By Lorraine Wilson
I have said I do not, and will not, accept Parkinson’s disease (PD). I do not deny that I have it. I see doctors and take medications. But acceptance, as I understand it, requires consent. And as I have said before, I never gave Parkinson’s permission to enter my life, let alone take it over.
A plan for living with Parkinson’s
What is a good approach to analyzing any situation or decision? I have listed pros and cons to help evaluate issues over the years. Typically this has helped me make a satisfactory decision and plan next steps with clarity.
I wonder if it will help me establish a good plan for talking about Parkinson’s as well as living with it in the best way possible? A list of pros and cons follows, simply as each topic occurred to me.
Daily life
Pro: I say that I live with Parkinson’s instead of accepting it.
Con: I live with a rude, obnoxious roommate.
During the day, the roommate that is PD forces me to follow an annoying medication and meal schedule. I have to think about doing previously automatic movements, which becomes fatiguing by itself. It wakes me at all hours of the night. It does this with frequent trips to the toilet. It does this by trapping nightmares and stuffing them in my head. It also does this by delivering muscle cramps or night sweats.
The cost of PD
Pro: I saved money while working and was able to set aside funds toward retirement.
Con: Parkinson’s has made me spend my money on things I need to live with it.
This is especially evident when I look at the cost of insurance, insurance supplements, medical appointments, and prescription medications. At some point this may include adaptive devices, home health services, or residential expenses because it has destroyed my ability to live in my home. Well, this is a rabbit hole I think I will stop following for now.
Impact on relationships
Pro: PD has brought new situations and people into my life.
Con: It has made me give up things I want to do and people I want to see.
Overall, I am glad for new situations and new people that enhance my life and with whom I can work to be an advocate for persons with PD.
Exercise
Pro: Exercise is good for me so I maintained a reasonable exercise routine throughout my adult life with the anticipation of living healthier longer.
Con: Exercise is required daily, which sucks some of the fun out of it.
The anticipation is now more about all things avoidance. I seek strength in order to avoid needing help with chores and taking care of myself. I seek balance in order to avoid being a fall risk as long as possible. I seek aerobic capacity so I can avoid needing supplemental oxygen. Exercise is good.
I can choose to live well with PD
I know there will be criticisms of my pros and cons list. I am certain I am biased. This is written in first person, after all. Here is one last thought …
I wonder if accepting Parkinson’s is a good choice in the long run. Maybe I should try to live well with PD by waving a white flag of surrender. Maybe I should consider it more like the stalemate in chess that allows one to call the game a draw instead of a loss. Technicalities. Semantics. Glass half empty or full?
In the end, one pro that I will embrace is choosing to learn all that I can to live as well I can for as long as I can. This is what I would do even if PD never entered my life. Maybe this pros and cons list helped remind me of that. I will take that as a pro and stop while I feel ahead in this PD game. How do you live well with Parkinson’s? It is your move.