A touch of Parkinson’s

Michael J. Fox Foundation
Michael J. Fox Foundation

It wasn’t raining nor had it ever rained before. Just like Noah didn’t know what to expect once he completed the ark, a day in the life of a person with Parkinson’s is unknown.  With the fear of sounding sorry for myself, my days have come to be ruled by constant unknowing and never knowing what I will be facing. Quite the contrary of feeling sorry, it is so constant by now it has already become a way of life that has given me the grace to appreciate what God has entrusted me with.
I was 29 when my first symptom showed up, a slight tremor in my right hand. That was almost 10 years ago. For the most part of 6 of those years the extent my symptoms progressed from a tremor that developed in to my right hand and bottom jaw. Now in this previous year I have become completely symptomatic. Part of my current treatment is an attempt to slow its progression.
Each day my symptoms are present…some visible, some invisible. The question to be answered for each day and hour is how symptomatic will the symptoms be. Each day is different. Each hour is different. Foreseeable unpredictability makes planning almost impossible. The day’s plans determine that day’s medication regimen. There is no time I am not medicated. It’s just a matter of the combination. There is no rigid daily med schedule except for the medication for the dementia. Do I have responsibilities for later in the day? I take my meds as I begin the day and hope they don’t wear off too early before I realize it. Take the meds too early and they wear off before I need them to.
A person with Parkinson’s has to know and accept when they need to rest in the middle of the day before some responsibility later in the day so they don’t wear themselves out. This is an important part of planning ahead. Just as much, is not over-exerting themselves when effort is required of them. Over doing it will suck the effects of the meds right out of you and your body doesn’t recover even with a second dose. At least mine doesn’t.

The worst part of not planning ahead is probably the dyskinesia, the involuntary movements like your arms and/or legs, head constantly moving because the brain gets too much medicine or most cases due to long term use. Poor planning tends to lead to taking meds to close together because the first dose isn’t working well. I don’t mind the dyskinesia so much. It does make my muscles tired and in pain, but then again it’s not that bad for me either and I don’t experience it that often.
There is no cure for Parkinson’s. It’s a progressive disease. A neurological degenerative disease. I think it’s also a planning disease. We are not forced to conform to a life of constant planning, but if we want to take charge of our lives then we learn to do so. While doing so we may discover how much God has blessed us for so long and realize how we have taken those blessings for granted.
We’ve all heard of how one of the strengths of human nature is the ability to overcome adversity and all we need is the will to do so. Personally I disagree. I may be strong in will but only in so much without the strength of my God. The Book that I read says I can’t do anything without Him. Just as Noah planned ahead with God’s direction. And it took him 120 years to build the ark.
My days may be consumed by constant planning, but so is my life now. More than those without Parkinson’s. The things I do today affect my future now matter the distance. They affect my future now in ways they didn’t before. They affect my kid’s future in ways they didn’t before. If I choose not to listen to my body then my independent days become less numbered. But no worry as long as I take care of myself with God’s directions, if Noah can trust God for more than 120 years with His plans, then I can trust Him to follow His plans for me. And just like Noah I never know what I plan for, whether it’s for the next few hours, the next day, or years later. But God knows, and that’s all I need.

Donate at http://www.gofundme.com/23ea2k

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