Thursday, December 13, 2007

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.


IndyMama said...

"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."


But you did finally receive a diagnosis, as we all do, and that is good! Hopefully, if we all speak up loud enough, those who come after us won't have to go through the run-around that we have had. I still firmly believe that stiffness-dominant/onset PWP have a harder time than tremor-dominant, and that this issue needs to be addressed with doctors. I am glad that you have finally found an answer. :)

Patient With A Plan said...

I agree with you.

I believe that I have read that it takes an average of an additional two years longer to diagnose the Akinetic-rigid form of PD than the Tremor dominant form. Age also comes into play, as well as gender.

I am very pleased to finally have a diagnosis, and I also hope that our experiences may help others to not have to ride on the "Diagnosis Merry-go-round" longer than necessary.

Thank you so much for being willing to share your experiences. Your story especially is an eye-opener for those who still beleive that PD is a disease of the elderly.