Getting older with young onset Parkinson’s disease provides a unique perspective. When I first noticed a tremor, in my late teens, it slowly and unexpectedly transitioned into many more symptoms. As time pressed on, I saw my foot drag, uneven shoe wear, posture problems, micrographia or small handwriting, mobility issues, dystonia, and more. Parkinson’s disease is an illness with no cure, no known cause, and is still a mystery to the medical community and the public, in need of recognition and de-stigmatization.
Young onset Parkinson’s disease (YOPD) will always be what I have, no matter how old I get. Diagnosed at the age of 23 but with symptoms at 17, I am now 56, but I will always be young or early onset. As this illness manifests and I age, I am challenged to maintain the double jeopardy that comes with chronic illness and living over half a century. I am so grateful, hopeful, and motivated to still be offering my vision and perspective to those who are willing to listen.
If you have Young Onset Parkinson’s disease (YOPD), here are some resources you may want to consider:
- Young Onset Parkinson’s Network – YOPNetwork.org
- Davis Phinney Foundation YOPD Resources & Find an Ambassador
- Welcome to the YOPD Club books 1 and 2 – William J. Braddock
Karl,
I’m inspired by your positivity. I do not have Early Onset Parkinson’s; I was lucky to be diagnosed at age 79.
I, too, believe in cultivating an attitude of thankfulness and, even with my short-term diagnosis, I am coming to understand that it takes a certain energy to maintain this outlook. Some days I have that energy and some days my feet feel like they are encased in bags of cement. The trick, for me, is how I talk to myself on those low-energy days. On those days I try to cut myself some slack, ask for a little help (this is hard for me), and allow myself to just rest and read a book or do a little art.
The trick is in my head; after all, my body is in the hands of the disease, and I can only manage that in a limited way. It’s in my head where I navigate the denial, the risk to myself if I am too proud to ask for help, the siren call of self-pity.
Somewhere, in the middle, I am trying to be accepting, and forgiving of my go-gettum-self who cannot keep up the pace. I can still be grateful for many things in my life. The conscious decision is there every day when I wake up. My mind, so far, has not failed me.
Elisa, What a beautiful piece of honesty and wisdom! Thank you for taking the time to share this us all! This is so helpful! I really appreciate your reaching out! Thank you, Karl