This week’s column is highly personal. If “personal” bothers you, stop reading now. I intend this to celebrate the power of a single word: Manageable.
For the first few years, I wouldn’t call my demon by its rightful name. When you may be in the grip of an incurable disease, what’s a little denial? Can’t make things worse or better.
But the evidence is overwhelming, and even though I persuaded my neurologist to refer to my tremor as a “Parkinson like-tremor,” I’m willing to concede and call it what it is: Parkinson’s disease. I’ve been symptomatic for at least 10 years, although limited only for the last two years or so.
In conversation recently, someone mentioned a sick man who was told he could expect to live only six more months. How would he change his life? What would he do differently?
The answer differs from person to person, I believe. Although we don’t talk in terms like that, I can tell you that this PD patient has abandoned plans to die in her sleep and in her own home at 95 like a grandmother should.
We’ve traveled a lot and I can’t think where else I’d like to go. Iceland maybe. Travel is stressful at best, and expensive. And I’m reluctant to go too far from my pharmacists and my neurologist.
I’ve pretty well made peace with the prognosis, although I’m not rushing to find out the worst. When it comes, we’ll deal with it. Meanwhile, I’ll go on watching how Michael J. Fox and Janet Reno cope. Both were diagnosed years ago and both apparently still enjoy a good quality of life.
I’ve known personally only one other person with PD, the husband of a cousin. He retired from owning and operating a wonderful hardware store in Mechanicsburg, Pa. because he was afraid someone would think he was drinking. Milt had a tremor, moved slowly, and his speech was slightly slurred, yet he lived at least 15 years with the disease and died in his mid-80s of an overwhelming infection.
Before he installed a chairlift for the stairs and relied on an electric-powered wheelchair to get him around his house and yard, he used to say, “I fall down a lot, but I just wait until Phyllis comes looking for me.”
Why am I outing my demon now? I write about life experiences, and this is a new chapter in life for me. I promise not to turn my column into a pity-party. Like Milt, I don’t want you thinking I’m drunk, especially when I lurch up the aisle in church on Sunday morning.
The tricky thing is that every symptom – every one of them – can be attributed to at least one of three factors. “I’ve always been like that,” or “It’s part of the aging process,” – I’m 73 – or “I’m being medicated for a neurological disorder.”
The most dramatic symptom is losing my balance and falling. “I’ve always been like that.” There’s usually a reason for it: uneven pavers, running and tripping, going after a toddler who fell into a doorway on a crowded Strassenbahn in Düsseldorf.
And there’s the tremor. Under stress, especially, I flap newspapers and choir music badly enough to chill those sitting nearby.
I’ve lost 20 pounds; I’m never hungry. Would you believe I’ve lost three inches in height? I’ve had memory loss, but that could fall under the categories of “always been” and aging. It becomes a casualty of my demon, however, when I can’t get to the end of a sentence without stopping to search my vocabulary for the word I need. And then forget why I needed it.
That’s been the worst, for sure.
But about three weeks ago, something wonderful happened. Until three weeks ago, my zest for life had been draining fast. I was severely depressed. I started thinking of people to give my things to: stuff in the attic, closets, shelves, my computers. Exercise, a pleasure before this, became a chore, and my continuity of thought was just about nonexistent.
Two things happened. The doctor added a couple of new meds, and someone referred to PD as a “manageable disease.”
Within less than a week, three or four days, actually, I was better. I’m nearly symptom free. You don’t “get better” from Parkinson’s disease, so I know not to think this is a cure.
And I don’t know long it will last. But at this moment, I’m thinking clearly, the tremor is minimal, words don’t evaporate before the end of a sentence. I’m remembering things –names, events, numbers – that I haven’t thought of for years, and short-term memory is stronger.
I’m still wobbly and weak. Dave still has to haul me bodily out of chairs and help me with the car door, but as long as he’s willing to do that, we can manage. I haven’t a clue how long it will last, or what the cost may be (liver damage?) in the future.
I’ll take it a day at a time – no, make that a couple of weeks at a time. We have grandsons to visit, and we want to see an old friend up north. She’s 97 years old and may not remember me, but I’ll remember her.
And we’re thinking of going back to Europe next year.
How manageable is that?
