Belated news: Celebrating 2008’s World Voice Day in Cairns, Australia.

Allergan Australia and Australia’s branch of Ipsen Pty Ltd generously supported our Atherton Tableland and Cairns Dystonia Support Group in hosting 2008’s World Voice Day Celebration at the Colonial Club in Cairns.

In planning stages for that event we thought how great it would be to get about 30 locals from our professional community to come along. When we passed 30 RSVP’s we were so excited, realizing we could comfortably reach the 50 mark. Reaching 116 RSVP’s resulted in our decision to cut off at that point or we would not have enough funds to feed them all!

Networking was a major opportunity not missed by anyone present. Trade displays offered good insight into what is available and by whom. Photographic displays bore a pride of place for our support group and was of keen interest to all attending. During pre-dinner meet and greet drinks and nibbles we were serenaded by Raymond James Molloy, a local musician with a delightful Irish brogue.

Impressive presentations by Dr John O’Sullivan and Dr Steven Dommann focusing on neurological movement disorders and specifically on dystonia, gave many of our local family doctors and other health professionals first-rate information. Supporting presenters gave good overviews of the following areas:

• The role of Clinical Nurse Consultant, Neurological Movement Disorders,

• Diagnostic process, referral protocol and role of MS Queensland for patients with Multiple Sclerosis,

• Team work focusing on the assessed needs of patients by Allied Health professionals. Specifically, Speech Pathology, Physiotherapy and Occupational Therapy.

• Dystonia Support Group. Two member’s overview of living with Dystonia and attendance at a National Spasmodic Dysphonia Symposium in the USA.

Evaluation sheets completed by guests gave positive feed back and great encouragement to host another event at a future time. This outcome has given us renewed enthusiasm!

Amazing things happen when we take a step in faith. It is that very first step that makes such a difference!

World Voice Day 2009 will be celebrated in Cairns with our Support Group offering two screenings of the film Twisted. The first screening is on World Voice Day, Thursday 16th April 2009, and is suitable for local medical, nursing and allied health professionals. The second screening on Friday 17th April is for patients, family members and other interested community folk. If you would like more information, watch this spot!

Sue Bayliss. Cairns, Australia.

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

Come to Cairns and celebrate with us . . .

giving voice to neurological movement disorders on World Voice Day, 16th April 2008.

(Dr John O'Sullivan, pictured)


Are you are a health professional with an interest in movement disorders? This event is for you!

Principal speaker is Dr John O'Sullivan MBBS, FRACP, PhD. Dr O'Sullivan is a Consultant Neurologist, Department of Neurology, Royal Brisbane and Women's Hospital, Brisbane, Queensland.


Atherton Tableland and Cairns Dystonia Support Group are hosting this inaugural Movement Disorders Symposium at The Colonial Club Resort Conference Centre commencing 6.30 P.M. with pre-dinner drinks followed by a banquet style dinner and guest speaker presentations.

Accommodation is available at the resort for people from out of town who are attending the conference.


This free promotional and educational dinner symposium for medical professionals and also allied health professionals is possible thanks to very generous support by Allergan Australia and Ipsen Pty Ltd. RSVP by 4th April is essential (see below contact details).


Additional speakers are,

• Dr Steven Dommann, Neurologist, Townsville General Hospital.
• Ms Karen O'Maley R.N., C.N.C., (Parkinson's Disease and other movement disorders) Department of Neurology, Royal Brisbane and Women's Hospital.
• 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.

There will be a panel available for questions and answers following the speakers presentations. Ms Maureen Slocum from our support group will also be available on the panel.

Maureen and Suzanne are attending the National Spasmodic Dysphonia Association Annual Symposium in the United States, March 29th, two weeks prior to our symposium in Cairns.

If you would like to know more about this event, please contact me on mobile telephone number 0407 624 578. If you are visiting Cairns from overseas at the time of this symposium and would like to attend please telephone me on +61 407 624 578 or email:
s(dot)j(dot)bayliss(at)bigpond(dot)com(dot)au.

If you are a person with a diagnosed neurological movement disorder and would like to know more about this event, please contact me.

Sue Bayliss. Cairns, Australia.

(Please click on the highlighted links in this article for more information).

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.

Cairns Movement Disorders Symposium.

As convener of our Atherton Tableland and Cairns Dystonia Support Group in Far North Queensland (FNQ), I am delighted and very proud to announce Allergan Australia and also Ipsen Australia have provided us with educational grants to host a Neurological Movement Disorders Symposium in Cairns. The event will be held at the Cairns Colonial Club Conference Centre commencing at 6.30 p.m. on World Voice Day, Wednesday 16th April 2008.

Registration, attendance and dinner, are free to all medical professionals, allied health professionals and people with a diagnosed neurological movement disorder. Pre-confirmation of attendance is essential. Numbered tickets will be issued to all eligible attendees following initial contact and a fabulous door prize will be drawn towards the close of the evening.

The Cairns Colonial Club offer very comfortable accommodation that will be at a very reasonable cost for those attending the Symposium. Details of accommodation rate will be posted closer to the time of the event.

We invite all local health professionals to take this opportunity of being involved in this promotional and educational dinner by providing information to the participants by taking advantage of the poster and trade displays and the complimentary packets containing brochure information. We also invite you to advertise the event in to your network.

Our target audience group will primarily include medical and allied health professionals, members of the community in Far North Queensland who have a movement disorder and their carer or a close relative. These people may be geographically isolated from up-to-date information and liaison with others.

For your information and interest, 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 and,

f. to increase resources for individuals to access
· timely referrals,
· specialist assessments,
· management services and,
· appropriate equipment and support.

Over the coming weeks I will post information on this site about the progress of our planned event. We have excellent speakers from Brisbane, Townsville and Cairns, who are specialists in their field of neurology. We will announce our guest speakers following final confirmation from them on specific topics of presentation.

A brief summary of the Far North Queensland Movement Disorders Symposium is as follows:

The purpose of the Far North Queensland Movement Disorders Symposium on World Voice Day, 16th April 2008, is to offer the opportunity for medical and allied health professionals in this geographical area of Far North Queensland, Australia, to extend their knowledge and practice about a variety of movement disorders from specialist speakers and panel members. Professional practitioners attending the event will be eligible for Continuing Professional Education points.

Programme:

6.30PM – Registration table open:

· Meet and greet on Lockhart verandah, Cairns Colonial Club Resort Conference Centre.
· Welcome drinks and canapés on Lockhart verandah.
· Complimentary juice, soft drink and iced water.
· Bar available to self-purchase alcoholic beverages.
· Poster, trade and pharmaceutical displays.


7.00PM – Move through to Lockhart dining room.

. Continuation of poster, trade and pharmaceutical displays.
. Buffet dinner with banquet style seating.
. Guest speaker presentations.
. Panel forum receiving and responding to questions.
. Completing evaluation forms and collection of same.

If you live in this geographical area or further afield and would like to attend this very exciting event you may contact us as follows:

Atherton Tableland and surrounding areas: Maureen (land line telephone or email),
0740 917137; mumkoala(at)bigpond(dot)com(dot)au

Cairns and surrounding local areas, other areas of Queensland and interstate: Sue (mobile 'phone, SMS text or e-mail), 0407 624 578;

Overseas: Sue's mobile +61407 624 578.

E-mail: s(dot)j(dot)bayliss(at)bigpond(dot)com(dot)au

For your information, both Maureen and I have laryngeal dystonia, hence - 'funny voice'!

Sue Bayliss. Cairns, Australia.

Dystonia musculorum deformans is commonly referred to as generalized dystonia or early-onset dystonia.

Dystonia in its many forms including generalized dystonia is a frequently misdiagnosed and little understood chronic neurological disorder. Dystonia is not fatal but may be quite painful. Abnormal signals sent out by the brain block messages to muscles. This causes involuntary muscular spasms that may twist a person's body into abnormal positions. Neurologists with an interest in movement disorders are able to offer an appropriate clinical diagnosis followed by a treatment plan.

Generalized dystonia may present as more problematic to treat than other forms of dystonia. This type of dystonia frequently requires a combination of drugs suitable for the presenting symptoms. When favored treatment methods are no longer helpful in controlling symptoms the person may be referred for deep brain stimulation surgery. There is no guarantee of success resulting from this form of surgery. The risk of serious complications must be considered. Botulinum toxin injections are commonly and successfully used for treating symptoms of dystonia but may not be particularly helpful for the long term treatment of generalized dystonia.

Botulinum toxin injections into the overactive muscles is the safest and preferred drug therapy for most other forms of dystonia. Prolonged effect of the injections may be gained from physiotherapy, speech therapy and or other interventions recognized as beneficial for each person's need.

Appropriate support for people with dystonia and their families can be hard to find. It is through contact with others experiencing the same kinds of daily frustrations resulting from living with dystonia that individuals are able to feel normal. Talking to others who really do understand is a welcome relief!

If you would like to share your story or know more about dystonia, please leave a comment or email me (s.j.bayliss@bigpond.com.au). I will get back to you.

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.

What is it like, living with dystonia?

Have you ever thought twice about telephoning someone you know who has difficulty speaking? Perhaps you know the feeling of impatience when someone is clumsy and slow? Do you know what to say or do when your loved one’s hands, body, neck or head are twisted into abnormal positions? What is it like for you when out for coffee with someone who suddenly regurgitates their drink through nose and mouth whilst coughing and gasping? How do you look at someone whose eye or eyes slam shut, unable to open voluntarily? Do you understand what it is like to live with dystonia?

So many questions! However, there are also answers. We just need to know how to find them. Some people say how difficult it is to understand a person with spasmodic dysphonia (SD) on the telephone. For those of us with SD, hearing the recorded playback of what our voice was like prior to receiving treatment can send little shivers of embarrassment all over us. No wonder we never liked using the telephone. It is not surprising so many people hesitated contacting us by telephone! TTY phones (Teletypewriters) are available for people who are deaf, hearing impaired and also speech impaired. This method of communication is good both before and after treatment.

Following treatment the situation does not necessarily improve. Botox injections into vocal cord muscle leave many people with very soft voice, sometimes for a few weeks or even months. Quality speech pathology intervention assists people overcoming difficult voice situations. Learning sign language offers communication for people who are deaf and for those with speech and hearing impairment too. Once we start signing others soon learn basic signs, getting the gist of what we are saying.

Although signing may be clumsy or slow, people with cervical dystonia or any form of dystonia may become clumsy or slow in their body movements. Spasming muscles create discomfort and pain as well as embarrassment for the person experiencing this. Dystonia invades almost every aspect of a person’s life.

Learning to live with dystonia may mean life changing adjustments. Going through the diagnostic process for dystonia in all its forms is challenging. Then, settling into a dramatically changed lifestyle is not easy for most people. Living with disfigurement, discomfort, pain, and the potential for social isolation, dystonia sufferers soon expose others to our determination and the creative strength of our soul.

If you or someone you know has dystonia, I hope this article is helpful. Links in the latter paragraphs are there to emphasise the broad range of symptoms associated with dystonia. Please, consider leaving a comment (this can be anonymous) or contact me by email (s.j.bayliss@bigpond.com.au) if you would like to say what living with dystonia is like for you or your loved one.

Sue Bayliss. Cairns, Australia.

Dystonia and the outcome of botox treatment: having your say!

Shush! What is she saying? I can’t hear her.

For people with spasmodic dysphonia, also known as laryngeal dystonia, speaking can be an incredible effort prior to treatment. This form of dystonia is considered rare. Caused by overactive movement of muscles of the larynx, a smooth flow of speech is impossible. The person’s voice may sound strained, effortful and experience sudden interruptions causing the voice to momentarily drop out during conversation. Botulinum toxin injections remain the preferred treatment for the majority of people suffering from spasmodic dysphonia. Following treatment, the vocal cords are temporarily relaxed until the effect of the toxin begins to wear off. Although speaking is effortless after treatment, the person’s voice may remain very soft over a period ranging from weeks to months.

Voice amplifiers designed to magnify very soft speech may be an advantage for managing the post treatment phase of the cycle of treatment for people living with spasmodic dysphonia. At the recommendation of my treating speech pathologist following a needs assessment, I trialed several brand names of voice amplifiers with a selection of microphone systems. For my personal needs, trialing several systems has been most beneficial. Together with my treating speech pathologist we have made a decision on the machine most suitable for my needs. For some people, funding is available to purchase the appropriate communication aid through the Queensland Government’s Medical Aids Subsidy Scheme (MASS). There are eligibility criteria to meet before being able to access the MASS in the Australian State of Queensland.

Browsing through the links in this article may assist you in tracking communication aids suitable for your needs or for someone known to you. Alternatively, your family doctor, speech pathologist or nearest Community Health Centre may be able to assist you.

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.

Dystonia, botulinum toxin, dysphagia and xerostomia

What do they have in common? Well now. To be concise, possible reactions in a minority of patients following treatment for dystonia, a neurological disease!

In greater detail, dystonia symptoms in its many forms respond well to botulinum toxin, otherwise known as botox, for the majority of sufferers. However, one of the complications associated with botox therapy for some forms of dystonia is dysphagia, difficulty with swallowing. Some people may also experience xerostomia, dry mouth syndrome.

Dysphagia (reputable link but 19 pages) and or xerostomia do require monitoring for two important reasons. Firstly, ensuring patients remain safe and comfortable during the swallowing process. Secondly, ensuring your mouth remains moist enough for oral comfort and a good level of health.

The links in this article provide good information about relieving the symptoms of dysphagia and also xerostomia. If you experience any of these symptoms please, discuss this with your family doctor, treating specialist or speech pathologist.

There are excellent pharmaceutical products available to provide relief for both the above mentioned medical conditions. Alternatively, thickening sauce or gravy based foods such as casseroles and stews will be helpful for people with dysphagia. Drinking thick shakes or fruit smoothies offers variety and change from thickening drinks.

In reference to relief for dry mouth syndrome, an alternative to pharmaceutical products is a good, economical home remedy for relief of xerostomia. This is, one part peppermint essence to six parts grapeseed oil (both available in supermarket). Coat the inside of your mouth and tongue with either cotton buds/tips or throat swabs dipped in the solution as required. I have used this remedy on recommendation of a speech pathologist and find it is reliable, comfortable and inexpensive.

Always discuss your specific needs with the appropriate person from your treating team prior to changing what you are currently doing. Also, discuss the above suggested home remedy with your treatment team before commencing this yourself.

Please, leave a comment if you would like to or contact me on my email address below. I will get back to you.

Sue Bayliss. Cairns, Australia. (Additional cyclone link included here)
s.j.bayliss@bigpond.com.au

Do you or someone you know have difficulty swallowing?

Living with dysphagia is made easier by identifying and managing the symptoms. The highlighted link above is an excellent 30 page information resource booklet for learning about difficulty in swallowing and what to do about it. Additional information in this little book offers contact phone numbers for service providers and site addresses to access for people living in Australia. The content of the book is also very useful for those living outside Australia. You will find information in the book about the following areas of interest:

• Definitions and symptoms
  Swallowing process
  What is Dysphagia?
  Causes of Dysphagia?
  Who does it affect?
  How is it diagnosed?

• Quality of life
  Risk factors and problems associated with Dysphagia
  How do you manage Dysphagia?

• Support
  How can family and friends help?
  Who can help?

• Glossary
  

Dysphagia may occur for some people following treatment with botulinum toxin for dystonia. Specifically, laryngeal dystonia (spasmodic dysphonia) and also for cervical dystonia (spasmodic torticollis).

If you would like to read a summary of the booklet or have specific questions to ask, please leave a comment by clicking on ‘comments’ below or email me (s.j.bayliss@bigpond.com.au) and I will get back to you. Although we may access excellent resource material on the web, there is no substitute for discussing our concerns with the appropriate person in our treating specialist team.

The booklet discussed above prints out as two pages per A4 paper in landscape view. The cover page and rear page print out as portrait view. It does take some time to download.

Sue Bayliss. Cairns, Australia.

There is more than one way to voice an opinion!

Having a funny voice and a twisted neck doesn’t mean I can’t enjoy settling into a great new year! The only problem has been limitation of speech and a big pain in the neck. However, that is all under control. Not only has botox therapy relieved the tight spasms of speech and the pains in my neck and shoulders, I have returned to sign language classes. I must admit, I do need to ‘reframe’ many of my signs or should I say gestures? Sheer frustration gets the better of me most of the time and my signing means something else altogether!

Returning to Auslan (Australian Sign Language) classes offers me significant hope of managing the frustration associated with difficult voice and a body that just does not go into the shape it is meant to. Like riding a bicycle, lots of signing skills came flooding back into my mind. The problem with that being my dreadful clumsiness and inability to coordinate my fingers and hands mean the signs I intend to make actually mean something else at most inconvenient times!

People suffering from Dystonia including spasmodic dysphonia will know exactly what I mean. In coming weeks I will write about my journey along a pathway of discovery as my son and I travel further into that wonderfully diverse world of language.

Before we get too far along the adventurous path of signing, I would like to tell you a little about symbolic interaction theory, otherwise recognized as the development of society through the limitless interaction between individuals. Tomorrow, I will write about symbolic interaction as a way of explaining communication. Until then, you may recall a favorite book or movie that has impressed you with examples of different kinds of communication.

For those reading buffs or even movie fans, Clan of the Cave Bear by Jean M. Auel is a good example of using communication very differently to how we commonly think of communication.

Leaving you with food for thought.

Sue Bayliss. Cairns, Australia.

Twisted. Living with cervical dystonia and spasmodic dysphonia.

Have you seen this film?

Twisted is a film by Laurel Chiten, produced by Blind Dog Films . This story is about people living with the neurological disorder, dystonia. The experience of being trapped inside your body and thinking about what will set you free is told in the words of people living with cervical dystonia (CD) and one woman, a radio presenter, living and working with spasmodic dysphonia (SD), a form of dystonia affecting vocal cords. Laurel Chiten, the filmmaker also tells a little about her own experiences of living with CD.

A film review by The Santa Fe New Mexican on the back of the DVD cover says, “… Twisted is a success. Not only because of the filmmakers personal connection to the topic but because of the film’s fascinating and complex cast of characters. Its funky enough to be an art-house flick and brimming with larger themes about how people set themselves free. Part joy, part despair, TWISTED also explores the wonders and limitations of medical breakthroughs.”

If you would like to read a little about the lives of the people featuring in star roles of Twisted, this link will take you to them.

This film reveals inspiring stories of courage, determination and willpower. There is something for everybody. It is suitable for personal collection, continuing professional education, and support group meetings. You can order the film on-line, wherever you live. Just follow the above link to Blind Dog Films.

Sue Bayliss. Cairns, Australia.

Together we are walking along the pathway of life.

Supporting each other is so important.

Three people are meeting in Cairns, Far North Queensland, Australia, on Saturday 24th February 2007 to form a support group for people with dystonia in our part of the world. I am one of these people. We are meeting over lunch, viewing the film Twisted. One person from another country other than ours will be joining us briefly by speaker ‘phone. Together, we hope to share our sorrows and celebrate our joys. As well as supporting each other, we are planning ways to provide information within our respective communities about dystonia. If you would like to share our experience please leave a comment or contact me by email at s.j.bayliss@bigpond.com.au so I can get back to you.

Have you ever been in a group of people but felt uncomfortable or out of place? Having dystonia feels something like that. Especially if you have not yet been diagnosed and wonder what is wrong.

Following diagnosis many of us still have moments when we feel excluded. This may be because of how we sound, look, head wobbling, hand tremor or our body twisting into awkward and painful positions. Some people have a combination of some or all of these things. There is nothing wrong with our thought processes or our intellect. Many of us experience others doubting the existence of our neurological disease and not understanding the debilitating effects we live with. This is especially distressing when some medical practitioners and other health workers imply that we are somehow neurotic or pretending to have symptoms that do not really exist. It really does happen!

Fortunately, our personal family doctors and teams of treating specialists around the world become very familiar with our experiences. They are able to offer treatment for the symptoms we have and encourage us to normalize our lifestyle. Their support is so uplifting, enabling us to learn together about dystonia.

If you would like to know more about support groups and general information about dystonia, the following links may be helpful. Although some of these sites overlap, you will find further links within each of these. Meanwhile stay safe, healthy and happy, wherever you are.

Sue Bayliss. Cairns, Australia.

http://www.dystoniaaustralia.org.au

http://www.asta.asn.au

http://www.dysphonia.org/support

http://www.dystonia.org.uk

http://www.spasmodictorticollis.org

http://www.dystonia-bb.org

http://www.dystonia-foundation.org

Irresistible femme fatale?

Oh how I wish but regrettably, no. Just a funny voice and a pain in the neck.

Simply, the voice of post treatment phase when living with dystonia. Specifically, laryngeal dystonia also known as spasmodic dysphonia, and cervical dystonia also known as spasmodic torticollis requiring treatment with botulinum toxin injections into the appropriate muscles.

With soft, breathy sounding voice, I returned to the Royal Brisbane and Women’s Hospital two days after receiving treatment for spasmodic dysphonia in the Ear, Nose and Throat Botox Clinic. On this second occasion, I received treatment in the Neurology Department Botox clinic for cervical dystonia. Feeling the effects of bruising and the stress associated with this treatment, it was indeed a good feeling to be heading out of the hospital and off to the airport for the two hour plus trip home to Cairns in Far North Queensland (FNQ).

There has been torrential monsoon rains in FNQ for the past week. Cyclonic weather resulted in wide spread flooding throughout the region and made for pretty harrowing flying conditions. How wonderful that feeling of getting through the door of home sweet home!

Arriving home brought a magnitude of thoughts and feelings to mind and body. No vocal spasms when speaking. However, the tight spasms and broken voice now transformed into soft and sometimes highly pitched sounds that are the confirmation of successful reaction to Botox treatment. Along with that comes the dysphagia resulting in thickening drinks and liquid type foods. This is a small price to pay for ease of speech. Feelings of comfort and relief from painfully twisted neck and tightness of shoulders seems to drape me like a cloak of soft velvet. Yes, it is so good to be home.

Thoughts creep into mind about the need to travel several times a year for treatment. The distance is approximately 3,200 kilometers, round trip. Brisbane is a welcoming city. Medical facilities are available. Transport is excellent. Appropriate services are there. Recreational opportunities abound. There is family support from close family members and also extended family. The needs of people living with dystonia are so much easier to provide for in a city where treatment is available. These kinds of thoughts become temptations to act.

Many people living in non-metropolitan cities as well as rural and isolated areas face difficult decisions about meeting their medical needs and also their social needs. Home and family presents as a pull factor just as the lack of medical services in some geographical areas becomes a push factor in decision making. This may present some people with an experience of personal conflict.

Living with any disability is not just about the disability. The experience encompasses a multitude of factors requiring decisions that would not otherwise need to be made. In relation to dystonia, becoming more aware of this neurological condition and supporting research in your own country will lead to curing dystonia rather than treating the symptoms. Watch out for public campaigns focusing on dystonia during 2007 and consider giving your support in what ever way you can. Many people both now and in future generations will really appreciate your efforts. If you would like to comment, please leave a message. Alternatively, I am happy to hear from you by email at s.j.bayliss@bigpond.com.au and I will get back to you.

I hope the many links in this article are of interest to you. Wherever you are, I hope your day is full of happiness and joy.

Sue Bayliss. Cairns, Australia.

Update on Sue's Arrival Home

Have just heard from Mum. She's having the last of her Botox injections today and has managed to get a flight home this evening. Her voice has that high pitched, "Helium sucking," soft sound that occurs after the injections into her vocal chords

No doubt she'll back to blogging on Thursday.

Photo courtesy of kotz at SXC Photo Exchange

Megan Bayliss

Sue Away Until Saturday

Sue has asked me to let you all know that she is held up in Brisbane (pictured). She flew down on Sunday for her regular Botox injections into her throat. The intention was to return on Tuesday morning.

Alas, she has had to go to a different part of the hospital for treatment and her stay has had to be extended. She will not be back in Cairns until Friday evening.

To add to her distress, all the hotels in Brisbane were booked out and she is having to stay somewhere different each night.

Megan (Sue's daughter)

Living with Dystonia and re-creating our lives.

Re-creating personal lifestyle can be full of satisfying and fulfilling activities. This is particularly so when speech is effortful, broken and exhausting, neck and shoulders painfully contorted, or other forms of dystonia are troublesome. Sometimes, our lives are not what we expected at this point in time. Looking for alternative activities and hobbies not only enable us to learn new skills or developing the skills we already have, we may also become aware of a creative, healing power within. This creativeness or re-creation of our sense of self has a powerful effect upon our perception of self-worth.

Allowing our abilities to develop, expressing a part of us that neither our self nor others have been aware, can surprise the most skeptical of personality types! Tapping into an online library or handicraft sites requires skills of computer literacy and research ability alone! However, I do hope the highlighted links to the sites in this article provide you with ideas enabling you to extend your skills or alternatively, explore new skills. This is one way people living with dystonia are able to manage the frustrations associated with daily life.

If you would like to leave a comment about what helps you, living with dystonia, I will reply. Meanwhile, in solidarity and hope let us keep on keeping on together.

Sue Bayliss. Cairns, Australia.

Cervical dystonia and botulinum toxin type B; what happens in the long term?

How often do we reflect upon what may happen in the future as a result of the treatment we presently receive? How much do we know about the long term effects of Botox type B treatment? Questioning our decisions and thinking about possible outcomes in relation to our choices are natural thought processes. Mostly, we have little resistance to challenging thoughts creeping into our mind during those quiet, reflective moments in time. These thoughts are sometimes intuitive, defensive, confusing.

All the above mentioned thought processes lead us toward making informed decisions about health, relationships, quality of life. Together with these cognitive functions we apply trust, enabling us to be absorbed by that welcoming aura intertwining hope and faith. We feel safe, surrounded by reassurance.

Are we prepared to expose our vulnerability by asking our treating specialist’s opinion on something we have read or heard? My personal experience is the more questions I can think of asking during treatment appointments, the more I learn from the answers I receive.

Someone brought to my notice a very interesting brief communication about an article thus leading me off on a train of thought resulting in a list of questions to ask when I go for treatment next week in Brisbane. To that person, I say thank you. Please, follow the link in this paragraph; think for yourself about what the outcome of research does for us. How we are part of the answers to questions being asked in searching for a cure for the different kinds of dystonia. As individuals, we are not alone. We are members of a global team moving forward together, supporting each other along a road of discovery, a future of hope and promise, for ourselves and those who come after us.

Please, leave a comment if you are comfortable doing so. I will get back to you. Wherever you are, have a great day.

Sue Bayliss. Cairns, Australia.