Wednesday, February 21, 2007

DYSTONIA SUPPORT GROUP OF CAIRNS

INAUGURAL MEETING

The Dystonia Support Group of Cairns will hold its inaugural meeting on Saturday, 24th February at 5 Compass Close, Edge Hill, Cairns. The Meeting will commence at 11.00AM, concluding no later than 1.30PM. Lunch provided. Sufferers, carers, family members are invited to attend. For further details please contact Sue Bayliss, 40324033 or email, s.j.bayliss@bigpond.com.au.

Dystonia is a neurological movement disorder that causes muscles in the body to contract or spasm involuntarily. The involuntary muscle contractions cause twisting, repetitive and patterned movements as well as abnormal postures.

Spasmodic dysphonia, cervical dystonia, blepharospasm, writers cramp, and early-onset dystonia are all different forms of dystonia.

Spasmodic dysphonia, also known as (aka) laryngeal dystonia, is a focal form of dystonia involving involuntary “spasms” of the vocal cords causing interruptions of speech affecting voice quality.

Cervical dystonia, aka spasmodic torticollis, is a focal dystonia characterized by neck muscles contracting involuntarily, causing abnormal movements and posture of the head and neck. Spasms in the muscles or pinching nerves in the neck can result in considerable pain and discomfort.

Blepharospasm is a focal dystonia characterized by increased blinking and involuntary closing of the eyes. People with blepharospasm have normal vision. Visual disturbance is due solely to the forced closure of the eyelids.

Writer’s cramp is a task-specific focal dystonia of the hand. Symptoms usually appear when a person is trying to do a task that requires fine motor movements. The symptoms may appear only during a particular type of movement, such as writing or playing the piano, but the dystonia may spread to affect many tasks.

Early-onset dystonia (idiopathic torsion dystonia, childhood-onset dystonia, generalized dystonia) usually starts in childhood or adolescence. Symptoms typically start in one part of the body, usually in an arm or leg and can eventually spread to the rest of the body, causing it to twist into unnatural positions. It is the most common hereditary form of dystonia, resulting in most cases, from the DYT 1 gene.

Dystonia is the third most common movement disorder after Parkinson’s disease and tremor. Nonetheless, dystonia is often misunderstood by the public and misdiagnosed by medical doctors. Dystonia is neither a psychological disorder, nor does it affect intellect. Dystonia is not fatal, but it is a chronic disorder that causes varying degrees of disability and pain, from mild to severe.

If you would like to ask a question or leave a message please do so by clicking on 'comments' below. It is okay to remain anonymous. Alternatively, you are welcome to email me on
e-address above. As many of you know, sometimes I am a day late in getting back to you but I do return messages. It is good to hear from so many people. Thank you.

Sue Bayliss. Cairns, Australia.

5 comments:

Yvonne said...

Hi Sue
Thought you might be interested in this blog posted by Scott Adams
Cartoonist who has dystonia and dysphonia - sorry havnt got the link thing sorted yet
http://blogs.zdnet.com/Burnette/?p=266

Sue Bayliss said...

Thank you Yvonne.
I will go to his site shortly. My speech pathologist home visit time is right now. Just waiting for her to arrive. After that I will look at it. Always good to hear from you. Hope everything is going well for you with treatment.

Yvonne said...

Do hope your visit with the speech pathologist goes well.
My treatment (I am three weeks from Botox) has had some positive effects - I have less pain and involment in my arms, although headaches still happening - I think it very much depends on correct muscles and doses injected and getting it right on the day.

This article about Leon Fleisher the pianist and a documentary called two hands that I would love to see one day.Dont know if its available to purchase on the net.
http://www.sbsun.com/film/ci_5266602

Sue Bayliss said...

Yvonne, Thank you for keeping in touch.

I am really pleased to hear you are feeling relief following your recent treatment. It all takes its toll but those weeks of good days seem to make it worth while.

The pain thing is sometimes difficult to get through to some medical people. I'm with you. With CD it all depends on how and which muscles are injected on the day. I think my tremor has greately improved following this last treatment. Certainly, the twist in my neck and head has been relieved but still happens sometimes, especially if I am feeling really tired and stressed about something. It feels like a piece of elastic tightening from the base of my skull to between my shoulders, pulling my head back and a little to the right. My shoulders seem to get into a funny uneven shape or tilt or something weird! Pain is less at the moment but I am still getting headaches too. It must be how it goes???

Swallowing has always been an underlying problem for me and is always considerably worse for some time after injections. My mouth and throat are incredibly dry and uncomfortable. Mouth swabs of grapeseed oil and peppermint essence is so relieving. Don't know if I am imagining it or not but I seem to be able to swallow a little easier after using the oil mixture too.

I have tried both sites you recommended but am getting the page unavailable message. Will try again tomorrow.

Yesterday I ordered another copy of Twisted so I can keep my copy and loan the other to family and friends. That way I will be able to hang onto my original copy. Those of my family and friends who have seen it have all commented on the emotional response they felt watching it. It is a powerful story - or stories of each individual. Amazing. I really hope it is screened in Australia during Dystonia week in June.

yvonne said...

Its very interesting to hear a description of how it feels from a fellow sufferer and what you describe is familiar to me. On a bad day my neck will often spasm severely in the morning and then that seems to set the tone for the day the pain worsens in my shoulder and then I get pain usually from my neck behind my ear and up that side of my head. I can sometimes get some relief by using various creams and sprays and using a hand held massager on the trigger points of my head.
Rest eg lying back in a recliner or lying down with head supported by a pillow gives relief as well.
Most days I get some degree of pain in my arms and sometimes nerve involvment in my hands - Do you have this problem? I wonder how common it is in dystonia sufferers.
I imagine my swallowing reflexes are not as good as they could be eg. sometimes I need to have two attempts to swallow food because it doesnt quite go down the first time, and dry food like chicken doesnt always go down that well. I sometimes feel I need to drink liquid to help swallow some foods. I havnt mentioned it to my Neurologist yet - figure I will wait and see if it worsens.
Tremor is very variable and seems to depend on a lot of factors such as stress tiredness physical excersise and most of all what I am doing such as sitting at the computer and trying to maintain my head in one position.
I am a very active person and tend to be on the go a lot and I wont give in. But I cant fit as much into my day as I used to, and at times I need to be a little easier on myself I think.