Really, My Life is Going Well

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In this blog I usually write about symptoms of Parkinson’s Disease and my reactions to them, and this is necessarily something of a downer. But I don’t want to give the impression that  Parkinson’s has made my life unhappy or a drag or tragic. So in an effort to achieve some balance, here is a list of some of the things I have learned from having Parkinson’s over the past 15 years:

  • Eventually, fear gets boring. At least mine has. How long this takes varies from one person to the next, but my friends with Parkinson’s all look like they have arrived at a similar place, approaching life with grit and determination, (along with a large measure of dark humor).

  • People will help me if I let them. The amount of real, genuine and effective help which I have received over the years is amazing. I continue to feel grateful and uplifted when ever I think about the friends and family who are on my side.

  • I think that I look and sound worse than I actually feel. I can imagine that this is true of other people as well.

  • My low energy level is frustrating, but I don’t need a lot of energy to do the most important stuff. For most of my life I’ve been a driven person, always needing to do more. Now it’s the opposite. Parkinson’s for me has been a continuing process of prioritizing, always in the direction of doing less. The continuing process of identifying things that I feel compelled to do, and then deliberately giving them up, has felt liberating, at least once I’ve stopped resisting.

  • Until the medical community finds a way to either slow down or (hopefully) stop the progression of the disease, the prognosis isn’t going to change. New symptoms will continue to crop up, and existing symptoms will continue to get worse. I will have to continue to spend much of my time with my therapeutic activities. So far these activities have been meaningful and enjoyable; I’m trusting that this can continue. 

  • Despite everything, I feel as good or better now than at any time since I first started on this adventure. My motor symptoms are largely controlled by DBS and my exercise and dance program, and I’m holding my own with the non-motor symptoms, at least for now. I have enough income to live a comfortable, if rather frugal, life, which goes well with my low energy level.

  • Life is still worthwhile and fun.

(Reluctantly) Giving Up Drinking

Today I continue the theme of “good” results of having Parkinson’s Disease, which I started with the previous post. For years I’ve had a glass of wine, or sometimes two, most nights before going to bed. I know, I know, there are lots of reasons not to do this. Alcohol makes it easier to fall asleep but harder to stay asleep. It makes it hard to loose weight. It’s clearly escapism. It costs money. Nevertheless, I enjoy my evening glass, and I unapologetically drink it.

Or at least I did. Over the past few years I’ve gradually developed a fairly intense case of acid reflux. This is a common symptom of Parkinson’s Disease; here are a couple of citations:

In my case the acid reflux is controllable with Omeprazole (Prilosec), but barely. As a result, a sip of wine has gradually gone from a pleasure to feeling like a wash of acid in my throat. Interestingly, I can still enjoy a glass of wine during the afternoon, but generally I’m busy, or I’m planning to go out dancing in the evening, so I don't bother.

Ironically, all this occurred just when I’ve found a winery whose products I really like and whose wine club I joined (Cascade Cliffs, Wishram, Washington). They send me 6 bottles every 3 months. The last two shipments haven’t been touched, even though they contain some of my favorite wines. I guess that says as much as necessary about the future of my relationship with alcohol.

There’s no doubt that I’m getting the benefit of this situation: I’m sleeping better, losing weight (if slowly), and saving money. I suppose I should feel more grateful, but I must confess that the best I can do is to appreciate the irony of the situation.


(Reluctantly) Learning Compassion


I recently encountered this quote:

“Wounding and healing are not opposites. They're part of the same thing. It is our wounds that enable us to be compassionate with the wounds of others. It is our limitations that make us kind to the limitations of other people. It is our loneliness that helps us to find other people or to even know they're alone with an illness. I think I have served people perfectly with parts of myself I used to be ashamed of.”

Rachel Naomi Remen, with thanks to Mary Anne Schleinich

Who can deny the truth of these words? Certainly not me. But the process of becoming more compassionate isn’t exactly easy, or fun. Furthermore, it’s not something one does or strives for, rather it just happens, and as the quote implies, being hurt may be a necessary first step. Of course, everyone has been hurt, and there’s nothing special or unique about my situation.

But, to take an example, I’ve always found romantic relationships to be difficult and baffling. I keep finding that either I have hurt my partner or they have hurt me, for no reason I can see. Parkinson’s has made this problem considerably worse. This is a part of my life that I “used to be ashamed of,” or maybe I still am. And ok, my difficulty with maintaining a relationship has made it possible to have compassion for others with the same problem. But I wonder, would I have been happier with a single, great relationship, even at the cost of not acquiring this compassion? A pointless question, no doubt.

This is also true with the tremor and general clumsiness I experience, as well as with the cognitive issues related to Parkinson’s that I wrote about last time. I find that I have nearly endless patience with people who walk with difficulty, talk slowly or take a long time to find words, or whose attention wanders. This isn’t based on any particular virtue on my part, rather it seems to arise naturally from the knowledge of what that’s like. Maybe a less pointless question is whether it’s possible to develop compassion without some kind of loss. I don’t know the answer.

Michael J. Fox likes to say that “Parkinson’s is the gift that keeps on taking.” I agree, the things one learns from Parkinson’s are gifts, but yes, these gifts are the shadows of what has been lost.

Hope and Despair

 One hard thing about having PD (or any mysterious, poorly understood condition) is that there’s no road map. The conventional treatments are ok as far as they go, but unsatisfying: no one knows how the disease works, or how to cure the damned thing. The conventional treatments - drugs, surgery, and exercise - can treat symptoms but can’t stop the progression of the disease. Speaking for myself, this can be hard to to face.

But if I’m not satisfied with the limits of conventional treatment, what is there to do? My first approach has been to keep researching and trying new therapies, everything from supplements to diet to energy medicine, and a lot of other things as well. This has been engaging and interesting, and has perhaps even somewhat helpful, especially with improvement to my overall health. 

But it hasn’t had much if any impact on my PD symptoms, and it sometimes seems to have been mostly a means to keep my mind busy and off the despair. It also strikes me that this approach is based entirely on a model of struggle against PD, and has left me feeling alone. The irony of this situation makes me uncomfortable: being an engaged patient is playing right into my inclination to avoid my emotions and keep it together at all times.

A different approach has been to get to know and listen to other people with PD. Recently I’ve begun a project to help break down stereotypes about people with PD, using the mechanism of portraits, along with interviews in which my subjects talk about what they’ve experienced and what they’ve learned. The experience of meeting these people and hearing their stories and their wisdom has been incredibly inspiring. I’ve been especially struck by the fact that everyone I’ve interviewed so far has continued to live a good life, with humor and determination, even after many years with PD. This project can be found here.

I doubt if I will ever stop trying to learn more about PD or trying new therapies. But this second approach, which is based on acceptance, relaxation and camaraderie, is meeting a need which I never really recognized that I had.

Learning to Accept People's Care

Already I can’t do as much as I want, or at least I should not. Usually this is about driving, though it can also be about changing hard to reach light bulbs or staying out too late. When I do something I shouldn’t anyway, generally out of some sort of anger, I usually regret it, though sometimes it works out fine.

People have been incredibly eager to help me, and most have been exceptionally good at it. People offer to give me rides everywhere, and during a recent surgery I was flooded with offers of food and company during my recovery. To me this is a real lesson about being able to accept help. I was raised to be the one who gave help, and learning to accept help has not been easy. My message to people who have a hard time graciously accepting help is pretty simple. If you live long enough you’re going to need other people. Start practicing now at accepting help, or you’ll be sorry.

Sometimes people believe in me even when I don’t. The dance teacher who insisted that I could stand up straight, and who kept insisting until I did it. The project manager at work who sent me to represent our clients at a public meeting despite my very obvious tremor. Most of these people don’t make a big deal about helping me out. It’s as if they don’t realize that what they are doing is actually a big thing.

The people who aren’t much help are the ones that want to give me advice. It seems like I know a lot of advocates of various types of alternative therapies. Some of them seem to regard it as some kind of failure if I just take my drugs and don’t care to investigate yet another new approach, especially one that I already know about, have investigated, and have decided against. Their insistence makes me think that it’s about their feelings of discomfort with my situation. Or maybe they’re triggering my own feelings that I should be trying new approaches; that it’s my duty to struggle and to win against this disease. As if that were really possible.