

Although the main focus of this blog is to try to assist other people with chronic illnesses to more effectively deal with the medical community, I believe that it is also important to include how chronic illness can affect daily life. Having a chronic illness not only affects the life of the person with the illness, but it also affects the lives of our loved ones.

Since the end of the holiday season I have been dealing with extreme fatigue and low blood pressure, which have literally made it impossible to do many of the things that I can still do, despite having Parkinson’s Disease. I am fortunate that I no longer have to attempt to work, and I have been able to take the time necessary to focus completely on this recent turn of events in my disease. If I were still working at this point, I can honestly say that I would have been completely unable to function in the workforce, regardless of willpower, medications, or positive thinking. These past several weeks have served as a reality check for me in that respect. It is also the reason why I have not made any recent entries to this blog.

It is difficult to pinpoint the exact cause which brought about the changes in my condition. It may have been that I over extended myself during the holiday season. The frequent drops in blood pressure throughout the day could definitely cause extreme fatigue, so I have increased my salt intake to see if that helps. There could be a number of sources, and it is unlikely that I will be able to determine the exact cause for the recent down turn in my physical well-being. I have now come to believe that weekly, daily, hourly, or from minute to minute, that fluctuations in motor and non-motor symptoms of Parkinson’s Disease are just another component of the disease that we must deal with. I can honestly admit that this is one of the most difficult aspects of having Parkinson’s Disease that I deal with.

I am slowly beginning to realize that various circumstances play key roles in the management of this disease. Although I am on the best medication regimen I have ever been on, I know that extra physical activity, stress, and fatigue all affect how well the medications work. I recall two days during the holidays in particular, when I had medication failures due to over-exertion. I went from being “on” to “off” in an instant, before my next scheduled dose of Sinemet was due. I now know that if I physically do anything beyond my “normal” daily routine, that I may have to take the Sinemet at closer intervals. In order to lessen the amount of stress in our lives, my husband and I refrain from activities or circumstances that could contribute to increased stress levels, to the best of our abilities. Sometimes stress is unavoidable, and we deal with its effects as necessary. Fatigue is the one aspect of this disease and the effects it has on my physical well-being, which I am still trying to find a solution for. For now, I take medication each night for (presumed) REM Behavior Sleep Disorder, and I nap as often as needed during the day.

The numerous and continuous changes that occur as a result of Parkinson’s Disease, not only affect me, but also affect my husband. I know that it must be difficult for him to watch me struggle at times and not be able to “fix” the issues that cause the struggles. I must say that I am very blessed to have this man in my life for many reasons. Aside from being over-protective at times, he always seems to handle each new struggle with ease. He never complains when I am too tired to participate in an activity. If I become discouraged about something I am no longer capable of doing, he offers support by just listening or offering ideas for new things to try that I am capable of doing. More important than anything else, he never makes me feel like this disease is a burden in our lives. Parkinson’s Disease is just another aspect of life that we have to deal with. His positive attitude is probably the primary key factor in my own acceptance of this disease and the continuous changes that occur. I know that there are many people who do not have a strong support partner, and I can only imagine how much more difficult it is to face a chronic illness alone.

Extended family members are also affected by my Parkinson’s Disease, but to a lesser degree. Extended family members do not spend every day with me, so they are less likely to see the extent or intensity of this disease. Most of the members of my extended family know that I have Parkinson’s Disease, but they have not witnessed any of the effects. However, there are a few members of my family who I do see on a regular basis. These people have observed enough to key in to whether I am having a good day or a bad day. A few can even point out when my symptoms start to break through or I begin to experience a wearing off effect, even when those symptoms are very subtle. In my opinion, it is the people who I spend the greatest amounts of time with who are affected the most, because they see the symptoms more often. For those I do not see so often, it is like the saying implies, “Out of sight; out of mind”. Again, these are only my opinions, which I base on my own experiences.

Despite the continuous changes that this disease brings into my life and the adjustments to those changes that have to be made, I am thankful for the life that I have. There are far worse diseases out there than Parkinson’s Disease. Although there is not a cure for Parkinson’s Disease yet, there are medications that can help to treat the symptoms. I would much rather have Parkinson’s Disease than to be told I have a condition that has no effective treatment or a condition that is terminal.

Although I am not feeling as well as I did prior to the holidays, I am continuing to try to make little changes to see if I can get back to a happy medium. Hopefully some of these changes will jump kick my body back in gear. Essentially, I am trying to figure out if these recent changes are temporary or a more permanent change with respect to my Parkinson’s Disease. Time will tell. In the interim, I hope to continue writing, even if I am unable to write as often as I would like.

Reflections of 2007

I hope that 2008 is off to a great start for everyone. There have been so many new and wonderful people that I have met during the past year that either have a diagnosis of a form of Parkinsonism or are still struggling to obtain a diagnosis. My prayer for those who already have a diagnosis is that they have a doctor who continually works with them in order to maintain the best quality of life. For those still struggling for that illusive diagnosis, my prayer is that they will receive those long awaited for answers in 2008.

2007 was a revealing year in my life with respect to my health. After many years, I finally received a confirming diagnosis of Parkinson’s Disease. (Akinetic-Rigid sub-type) As many of you know, although Parkinson’s Disease is chronic and progressive, it was a relief to finally be able to put a name to the condition that has been treated through medication for almost one and a half years.

As I previously stated, 2007 brought many new people into my life. Had I not been aggressively searching for answers to my health, I would have not met these people who have blessed and enriched my life so much. The common tie between all of us is Parkinson’s Disease or another form of Parkinsonism.

Although I now have a wonderful doctor who has helped me to find the best medication balance, which allows me to have fewer breakthroughs; I did find that the rush of the holidays did have an affect on my disease. There were a few times when I let adrenaline kick in, and the affect on my physical condition paid the price. I now realize that I may have to adjust the Sinemet dosages in order to compensate for additional physical activity. There were two nights in particular that my body completely “crashed”, and my symptoms came on full force. This came as a surprise to me when it happened.

Christmas has always been my favorite time of year, and I have always enjoyed the physical portion involved with decorating, baking, cooking, shopping and entertaining. This year I discovered that I do not have the same abilities as I once had in order to celebrate the season in the same ways that I have always done. My husband and I came to the realization that we will need to make some adjustments in how we celebrate and prepare for Christmas in the future. This came as a disappointment to me, but I now understand that such adjustments for holidays are no different than the adjustments that I will continue to have to make throughout my life due to Parkinson’s Disease.

I am not one who normally makes New Year’s Resolutions. However, I have set some goals for 2008 that I hope to be able to accomplish. This blog is one of my top priorities for the coming year. Learning more about the Akinetic-Rigid subtype of Parkinson’s Disease is another priority. Additionally, now that I have a confirmed diagnosis, I finally have the confidence I need to write to those previous doctors that were so quick to dismiss my symptoms throughout the years. Just as those of us who have a form of Parkinsonism are able to help and educate one another about these diseases through our stories, I believe that doctors can learn something from their previous patients that may benefit other patients in the future.

I believe that 2008 is going to be a great year. For all of my many new friends, I want to personally thank you for your prayers, kindness and encouragement. If we all continue working together through our blogs, support groups, and internet support groups, the ability to reach out to more people with a form of Parkinsonism has endless possibilities. May God bless all of you in 2008.

Young Onset Parkinson’s Disease

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.