[admin@dystonia]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #2456

Hi. I’m Lesley I have cervical dystonia. I was first noticed to have a tremor when I was 12 – 61 yrs ago! We have a family history of dystonia so it was just noted that I have the “head shaking” that ran in the family. At one stage it was thought to be a form of juvenile Parkinsons Disease. It was not always present at that stage and fairly minor so was not neeeding treatment. The tremor has gradually increased and following recommendations from my excellent GP I saw a Neurologist who trialed several medications, most of which I had side effects from and the others did not work. He referred me on for a trial of botox which I have been having regularly ever since.
Im looking forward to getting to know you all and hopefully sharing solutions to some of our most irritating problems. At the moment mine is fatigue. very inconvenient!
Cheers
Lesley

[admin@dystonia]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #1715

Hi Margot

Sorry I took so long to reply to your message. We have been away and had problems with mobile phones and computers. Home now. It took a few years for the gene to be found in my epilepsy but the only thing we had to do was send in a blood sample and a couple of interviews. The professor who found it was rewarded. Coming from a large family (five boys and one girl) definitely helped. Two of them are twins and they both have epilepsy. If you did want to be involved in research for Dystonia I am sure two days would be enough to get blood samples. I imagine Dystonia will be hard as we all have such different symptoms.

Talk soon,
Ros

[admin@dystonia]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #1638

Hi Everyone, I have just returned from The RNS Hospital who are conducting research into the genetics of Dystonia. No connection has been found between my brother’s Dysphonia and my Dystonia. They keep the blood samples that may help them in the future. Several years ago my family took part in research being done in Melbourne into Epilepsy. The research being done led on to the finding of a new gene. It is definitely worth being part of this type of research.

Ros

[admin@dystonia]

in reply to: Dopa Responsive Dystonia #1536

Dear Vonzie, I am going over old posts. I am happy to converse with you if you still have queries that have not been answered from other sources.
Laraine

[admin@dystonia]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #1533

Hi Margot, I have been reading about Taoist Tai Chi. Unfortunately there doesn’t seem to be any of their classes in my area – Gosford, Central Coast,NSW. I have found a few classes that are in my area including one that is held in the Chinese Gardens every Friday. Have been reading some previous posts and noticed you like to hear about any research being done for Dystonia. My brother has Dysphonia so we were asked if we would like to be part of research being done at The Royal North Shore Hospital. They are looking at the genetics of Dystonia. I saw them last year, gave some blood and they filmed me having an attack. I was asked last week if I would come down in May.

Regards
Ros

[admin@dystonia]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #1531

Hi Margot

Thank you for the information about your Tai Chi. It sounds just what I am looking for. I will let you know how I go after reading up on it.

Regards Ros

[admin@dystonia]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #1523

Hi Everyone. My name is Laraine. I am a co-founder of DNA but do not have dystonia. My background was as a specialist nurse in movement disorders for over 20 years until I retired 5 years ago. Please message me if you think I can answer any questions or want questions to be put to the advisory board. This will always be done anonymously and all answers will be general as the board cannot give specific advice. I will pop into the site every few days.

[admin@dystonia]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #1517

Hi Everyone. Sorry it has taken so long for me to introduce myself. My full name is Roslyn but most friends call me Ros. Unlike most people my Neurologist knew long before me that there was something wrong. I have Meige syndrome (cranio/facial Dystonia and Blephrospasm) I also have cervical, foot and hand Dystonia. Unknown to me it has been coming on for some months. It wasn’t until lst August last year when I couldn’t open my eyes, pain across my neck and shoulder, that I went to my GP. After checking me for infections she then told me that my Neurologist had told her I had Meige Syndrome. Apparently he had been watching my progress for some years and wanted to wait until I rep0rted some positive symptoms before telling me. I also have Epilepsy – not thought to be related to Dystonia – and have been seeing a Neurologist for 10 years and unknown to me he has a special interest in Movement Disorders. Every 3mths I have Botox around my eyes, jaw and neck and take a small amount of Artane. This is done by a different Neurologist. I am restricted what medication to take because of Epilepsy.

Tai Chi is something I have been considering for sometime Margot but am having trouble finding a suitable place. I have been to one but they were all over 80yrs. My brother and myself are involved in research looking at the genetics of Dystonia at North Sydney Hospital.

Looking forward to hearing from other people with stories to tell.

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