May 8, 2011

What's your reaction to this take on aging with Parkinson's or other afflictions?

The Washington Post's long-time and much admired former food critic and restaurant reviewer, Phyllis Richman, last week published a piece on living with Parkinson's that has already stirred up a lot of reactions.  She takes issue with what she sees as the overly Pollyanna-ish view of Parkinson's by Michael J. Fox in his Lucky Man memoir. Presumably she would react the same to my saying that last year, the first year of my Parkinson's diagnosis, was the best year of my life.

When I read her piece, I thought it provided a needed realistic take on Parkinson's.  It's not all fun and games by a long shot. Others I know, however, have been critical of what they felt was an attack on the importance of an upbeat attitude and humor to fight Parkinson's or other serious afflictions.

Here's the piece and I'd love to hear your thoughts on it:
Having Parkinson’s disease is nothing to celebrate

By Phyllis Richman, Published: May 3

     With apologies to Michael J. Fox, I must say Parkinson’s disease is not the best thing that ever happened to me.
     Picture this: One Sunday evening I walked up the street for a “meet the neighbors” party, eager to make connections in my new neighborhood.
     My husband decided to stay home. No problem, the party was nearby. I didn’t even take my purse: 11 years into Parkinson’s, I’ve pared down what I carry. I was burdened enough with my walking stick, a house key and a covered tray of chocolate mousses I’d made for the potluck.
     I’d verified on MapQuest that the address was no more than a couple of blocks away, the outer limit of my walking ability nowadays. I was looking for house number 425.
     It didn’t exist. The house numbers jumped from 423 to 500.
     I grew anxious. With Parkinson’s, stress seems to instantly drain my brain of half of its dopamine. It makes my back ache, my legs weaken and my foot curl. I tried to relax as I rested my tray on the hood of a parked car. Surely some other partygoers would come by and direct me.
     This is who came by: A woman with a couple of children and an apple pie, on her way to a dinner. Two passersby who wished they knew where a party was. An energetic woman with a dog. Two men carrying fishing gear, who thought I might be looking for 525.
     A young man shooting baskets said he figured 525 was just a block or two away and he’d be glad to walk me there. Unwilling to inconvenience him, I made my way alone.
     But the house at 525 was dark and silent. I stood there, exhausted and near tears, until I noticed the young basketball shooter: He had followed me to be sure I was all right. So I borrowed his BlackBerry and called my husband to rescue me.
     In minutes I was home, defeated. I curled up on the sofa for a good cry, but decided to take stock of my life instead.
     What is an appropriate attitude towards one’s own debilitating chronic disease? I realized long ago that with my future limited, it would be pathetic to waste the present by caving in to anger and misery. On the other hand, 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. That’s like saying I was fortunate to have missed my party because I’d gotten to meet half a dozen neighbors and still had the chocolate mousses.
     Michael J. Fox deserves enormous admiration and gratitude for spinning his affliction into gold for Parkinson’s research. But titling his memoir “Lucky Man” goes too far. I would have added, “as told to Pollyanna.”
     Remarkably few PWPs strike back at the world with constant complaining, though Parkinson’s creates an easy excuse to do so. It affects every part of the body — external and internal — with stiffness, slowness and refusal to cooperate. It tends to freeze the face into a stern mask and tighten the throat so that the voice becomes a hard-to-hear monotone. Clenched muscles, uncontrollable bobbing, drooling and disrupted gait are commonplace.
     The victims of this unattractive disease are more motivated to be ingratiating than to whine. Alone before our mirrors we practice pleasant expressions and warmer voices.
     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. They know as well as I do that they’re only going to get worse.
     I admit that Parkinson’s does offer some compensations of the “we’re all in one boat” variety. I’ve made some good friends among the therapeutic dance, choral and exercise classes and support groups I attend.
     My limitations heighten my appreciation of everyday comforts and small kindnesses. It’s not even unreasonable to say that Parkinson’s is educational. It provides knotty problems to solve and opportunities to test your grace under pressure. It comes with surprise attacks, sudden reversals, small victories. Sometimes I think of it as a real-life video game.
     As for Fox, Parkinson’s has revealed him to be selfless, inspiring — a hero. But lucky? That’s a stretch.


Jennifer said...

I had the pleasure of being in Phyllis's company several times, and her response in this piece is JUST LIKE HER: not negative, just realistic and even acerbic. It doesn't surprise me one bit, and it's a point of view I suspect is shared by many. Thanks for including this article; I missed seeing it in the Post.
Jennifer / Washington, DC

Nick said...

Read this letter and couldn't help thinking about Norman Cousins, whose humor, laughter, and positive spirit surely extended his life with heart disease. Couldn't that inspiring attitude only have helped him? He even discussed how hearty belly-laughs relieved his symptoms. Long live the power of humor, laughter, and positivism!

Let It Be said...

Interesting comments. To each his own. I can't judge Ms. Richman's point of view, any more than she can judge Mr. Fox's. But is she really in a position to invalidate his feeling?

Paul T said...

Laughter, dopamine and serotonin go together like... bacon, lettuce, and tomato. How's that for a recipe, Phyllis?
Paul in Eugene, OR

Maggie said...

Seems like a topical question: to celebrate (Parkinson's or the end of Bin Laden) or not to celebrate? The debate goes on!

Free Bird7 said...

Well, Ms Richman is entitled to her opinion, though I'd rather hear her recipe for chocolate mousse.

Nick said...

John, perhaps you'll ask Phyllis to play "guest contributor" on your blog. I'd enjopy hearing from her about the reaction to her letter. If nothing else, I'm with Free Bird --I'd like that chocolate mousse recipe!

Montana said...

Grateful for the reasonable point of view from this former restaurant critic. PD ain't no bed of roses.

Peter Dunlap-Shohl said...

I'm sure that Ms. Richman is a delight to know and a terrific writer. But you wouldn't be able to tell from this piece. The ability to put teeth on edge that she finds in MJ Fox is matched by her condescending line "I recognize in these authors a desperation to find value in their 'challenged' lives."

This is spectacular in its abrupt dismissal of people she doesn't know, and sad in its trivialization of their human attempt to find value in a life mightily complicated by a vicious and incurable disease

John Schappi said...

@Peter -- I just checked out your more extended comments on your terrific blog. If you don't mind, I'm going to post them in full here. (I'm going to put them up now, but if you have a problem with this, I can delete them. -- John

John Schappi said...

Actually, Nick, I'm going to try contacting her and see if she'd be willing to do a guest posting on any thoughts she has on diet/food as regards Parkinson's and/or aging.

John Schappi said...

Paul -- A member of my Parkinson's Support Group who is known for his satiric humor has reacted to all of this with a piece that I hope to past later.

Phyllis Richman said...

I absolutely agree that a sense of humor is vital to living with Parkinson's. Carefully cultivated, it doesn't wear off as quickly as levadopa.

If I left the impression that I feel critical of MJF and his opinions, I apologize. His feeling that he is lucky is generous and admirable. My point was that in living with a chronic disease like Parkinson's, whatever joy we find in our lives doesn't erase the limitations, the pain and the gloomy prognosis of the disease, which also merit acknowledgement.I have a wonderful and fortunate life--outside of PD. The facts of my life blend happiness and sadness; I am lucky along with being Parkinsonian, not because of it. But as an apology to anyone I offended, and a tiny reward for those of you managing under PD's constraints, here is a recipe for the quickest, easiest utterly luscious chocolate dessert I know:DON'T TELL THEM HOW EASY IT IS MOUSSE(Serves 4 to 8)1 cup heavy cream6 oz. bittersweet chocolate chips1 1/2 t. flavoring (vanilla, or maple, lemon, orange or any kind of cognac or liqueur)1 eggHeat cream in a small saucepan until it is steaming and just beginning to boil (so it is hot enough to cook the egg). While cream heats, pour chocolate chips into a blender or food processor. Add flavoring and egg. Pour hot cream into blender and immediately turn on high. Blend a minute or less until smooth. Pour into small cups, preferably demitasse size. Decorate if desired. Refrigerate until firm, around 5 to 10 hours. Serve with small spoons. This mousse can be frozen and served directly from the freezer or thawed.

Phyllis Richman

Peter Dunlap-Shohl said...

This is gracious and well said. Thank you for your generous response. Parkinson's Disease and our reactions to it are complex. Our ideas about how to view it will certainly evolve over time. But grace and generosity will always be as welcome as it is needed.

Nick said...

Grace and clarity: a nice combo. Thank you, Phyllis. By the way, my wife read the recipe and said she planned to make it, with Chambord. Another nice combo: chocolate and raspberry. Cheers!

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Roger said...

As I read Phyllis Richman's story, I could picture my wife doing the same thing and having those very same thoughts and feelings that Phyllis talked about.  Even to the point of coming home and crying.  My wife is 62 and was diagnosed with PD about a year and a half ago.  Some days are good and some days are not so good, but the things that used to be so simple are now much more of a challenge.    As I read some of the responses to her article I found myself once again wondering if there was ever a time a time when we could have meaningful dialogue without attacking one another?  Can we let our feelings be just that, feelings, and not view them as some sort of judgment. 

John Schappi said...

Roger -- I've given up watching most TV talk shows because of the prevalence of the attack-mode you mention. I've been pleased that most of the comments made thus far on this relatively new blog have avoided this and been respectful of the views of others. See, for example, the recent comments on the always ticklish subject of government spending on health care.
Sounds like you are determined to provide support for your wife through the ups and downs of this disease. Good for you!