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Re-Prioritizing Hopes

Monday April 21, 2014

With over ten years gone since my diagnosis with Parkinson’s Disease, I’m trying to tamp down my greatest hope. That selfish and obvious hope? Of course, it’s for a PD cure.

What’s the problem with hoping for a cure? In the abstract, there is nothing wrong with this. In fact it’s impossible not to hope for such a thing if you have this collection of afflictions we call Parkinson’s Disease. And it doesn’t mean that we shouldn’t have hope for the day when we eliminate Parkinson’s Disease from the catalog of human misery, or stop working for it. I sincerely believe that day is within reach. I’m just trying to radically scale it back in my hierarchy of hopes.

Why scale back hope of a cure? First, at 55 years old, I’m brought up short by the amount of time and money it takes a new drug or device to work its way through the system.  A new molecule takes many years and multiple millions of dollars to reach patients. For all the good faith of those trying to hasten the process, there are legitimate reasons, like safety, that will always make the process too slow for some.  As Neil Young sang “An ambulance can only go so fast.”

Second, who can say that one molecule or procedure will constitute a cure? As Neurologist-with-PD Dr. David Heydrick points out, Parkinson’s is complex. To paraphrase Winston Churchill, it is complexity, wrapped in intricacy, hidden in multiplicity. This suggests that there is no silver bullet. It may be more of a combination of approaches that makes the “cure.”  We may be looking at surgery, plus exercise, plus medication, plus nutrition, plus... who knows? Researchers are doing amazing and imaginative things. But as it is, as we beat on toward the center of this question, there is still much to answer.

“Great” you say, “This is depressing! Why did I ever even start to read it?” Good question. The answer: I’m trading in hope for that grand moment the cure turns up for the hope that there are things I can do today that will make my Parkinson’s symptoms and progression more benign. If we want a decent quality of life today, we can’t let the hope that someone, someday will fix us lead us to neglect the things we can do for ourselves right now. And what we can do now turns out to be big.

One of the worst things about being told that you have a progressive, debilitating and incurable disease is the feeling you have of naked helplessness. Well, with garden variety, ideopathic Parkinson’s Disease, you don’t have to believe that anymore. Hooray! We aren’t helpless! Oh crap! That means we have responsibility.

If you will exercise, an impressive number of studies show you can improve your symptoms, from tremor and micrographia to falling. If you do Lee Silverman Voice Therapy, you will end up speaking more clearly, have more facial mobility, and cope better with swallowing. The more you learn about medicines for PD, their interactions with other medications and common side effects, the better your chance of negotiating the complexities of these questions. All signs point to the fact that you can manage aspects of Parkinson’s in ways that will significantly improve your quality of life today.

Are you obligated to do any of this? Perhaps not. But you are obligated to think it through and have a good reason to say no. My hope these days is that more people with Parkinson’s disease will find reasons to say yes.

Peter Dunlap-ShohlPeter Dunlap-Shohl
NWPF Blogger

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