The Gift I Received From Parkinson’s Disease

Well, I must admit that I am just recently coming out of a short “why me” phase. It was short-lived and out of character, and I am now out of my “funk”. I now believe that this “funk” was directly related to the fact that this disease has dramatically changed my life. For some reason, this realization really hit me hard after Christmas, when I realized that the things I have done during the holidays every year in the past, took much more effort and more time for my body to play catch up after the holidays. I basically received an “in your face” lesson from my body, that I have to accept the limitations and learn to adapt to the limits placed on my physical capabilities. Adapting to such limitations is not really that difficult, because there often comes a time when the body just says to stop and rest. Often there is not a choice involved. On the other hand, acceptance does not always come easy, because we must mentally make the choice to acknowledge those limitations and make a conscious decision to embrace the things in life that we are still capable of doing.

When my kids were younger, and I was a single parent, I often dreamed about what I would do if I had all the time in the world to do whatever I wanted to do. During those days which seem so long ago, I was a full time parent who balanced taking care of two children and a full time job. Looking back, I now wonder how I ever managed those hectic days.

I recently came to the realization, that I now have that time that I always dreamed about. Unfortunately, that time was given to be prematurely due to Parkinson’s Disease. If I had to be honest with myself, I would have much rather received this time later in life, much closer to a normal retirement age.

I have changed my perspective on my early retirement, and I now believe that I have been given a gift. In return, I decided that I wanted to do something with that gift that would impact the people in my life that I care about the most.

My grandfather recently passed away, and my mother and her siblings have received old family pictures, some that date back to my grandparents’ grandparents. My grandpa took most of these pictures, as he was a semi-professional photographer. My grandmother, who was a very important person in my life, had passed away in 1991. When both of my grandparents were living, our family was very close knit. When my grandma passed away, that closeness seemed to fall apart. She was the thread that held the fabric of our family together.

When my grandpa found out he was dying, he made it known that he wanted to make peace with family members that he had not been in contact with due to various issues. I was blessed to be able to bring my father and his wife, my sister and her children, and my children to his bedside before his death. I saw it as a final gift to my grandpa and grandma. My son was the most difficult, because I had to arrange for him to come out from Las Vegas. My grandpa had a special relationship with my son, who would call my grandpa often just to say hello, so I knew that it was important for them to see one another before my grandpa passed away. As if he were waiting for him, my grandpa passed away the day after I took my son to see him. I filmed this final visit with my camcorder, which shows the two of them joking back and forth, as they often did.

The gift of time that I have been given, as well as the old photos that are now in our hands, gave me an idea. I decided to create a living legacy of my grandparents by creating a DVD movie with the pictures. This DVD will tell the story through pictures beginning with the oldest family photos through the generation of my children. In essence it will cover six generations. My mother, aunt and I are working on this project as a gift to every family member for Christmas this year. None of us are computer gurus, but my husband has shown me how we can do this using a photo scanner and my trusty computer. In addition, each family member will get a copy of all the photos that are not used in the DVD movie, in the form of CD’s. We decided that it was important for each family member to have copies of all of the pictures, rather than dividing them up among various family members. We also plan to create a master family tree diagram as a reference tool. This will allow a family member, current or future, who may view a picture and name of a person that is unfamiliar, and to be able to look to the diagram to see where this person lies within the family tree.

My sister and I are working on another gift for the family, which consists of converting old 8mm and Super 8 home movies to DVD format. These were home movies that my grandpa took of my mother and her siblings when they were children and home movies that my dad took of us while we were small children. This is a gift that we will not be able to do on our own. My sister and I must find a reputable company to do this for us, and she and I will share the cost of having it done.

Additionally, I am in possession of two 120 minute audio cassettes that my grandma created prior to her death in 1991. Essentially, she spoke into a tape recorder and told her life story from the time she was a small child through adulthood. I plan to try to convert these cassettes into CD’s minus the background noise. My husband believes that this can be done at home, so when I am ready to begin that part of the project, he will assist me with the process. My grandma was one of those people who was loved by everyone who ever knew her, and I believe that hearing her story in her own words and voice is a great addition to the DVD movie of our family history.

Finally, I plan to do a separate but similar project as a gift for my children. I have taped many of their life events using a camcorder, and I have kept just about everything they ever did in school. I plan to create a DVD movie for each child with the camcorder footage, so that each child has a copy of some of the biggest events in their lives. This DVD will also include the numerous pictures I have taken of them throughout their lives. If time allows, I will then scan all of their school papers and burn them to a CD, so that I will always have a copy. Then, I hope to create scrapbooks of the originals for each child. In essence, I want to give each of my children the family history I described above, but I also want them to have a permanent record of their own childhood histories.

Because these are very lofty goals for this year, and due to the day to day changes that occur with Parkinson’s Disease, I will not be disappointed if I am only able to accomplish half of these projects by Christmas. I work on them when I am feeling my best, and often work on them during those nights that I have insomnia. Since it is too difficult to predict when I am at my best, I just work on them when I can. If I were unaffected by Parkinson’s Disease and still working full time, this gift of time would have never been handed to me.

The photos that we have gathered, the home movies we have, and the footage I have of my children were all created to provide memories. If we do not do anything with these photos, film, and footage time will erode them to the point where they will become useless. All of these items can be used to not only highlight our family history, but they can be passed down to future generations as a legacy. I love the idea that my children’s grandchildren may one day receive copies of everything we are creating.

Those of us involved in these projects began working on them last month. I am finding that some of the preparation work can even be done when I am feeling fatigued and resting in my recliner. The time consuming portion for the majority of these projects is having the time and stamina to physically sit at the computer and scan the pictures and put names to those pictures. The amount of time spent doing this task depends entirely on how I feel. Since Christmas is so far off, even if I am able to only spend an hour or thirty minutes per day working on these projects, I believe that I will have a good chance of completing these projects.

It is an absolute fact that Parkinson’s Disease has robbed me of several activities that that I once enjoyed. Physically demanding activities and working outside the home are the two activities that enter my thoughts most often, and I mourn the loss of. On the other hand, Parkinson’s Disease has given me the gift of time, which is something that I have never had in my adult life. This gift of time is allowing me to replace those things that I am no longer able to do with projects that I can do and work around my limitations. This time provides me with no set schedule, no requirement to over-exert myself if I am having a bad day, and offers me the opportunity to give a gift to our entire extended family that will last a lifetime and longer. When I look at it this way, acceptance of my limitations and the changes in my life now take on a new flavor. There is now a little sweetness that has been added to the original bitterness. I guess it all comes down to how we decide to handle what life throws our way.

Mental Health - A Proactive Approach

I decided to share one of the strategies that helped significantly, while on my diagnosis journey. I only wish that I had used this strategy earlier, because it could have saved me time in the end.

As I have detailed previously, I was told several times, by multiple physicians, that my symptoms were attributed to a mental health condition, such as depression, anxiety, and stress. This scenario occurred repeatedly for nine years.

In November of 2006, I decided that I needed to remove any physician’s ability, to diagnose my symptoms as mental health related. Therefore, I decided to do what these physicians did not. Using my medical insurance, I referred myself for an evaluation with a Psychologist. I intended to have an evaluation, in order for it to be made perfectly clear, that my mental health was not the cause of my physical symptoms. With my HMO plan, I do not have to have a referral from my primary care physician, in order to seek out mental health treatment. Therefore, my primary care physician was only made aware of my plan, once my evaluation with the Psychologist was complete.

When I met with the Psychologist, I outlined to him my reason for being there. I provided my complete medical history, so that he would understand the motivation behind my visit. Although my reason for seeing a Psychologist was to rule out mental health conditions, I entered into the process with an open mind and the understanding that I might not hear what I wanted. I had made the decision that if the Psychologist diagnosed a mental health condition that he felt was causing my physical symptoms, I would accept that diagnosis, and I would address the diagnosis appropriately with the proper treatment. I was not arrogant enough to ignore the slight possibility that my symptoms might be due to mental health issues, although I felt strongly that they were due to an unknown physical medical condition.

The Psychologist and I met weekly for a period of two and half months. During those visits, he asked many questions, in order to have as much information about me as possible. Some of these questions were about my childhood, my family life, work, and any other subject he thought would assist him with the evaluation. Additionally, he had me meet with a Psychiatrist, as an additional diagnostic source.

During this time, I had decided to go off Sinemet, because I was aggressively pursuing a diagnosis. I believe that the timing was beneficial, because the Psychologist was able to observe me when my symptoms were being helped with the Sinemet, and he had the opportunity to observe the difference while off Sinemet. It is my perception, that having the opportunity to see me under both conditions assisted him with his final diagnosis.

In January of 2007, the Psychologist informed me that he did not believe that further visits were necessary. He said that unless I just needed someone to talk to once I was given a diagnosis; there was not any purpose for future visits. He rendered opinions, one of which I was already aware of. He told me I had minor Obsessive-Compulsive Disorder that did not require treatment. Additionally, it was his opinion that I was suffering from minor Depression because of not knowing the cause of my physical symptoms, but not causing my physical symptoms.

Once the evaluation was complete, the first thought that came to my mind was “validation”. When I arrived home and told my husband about the Psychologist’s opinion, I broke down and cried. For so many years, I had been told I was depressed, anxious, or stressed, that I was suddenly overwhelmed by the magnitude of what this evaluation meant. For example, I now realized, without a shadow of doubt, that I had a physical medical condition that would eventually have a name to it. For so many years, I had been prescribed anti-depressants that were not needed. Additionally, for so many years I suffered through physical pain, which could have been avoided, had physicians not insisted that I had a mental health disorder. With this realization and validation, I gained new confidence, which has enabled me to be more firm when dealing with my most recent specialists.

Now when I see a specialist, if the subject of mental health issues is brought up, I let him / her know about the evaluation. I then offer to provide the contact information for the Psychologist who evaluated me. Not one specialist has felt it necessary to contact the Psychologist. I firmly believe that had I not proactively been evaluated, that it would have left the option open for any specialist or physician, to make an initial mental health related diagnosis. By choosing to have a mental health evaluation done, it opened the door to seeking out the physical condition that was causing my symptoms. At this point, all I needed was a patient friendly specialist to take an interest in my medical history, as well as my current symptoms. In July of this year, I found that specialist. Again, I only wish that I had thought to obtain a mental health evaluation sooner than I did. Being proactive in my approach to rule out mental health issues has helped to expedite the diagnosis process.

I have been in contact with other patients, who have also been informed that their symptoms are mental health related. It appears that Depression is the condition that is diagnosed most often. Like me, many of these patients are female. Many have been prescribed a variety of anti-depressants with no resolution for their symptoms. Additionally, many have never been referred to, or instructed to seek out, a mental health evaluation by a licensed Psychologist, Psychiatrist, or Therapist. In my experience, it appears to be common for a primary care physician or a specialist to make the diagnosis and prescribe anti-depressants, prolonging the proper testing and evaluation for a potential physical medical condition.

Nine years ago, had I known at that time what I know now, I would have obtained a mental health evaluation then. Hindsight is always 20/20. Therefore, if you are a patient with undiagnosed physical symptoms, and you are being told that they are due to a mental health condition, I would seek out an evaluation as quickly as possible.

If you do have a mental health condition that is causing the physical symptoms, then you will already be under the care of the appropriate specialist, who will be able to render treatment.

If it is determined that a mental health condition is not the cause of your physical symptoms, then you will have a great tool to use as proof that a physical medical condition does exist. It will give you the ability to insist, with confidence that the specialists concentrate only on medical conditions that exclude mental health. If a specialist or primary care physician still refuses to acknowledge that an undiagnosed medical condition may exist, then it is time to find one that will. Although you now know without a shadow of doubt that a non-mental health related condition is highly probable, you need a specialist who also has that opinion. It is imperative to find a specialist that is willing to work with your primary care physician and you as a team, to determine the true cause and appropriate treatment for your medical condition.

Turning Anger Into Something Positive

Two nights ago, my husband and I were discussing this blog, and he said something that is worth reflecting on. He told me that he is very happy that I am writing this blog, because I am doing something positive with the anger I have had for so long.

My husband was not referring to anger due to my condition. Believe it or not, I am not angry about dealing with Parkinsonism. My husband was referring to the anger I have harbored for so long at the medical community.

What fueled my anger? One aspect of trying to find answers to my medical problems that angered me greatly, was consistently being told that my medical issues were due to depression. This was the “diagnosis” I most often received by physicians, without ever being referred to a psychologist, psychiatrist, or counselor for any type of evaluation. I was given samples or prescriptions for anti-depressants. I refer to depression, or any other diagnosis that has not been proven by testing, evaluation, etc., as a diagnosis of convenience. I will not elaborate on why I believe that a diagnosis of convenience is often handed out. I will say that the reason this particular diagnosis affected me so deeply, is because I was given this diagnosis early on, even though I did have a spinal condition that could have been easily identified through appropriate testing. Rather than being told I was depressed and prescribed anti-depressants, had the proper tests been ordered when I first began seeking treatment, the spinal problems would have been identified six years earlier than they were. I spent six years with various symptoms, which included pain. Instead of treating the actual physical medical condition, I was given various medications for a condition that never existed.

Another big trigger for my anger was being told that my symptoms were because I am female. The headaches I once had due to a cervical spine herniation, were attributed to my gender. Those headaches resolved after I had a cervical fusion. I am still a female, so why do I no longer have occipital headaches? Obviously, this was another diagnosis of convenience. Additionally, being female also contributes to the “depression” diagnosis; something about a female’s hormones changing and causing chemical changes in the brain, which cause depression, anxiety, additional stress, etc. Again, without the appropriate mental health evaluation, medical testing, and appropriate specialists, these types of medical opinions are not founded in facts.

Finally, the most difficult aspect, which fueled the anger in me more than anything else, was dealing with multiple physicians who were not patient friendly. It is my perspective, that had these physicians been patient friendly, the “diagnosis of convenience” scenarios would have never occurred. Had these physicians acknowledged my symptoms, I would have had fewer years of physical pain, frustration, unnecessary medications, and self-doubt. Self doubt? At times, I would doubt myself; because I was told so many times that no physical medical problems existed. Additionally, I would have been saved multiple years of knowing that something was physically wrong, but not knowing the cause. I will never understand why these physicians made the choices they did with respect to my requests for help. I have come to a point of forgiveness, with the hope that these physicians have evolved into patient friendly physicians, with the passage of time.

I have often wondered how these physicians would react, if I wrote each one a letter that detailed the medical conditions that have since been diagnosed, but were given a “diagnosis of convenience” while I was under their care. Would they be enlightened, or would they not care? Would they take a step back and analyze how effectively they deal with their patients? Would it assist even one, to recognize that the needs and wellbeing of the patient should be the physician’s top priorities? Physicians need to remember that as patients, we rely completely on them to assist us when our health is in jeopardy. Our lives are in their hands. The words they speak, and the actions they take, can be the patient’s biggest blessing or greatest nightmare. I may sit down one day and write those letters. For now, my priority lies with other patients like me, who are struggling to find the answers they need.

Being angry with the medical community never assisted me in my search for a diagnosis. The only thing my anger did was waste my time. Rather than giving up any more time to anger, I decided to take the lessons I have learned and share them.

I have only touched on a few methods that can assist a patient who is traveling through the diagnosis journey. There are so many other things that a patient can do to make the diagnosis process smoother, and I find myself getting frustrated, because I can only type so fast. I get so excited each day, waiting in anticipation, for the next moments that I will have available for writing in this blog. This excitement and desire to help other patients, has completely replaced the bitter anger that I had allowed to invade my heart. The actions and words of these physicians that caused the anger, have now become the nexus for something positive. I cannot change what happened in the past, but maybe I do have the ability to help change the amount of time it takes, and help reduce the frustration, for other patients who are now facing the challenges that I once did. It would be such a blessing to know that through sharing my experiences, I have made a beneficial contribution in someone else’s life.

My husband is the one person responsible for this change in direction. Each time the anger would rear its ugly head, he would calmly tell me to turn my anger over to God. Sometimes that is easier said then done. I will admit it took quite a while before I was willing to let the anger go, and turn it over to God. I did finally give up the anger, and in its place, God placed a plan in my heart. This blog, which allows me to share my experiences and the lessons I have learned along the way, is the plan I was given in exchange for my anger. My husband provided the guiding words, and God provided the healing.