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.

G'day USA: Calling all dystonians ...

From dystonians in the 'Land Downunder' to dystonians in the U.S.A.: LA. and New York City, G'day and happy voice to you all including those with twisted bodies and nod, nod, nodders and shake, shake, shakers too - let us celebrate moving towards a cure for dystonia together!

If you are not yet a member of a dystonia support group do consider joining one near you. There are all kinds of support groups for people with dystonia. Have a browse on the various dystonia sites. They will lead you to exciting experiences of life by introducing you to new friends and providing lots of information about the kind of dystonia you have or your loved one has.

Stay a while and check out all the articles on dystonia and other topics. Following highlighted links will take you on endless adventures right around Australia - and the globe!

Sue Bayliss. Cairns, Australia.

De Gaper or Yawning man: Blepharospasm-Oromandibular Dystonia?

Meige’s Syndrome is also known as Breughel’s disease. So, what about it? Hmm. It is the dreaded dystonia, again. That’s what!!

Okay, this is what a couple of little nasties can do for you when you least expect it! We are talking about a combination of oromandibular dystonia and blepharospasm. So what are they, I hear you say? When both these forms of dystonia present together the result is called Meige’s Syndrome.

Firstly, oromandibular dystonia may affect the face, tongue, palate and jaw. It presents with abnormal mouth or tongue movements, grimacing expressions or forced opening or closing of the mouth. The many small muscles around the areas affected make this type of dystonia difficult to treat. Secondly, blepharospasm results from eye muscles spasming thus causing the eyelids to close suddenly without warning.

Blepharospasm is a form of dystonia that frequently starts with the eyelids blinking uncontrollably. Once the spasms close the eyelid, the person experiencing this may have great difficulty opening the eye or eyes again until the spasms ease. Vision is not affected. However, sight is seriously impaired when the eyelid is resistant to opening! Sunlight is known to aggravate this condition.

The name Breughel’s disease comes from the 16th Century Flemish painter, Breughel. He managed to portray the syndrome on canvas. In some cases, people with this form of dystonia are also affected by dysphonia, resulting from spasming vocal cords. Treatment is possible to relieve distressing symptoms associated with this rare kind of dystonia.

Botox treatment has proven successful for many people over a long period of time. The doses given are very small so there is seldom accumulation of antibodies. Surgery may also be an option for some people. However, both forms of treatment only provide relief of symptoms. At this time, there is no cure.

On-going research is needed to find a cure for all forms of dystonia. Dystonia research has not as yet attracted sufficient funding to allow appropriate follow up to the studies already underway.

Sue Bayliss. Cairns, Australia.

Hey! What on earth is wrong with your eyes?

Blepharospasm. This is a form of dystonia, a neurological movement disorder causing muscles to involuntarily spasm or contract. In some forms of dystonia, these contractions may result in twisting, repetitive movements and abnormal bodily postures.

The first symptoms of blepharospasm may be constant blinking, uncontrollable squinting, eyelids twitching and spasming, or experiencing great difficulty in keeping your eyelids open. Blepharospasm is described as a focal dystonia affecting the muscles associated with our eyes.

Focal dystonia refers to symptoms affecting a single body area. In the case of blepharospasm, it is usually present in both eyes. Initially, the spasms may begin in response to bright light, fatigue or emotional stress. Occasionally, spasms may progress to a stage where the eyelids close tightly for hours at a time. During these times vision impairment is due solely to the muscular spasms causing the eyelids to remain closed.

Eyesight, cognitive function, strength, and all senses are normal. Blepharospasm, like other forms of dystonia, is thought to result from abnormal functioning of deep brain structures known as the basal ganglia which are involved in controlling our movements.

Symptoms of blepharospasm respond well in most people when treated with botulinum toxin injections, commonly referred to as botox.

To learn more about this form of dystonia, follow the highlighted links above. If you would like to leave a message, please click on the ‘comment’ link below. Alternatively, email me at s.j.bayliss@bigpond.com.au and I will get back to you. I have been away this week and have many emails to respond to. I will reply to all by this coming weekend. It is lovely to hear from so many people. Thank you.

Sue Bayliss. Cairns, Australia.

Oh, oh, oh. It grabs me. Just like that!

Cervical Dystonia, also referred to as Spasmodic Torticollis, is frequently painful and very uncomfortable. This is one of several forms of Dystonia. Professional diagnosis is essential and a treatment plan formulated. People suffering from this form of dystonia experience involuntary contraction of neck muscles. This medical condition results in abnormal movement of head and neck, affecting posture and causing loss of balance amongst other unpleasant effects. Torticollis, Laterocollis, Anterocollis and Retrocollis, are the identified forms of Cervical Dystonia.

Torticollis is diagnosed when a person’s chin and nose turn toward one side. When this position is held firmly it is referred to as being tonic. However, when the muscles pull the person’s head recurrently towards this position, it is referred to as clonic. People may also be aware of a tremor of their head. Torticollis is recognized as the most common form of Cervical Dystonia.

Laterocollis is diagnosed when a person’s head is pulled towards one side or the other, towards the shoulder. Some people find their shoulder tends to lift upward. It is common for sufferers of this form of Cervical Dystonia to keep their head centralized or turn towards the opposite side. Together with Torticollis, Laterocollis is one of the two more common forms of Cervical Dystonia.

Anterocollis comes along as yet another form of Cervical Dystonia. This very uncomfortable form of spasming pulls the person’s head forward towards their chest. Although there may be nothing wrong with the person’s eye sight at all, needing to move eyes up so as to see forward for a reasonable distance causes discomfort not only to neck and shoulder muscles but to eyes as well. Lastly, we move on to one more form of Cervical Dystonia.

Retrocollis is so named because the muscle spasms pull the person’s head backwards. This is a particularly uncomfortable muscular position, somewhat dangerous for the sufferer. Head pulling back towards the spine, range of vision and also balance may be quite seriously affected.

The latter form of Cervical Dystonia as described above is the type I have, in addition to Spasmodic Dysphonia. To manage my life on a daily basis, I have a full time carer live with me. He is my youngest son, Darren. Also, being a War Widow, I receive assistance with home cleaning through the Australian Department of Veterans’ Affairs. Darren receives carer respite through the scheme, Home and Community Care (HACC). The HACC service provides me with a relief carer who takes me shopping or bill paying etc for two hours each week. Our very faithful and now very old Labradoodle, Gwyllum, is bathed and pampered by a mobile dog wash service weekly. In these ways my life style is much easier and less stressful than would otherwise be. I am no longer able to drive safely so do not drive at all. This is perhaps the one most difficult relinquishment I have had to come to terms with. There are many other things that assist me, such as varying forms of treatment.

Some future blogs will focus upon the diagnostic process for Cervical Dystonia, treatment options, symptoms and lastly, suspected causes. A very informative site readily accessible for further information is www.dystoniaaustralia.org.au from which you may also be able to access other sites closer to you. Please, consider leaving a comment so as to share with others your thoughts and experiences thus assisting other sufferers to identify with someone else. This empowers people to reach a level of normalization in their own life. Nothing worse than feeling isolated because of a funny voice and or a contorted body!

Sue Bayliss.
s.j.bayliss@bigpond.com.au