Meet My Family

Edited 6349133_sWelcome to my movement disorder family. We’re a motley crew of kissing cousins: Parkinson’s (the family favorite), Ataxia, Athetosis, Ballismus, Chorea, Dystonia, Huntington’s, Myoclonus (not a Greek island), Restless Legs, Tardive Dyskinesia, Tourette’s, Tremor…plus honorary member, Functional Movement Disorder. I’ve never met Michael J. Fox but it’s ironic that he starred in a show called “Family Ties,” which describes our relationship to a “t.”

There are two basic sides to our clan – the tortoises and the hares – but with a confluence of jerky motions, twisty movements, strange postures, twitches, shaking, stiffness, and shuffling, even we get confused distinguishing one another. Our overriding common denominators are dysfunction of the nervous system causing a paucity or excess of movement, and unsolved mystery.

Family reunions stand as tumultuous affairs that tip the Richter scale. Pre-printed nametags are de rigueur so no one has to write. After competing to see who’s the last to spill their coffee, we hit the dance floor for a Macarena that looks more like a bunch of campers fending off mosquitoes while stomping out burning embers barefooted. Back to the table for chocolate fondue. We converge on the pot with trembling prongs, trailing globs of liquid all over the tablecloth in decorative swirls. Next year, how about Jell-O for some dessert empathy! Of course, no reunion is complete without our banner song. Before departing, we gather for a telling round of the Hokey Pokey: You put your whole self in, and you shake it all about…

Whether our movements play out in slow mo or lurch along at the speed of light, we run the same race as everyone else, pounding our own unique pace. Take a moment and join the party, perhaps even shake, rattle and roll. We’re rockin’ out the dance floor so come on, baby, let’s do the twist!

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22 responses to “Meet My Family

  1. Great! And you didn’t even need the illustrations- you paint such a vivid picture with your words. Thanks.

  2. That’s cute🙂 – it is very hard to tell them apart – when I watched Michael Fox, he looked just like me on a bad day!

    • Hey Su, I’m with you. Every year the Bachmann-Strauss Foundation has a free patient symposium in NYC for Dystonia and Parkinson’s patients and I can never tell who has what! Writing this post was certainly an educational experience for me. I had never heard of some of these conditions and had no idea there were so many ways to characterize an involuntary movement. Stay in touch. -Pam-

  3. You didn’t miss a beat! Good time reading! Family is important.

    • Hi Mike, So nice to hear from you again. I must say this was a fun post to write…and I’m glad it was received in the spirit intended. Of course, I vastly underrate my stellar dancing abilities (lol)! You should see my Macarena…when I remember all the moves! Family is important and you are part of mine. Wishing you a Happy Holiday. -Pam-

  4. Pam, you continue to amaze!!! Your metaphors only get better and you make us all smile though reading about a very painful and heart rending disorder. You put many of us to shame. Keep the messages coming! Love, Roxene

  5. angela harshbarger

    I loved it.

    • Hello Angela, Thank you for taking the time to visit my web site. This was a fun post to write and I’m glad you enjoyed my humor. I find coping through laughter really is the best path. Happy Holidays! -Pamela-

  6. Pam,
    Another great article. How can we get you together with @Michael J Fox ?

    I know one of your family members is #Parkinson , he shares that member with you.

    Let me know how I can help!

    a fan
    Pepe
    #dystonia
    @siralexman

    • Pepe, You do so much simply by reading and commenting! Stimulating dialog about Dystonia and movement disorder is one of my purposes. Wouldn’t I love to work with the Michael J. Fox Foundation to advance our common causes. I’ll have to Tweet them my post, I already posted it on their Facebook page! I feel lucky to have a “fan” like you, a true inspiration! -Pam-

  7. I happen to know that you’re a killer salsa dancer, provided you don’t lead, of couurse🙂 I’m going to try to connect you with MJF xo

    • Stephanie, As I recall, I trounced the salsa dancing when I was allowed to lead (lol)! What can I say, I have the music in me…when I’m walking to the beat of the Backstreet Boys, my muscles are on the verge of behaving! Talking about family, you’ll always be part of mine! -Pam-

      • so you salsa too??

        • Pepe, Hey, I have a bit of an unfair advantage: Dystonia helps me get my hips going (lol)! Actually, I need to forget about my own involuntary movements and feel the music. It’s actually easier when I’m leading and not required to follow someone else’s motions (Dystonia aside, I’m a Leo and a control freak) but I’m the woman and my appointed role is otherwise so I try to relax…and refrain from stepping on my partner’s toes! -Pam-

      • Back atcha, although you’re delusional about that salsa bit

        • Stephanie, The mind is the last thing to go and mine is still here! You were teaching me how to salsa so you led and I was awful. Then in the burst of a brilliant idea you gave me the lead and BAM, I rocked! Remember? -Pam-

  8. mspattywoods@aol.com

    Thanks for the info..still looking for a diagnosis.Did you go to an event for movement disorders? I would like to be on a list when I know where I belong..or what I am .or just mystery meat forever..

    • Patty, Lovely to hear from you here. Didn’t attend a movement disorders event though the American Academy of Neurology really should hold a networking party for us! I just did my due diligence and frankly learned an enormous wealth of information. The characterization of movement is quite complicated, each definition seemingly a discrete condition. I surely know your need for a definitive diagnosis but always remember that’s entirely separate from who you are, and if I can put in my two cents, you’re a caring and determined woman with a great big heart who more than perseveres through difficult times. I’m delighted to call you my friend. I know it’s difficult but keep on trucking…my wish is that one day soon some doctor will truly earn his medical degree and “name that tune.” You’re certainly not alone on the long road to diagnosis. -Pamela-

  9. I have met Michael J Fox and his wife they were on a flight of mine a couple of years ago from Martha’s Vineyard to JFK. I never introduce myself to celebrities, but I had to this time. It was too important to me. I had had an extra keychain from Bachmann-Strauss and gave it to them while thanking them for all they do. I also explained I had cervical Dystonia. After I did my service, Tracy called me back to ask me some questions about my disease. I told her what meds I was on and then told her about the Botox I receive. She pulled me real close and said, “What did you just say?!?” I was taken aback because I thought I had offended her. She pulled me closer again and told me Michael has it in his feet and his doctor never once mentioned Botox to them. I tried to tell her maybe they couldn’t give the shots in the feet, but since have learned they do. She laughed as she said, ” We’ll you better be damned sure I’m calling his doctor as soon as we get home!”

    I never did follow up on them to see if he was able to get Botox or not. He was on a rerun of Katie yesterday and talked a little about the Dystonia he has in his feet. I was screaming at the TV, “Keep talking about the Dystonia, Michael!!” He didn’t hear me of course lol.

    I have often wondered if they remembered that crazy jetBlue FA who had told them about Botox. Maybe I can go through his Parkinson’s website to ask.

    • Bean, Nice to see you here again and thanks for sharing. I wouldn’t be at all surprised if Michael and Tracy remember that experience, it’s not every day you randomly meet someone with Dystonia who can chat about Botox! How lovely for them to have met you. Take care. -Pam-

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