Dystonia Advocacy

May 9, 2012, marked my official debut as a health care advocate! Armed with determination and personal stories of struggle, I eagerly joined fellow Dystonia warriors on Capitol Hill to add our signature twist to the policy making process.

I had grand visions of a march down National Mall or 5 minutes of glory testifying into a microphone, CSPAN rolling, as Congress strained to understand me. Instead, I stood before security guards at Congressional office buildings and navigated a maze of hallways, elevators and underground trains only to find myself huddling with fresh-faced staffers who looked like college interns. In the name of improving our health care and growing research funding, we divulged details reserved for our diaries, battling to keep emotions at bay.

Trudging around in my sneakers, I hardly felt the power advocate but with Dystonia, it’s never beauty first. I rationalized that my footgear illustrated my plight. With all the walking, perhaps my greatest accomplishment was making it through the day.

Often, it was dishearteningly clear we were playing a numbers game. “How many people have Dystonia in New York State?” Gulp. Care for some North American stats? Hard to keep tabs on a disorder that’s largely misdiagnosed.

Though I realize funding decisions require difficult choices, in my estimation, securing the health of all citizens is one of the most important functions of government. Otherwise, our freedoms are largely meaningless. We were really fighting for everyone. Take a peak at our legislative agenda.

My crash course in health care policy taught me quite a bit about the halls of power in Washington:

  • Even if you inhabit the same state, Representatives aren’t interested unless you live in their district. Who ya votin’ for?
  • Talk about accessible workplaces, they’re not even disabled and they have their own private train system.
  • What do Senators and Representatives do all day? They weren’t in their offices, Congress wasn’t in session and it was a bit early for the campaign trail. That’s a mighty long lunch!
  • Teenagers drive legislative policy. No, not their sons and daughters, their aides.
  • Advocacy Etiquette 101:  Don’t ask Members of Congress about their healthcare plans…funded by us. Perhaps they remember the good ole days of paid health insurance. They’ll never need Medicare?
  • Crying in front of legislative aides gets you a box of Kleenex.
  • Our government apparently has Cervical Dystonia, causing it to bend over towards the well-connected. Without someone in D.C. lobbying on your behalf, you’re a long shot in the legislative game.
  • This was my inaugural event and I must say it was empowering to score my 2 cents for Dystonia. Maybe next year I’ll bake cookies!

9 responses to “Dystonia Advocacy

  1. Martin B Sloate

    It is very good. Daddy

  2. I wish I could be as confidant as you are with Dystonia… My first neurologist diagnosed me last year with Essential Tremor and then this year said it was psychogenic tremors and if I just take anti depressants the tremors and pain would go away so now I’m seeking out a new doctor to listen to my symptoms and not try and tell me that I don’t have Dystonia just because I’m only 30. I’m not depressed… I have a beautiful daughter (which thru childhood tramua I was told I couldn’t have kids), a loving boyfriend who loves me even with the tremors keeping him up all night when he works at 4 am every day Mon.-Fri. I took a video of my tremors to get others advice and they all said I should seek out people with more knowledge about this rare disorder and I should take the video to the doctor next month… which I will do… My tremors aren’t in just one area it’s all over and I just wish these government officials and doctors would realize that as a child you can’t just walk into a hospital to get help… the parents are the ones that are suppose to notice when things are wrong or at least not right with their child but if the parents ignore and have the mental image that every child falls constently and every child has trouble with their hands shaking etc. why is it the childs fault as she gets older that there is no medical records of tramua or tremors in the now adults records??? That’s where I’m at now is fighting to prove to these people that I’ve been like this since I can remember and my family just overlooked it as normal child misbehavior… I remember once being told to sit still and my cousin walked past me carrying food to the table and my leg swung out from the table and tripped her… I spent the rest of the evening out in the car cuz the family was embarrassed… Sorry I don’t know why I went on like this; I just don’t know many people with this and sometimes it’s the scariest feeling in the world… What if I gave this to my daughter? It breaks my heart cuz I can’t play with her like normal moms can and I just feel like sometimes I’m cheating her out of a good family… Even though I know that no one in this world could ever love my daughter more then me and my boyfriend do… It’s just hard to hear a 4 yr old cry ‘I’m sorry I hurt your shoulder again, I just wanted a piggy back ride like you use to.’ Just writing that now brings me to tears (it’s not depression; it’s just empathy… I feel my daughters pain because I can’t always play with her and she knows I have tremors she’s just too young right now to understand completely.) Sorry again, I just wanted to say thank you for being an advocate for people who are scared.

    Loving my life but terrified,

    • Thank you for sharing your story, that’s what this blog is all about. No one should live their life holding fear and frustration inside.

    • In your search for a doctor, you should contact the Dystonia Medical Research Foundation and The Bachmann-Strauss Dystonia & Parkinson Foundation. They can refer you to neurologists who specialize in movement disorders. You’ll find links to both organizations on my blog.

      • Thank you for the advice and support… As of August 1st I’ll be on my new new HMO so then I can start calling the names of doctors that I’ve been getting from the websites and others who have given advice… It’s just been a long 2 months without proper insurance… I’m hoping that I won’t need a referral to see a specialist with this HMO but from my research I might need to go out of state to be seen by anyone that knows more about Dystonia… Here in wisconsin the movement specialist I was seeing only specializes in Parkinsons’ and thinks that since he touched my arm and the tremor stopped then I don’t have any disorder and it’s all in my head… It’s funny though cuz this one Dytonia doctor I saw on youtube said that one way to determine that someone has dystonia is to touch the effected muscle and if the tremors stop while being touched then they start again once the area is no longer being touched it’s a sign of Dystonia… It’s just hard cuz you are taught to trust doctors but then when they don’t listen to your symptoms or you disagree with their diagnosis then they don’t want to help you and they just want to shove anti depressants down your throat. I took them before I they made me suicidal… I have a four year old daughter who I love very much and since I know that I’ve never been happier in my life I don’t want to risk taking pills I know don’t help my tremors… Yes all these pills they tried me on may help others but when it comes to my body; my body doesn’t like pills… even a simple asprin makes the tremors worse. It’s just really hard. I will keep you posted on the outcome once I have a new doctor.

        • With any medical issue, but particularly movement disorders, you need to be your own advocate and find the right doctor. If I were you, I’d start with a specialist who is familiar with the full spectrum of movement disorders, even if it means going out of state.

  3. Thanks you so much and I will keep you posted in the up coming weeks!

    • Please do. I truly wish you the best of luck. I’d be a little skeptical of doctors waxing poetic about Dystonia on YouTube. When I touch and then release the muscles that are involved in my Dystonia they don’t move. In fact, my muscles tend to move in response to stimulation, which is common, and are less active at rest.

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