Is there a conection with Dystonia and head truama?

Replies to This Discussion

Permalink Reply by Thorns on July 11, 2009 at 7:23am

Yes, one of the biggest reasons for people to get Cervical Dystonia is truama, and I hope you get a good movement disorder neurologist's. My family has no history of dystonia but I have two brother's plus myself who have dystonia and it effects all of us diffferently. Good luck Thorns

▶ Reply to This

Permalink Reply by joanne on July 11, 2009 at 7:11pm

Hi, thanks for your comment. Do you know anyone that has been affected with Dystonia because of a head trauma?

▶ Reply to This

Permalink Reply by 40K in UK on July 23, 2009 at 4:00am

Hi Joanne,

In answer to your question - Can anyone else find a connection with head trauma?

Can I bring your attention to a film called “Twisted” by Laurel Chiten. It is well worth seeing.

Have seen it on UK TV – albeit on remote and lo-profile Satellite Channel “Real Lives”. That was some time ago – haven’t seen it advertised recently.

Refer to the following link and introduction extract……….

http://www.blinddogfilms.com/twisted/index.html

When she was 17, independent producer Laurel Chiten hopped in a friend’s car and woke up in an ambulance. Months later, her head began to twitch. But it was more than 20 years before she was diagnosed with a neurological disorder called dystonia.

In TWISTED, Chiten’s narration connects the stories of Pat Brogan, a basketball coach and triathlete who developed dystonia after a bike accident; Shari Tritt, whose dystonia affects her whole body, and Remy Campbell, an artist who gambled on a radical form of brain surgery - and won.

Joanne, I wonder if you are a member of the UK Dystonia Society? I do believe that in a past issue of Dystonia Matters (Newsletter) I recall that they may have a copy of the “Twisted” DVD for its membership to view and show at support meetings, if not it is available online.

http://www.dystonia.org.uk/sitemap.html

You will find Dystonia Society newsletters on the above link as well as other information and Dystonia news, including an initiative by the Dystonia Society to issue a press release which has been used to raise an “adjournment debate” in the UK Parliament.
Sadly, there has been no further response from our MP’s as a small matter of the expense claims scandal has overshadowed any meaningful actions and now they have closed the UK Parliament for 81 days for their summer holidays.

I assume (and hope) the press release (shown in full below) will probably get more publicity through WEGO Health than it has in the UK media and press.

Isolated through ignorance

A survey among Britain’s 40,000 sufferers of dystonia – a serious neurological movement disorder causing painful muscle spasms - showed widespread ignorance about their condition among healthcare professionals and a lack of understanding amongst the public.

“It is shocking that a condition that affects so many people can be so little understood and poorly recognised by healthcare professionals on the frontline. This, combined with the lack of understanding amongst the public, only exacerbates the pain and difficulties of living with dystonia” said Philip Eckstein, Chief Executive of the Dystonia Society.
“People are left to struggle for years, often without even a diagnosis. As for treatment - which consists of injections of botulinum toxin to counter painful muscle spasms - it is patchy across the whole country.”

Labour MP and former Minister for Disabled People, the Rt Hon. Anne McGuire, has now agreed to table an adjournment debate in Parliament as a matter of urgency in order to seek a response from the Department of Health as to how this movement disorder can be better addressed by the medical service, especially in the ‘front line service’ of primary care.
Lord Macdonald of Tradeston, a patron of the Dystonia Society, said: “It is gratifying to see that awareness amongst general medical professionals has clearly grown significantly over the past decade. However for those suffering spasms of pain due to their dystonia, any delay in diagnosis and treatment is an ordeal. Members of the Society will be very heartened to know that the prospect of an Adjournment Debate and new engagement with the heath providers will improve the position for the 40,000 with dystonia”.

Dr Tom Warner, Royal Free Hospital and Medical Adviser to the Dystonia Society, said: “Dystonia is a common neurological movement disorder and yet it is often unrecognised by healthcare professionals as well as the general public. The involuntary muscle spasms can be very debilitating, painful as well as embarrassing and stigmatizing. For these reasons it can have a very negative effect on the quality of life of an individual. In one recent study of people with dystonia, the deleterious effect on quality of life was found to be as severe as that seen in people with multiple sclerosis and Parkinson’s disease”.

The Dystonia Society survey found that for the one in 1500 who are affected by distressing neurological condition, many have become isolated within their family and community through the lack of understanding of the ignorance of their healthcare professionals.

The Dystonia Society has revealed that 74% of members who responded were either ‘very worried’ or ‘concerned’ by the lack of awareness amongst medics. “The next area of concern among our members (64%) was an alarming lack of understanding shown by the general public,” said Philip Eckstein.

The Society claims that this is the first comprehensive questionnaire ever undertaken that has exclusively questioned people with dystonia about how the condition effects them physically and emotionally.

I’m glad to see more UK members joining WEGO Health. Dystonia and #dystonia Awareness is a global issue and basically it appears that no matter where you live on this wonderful planet of ours - sadly the problems are the same.

Joanne, hope the information about “Twisted” above helps.

Finally, my wife was diagnosed with ST a couple of years ago. Like you we wanted answers why - to date, no one has asked what do you think caused it. We have never filled in a detailed medical questionaiire. We have searched family history as well with no apparent evidence of a genetic link. I suspect that it was caused by trauma (stress rather than physical).

Best Regards

Ian (UK)

▶ Reply to This

Permalink Reply by Cheryl Sunshine Benson on July 27, 2009 at 3:24pm

that interesting, have abi, BUT Not tramatic. mine caused from medications as far as I know, antidepressants and tegrotol. celexa really did a bad job on me, they both did.

▶ Reply to This

Permalink Reply by MichelleSchwinger on July 28, 2009 at 8:30pm

I was in 2 very involved motor vehicle accidents in the years before my CD diagnosis, one of which produced almost immediate CD-like symptoms, but they went away. "Whiplash", I thought.

▶ Reply to This