Wednesday, May 4, 2011

Parkinsons Disease: A Mixed Cursing

Here's a headline from a recent story in the Washington Post "Having Parkinson's disease is nothing to celebrate". Well, no. In the article that follows, writer Phyllis Richman, wrestles with the question "What is the appropriate attitude to one's own debilitating chronic disease?" A good question. A question to which I could not find her answer in the story, only criticism of the answers found by others.

Richman writes "I gnash my teeth when I come across people with Parkinson’s (PWPs, as we call ourselves) who declare that it is the best thing that ever happened to them." She goes on to complain "Articles, blogs and books by PWPs too often aim at the wry and cozy. They conclude that Parkinson’s brought them closer to their loved ones and opened them to a deeper satisfaction. I recognize in these authors a desperation to find value in their 'challenged' lives."

Excuse me? Aside from Michael J. Fox I have yet to hear of one person who says PD is the "best thing that ever happened to them" One can only imagine how abysmal a life must be for one to consider Parkinson's a good deal. One has to imagine this in fact, because no actual person is cited or quoted.

Likewise her assertion about would-be wry and cozy books and blogs names no names and cites no example of these sad and desperate people trying to find value in their challenged lives.

I can't speak for anyone else, but I doubt that I was alone in looking for a way to understand the purpose and value of life long before I ever got my diagnosis. Having Parkinson's Disease poses those questions in boldface, but is this really different for those without this wretched condition? If you're not desperate at some level, you're not paying attention.

How many of us will be granted a long and happy life followed by a graceful and dignified death? Who can say they will rise from their bed tomorrow stronger, wiser and more beautiful? Much of literature, philosophy and religion is a struggle with these difficult truths and their implications.

Nascentes morimur - From the moment we are born, we begin to die. There are two possible responses, denial or engagement. It isn't surprising that those who engage with the question and choose to go on with the agonizing, absurd, and wonderful enterprise of life find meaning in it. Why would they continue if the honest answer is there were none?

Richman does name one person she disagrees with. She says Michael J. Fox went too far in titling his book "Lucky Man." She is free to believe Fox is mistaken, but of the two, who is in a better position to know? Did Fox go too far, or is it Richman who has not yet come far enough?

Having Parkinson's Disease can be a "mixed cursing". No, it isn't a joy to wake unable to walk or to speak clearly. It's no fun managing and paying for the pills that can deliver relief only on the installment plan. It's not jolly and life-affirming to stagger erratically down a hall tripping over a rug. It's demoralizing to find yourself drooling when you swore you would avoid it through conscious diligence. Certainly, as the headline says "Having Parkinson's disease is nothing to celebrate". If it were, why would Michael Fox and so many others be trying to end it?

That headline, like the story misses the point. Parkinson's is nothing to celebrate. But the courage, dignity and ingenuity with which people often respond to it is inspiring. The grace shown by people who have the disease and the compassion of those dedicated to helping them can be examples of humanity at its most attractive. We would be ingrates not to celebrate that.


Bob Kuhn said...


just before I posted my blog on the same topic, the same article, with the same conclusions, I found yours. Since you have read my mind (or I read yours), I can only say, "Well done". I think your analysis is exactly correct. I also think this is one of your best posts ever. Insightful, balanced, witty and well-written. Thank you for all you do.

Peter Dunlap-Shohl said...

Actually Bob, I get that terrific RSS feed directly from your brain and just dump it in my blog. This is a fantastic time and energy saver that I call "precycling". In fact you have my blog written for the next two months, and some great pieces coming up, if I do say so myself. I should be thanking you, which I do now for that lovely compliment.

I had been thinking some of these issues over just recently and when her column turned up in my Twitter feed I thought it would make a good peg for them to hang from.

The thing I have heard people say that sets my teeth gnashing is , to paraphrase, 'Aren't we lucky that Michael J. Fox got sick?' The best answer I can come up with is "No, celebrities get sick all the time. We're lucky he chose to deal with it in such a constructive and comprehensive way."

Best regards,


Don said...

The best thing about having Parkinson's was stumbling into you two. I read each of you faithfully and you help more than you know. Thanks for all you do and keep up the great work.

Peter Dunlap-Shohl said...

Don, you are welcome. The attaboy is appreciated.

Festinate forward,


ECleary78 said...

My husband and I also pull a funny face when we hear about MJF talking about PD being the greatest thing to ever happen to him. However, remember that MJF is a recovering alcoholic, and 12 step programs base everything on taking the point of view that "if something is wrong in my life, I need to change something about me". In other words, rather than sit on the pity pot, you need to put on a smile and turn it over to your higher power. Addicts in recovery do this to keep from getting so overwhelmed that they relapse. Perhaps his attitude has a lot to do with his support groups. My point of view is that whatever helps a PWP deal with this awful situation is fine by me.
On a totally different note, David is starting Mirapex and we are very nervous after all we've read about it. I was wondering if you wouldnt mind sharing your personal experience with dopamine agonists. Do they help you? There are very few YOPD people we are in touch with so all this feedback really helps.

Peter Dunlap-Shohl said...

I take four three MG pills requip daily which I believe smooth out my on and off times due to a longer half life in the bloodstream than levedopa/carbidopa, which I also take. I have had no "Requippy side effects" as my neuro says aside from perhaps a slight obsession with the computer. My sense is that such side effects, compulsive gambling and sexual addiction for example, are serious but rare. I'd watch for them with Mirapex as he titrates up, but wouldn't worry unduly unless they show up, at which point I understand that ceasing the meds restores the former personality.
Side note: If there are reasons that you find that the agonists don't work but that ldopa does, I would not hesitate to stick with ldopa. Your mileage may vary, consult your doctor etc. etc.

Trevor said...

Very interesting!

Check out the responses to Phyllis Richman's article on this blog: