Thursday, January 31, 2008

Look. There it is, in the blink of an eye!

Blepharospasm is one of many types of dystonia. It may have a gradual onset first noticed as an eye irritation or watering eyes, uncontrollable involuntary blinking, winking or squinting, sensitivity to light and sometimes a feeling of inability to keep eyes open. Muscular spasms may close the eye or eyes causing blindness, not due to vision impairment but to the eyelid spasms. Dystonia is a neurological movement disorder.

Dystonia comes in many forms. It is recognized as the third most common neurological movement disorder after essential tremor and Parkinson’s disease. Although this is not a life threatening disease, dystonia does result in sustained muscular contractions causing twitching and repetitive movements in one affected part of the body, in adjacent parts of the body, several non-connecting parts of the body or over many parts of the body.

The first place to go when a person experiences any of the symptoms mentioned above is to the family doctor. Even if your local doctor does not know much about blepharospasm or any other form of dystonia, you can request referral for an opinion to a neurologist who has an interest in movement disorders.

Following a thorough neurological assessment by an appropriate neurologist, symptoms of blepharospasm and any other type of dystonia are able to be treated. Botulinum toxin injections are the favoured form of treatment for some of the dystonias. There is also oral medication, surgery and some alternative forms of treatment that your treating neurologist may discuss with you. In addition to discussing your options with your neurologist, it is good to know there are additional treatment options available from allied health professionals such as physiotherapists, speech therapists, occupational therapists, social workers and psychologists. There is even support available through support groups both nationally and internationally.

Support groups provide contact with others who have already experienced what you are going through. Geographical areas may place people a long way from each other. However, there is always the opportunity for telephone contact, email and on-line support groups. If you attend a botox clinic in a hospital you may feel comfortable chatting to others in the waiting room. Who knows, they may also feel a need to have contact with another person with dystonia too.

Newly diagnosed people may feel very alone and afraid of what this means for them in day to day life. Dynamics in relationships may change. Employment prospects may be different. Family responsibilities may need to be discussed both with loved ones and with someone in your treatment team.

Above all be a survivor, not a sufferer or victim of what ever form of dystonia you have. If someone in your family, a friend or perhaps a neighbour has dystonia, read all you can about this neurological movement disorder.

Be informed. Get involved. Make a difference. Together we will move forward and in doing so will find a cure for dystonia.

Sue Bayliss. Cairns, Australia.

2 comments:

Carbo said...

Hello Sue. My name is Steve Carbonaro, I live in San Lorenzo, California, and suffer from Blepharospasm. It took me a year to get an appointment with the "right" doctor, (she had a five month waiting list), and after numerous Botox treatments she recommended a limited myectomy. Surgery helped a lot, but I still need Botox every ten weeks.
But things are looking up! Good luck to you and thanks for the blog.

Sue Bayliss said...

Hello Steve, thank you for leaving your comment.

It is really good to hear that surgery has helped your condition and that you are also able to continue with Botox therapy.

It seems that for most of us it is a combination of treatment interventions that do the trick.

For me, in addition to Botox in my vocal cords and neck/shoulder muscles I have very regular speech therapy and physiotherapy. Also, I am very particular with diet and buy a huge amount of fresh fruits and vegetables every week.

We eat very little meat now but substitute meat with some fresh fish and chicken. Lots of pasta in all its forms too.

Diet is a really important part of treatment intervention for we dystonians, I believe. Fatigue is a dreadful thing for many people with the various forms of dystonia. At least really fresh foods seem to result in more energy!

So many of us have similar experiences of a long wait until correct diagnosis is made. These comments are global so we can not all be wrong, it really does happen like that.

I will be in the States in March for the NSDA (spasmodic dysphonia) Symposium at Salt Lake City. It will be so good to meet people from the States.

Hope you visit my site again some time. You are very welcome.