The Parkinson’s Social Club

Not to sound like Pollyanna, but there’s a silver lining to everything…even Parkinson’s Disease.  I have met so many fascinating people (the minister, the sculptor, the Ph.D and on and on) because we share a Parkinson’s diagnosis.

An old college buddy introduced me to a friend of his with PD named Lori Campbell.  Turns  out she is a professional singer and composer (wow) and has so much extra creative juice, she has submitted videos to the Montreal (2013) and Portland (2016) World Parkinson’s Congress video contests.  The 2016 submission is called “Victory” and features Lori singing one of her own compositions.  If you look closely, you will notice the animated people in the PD support groups are made of jewelry.  I’m a big jewelry fan and I asked her about that.  Here was her response: “The jewelry is from various places around the world. I wanted to represent as much diversity as possible and thought my jewelry collection would be a personal way to convey the concept.”  And check out her 2013 submission (more singing!), “Rerouted”.

Another fascinating person I’ve “met” because we both have Parkinson’s is Natasha McCarthy.   She lives in Prince Edward Island in Canada, and is a fellow “official blogger” for the World Parkinson Congress.  Natasha is a mere 38 years old, mothebrain with question markr of two little girls, yet was diagnosed with PD a few years ago.  Her most recent blogpost is a particularly poignant reflection on the loneliness of a Young-Onset PD diagnosis.  All our communication has been by email, but I’m hoping to meet Natasha in person (and find out how she can wear those 4-inch high heels) at the Portland WPC in September.

And here is a Parkinson’s Social Club etiquette question:  What do you say to someone who has just been diagnosed with PD?  I got an email the other day from a friend I knew was heading to the neurologist, and the subject line simply said: “Yes”.   I’m sure I made a social faux pas by saying something to the effect that, since most of us get chronic diseases of some sort, PD is better than…say…cancer or diabetes or Alzheimer’s.  What a lame response.  Who has a better suggestion?

About Laura Kennedy Gould

Author of "The Magic Trick -- Life with Parkinson's
This entry was posted in Parkinson's People and tagged , . Bookmark the permalink.

6 Responses to The Parkinson’s Social Club

  1. Lori Campbell says:

    Thank you for the great review, Laura, and for helping the Social Club become more connected and engaged with one another! Really love your blogs and greatly appreciate your writing skills.

  2. Jean Davis says:

    That Victory video is amazing and can be uplifting to people with many trials in addition to PD.
    As far as social etiquette, for you especially you could say something like “it’s a special, huge club you’ve just joined. We have some awesome members and you’ll find some cool friends in your new PD club.”

  3. I always enjoy, and am impressed by, your blog posts.

    Re: your question “And here is a Parkinson’s Social Club etiquette question: What do you say to someone who has just been diagnosed with PD?”

    Why not call your friend and mostly listen to her/him talk? That might be the best thing you could do. You can later make suggestions about exercise, about reading Michael J. Fox’s books, about checking out the Michael J. Fox Foundation website, about the upcoming World Parkinson Congress, etc.

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