Are you a health professional interested in neurological movement disorders?

The Atherton Tableland and Cairns Dystonia Support Group invite you to attend a Movement Disorders Symposium on Wednesday April 16th 2008 at The Cairns Colonial Club Conference Centre, Lockhart Room, Behan Street entrance.

This exciting event brings together a panel of expert speakers discussing various aspects of a range of movement disorders; options for referral and treatment, recent research outcomes in Australia, Britain and the United States of America and the bio-psycho-social effects of movement disorders on patients in Far North Queensland.

Principal speaker :
• Dr John O'Sullivan (MBBS, FRACP, PhD.), a Consultant Neurologist, Neurology Department, Royal Brisbane and Women's Hospital, (R.B.W.H.) will be speaking about dystonia.

Additional speakers :
• Dr Steven Dommann, Consultant Neurologist, Townsville General Hospital. Movement disorders.
• Ms Karen O'Maley R.N., C.N.C. Neurology Department, R.B.W.H. Parkinson’s disease & other movement disorders.
• Ms Maree Brockie, Multiple Sclerosis Society of Queensland. Brisbane.
• Ms Melanie Mirotsos, Physiotherapist, Diagnosys Physiotherapy, Cairns.
• Ms Gail Rogers, Speech Pathologist, Cairns Speech Pathology, Cairns.
• Ms Suzanne Bayliss, Social Worker (Retired). Atherton Tableland and Cairns Dystonia Support Group.

For your information & interest the specific goals for the event are:
a. to present the opportunity for the medical / health professional community in FNQ to increase their knowledge from specialists regarding movement disorders
b. to communicate with the medical / health professional community in FNQ educational and promotional material specific to movement disorders
c. to establish a network of medical / health professionals in FNQ interested in Movement Disorders
d. to establish a Movement Disorders network / support group in FNQ
e. to increase support from the community by raising awareness of movement disorders
f. to increase resources for individuals to access
• timely referrals
• specialist assessments
• management services
• appropriate equipment & support.

With great pleasure we are able to provide this evening free of charge thanks to very generous educational grants by Allergan Australia and Ipsen Pty Ltd. whose representatives will be attending the evening. These grants will enable our local health professionals to continue their professional education in the areas of neurological movement disorders.

Programme:

6.00PM – Meet and greet on Lockhart verandah.
• Registration.
• Welcome drinks and canapés.
• Complimentary juice, soft drink and iced water.
• Bar available to self-purchase alcoholic beverages.
• Poster, trade and pharmaceutical displays.

7.00PM – Move through to dining room.

• Buffet dinner with banquet style seating.
• Guest speaker presentations.
• Panel forum receiving and responding to questions.
• Completing evaluation forms and collection of same.

Conclusion approximately 9.30pm


RSVP by 4th April to:
Sue Bayliss,
M: 0407 624 578
E: s(dot)j(dot)bayliss(at)bigpond(dot)com(dot)au

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.

Atherton Tablelands & Cairns Dystonia Support Group

plans a movement disorders promotional/educational dinner for Far North Queensland's medical practitioners and allied health people in April 2008.

World Voice Day, 16th April 2008 is the date set for the above mentioned function. Watch out for more information as we confirm the venue and details for the event.

Dystonia is a neurological movement disorder that causes muscles in the body to contract or spasm involuntarily. 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.

Although not commonly acknowledged it is interesting to note, Dystonia is at least as common as Multiple Sclerosis.

Focusing on movement disorders in general, the promotional/educational dinner provides opportunity for our local health community to meet, hear and ask questions, with treating neurologists and specialist nurse consultants from Brisbane and Sydney. In addition to our Southern guests, some of our local allied health people are speaking and available for questions as panel members.

Members of our Atherton Tablelands and Cairns Dystonia Support Group are now planning presentations for the evening in consultation with our guest speakers.

If you would like to make a suggestion or know more about this event, please leave a comment or email me (s.j.bayliss@bigpond.com.au). I will get back to you. All highlighted links in this article will take you to more detailed information about dystonia and other movement disorders.

Sue Bayliss. Cairns, Australia.

Dystonia. Home sweet home.

Hello and a very warm welcome to you here on this site. I have now returned home from travelling around Britain. There is so much for me to write about in the coming weeks.

Recently I have received many emails from around the globe. Thank you all for sharing your lovely thoughts and also for caring. Through seeking information and greater understanding of our own medical condition it seems we become a family of like minded people. In this way we have formed our own little on-line support group.

Support from others who understand our individual challenges in life is very important to us all. We are able to collectivise our experience and so normalize our lifestyle. Just to know we are in each others thoughts is an empowering experience. We are spiritually or emotionally uplifted so feel empowered to move on through our day.

Thinking about empowerment, last week I attended the Dystonia Australia Patient Symposium in Sydney. What an experience this is. I refer to present tense because returning home feeling so connected to all in attendance removes the sense of geographical isolation resulting from living in such a large country. Our Dystonia Australia National Coordinator, Nicola Dawson, is an amazing young woman. Her dedication and commitment to people with dystonia enabled the conference to flow smoothly. Each presenter addressing the group with an incredible focus on their personal topics of professional interest. Congratulations to Nicola and all involved - including our dystonics, even some from New Zealand. We certainly gained from our travel from all around the ridges. Look out Kiwi Land - next year, here come the Aussies!

All that remains now is for me to get all these mind's eye images from brain to finger tips and blog away! So, until later in the week, a fond farewell.

Sue Bayliss. Cairns, Australia.

Dystonia and dysphagia: that breath catching, coughing, spluttering, drowning thing!

Dystonia affects many parts of the body. It is a little known neurological movement disorder. Although chronic and non-life threatening, dystonia remains incurable at this time. Spasming vocal cord muscles is one form of dystonia called laryngeal dystonia, spasmodic dysphonia or spastic dysphonia. Another common form of dystonia is cervical dystonia, more commonly known as spasmodic torticollis. Most people favor botulinum toxin (botox) injections into affected muscles to treat dystonic symptoms. This treatment is used to soften the tell tale muscular spasms pulling muscles in different directions thus causing painfully twisted bodily shape. However, one of the nasty side effects of treatment for some types of dystonia is dysphagia, the inability to swallow safely.

Dysphagia symptoms may be monitored by speech pathologists. In some instances, modifying diet and thickening fluids provides good management of dysphagia. There are various types of drink thickener available for managing fluids. Pre-packaged thickened drinks (on this link scroll down pp 42-47 of 52) may offer some people a variety and change from daily routine of thickening all fluids.

Always seek professional opinion from your treating specialist who may refer you to an appropriate speech pathologist for follow up care and monitoring of your dysphagia. Some people who experience dysphagia as a complication following treatment find the symptoms are temporary and easily managed by learning what is referred to as a chin tuck when drinking. Your treating speech pathologist will be able to offer professional opinion on whether this method is appropriate for you. There are other aids that may also be useful for managing dysphagia, especially for those who have an underlying dysphagia condition that does not ease soon after treatment.

Cups designed for people with dysphagia may be recommended for you by your speech pathologist. One way drinking straws are a useful dysphagia aid for people of all ages. Again, your speech pathologist is the person to speak to about your personal needs in relation to using one of these especially designed drinking straws.

One-way drinking straws have a one-way valve allowing the straw to stay filled with fluid. Removal of the straw from the mouth or lips does not alter the level of fluid remaining in the straw. Inability to swallow safely while drinking may be harmful for people with dysphagia. This risk may be lessened or eliminated when using a one-way drinking straw. There are several options for purchasing one-way drinking straws. The highlighted words above link you to good examples of dysphagia aids.

If you would like to comment on what has or has not worked for you, please consider leaving your thoughts here so others may also learn from your experience. Personally, I use all the above mentioned aids to manage my chronic dysphagia which is always worse following treatment.

Sue Bayliss. Cairns, Australia.

Dystonia and commonly held perceptions: the sound of a funny voice or a portrait in the mind’s eye?

Fragile, computer illiterate little old lady? Not on your ninny, sweetheart!

This story reflects a personal experience encountered by the writer during the past fortnight.

Noticing more money than expected in her every day savings account the war widow checked her internet banking system. One regular fortnightly bank authority payment had been returned to her account with a comment. The message stated, “Payment rejected. Payments Service is temporarily unavailable. Please try again later.” Alarmed, the woman hears her forceful strangled sounding voice muttering aloud, “what does this mean?” Carefully checking account numbers on her internet banking screen, there is nothing different in the numbers. She notes the transaction occurs successfully on a fortnightly basis over the previous 15 months.

With spasmodic dysphonia and cervical dystonia, the woman has difficulty using the telephone keypad and speaking. Continuing to make approximately six to 10 calls plus several emails per day to her own banking institution and the company whose electronic system is suddenly rejecting payment, she persists in her efforts to resolve the situation. Alas, both institutions continually state the problem remains with the other.

Physical ability rapidly spiraling down, the woman’s effort to speak coupled with the sharp increase in pain from spasming neck, shoulder, arm, hand and vocal cord muscles result in her need to manage the situation some other way. Requesting technical support people at both institutions speak to each other on her behalf, the woman hears nothing for several days. Time to initiate a fresh approach!

Following a visit to the banking institution holding the woman’s personal accounts, further telephone calls and emails are forwarded on her behalf by very supportive staff. The situation continues with no resolution. Some major technical system difficulty within the company constantly rejects the payment. More telephone calls by several people to that company confirm their belief the problem is with either the woman herself or with her banking institution. Then, as is frequently experienced by people with dystonia, a bitter sweet outcome to a problem situation!

One very supportive bank employee suggests reversing two initial numbers of the BSB. The numbers appear to belong to an outdated financial transaction system. Achieving success by reversing the two numbers, transaction is accepted!

Feeling elated, the woman makes a courtesy call to the other company. Now two weeks since initial contact, she tells the young woman answering the phone of the result. Checking their accounts the young woman returns to the telephone stating the money has not been received. Suggesting the transaction may not show until the next working day, the woman is abruptly told reversal of the numbers would result in the money going somewhere other than to one of their accounts. The younger woman infers something to the effect that the problem is a lack of knowledge and ability to use internet banking because it is not happening to other customers. After a long pause she makes further statements referring to the woman’s inability to speak or to be understood. One suggestion is rather rudely made to take someone who can speak properly to her bank and sort it out.

Unable to initiate any speech in response, the woman bursts into tears resulting from two weeks of frustration, distress and fatigue. Other very hurtful and derogatory remarks are made both by the younger woman and another who also telephones the older woman back. Evidently they consider they are spending too much time on a problem situation that is not their responsibility.

When informed of the war widow’s great distress, staff at the banking institution holding her accounts are very supportive, reassuring and helpful. Unable to speak without great effort, the woman now ponders her options.

It seems the sound of an ageing lady with a funny voice and pain from a body twisted with muscle spasms when speaking on the telephone leads some to assume she is computer illiterate, lacks technical savvy, is unreliable with her problem solving skills and is not to be taken seriously. Well, we will see.

Disability Advocacy and Information Service Inc, and Human Rights and Equal Opportunity Commission are two avenues of support and action that may be available to people experiencing discrimination or social injustice. When approaching either of these services, referrals to other appropriate avenues of address are offered.

Those of us with spasmodic dysphonia may not have a voice but we can still roar. When our bodies are painful and twisted we may not be the first cab off the rank but just watch us run with the wolves. We are not God’s police, it is true. However, we are not damned whores either.

Sue Bayliss. Cairns, Australia.

Dystonia: collectivizing our experiences.

Dystonia is a little known about, non life threatening but chronic, neurological syndrome causing muscles to spasm and pull the body into abnormal positions.

When people who have dystonia manage to find each other it is an uplifting experience for all involved. Experiences of misdiagnosis and the perception held by many that the cause of dystonic symptoms is all in the head leads to intense feelings of frustration for sufferers. Contact with other people, who have experienced similar pathways before reaching a correct diagnosis and treatment of symptoms, leads to a whole new way of coping with life.

Navigating hospital corridors or waiting in a botox clinic is often the first opportunity a person with dystonia has of seeing, hearing and speaking to others who have the same neurological condition. Not a place where people usually become acquainted! However, there is a sense of collectivizing personal experiences that is better expressed as experiencing a process of normalization when a person finds they are in the midst of a group of people with similar symptoms.

For too long, many people with dystonia have been socially isolated and marginalized within their family and also their community. Seeing and hearing others with dystonia energizes or empowers people to share their experiences of coping by taking part in support groups or even to start a group in their area.

Support groups provide contact, comfort, reassurance, up to date information and a venue for sharing coping mechanisms. Through on-line or local community support groups, sufferers are able to help others and receive help for themselves.

If you would like to leave a comment please do so. It is okay to remain anonymous. Alternatively, contact me by email and I will get back to you.

Sue Bayliss. Cairns. Australia. (s.j.bayliss@bigpond.com.au)

Dystonia: identifying and acknowledging our limitations

Striving to reach our greatest personal, social, academic and or professional potential is encouraged in Westernized societies. Individual success is a highly rated family and community value. Collectivist family values are in contrast to the above. The latter social and family system provides a network where every person’s identity and value is for the common good of all. The former system requires a far greater sense of self responsibility to successfully maintain our personal well being. Therefore, in our individualist family value society, people coping with a chronic illness of any kind are expected to identify, understand and be responsible for personal health status and act accordingly.

Personal responsibility for our health includes knowing and understanding limitations of self in daily life. This may include acknowledging and feeling our anxiety, fear, anger and grief. Success of this largely depends on our image or sense of self within our Westernized community structure.

The sense of our individualized self within the symbolic interaction between ourselves and our world around us may lead us into a realm of exaggerated self expectation. We tend to ignore or at the very least, easily overlook our personal limitations on a day to day basis. As individuals, we may become unreasonable with ourselves when not meeting our mind’s eye image of what we ought to be able to accomplish. Whilst all to frequently forgetting it is okay to make mistakes, there is no requirement for us to meet unreasonable self expectations. It is okay to go easy on ourselves, especially when experiencing pain or discomfort on a regular basis. We can learn and apply skills of self care and management of chronic medical conditions through a change of lifestyle and personal commitments.

For people living with dystonia in its many forms, life can become unbalanced between what we feel comfortable with in daily routine and our perception of what others expect of us. It is so important for us to identify our limitations, live within our capabilities and seek out the companionship of others experiencing the same kind of challenges.

My next article will focus on Dystonia: collectivising our experiences. Please leave a comment or e-mail me if you have something you would like to say.

Sue Bayliss. Cairns, Australia. s.j.bayliss@bigpond.com.au

Dystonia: revisiting grieving and symbolic loss

Symbolic loss is how we describe feelings reflecting the loss of what we previously expected our life, health or relationships to be at any particular point in time. This is in a sense different to the intense feelings of loss associated with the death of a loved one. Although there is also a huge element of symbolic loss accompanying bereavement of loved ones, people coping on a daily basis with the symptoms of dystonia live with their mind's eye image of what they had hoped their life to be. Following diagnosis of a non-life threatening yet incurable neurological disease comes the inevitable cycle of coming to terms with how life will be from that time on. There are recognized stages of grief regardless of whether or not we are grieving the actual loss of physical ability and health, bereavement, or any kind of symbolic loss like changes to what our hopes and dreams had meant for us.

Five common elements in the stages of grief identified and named by well respected Elizabeth Kubler-Ross are denial, anger, bargaining, depression, and acceptance. In relation to dystonia, we may think of these stages as follows.

Denial – Initial sense of numbness when we say things like “I could be knocked over by a feather! This can’t really be happening, can it? It must be a mistake."

Anger – We may say things like “how dare this happen to me!" Blaming God, a loved one or some previous situation.

Bargaining – Believing we may influence a change in what has happened in our life by trading things like "There is no way I will be intolerant of others again if only I can be healed of dystonia.”

Depression – When ‘stinking thinking’ takes a hold in our mind and we just can not see any sense in doing anything or seeing anyone.

Acceptance – Well now. Life goes on so I had better get on with mine!

The above mentioned stages do not necessarily occur in the order described here. Each stage may mean very different things to different people. Some people may experience all of these identified stages, others may experience only two or three.

The grief experience may also be described as feelings of shock, anxiety, guilt and loneliness. The physical component of grief may have the effect upon us of a disturbed sleep pattern quite at odds with our normal routine. We may feel nauseous, lethargic, and unable to eat or enjoy food. When affected by these experiences we gradually become aware of how we need to make lifestyle changes, accepting that our life may never be quite the same again. We may look at how we have dealt with changes previously, how we can learn from those past experiences and what we need to do to adapt our lifestyle now.

Hopefully, the above links will lead you on a path of personal growth. Achieving a greater understanding about how to recognize and cope with feelings, pain and social isolation, associated with dystonia empowers us to accept our situation and collectivize our experiences through contact with others. This link will lead you to local, national and international, support groups.

Sue Bayliss. Cairns, Australia.

Dystonia: retaining a positive outlook.

Dealing positively with disabling forces of dystonia is possible by the person affected consciously acknowledging their personal set of circumstances. Acknowledging the presence of a chronic but incurable medical condition encourages each person to plan their strategies enabling resolution of the problem situations experienced in day to day living. Taking ownership of the problem situation and planning strategies to cope empowers us all to take action resulting in a positive, satisfactory outcome.

Taking action requires a decision making process. Making positive decisions leads us away from a negative image of reacting to symptoms of a disabling chronic disease. This reframing of our self perception is encouraged from within our very soul. By taking hold of that inner force and putting it into practice we are empowered by positive coping mechanisms of our choice.

Two very simple examples are firstly, a person with spasmodic dysphonia carrying a small card stating name, medical condition (spasmodic dysphonia) and a statement such as, “I know what I want to say, please be patient with me.” Secondly, someone with cervical dystonia may decide to regularly seek physiotherapy or remedial massage in addition to receiving regular medical intervention of botulinum toxin injections given by the treating neurologist.

The above examples indicate recognition and acceptance of a medical condition and developing a “love your disease” attitude to the presenting symptoms. This is one positive way to cope with or ‘deal with’ the symptoms of dystonia.

Every day is a new day! Coping with the symptoms of dystonia means that every day we have a choice about our attitude and our decisions. It does not have to be the same as yesterday or at any past point in time.

Brief suggestions for reframing negative perceptions, to positively engaging coping mechanisms, are as follows.

1. Coping in life with whatever is presented to us by recognising and stopping negative thoughts, embracing each situation positively and, taking action based upon the decisions of our choice.

2. Make a list of positive reminders identifying a choice of actions. Place these in strategic points around the house, office or wherever we will be.

3. Identify a set of goals for a day at a time, checking off each goal as it is achieved, thus reinforcing our newly formed positive attitude.

Tomorrow I will write about Dystonia: grieving symbolic loss. If you would like to leave a comment you are most welcome to do so.

Sue Bayliss. Cairns, Australia.

Dystonia: do we live with it or cope with it?

Is there a difference? In a theoretical sense, indeed there is!

Dystonia is a neurological movement disorder causing involuntary spasming and contracting of muscles. These muscular contractions in a person’s body have the affect of being twisted into an abnormal posture. There are basically two choices for sufferers to make. We can live with whatever happens on a day to day basis or we can deal with the symptoms by coping with them in a managed, structured way.

Firstly, living with someone or something means reacting to being in the presence of others or with something having an influence upon us, within us, around us, at that time. This may also be explained as an ebb and flow effect within a given dimension of time, space and culture. Secondly, coping with something means acknowledging the presence of whatever it is without denying personal affect that the form, other people or subjective experience of whatever it is, has upon us. The latter explanation means experiencing or dealing with someone or something, accepting what is happening and making a conscious decision to act in response to the given situation.

In relation to dystonia, the first step to coping means acknowledging that our neurological condition cannot be cured by medical intervention at this point in time. Accepting this reality leads to a greater interest in learning more about dystonia, the range of treatment options and understanding how to deal with what is happening in our life at any particular time.

Following on from this brief article, I will write a series of short articles about the following topics:

Dystonia: retaining a positive outlook.

Dystonia: grieving symbolic loss.

Dystonia: identifying and acknowledging limitations.

Dystonia: collectivizing our experiences.

If you would like to know more, please follow the highlighted links above. Alternatively, leave a comment to this article or email me. I will get back to you (s.j.bayliss@bigpond.com.au).

Sue Bayliss. Cairns, Australia.

Psst mate, get a load of this. Good as any post card, 'ay!

The Dystonia Support Group of Cairns.

Have you been diagnosed with dystonia?

Do you know anyone with dystonia?

Would you like to speak to someone who has dystonia?

Think you may have dystonia?

Interested in learning more about the many forms of dystonia?

The Dystonia Support Group of Cairns is meeting on Saturday April 21st in Atherton (sandwiches, tea & coffee, cold drink provided - just let us know you will be there).

You are welcome to join us at 11 o'clock in room 12 at the Atherton Community Centre in the old primary school, Mable Street, Atherton. Easy to find, opposite the Atherton Shire Council. Look for the green and gold balloons.

If you live in or near Cairns and would like transport to the meeting in Atherton, email me so we are able to arrange a lift for you.

If you live far, far away but would like to put forward a question or comment, we would love to hear from you (s.j.bayliss@bigpond.com.au).

(There are 10 informative links above, exclusing the email address, and two below. I hope they are helpful.)

Sue Bayliss. Cairns, Australia.

Oh by gosh, the pain of it is crippling!

Read about how musicians are affected by dystonia in Ongoing Research 2006/2007 - Focal Hand Dystonia affecting musicians in Scotland. It appears that focal dystonia is a condition musicians are particularly susceptible to. Using repetitive almost simultaneous finger and hand movements may trigger dystonia in musicians. One professional musician appearing in the DVD, Twisted, was unable to play piano for 30 years due to dystonic muscular spasms. Following treatment, botulinum toxin injections for occupational dystonia, he was again able to play piano.

Writers cramp, also referred to as task specific dystonia, is the name of one type of dystonia affecting many musicians. This task specific dystonia triggered by specific action or movement causes fingers, hand, and or forearm muscles to spasm. When the musician stops using those muscles, their hand and or arm spasms tend to relax. This form of dystonia is not only experienced by musicians but also by other people who are required to use specific, repetitive movements.

The linked Dystonia bulletin board, Musicians with dystonia bulletin board and Spasmodic dysphonia bulletin board, as well as the Blepharospasm bulletin board, are all available to dystonia sufferers, their families and or carers. Wherever you are, if you have dystonia support is readily available.

Sue Bayliss. Cairns, Australia.

Mummy, why is that lady doing the hokey pokey in the shopping centre?

Hokey pokey? Oh how I wish it was, little one!

That dreadful tremor suddenly appears as my hands go out to take hold of something. Usually, it is so good to sample whatever the sales promotion people are handing out. However, holding onto the little paper cup of juice and a delicate canapé at the same time can be very tricky when thinking, “Not now! Oh please, not right now!” Sure as God made those little green apples, the wobbles start! Right there in the supermarket isle. Slop goes the juice over hand and floor. Crumble, crumble goes the little toast thingy. Bits of whatever that was on the top now beneath someone’s foot as they struggle not to slip. Embarrassed? Uh ha, uh ha! Big time, mate!

Oh well, nobody ever died of embarrassment now, did they? Quickly regaining composure can be a little difficult when brain function, head, hands and carry bag just do not seem to connect in the correct sequence. When experiencing tremors, most people have little or no control over movement. In fact, many parts of our body may be affected by tremor.

There is no particular rule of emergence associated with the onset of tremor. The tremor may show its horrid little jack-in-the-box type appearance at any age! Sometimes it kind of sneaks its way into our movements, progressively developing in strength and frequency. For others, tremor may demand quite an aggressive introduction to our state of being. There is one thing tremors have in common. That is, intensifying during times of additional stress, nervousness and or illness.

It is something going wrong within our brain that triggers most tremors. The most common tremor is essential tremor. This form tends to appear when doing task focused things like writing, eating or using our hands in some other way. Tremor may be intergenerational within some families. Sometimes, tremor results from taking specific medications. Mental illness or emotional distress may contribute to tremor in some people. Tremor may also be associated with some of the following medical conditions.
Parkinson’s disease.
Dystonia.
Thyroid problems.
Multiple sclerosis.
Wilson’s disease.
Liver failure.
Brain injury.

If you have developed a tremor not yet diagnosed by your family doctor, specialist physician or some other health professional, seek a medical opinion now. Some tremors do not need specific treatment. Your doctor needs to be informed about tremor commencing if you are already on medication for another medical condition. Medication may need changing or dosage altered.

I hope you have found this article informative and helpful. Leave a comment if you would like to or email me at s.j.bayliss@bigpond.com.au.

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.

Dystonia by any other name is still a twisting, strangling, socially isolating pain!

Two of the more uncommon types of dystonias are known as firstly, X-linked dystonia-parkinsonism, otherwise referred to as Lubag dystonia. Secondly, Rapid-onset dystonia-parkinsonism, commonly referred to as RDP. Dystonia does not only affect the person diagnosed. Family, carers and friends also share in the pains, sorrows and joys, experienced by those suffering from the many forms of dystonia, a neurological disorder or group of movement disorders for which there is presently no cure. I am writing briefly today about the two above mentioned forms of dystonia and also where to look for support close to you, wherever you may be.

Firstly, X-linked dystonia-parkinsonism or Lubag, refers to a form of dystonia that seems almost exclusively to affect men whose place of origin is Panay, an island in Indonesia. Although men are predominantly affected, it has been established that their women folk are the carriers of the gene, Xq13.

Lubag dystonia usually presents as a focal dystonia meaning it affects one part of the body. The dystonia then progresses to generalized dystonia affecting many parts of the body before parkinsonian features eventually appear in the majority of cases. Lubag dystonia is different to Rapid-onset dystonia-parkinsonism commonly known as RDP.

Secondly, RDP is recognized as an autosomal dominant movement disorder or dystonia. This means there is a chromosome identified as 19q13 linking people with this form of dystonia.

These people seem to be affected initially by bradykinesia which is slowness of movement common to Parkinsonism including poor balance. However, there is the additional evidence of involuntary dystonic spasms in limbs, voice (spasmodic dysphonia) and swallow (dysphagia).

RDP symptoms may appear quite suddenly over several hours or sometimes, days. The age range for onset of this type of dystonia seems to be from approximately 15 years to 45 years of age.

If you or someone in your family is affected by any form of dystonia, you need not feel alone. Dystonia Australia lists many support group sites and contacts around the world. Please, take time to look at these by scrolling all the way down the support groups page and follow up by contacting someone close to you. There is a lot of information around if we know where to look for it.

If you would like to say something about dystonia, please leave a comment. Alternatively, you may prefer to contact me at s.j.bayliss@bigpond.com.au. I will get back to you.

Sue Bayliss. Cairns, Australia.

Get over it? Yeah, right! I don't think so mate!

Aching body, muscles spasming. Voice so soft but starts to strangle, words are slow. Head pulls back and sideways tilts. Dystonia is its name.

Thickening drinks helps me swallow without that dreadful drowning thing.

In my dreams I long to find some comfort, strength and peace. My constant shaking, muscle spasms and funny voice, others do not understand.

Botulinum toxin gives some relief but not for long this time.

Generations to come need our help now to find a cure for this neurological movement disorder.

Tomorrow and during the coming week, I will write more about dystonia in its many forms. Meanwhile, find out more about dystonia and tell your family doctor, your family and your friends. Many people are misdiagnosed or left undiagnosed for many years.

To be informed leads to better understanding and eventually to a cure. At this time, people with the dreadful symptoms of dystonia are only able to have those symptoms treated. There is no cure - yet.

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.

Feel as though you have slogged away all day without doing anything?

I can let you into a little secret as long as we get to SHOUT IT FROM THE ROOFTOPS!

The frequent physical movements associated with dystonia can be equivalent to the effects of working out for 18 hours a day. It is even greater for people whose dystonic movements continue during sleep. For these people, the affect experienced is equal to working out for 24 hours per day.

Dystonic movements of muscular spasms and tremor may result in significant levels of fatigue and diminished stamina thus making life more difficult to get through the day. However, we need to remember there is a risk of confusing fatigue with feelings of lethargy or a lack of motivation resulting from depression or some other medical condition.

Learn more about dystonia in all its forms. These links will take you to Dystonia Australia and the Australian Spasmodic Torticollis Association. Navigate your way around these sites and you will find links to other Dystonia sites in countries around the world.

As you learn more about this neurological disease, please consider how you may assist through donation to the appropriate Dystonia organization in your country of origin. Dystonia scientists require on-going funds to help them advance research leading to finding a cure for dystonia. Until a cure is found, the only hope for sufferers of dystonia in its various forms is to receive treatment of their symptoms.

I would like to let you know, I am traveling North to the beautiful little town of Cooktown tomorrow. My son and I are visiting my husband’s grave, an Australian War Grave, and also catching up with family and friends in that area. We return to Cairns mid week and will be back blogging then. Meanwhile stay safe, stay well and stay involved with learning more about Dystonia.

Sue Bayliss, Cairns, Australia.