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.

Botulinum Toxin: a safe treatment option for symptoms of dystonia.

We read about demands for safer administration of botulinum toxin by attaching notices on packaging and information to physicians. In this instance media in the United States of America reports the death of 16 people allegedly linked to the use of botulinum toxin injections.

Looking further than the original article makes good sense. We sympathize with the families of those who died and indeed think of the people themselves and how life can be cut short when least expected. However, much more information is required.

What do we know about the group making demands for stronger warnings? Do we know what their motivation for this request is? Were there other medical complications present when these people died?

What are the facts of which we are aware in relation to the use of botulinum toxin?

In coming weeks it will be interesting to hear more about this issue. Meanwhile, we do know that in relation to treating the symptoms of certain forms of dystonia, botulinum toxin is the favoured treatment. There is a great deal of evidence stating botulinum toxin is also a safe treatment.

Talking to your treating neurologist, family doctor or some other member of your treatment team is a good place to start if you have any questions about your treatment. The drug companies in question are reputable and have sound policies of corporate responsibility.

By all means, follow news articles about these warnings but please, do not consider changing your treatment plan without discussing this with the appropriate people first. The relief gained for people with dystonia using botulinum toxin is very well documented. I am travelling 1,600 kilometres to Brisbane next week for botulinum toxin treatment at The Royal Brisbane and Women's Hospital. My treatment team is indeed professional, trustworthy and reassuring, when ever I have questions about my dystonia or any form of treatment.

Follow the highlighted links in this article to understand better the concerns raised and watch for further information as it comes to light.

Sue Bayliss. Cairns, Australia.

Influenza - is it worth the risk?

The following important message is from Kidney Health Australia's Online Bulletin.

The National Institute of Clinical Studies (NICS) has launched their 2007 www.fightflu.com.au campaign and website to provide information about the real risk of influenza and encourage vaccinations amongst health care providers, carers and people of all ages at risk of developing complications such as pneumonia.

There are over 1.2 million Australians aged 18-64 who are in the 'at risk' groups because they have a chronic disease such as diabetes, kidney failure, cancer or severe asthma, said NICS CEO, Dr Heather Buchan.

We know that vaccination is the single most effective preventative measure against influenza, but only 42 per cent of those at risk are being vaccinated. Influenza can kill but vaccinations saves lives so avoiding it really isn't worth the risk, said Dr Buchan.

For more information, visit www.fightflu.com.au or contact Sue Montague on (03) 8866 0415 or email: smontague@nicsl.com.au

Sue Bayliss. Cairns, Australia.

Pills, potions, remedies and other interesting concoctions!

Okay, just how do we know what we are swallowing, sniffing, injecting, absorbing through our skin?


For accurate and balanced evidence-based information about medicines, the National Prescribing Services Limited (NPS) site provides what you may need to know about the Quality Use of Medications you or someone you know is taking. The NPS provides this site for use by health professionals and also consumers. The organization is an independent, non-profit member-based group, funded by the Australian Government Department of Health and Ageing. General practitioners, pharmacists, specialist practitioners, other health professionals, Government, pharmaceutical companies, consumer organizations and the community are all target groups the NPS strives to work with.

The links in this paragraph take you to three content pages on the NPS site. Firstly, this link leads you to evidence based information on prescribing drugs, educational activities such as case studies, clinical audits, pharmacy practice audits, and more. Secondly, this link takes you to consumer related materials and activities on medicines designed specifically for individual people. This link also provides a catalogue of free consumer materials which you are able to order online and thirdly, you are linked to the NPS corporate and media page. Here you will find media releases covering information on public affairs, marketer events, campaigns, member organizations or simply navigate through resources for media.

Meanwhile, if you have a need to talk to someone about medications, the Australian contact number for the NPS Consumers Medicines Line is 1300 888 763. If you are a health professional the NPS Therapeutic and Information Service (TAIS) contact number is 1300 138 677.

Do you live outside Australia? You may be able to locate a similar service in your country of origin.

The NPS in Australia provides a wealth of information in addition to that offered above. Wherever you live, I hope these links are helpful to you. You will find other interesting links throughout this article.

Sue Bayliss. Cairns, Australia.