ABC News spotlights Dopa-responsive Dystonia, and a persistent mom
When I saw the teaser for the ABC News story this afternoon, I held my breath.
A persistent mom defies the doctors to find a cure for her son.
Could it be Dopa-responsive dystonia? It sounds right. Looks right. For me, a patient with my own dramatic story of Dystonia that responds to dopamine, it felt right to hope for such a victory.
I waited to hear the story, held my breath, and erupted into silent tears of joy and frustration for the little boy who was confined to a wheelchair, now walking and playing basketball... because his mom wouldn't stop looking to help her son. I wept for his mom who I know cried her own tears of joy and sorrow... and for the Cleveland Clinic doctor who dared to listen to a proactive mom and take a chance that she might be right. I couldn't help myself.
My husband stopped dead and watched, and exclaimed his own feelings about the doctor and the persistent mother. He has been there too, watching a persistent patient as she searches for answers.
Dr. Irwin Jacobs at the Cleveland Clinic said it was such a rare disorder that he had never seen it himself. My hat is off to this courageous doctor... this man who cared enough to listen, and to try something out of the ordinary. A neurologist who dared to give the credit to a mom instead of himself. If only there were more of him in every hospital. One more doctor looking outside of the box.
My hat is off to this warrior of a mom. Thank you for the lives you changed in addition to your son's because you spoke up. Thank you for taking action and for the stubbornness that it took to persevere. You have saved your son, and you have made a difference to a world beyond your own backyard. You gave a precious gift - Hope.
Every time someone finds an answer, the Dystonia community smiles. Our hearts leap for joy. Every time a victory is won for one, it is won for the whole. (Is that our beautiful Beka doing a little hamster dance of Joy?!)
I'm going to be smiling tonight, because the smell of a victory is in the air!
Oh, and Charlie Gibson and John McKenzie... thank you for spotlighting this story of courage and determination. Thank you for bringing light to a disorder that needs to see the sun.
.
A persistent mom defies the doctors to find a cure for her son.
Could it be Dopa-responsive dystonia? It sounds right. Looks right. For me, a patient with my own dramatic story of Dystonia that responds to dopamine, it felt right to hope for such a victory.
I waited to hear the story, held my breath, and erupted into silent tears of joy and frustration for the little boy who was confined to a wheelchair, now walking and playing basketball... because his mom wouldn't stop looking to help her son. I wept for his mom who I know cried her own tears of joy and sorrow... and for the Cleveland Clinic doctor who dared to listen to a proactive mom and take a chance that she might be right. I couldn't help myself.
My husband stopped dead and watched, and exclaimed his own feelings about the doctor and the persistent mother. He has been there too, watching a persistent patient as she searches for answers.
Dr. Irwin Jacobs at the Cleveland Clinic said it was such a rare disorder that he had never seen it himself. My hat is off to this courageous doctor... this man who cared enough to listen, and to try something out of the ordinary. A neurologist who dared to give the credit to a mom instead of himself. If only there were more of him in every hospital. One more doctor looking outside of the box.
My hat is off to this warrior of a mom. Thank you for the lives you changed in addition to your son's because you spoke up. Thank you for taking action and for the stubbornness that it took to persevere. You have saved your son, and you have made a difference to a world beyond your own backyard. You gave a precious gift - Hope.
Every time someone finds an answer, the Dystonia community smiles. Our hearts leap for joy. Every time a victory is won for one, it is won for the whole. (Is that our beautiful Beka doing a little hamster dance of Joy?!)
I'm going to be smiling tonight, because the smell of a victory is in the air!
Oh, and Charlie Gibson and John McKenzie... thank you for spotlighting this story of courage and determination. Thank you for bringing light to a disorder that needs to see the sun.
.
Tags: abc news, chronic pain, dopamine, dystonia, movement disorders
Add a Comment
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Comment by Ellen S on June 19, 2009 at 10:25pm - ..... Hope is the thing with feathers (Emily Dickinson), and sometimes it looks like a little yellow pill.
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Comment by Ellen S on June 19, 2009 at 6:58pm
- Hey Jenn, are you taking Sinemet? How are you doing these days?
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Comment by Jenn on June 19, 2009 at 3:50pm
- YAY bringing ppl together :P this makes me happy!!
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Comment by Jimmy on June 19, 2009 at 2:44pm - Appreciate the help, Jenn (I'm the writer mentioned). I'm on deadline today, and may have already gotten enough great comments from Jenn and Gale, but if anyone has a quick comment to email, might be able to work it in. Probably finished with the phone interviews now, though.
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Comment by Ellen S on June 19, 2009 at 2:07pm
- Thanks Jenn! Will email him and see what's going on...
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- For anyone who shares this disorder... the spinoff's have begun! I have been contacted by a freelance writer who's attempting to do a similar story of a family in AZ.. he is looking for information from other dopa-responsive people to help round out the story... if you are willing to talk about your symptoms.. Sinement.. or anything else related with him please email jimmy.magahern@gmail.com Thanks.. the more press the better Right??
© 2009 Created by Marie
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