Monday, November 2, 2009

Paths to meaning, salvaging quality of life with PD

Parkinson's Disease is no walk in the park. Unless your park is home to a mysterious debilitating assailant who steals up to you and attempts to slowly rob you of your life.

Diagnosis is devastating to the person getting the verdict. The words "Disease" "progressive" and "incurable" are toxic enough when used together to render the gentlest, most well-meaning words of comfort hollow-sounding. Following my diagnosis, I appreciated words of comfort and predictions of spiritual growth as well-meaning administrations of an emotional placebo. A sugar pill offered to fend off painful reality.

The pain of Parkinson's is real. There is physical pain and fatigue that arise from involuntary muscle contraction and stiffness. There is the embarrassment of loss of control of your body. Tremor and drooling are not the skills one cultivates to become one of the glitterati. Slurring of speech, falling and sexual dysfunction? Those amount to many of the downsides of being drunk with none of the upsides. At least drunkenness wears off after a time.

There is financial pain. The meds are not cheap. And if you're lucky enough to have decent insurance where you work, guess what. Parkinson's is likely to take your job, too. The tentative financial security that most of us live with, or are trying to establish can go *poof* with Parkinson's.

It makes a person want to scream. Oh, sorry, more bad news, your voice also goes. Tell you what. Instead of screaming, just whisper loudly. What's that you say? Come again? Oh. Whispering isn't a satisfying substitute for screaming? Not for me either. The line forms here for a literal life of quiet desperation.

I could go on, but the picture should be clear. What we have here is a one-way ticket to the sewer. The sad fact is that this is so clear that a recent study found a person with Parkinson's Disease is five times more likely to commit suicide than a person without. Unsurprising. I considered killing myself when I first found out that I was heir to all that Parkinson's had to offer.

It would have been a monumental mistake. If you're a little lucky, if you're willing and able to junk what you can no longer carry, if you're willing to take new paths to meaning, you'll be surprised at what you can salvage of life. And at what you might find that you were unable to see before.

How does one live with, much less claim acceptable quality of life in the face of the Parkinson's parade of horribles? From my experience, I found a long list of things. Here are some that are critical. This list should be read with the understanding that it is only made possible by all that others have done to advance the treatment of PD, and the hope of future advances.

First, there are worse things than simple PD. Parkinson's is slow, and furthermore with modern medications and surgery the worst effects can be held at bay for an indefinite time, certainly a long one. There are forms of "Atypical Parkinsonism" more pitiless than normal Parkinsons that do not respond to present medications and bring on helplessness and dementia with a ferocity that is as frightening as it is senseless. (to see the blog of one man's courageous journey into this dark territory, look here)

We've all lost friends and loved ones to quicker killers like cancer. In the years since I've been diagnosed I've seen the sun rise over 2000 times. I've watched my son grow into promising manhood. I've shared love, music and travel with my wife. This is certainly better than not having this span of time. Yes Parkinson's will take it all from you, but there is a certain satisfaction in making the bastard work for it.

Second, if you're depressed (and if you're thinking of killing yourself, you are depressed) get help. You're not alone. Nearly half of people with PD are suffering depression. This is an area in which pride can become a stumbling block.It's hard to admit that you are not in charge of your emotions. Cut yourself some slack, you've got Parkinson's Disease. Depression is part of the beast. You want to resist the beast. The pills certainly help me.

Third, exercise. This is worth a whole post in itself. I've even written such a post, several in fact, here, here, and here, for example.

Fourth, Don't stop doing things you enjoy. I still ride my bike, not as aggressively as I used to, but still with enjoyment. I still make music and draw, in some ways better and in other ways worse than I used to. I still bake, read, enjoy movies. No reason you can't too.

Fifth, get involved with your support group. Life needs meaning, especially when it feels damaged. You are uniquely qualified to benefit others who share your plight. You are a Parkinson's Disease expert. In helping others you will help yourself. I have tested this theory and am surprised at how well it works. You'll get tired and exasperated too, but these are signs of life.

Sixth, take care of your care partner if you have one. They deserve it. And more important, they need it. Gestures of affection and help around the house may seem like small things, but anyone who knows even a little of what you are going through will appreciate that you are working on a different scale.

Seventh, cultivate hope. Ask anybody who has been around this disease and they'll tell you that the last twenty years have seen a tremendous rise in the understanding and care of those with Parkinson's. We're in a position now to see the day when Parkinson's, if not cured, can at least be treated as something to manange, instead of something merely to be endured. And a cure remains a tantalizing possibility that will become reality someday.

Eighth: Keep your sense of humor. This is what it's for. There's nothing funny about someone with no problems, unless you mean "funny strange". But Parkinson's? That's a hoot! The slapstick alone around my house is at least Three Stooges quality, and did I ever tell you about Pam's idea for the Parkinson's Bobble-Head Doll?

That's my list. It works for me at least. Does it amount to nothing more than a complex version of the Placebo Effect? It might. But a placebo that lasts this long this effectively is better than most medicines.


Bob Kuhn said...


My sentiments exactly. There is so much wisdom found in the words of those dealing well with adversity . Your postings, and others like those on, have been inspirational.

While each of our jouneys are different, we can share them, and in the process be stronger and better able to do more than cope. We might even find some humor (see Slice of Life on Wobbly Williams site).

I am a 57 year old PWP (4 years since D-Day) in neighboring British Columbia and have a blog ( to encouage others wanting to do more than survive PD.

Let's take on the challenge to fight this thing. Every day!


Peter Dunlap-Shohl said...

Hi Bob, Thanks for the attaboy, good to hear from South of the Border! :)
What's your impression of the quality of PD care available to Canadians?

Festinate Forward!


Parker said...

I just read this article (3/1) as it was published in the Parkinson's Post (JAN/Feb) 2010 of the NW Parkinson's Foundation which came today.

Very good -- you may think it odd, but I most appreciated the initial statements of what a pain and embarrassment PD can be without a tone of whininess or victim-hood that creeps in so easily. To me, so far -- PD is just a fact - nothing more -- nothing less.I deal with it.

When I was younger watching people I cared about in their last years, I came to think of it as the "endgame". Sometimes It was long -- sometimes short. Sometimes smooth -- sometimes messy. And in general, one doesn't get to chose many of the options. But, we all have to play the game we are given.

Peter Dunlap-Shohl said...

Thank you for the kind words and thoughtful post.

The thing I keep reminding myself of is that the endgame can come to anyone anytime. In a sense, as you imply, there is no significant inherent difference in a person who has PD that is well managed and a person who goes about their life healthy and whole. Both face the endgame. So the question becomes "How do I best spend my time, the time I have today"? Tomorrow is promised to no one.