Parkinson’s is a life sentence of increasingly progressive punishment without chance of parole. You can see the best doctors, they cannot cure you, take the newest meds, they will only temporarily manage some of your symptoms, exercise day and night, it will not stop the progression of the disease. There is no miracle cure. People with Parkinson’s suffer more as the disease progresses. It is not something you can get used to because the symptoms change and develop over time. The disease will continue to progress and you will continue to get worse. At some point you will run out of medical options for dealing with the disease. At that point you are on your own and how you experience the disease will determine what you do and how well you survive. That Parkinson’s is miserable is a fact. I have to accept that I may never feel physically well again. What I do with that, how I experience it, could determine the quality of the rest of my life. Medical facts can be tempered by individual experience. The reality is that I have PD. How I experience it is up to me.
Disease is not objective. It is experienced. Parkinson’s more so than others. PD symptoms are different for each person and each symptom affects each of us uniquely. Tremors are the most common and noticeable symptom. A friend with PD is very happy that she doesn’t shake but has Parkinson’s with Lewy Body Dementia and is loosing her mind without knowing it. Factually she has Parkinson’s but she doesn’t consciously experience it.
Another friend has had PD for more than 15 years. He has noticeable tremors and balance problems that lead to falls. Parts of his body are twisted (dystonia). He believes that he has the disease under control and is basically ok and not doing too badly. You might think his belief is not based on fact but experience is not objective.
I was diagnosed in 2012 and the physical symptoms of tremors and lack of balance are suddenly really kicking in. I had the PD miseries the other day, heavy on the symptoms and an acute dose of anxiety. It was really getting to me. Then some friends came over, took my mind off it and my experience changed. Some people are not bothered by the fact that they shake. Others are. Each person experiences the disease differently. Facts fade. How we experience our experience becomes our reality.
When I first experienced symptoms I went to a neurologist. I shook a little but had been shaking all my life and so entered his office feeling good as a healthy human being and came out labeled as a neurological disease called Parkinson’s. He prescribed meds that may or may not be helping me. It is hard for me to be objective due to the misery of the disease. My mental attitude was good. I remember thinking that I could handle this if it doesn’t get worse. Little did I know. Of course it got worse. Then the PD misery began and I spent more and more time thinking about PD. The more I thought about it, the more I became defined by the disease. It was as if an unwelcome guest had taken residence in my body.
Eventually I met other people with PD and became part of the Parkinson’s community. Meeting other people with the disease and becoming active in the PD community has been as beneficial to me as Sinemet. We have an in common shared experience. By taking part in the life of the community I stopped being a diagnosis and became a person again. We experience PD and suffer individually. The PD community helps alleviate some of the misery. Some days are okay and some are bad. That’s just the way it is but how we experience it its up to us. Can we just say that’s life. It is neither fair nor not fair. Life just is or isn’t. So enjoy it, experience it, live it as best you can while you can. Mental attitude is everything.
