ABC News Story - Dopa-responsive Dystonia and a persistent mom
I saw it and could hardly believe it. ABC News just did a fantastic piece about an 11 yr old boy, confined to a wheelchair, saved from that fate by his mother who wouldn't give up looking for answers. That, and a little pill called Sinemet.
I was very emotional. So much to be thankful for, bringing dystonia to the forefront again. So much to be thankful hearing of a mom taken seriously, and a boy who can now walk. So much to be thankful personally, as those here know I have my own personal story of persistence and dopamine responsive dystonia.
So, as I do tend to, I blogged about it. It would be very helpful for a few from the Dystonia community to comment if you have the time. I'll add it to my Twitter tonight as well.
A victory for one, is a victory for all of us!
And, thanks to ABC News. Tonight, you're my heroes!
View my blog post here
I was very emotional. So much to be thankful for, bringing dystonia to the forefront again. So much to be thankful hearing of a mom taken seriously, and a boy who can now walk. So much to be thankful personally, as those here know I have my own personal story of persistence and dopamine responsive dystonia.
So, as I do tend to, I blogged about it. It would be very helpful for a few from the Dystonia community to comment if you have the time. I'll add it to my Twitter tonight as well.
A victory for one, is a victory for all of us!
And, thanks to ABC News. Tonight, you're my heroes!
View my blog post here
Replies to This Discussion
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Permalink Reply by bentnotbroke on -
sorry I missed it!! I heard about it too late. Any way I can put a link on my FB page?? I will go to the ABC news site & check it out. Thanks, Ellen!
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Permalink Reply by FelicityNexus on -
Events like that make me smile!! To hear of how a mothers love can do so much to reach out for her son and to help others along the way. Thankgoodness for the persistance of the mom of the son. I didnt see the show , I wish i had seen it thoe
. Ellen I havent quite understood how to twitter yet.I agree how you said it is "a victory for one is a victory for all of us".It reminded me of the astronaght on his first step on the moon "one small step for man and one giant leap for mankind".
FelicityNexus
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Permalink Reply by Lene on -
I too am so sorry I missed that report. I am so happy for a step forward. I admire any mother who does what this woman did. I was that way also with my daughter who is Bi-Polar. She now in her 30's is a successful woman in her own right because I just would not give up until I got the right treatment for her. Now she has tools to work with, and she knows what to do and is doing what she needs to do to be Bi-Polar free. IF she starts to manic she applies all her knowledge and learning from therapist etc. If you met her you would not know she was Bi-Polar. She was labeled in grade school as being gifted. She has a high IQ. Lene
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Permalink Reply by Ellen S on -
Jenn, if you go to the link inside my post, you'll find the ABC story link is there.
So sorry you missed it!
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Permalink Reply by 40K in UK on -
So rewarding to hear of a great dystonia news item on mainstream USA National TV - also such a heart warming story.
I thought that Wego Dystonia Health activists may like to see how Dystonia is reported in the UK through the following articles in the press, on the BBC web site and in a neurological society brochure which is about a lady in Scotland.
Although they are alarming headlines and show horrendous times for diagnosis – as we all know, Dystonia awareness is of paramount importance and any story must help in spreading the word. Unfortunately when I mention these articles to my friends and working colleagues they are totally unaware of them.
Regards Ian
Woman Suffers from Rotating Head. “Going public has been a positive experience”.
http://www.theargus.co.uk/news/1365771.woman_suffers_from_rotating_...
http://www.dystonia.org.uk/fundraising-page40969.html
When Alison's head started to shake constantly she was terrified
http://www.mirror.co.uk/life-style/real-life/2008/02/01/i-had-botox...
November 2007 A grandmother has managed to speak for the first time in 14 years after doctors injected her with Botox. Phyllis woke one morning in 1993 to find she was no longer able to talk.
http://www.dailymail.co.uk/news/article-491961/Grandmother-talk-tim...
When Viv was 12 years old she was sent to a psychiatric ward. It was not until she was 23 that she was correctly diagnosed with the neurological condition dystonia, which causes sustained muscle contractions in various parts of the body. Diagnosis took eleven years
http://news.bbc.co.uk/1/hi/health/2668187.stm
Helen - January 2009, Surgeons put electrodes in my brain to cure my nasty neck spasms. The operation costs the UK’s National Health Service (NHS) £34,000.
http://www.dailymail.co.uk/health/article-1123062/Surgeons-electrod...
Scotland: I had the very first symptoms of dystonia in 1987. In November 2001 I was referred to the physiotherapist by my Doctor. On my next visit to the physiotherapist he informed me that he wanted to speak to my GP, before carrying out any further treatment. My GP at long last told me that my “learned trait” was actually a neurological condition called Spasmodic Torticollis, also known as Cervical Dystonia. The waiting time in my area to see a neurologist was over eighteen months! I felt I had waited long enough so, much against the grain, I went private and was seen within two weeks. The consultation lasted all of fifteen minutes; the diagnosis of Dystonia was confirmed. From first symptoms to diagnosis took fourteen years
http://www.scottishneurological.org.uk/sitebuildercontent/sitebuild...
For years the Casualty star, tried to hide the fact he suffered from dystonia, a neurological disorder which caused his neck and head to spasm.
http://www.dailymail.co.uk/health/article-410797/Botox-transformed-...
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Permalink Reply by Thorns on -
Sent the post for the ABS show to as many people that are in my mail box because it's awareness mth. here and this is a great venue to do this and all through the year I try to do the same with youtube video's. We should all become proactive and send as much information online to all we know to create as much awareness as possible all year long people have a habit of sending what sent to them on to others and so forth, great way to get the word out there in wed space.
Way to go in the UK for information through media, we've had articles also in the media, the more it's done the better for all of us. Thorns
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Permalink Reply by beka on -
Great Job , Ian, on informing us what is happening in the UK media wise.The more attention, the better.
I did see the ABC news report. Well done considering the reporter John Mckenzie, their health reporter, is a tough nut to crack when it comes to getting a personal story done. ABC News, in general is tough to crack, even their medical editor Tim Johnson, MD of Boston is !
The Link to the story is : http://abcnews.go.com/WN/MedicineCuttingEdge/story?id=7794330&p...
Start posting your own stories with dystonia on the link above. Be HEARD.
beka
I already did the other nite from work !!
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