Same Old Disease, New Friends


(Note:  Names are not shared so that privacy is protected)

Tonight I attended the second get together of a “social group” (for lack of a better term) for professionals with young on-set Parkinson’s disease (I had to miss the first one due to a prior commitment) at a nice Italian restaurant in Waukesha.   The idea of the group came from a guy I met at the Wisconsin Parkinson’s Association symposium last month.  His idea was to bring together young on-set P.D. patients who are or have been professionals in the work place.  This would be different than the support groups many of us are members of, as it targets a more narrow audience, and in that the intent is to hang out and do things together.   The support groups are great and necessary, giving a diverse audience a chance to trade notes and share experiences with the disease, and to pass on vital information about the disease to both patients and care givers.  This group promises to be something a little bit different, as we discussed ideas for future get-togethers like pub crawls, concerts and Brewers games.  The idea is that we get out with people we are comfortable with and do things together.

It was a great night.  I got to meet some very interesting and nice people, all young onset patients (One of the nice things about having PD is that, at age 53, it is one of the last demographics where I am considered young).  There was the former member of the Milwaukee Symphony Orchestra and graduate of Julliard who is looking to writing as an alternative to playing music, there’s the 22 year old student teacher, there’s the former computer programmer who only recently quit working, and the organizer of the group, a director of HR for a Milwaukee architecture firm.  Talking with them, I found I had something in common with each of them besides Parkinson’s, and, here’s the important part, I found them all to be vibrant, positive minded individuals who are looking forward to filling the next chapter in their lives with their passions and interests.

This is so important, because the natural tendency for people with PD, especially us young folks, is to withdraw and become more isolated, to become a slave to the disease and its slow parade of diminishing physical capabilities.  It’s a great thing to be able to get with people of a similar age and background and compare notes about the disease, but it’s even more important and downright inspiring to know that the ability to dream and the will to pursue those dreams perseveres.

I’m coming to the conclusion that there are two vital components to life, two elements that make getting up in the morning worth the trouble, whether you have PD or not.  One is the capacity to dream.  The other is a sense of community, the ability to connect and identify with other humans, and to share and honor their dreams.   Parkinson’s is an insidious little bastard that slowly steals physical capabilities and, if you’re not careful, if you don’t have a community to belong to, it’ll also rob you of your hopes and aspirations.

I look forward to deepening the new friendships I am making and the journeys I hope we will share together. Thanks to the organizers of this group for getting us together.

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3 thoughts on “Same Old Disease, New Friends

  1. Great post! I, too, have found a lot of positive support and community from meeting with other PD folks. Your point about isolating ourselves is well-taken – its easy to understand but doesn’t enrich our lives. I look forward to reading more from you.

  2. This is good, Dave. Very clearly written. You make excellent and strtaightforward points.

    Three lines that I liked the most:

    “I found them all to be vibrant, positive minded individuals who are looking forward to filling the next chapter in their lives with their passions and interests.”

    “It’s even more important and downright inspiring to know that the ability to dream and the will to pursue those dreams perseveres.”

    ‘There are…two elements that make getting up in the morning worth the trouble… the capacity to dream (and) the ability to connect and identify with other humans…to share and honor their dreams.’

  3. You have violated your heading “Drivel by Dave”.. Your deep personal observations on your future living without being defined by PD are wonderfully inspiring. “Dreams by Dave” should be your new heading. In your new group you have found way more than the sharing of PD you have found a community for living. Funny how we never seem to realize all we can be by being alone. We need the help of others to inspire and urge us on. I am delighted you have found such a community.

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