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Who Needs PAM?

Monday April 03, 2017

Who needs Parkinson’s Awareness Month? Surely not people with Parkinson’s. The last thing we need is to have someone designate a particular month for us to be aware of our disease. We are aware of it every month, every day. We are aware of it with every step we take, every pill we take, every tumble we take. What we could use is a month off from this awareness.

Nor do our families and special care partners — if we are fortunate enough to have one — need to be any more aware than they already are of Parkinson’s and how it has affected their lives. They, too, could use a month off from awareness of Parkinson’s, a month off from the worry, the responsibility, the uncertainty, the tension of what it means to be responsible for someone with Parkinson’s.

Pete Nwpf CroppedWho, then, does need Parkinson’s Awareness Month? When the U.S. Senate unanimously passed legislation at the end of March, 2010 that designated April as Parkinson’s Awareness Month, all those senators must have wanted to set aside a time to call this disease to the attention of men and women who don’t know much about it. It is good for folks to be aware of this progressive, crippling, immobilizing, incurable neurological disease and to be aware of the needs of people with Parkinson’s disease.

But is mere awareness enough? Why isn’t it called Parkinson’s Action Month? If it were, what kind of action would we want people to take? The easy answer to that question is, of course, money. There are many local, national, and international organizations — such as the Northwest Parkinson’s Foundation — that can put your financial contributions to good use to to help make life for people with Parkinson’s and their care partners just a little bit easier. The fact that April is the designated month is a convenient reminder that contributing to such organizations reduces the amount of income tax you have to pay on the fifteenth.

But there are other answers, as well, to the question of what actions you might take to demonstrate your awareness of Parkinson’s this April. Most of us don’t need your help with most of what we do because most of need to do for ourselves. With Parkinson’s, once we stop doing a thing we don’t get to start it again. There will come a time when we can no longer dress ourselves, feed ourselves, walk by ourselves, and then we will need help, and so will our care partners. Until then, one of the best actions you can take is to invite us to help you in some way.

Pete and fam 

Your doing so helps us to feel useful. Ask us to help you build a bookshelf or wash the dishes or write a letter to your senator. Make contact with us. What many of us with Parkinson’s miss most is human contact. We embarrass people. People tend to stay away from us because they don’t quite know what to say to us. Don’t stay away, and don’t worry about what to say to us. Ask us how we spend our time now. Tell us how you spend your time now. Bring a joke, an anecdote, a game of Scrabble, a deck of cards. Bring a hug or a touch on the shoulder or a smile. Offer to take us along if you are driving to the market or to Home Depot or to the post office or to Golden Gardens or to an afternoon of fishing. One of the nicest things you can do for us is give an hour off, a day off, or a weekend off to our care partner.

T. S. Eliot in The Wasteland famously announced that “April is the cruelest month.” That has always puzzled me, because April has always seemed to be a joyful month. It is the month when winter is finally over, when spring comes busting out all over, when the earth comes into bloom after a winter of dry, dark, dormancy. I am beginning, now, to be able to guess what T. S. Eliot may have meant. April can be especially cruel because the rebirth of the earth serves as a reminder to some people that they are denied an April because their condition gets only worse season after season. When such people see April laugh itself in with sunshine and flowers it reminds them that their own personal April seems still to be dry, dark, and dormant.

What can you do during Parkinson’s Awareness Month? Find a way to take action to bring a little color, a little laughter, a little April into the life of someone you know with this disease. Find a way to remind her or him that T.S. Eliot was wrong about April, a month that is indeed full of warmth and sunshine and human growth and the old-time promise of good things to come.

Who needs PAM? We all do.

Peter G. BeidlerPeter G. Beidler
Peter G. Beidler

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