How Parkinson’s Changed my Life

It was 1992 – life was good – we were on a family vacation in Florida. In my job as General Manager for a manufacturing firm, the rest and change of pace was what I really needed. We were at the airport Duty Free shop and as I signed for some goods, my son called me aside wondering why my signature varied so much from normal. I passed it off as excitement – but I knew deep inside me that he had observed what I had been hiding and feared.

On our return and after a battery of tests and scans, my Neurologist exploded my world with the words “I’m afraid that you have Parkinson’s Disease!” How could this be true? I was 54 years old – a little too young, I thought, to contract an ailment that I associated with older people. But it was true and over the following years, various programs of medication held it reasonably in check. By 1997 it was beginning to take a larger piece of my life. Business was booming and we were in a mode of expansion to our facilities. As this was progressing, my own demands on myself kept increasing and I began to realize that my body would no longer accept the pace that I placed on it. Approaching 40 years of service, and with the expansion fast becoming a reality, I had to make what I considered as my hardest decision ever.

In early 1998, I retired – expansion complete – the 40-year milestone reached. What would I occupy my time at? How would I react from changing my pace from the hectic version I was so used to – to one in retirement. I knew, from many tests done, that the reduction in STRESS would reduce my medication and perhaps prolong the advancement. During the past 3-4 years, I seem to have found enough to keep me more than busy, but the road to a happy medium has been bumpy indeed.

As the Parkinson’s progressed, I found myself repeating that all too familiar phrase “I just can’t do it anymore” - the words borne out of frustration, some anger, and mixed with despair. “IT” referred to some of the mundane and ordinary chores that I used to take for granted and that used to be done in a breeze – simple chores of physical dexterity. I had never considered not being able to perform them – it used to be a case of when I might get around to them. Now they presented the reality that I could no longer complete them and I used to rationalize that the anger, despair, and frustration were well deserved.

Yes it is very true that there are many things that I can no longer do and some that I can still do but are very difficult to complete. And yes, it’s true that Parkinson’s has made major demands and changes in me physically and mentally as the disease continues, and I must accept the reality that conditions will be worse down the future road. I have finally, however, learned to openly admit these shortcomings to both myself and to all others and to accept realism - most of the time.

I have finally also realized that my concentration dwelled on the things that I could no longer do – or those tasks that presented major difficulties. I had to learn all over, what it was like to depend on others, when just the opposite used to be the norm. I soon realized that I had allowed my mind to summarize only the difficult or now impossible chores, and nowhere in my thoughts had I allowed any room for other tasks that I might be good at – that would present things that I could do without bearing from the disease itself. There were a wide range of things I could be doing that included volunteer work in so many avenues. I had been very active in Service Clubs; Sports Organizations; Community Projects; and volunteer work in the town where I live. Just because I have stopped attending meetings was no reason that I couldn’t do some work in the comfort of my own home – at my own pace – and with the same feelings of satisfaction gained, as I did before.

If you’re fortunate, you will have the love and understanding of your family – and your friends, without whom you would never make it through the myriad of obstacles that Parkinson’s can and does throw at you.

I had finally learned to broaden my scope of things I could do instead of my former concentration on only those impossible or very difficult chores that led to the feelings of incompetence and low moral. I married this new scope of tasks with the elimination of long range planning. “One Step At A Time” is a book penned by the late Dr. J. David Grimes and  and its title is so appropriate. I’ll get through this day and tackle tomorrow when dawn brings it along.

To combat those times of depression – and they do occur no matter how strong you think you are – I attempt to remind myself that there are indeed many other people who are considerably worse off than I am. They are afflicted not necessarily by Parkinson’s but with many other diseases. They have reason for despair while I consider myself fortunate that I am not in their midst. On days when I can accept that rationale, my outlook brightens. Yes – I have many other reasons to get down – but circumstances could always be worse. If you think about it – you often don’t have to look very far to find someone who is really worse off than are you.

The message here is to look at the broad spectrum of things in your “new world”.

“New” because it hasn’t always been like this – but it is now and that’s reality. That means it’s better to make the best out of a changed world and concentrate on those things that you still can do and can do well.

Live with the positive and don’t allow the negatives to take over your life. Stare Parkinson’s right in the face, and tell it that you will run your life as best you can – not it. That’ll put a smile on your face from the satisfaction of living beyond the edge of the ravages of a disease that will be cured – hopefully in the near future. !!