World Voice Day Celebration, Cairns. 16th April 2009

Are you a health professional or a person with a diagnosed neurological movement disorder in or around the Cairns area? If so, consider joining us in celebration of World Voice Day 2009.

For Health Professionals Thursday 16 April at General Practice Cairns,
6:00PM– 7.15PM.

For interested clients, family members and carers, Friday 17 April 2009 at GPC,
10am - 11.15AM (Corner Arthur and Sheridan Streets, North Cairns).

Viewing of the film Twisted presents qualitative analysis of diagnostic process and treatment options including Deep Brain Stimulation for patients diagnosed with a neurological movement disorder. The first event is suitable for Medical practitioners, Nurses and Allied Health practitioners. The second event is suitable for interested clients, family members and carers. Tea, coffee and finger foods provided.

These events are hosted by the Cairns Neurological Movement Disorders Support Group and are supported by the Atherton Tableland and Cairns Dystonia Support Group.

For further information please contact:

• Cairns: Sue Bayliss (07)40321063 / 0407624578 or Gail Rogers 0412906241;

• Atherton Tablelands: Maureen Slocum (07)40917137.
  

For catering purposes, confirmation of attendance would be appreciated by 14th April.

(Follow the highlighted links in this article for great information)

Sue Bayliss. Cairns, Australia

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.

Voice from oblivion.

With shaky, effortful, broken voice and painfully twisted neck it is good to be back! My excitement about our World Voice Day Movement Disorders Symposium five and a half months ago is as alive now as it was then. What an event it turned out to be! Prior to the Symposium here in Cairns, Maureen Slocum and I travelled from Cairns, Australia, to Salt Lake City in the United States of America. We attended the annual symposium for the National Spasmodic Dysphonia Association and met so many great people. Shortly after those two wondrous events life took a turn down a very bumpy road indeed.

In the coming week it will be great to write about both symposiums mentioned above. However, a brief overview of recent life events for this dystonian will suffice for now.

Immediately prior to tripping off to the U.S.A. my son and I downsized our home by relocating to a small but comfortable apartment on the Southern side of Cairns. On our second night there we answered a knock on the door only to be asked if we had any marijuana or meth amphetamine! As if that is not hint enough of what lay ahead!

Off I went on my trip to America. After a few days my son phoned saying there were further incidents at the block of units (apartments). Upon return to Cairns I encounted some of the most frightening experiences of my life.

Extreme domestic violence occurred daily in one of the upstairs units. A woman frequently screamed out for assistance so we became quite adept at using the emergency telephone "OOO" code. Following these incidents a violent home invasion occurred directly above.

Weapons were used (gun, wooden clubs and metal bars). Security doors and inner doors were ripped off and thrown over the railings. Threats both verbal and physical were made. Punches and other serious assaults followed. People stood at our rear and front doors preventing our escape. Police were inundated with emergency calls leading to their arrival in force. However, the culprits had means to know where the police were and left the scene immediately prior to police arrival. It was a long night. The young couple from that unit left during the early hours of the morning and have not been sighted since.

Enough? Not so! Another incident at a time close to the home invasion occurred when approximately 30 youths attempted to gain entry to the other upstairs unit in the block of four. On this occasion police quickly responded only to find all these figures jumping fences and running in all directions thus evading arrest. We then discovered that in recent months a young woman in that unit had been raped by an intruder.

What is that I hear you say? Enough is enough? No way!

Next came a group of solvent sniffers in the unit where the youths had attempted to gain entry. Experiences associated with that group are too frightening to relate - I have nightmares! We were sleeping in shifts with one of us awake at all times. We had 'weapons' placed at strategic places throughout the little unit if needed. After some weeks police were unable to control the situation. We felt unsafe and at great risk of significant harm.

Off to a motel we went! What an expensive way to live. Eventually, we found a house suitable for us so relocate we did - again! Whilst all these events took place we experienced serious illness in our family but that is another story entirely.

During the height of drama I attended the Cairns Annual Show as a demonstrator of my handcrafts. It was a relief to sit there for three days talking to people, answering questions and demonstrating some of my 'know-how' around crochet, knitting etc. Won lots of prizes for my entries too!

Two weeks after The Cairns Show, together with my sister (Bettina Glass) and two of our cousins who are also sisters, we presented 'The Talented Taylor girls: connecting threads through the generations' exhibition in the Foyer Art Gallery at the Tableland Regional Council Chambers during the month of August.

Now that was lovely. Our exhibition, an expression of what we believe is inherited talent, was presented as a tribute to our fathers who were two of the Taylor brothers (eight siblings, all very talented artists and master craftsmen - and women!). More about that at a later time.

All things aside, we are now nicely settled in a tranquil little neighbourhood close to the Cairns Botanic Gardens, finally able to get on with our lives - Internet reconnected today.

Thank you for all the emails in my mailbox. I will get around to answering. Apologies to all those people who have emails returned. My mailbox filled quickly!

Looking forward to writing regularly again. Do explore the highlighted links and return soon. You are very welcome!

Sue Bayliss. Cairns, Australia.

World Voice Day 16th April 2008 - 6 PM until the fat lady sings!

Members of Atherton Tableland and Cairns Dystonia Support Group planning a Neurological Movement Disorders Symposium in Cairns, Far North Queensland.

.




Principal speaker, Dr John O'Sullivan MBBS, FRACP, PhD.

Consultant Neurologist, Royal Brisbane and Women's Hospital.

Brisbane, Queensland, Australia.


Are you are a health professional with an interest in movement disorders?

This event is for you!


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
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. Early confirmation of attendance is essential.


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

Dystonia: overpowering the reign of muscular spasms in our life is easier

when we are awed by the influence and strength of Mother Nature.

The magnificent sight below brings together tourists and locals alike to marvel at Far North Queensland's Barron River in flood.

Join me in forgetting for a little while an aching body and funny dystonic voice.

Click here to read of our amazing deluge bringing bitter-sweet experiences of both relief and hardship to many people living in the Far North East of Queensland, Australia.


Picture: EVE STAFFORD

Wherever you are, following the highlighted links in this article will take you on a voyage of discovery. Enjoy your journey and come back soon to spend time browsing through many other interesting articles on this site. You are very welcome.

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

Dystonia: post treatment thoughts.

Refreshing dew falls through the sultry night as blossom buds send out their heavy scent. Nocturnal creatures fluttering through the air make a softly whooshing noise. Owls calling to their kind, flying fox screeching as they compete for tropical fruits upon the trees.

Clouds flowing through the sky look eerie in moonlight. Thoughts of loved ones here sleeping safely in their beds and those living far away who may be thinking of us now.

The comfort of loving arms surrounding me are tenderly felt. A presence sensed yet visible only in mind's eye. Husband, parents, brothers. Those from generations before my own. Stepping through the door of life they are now journeying on, united in their faith.

What hardships, joys, sorrows and hopes they must have encounted throughout their life upon this earth. Entwined like golden threads through time, they are gently nurturing my soul.

My body aches with pain. Neck twisting, pulling, waiting for relief to start. Voice softly responding to toxin given before the long trip home.

Yes, peace is within my heart. That place where thoughts and feelings hide. The pain will stop and morning come to brighten a brand new day. With hope comes promise of better times. Let us move forward through life's journey. Together, we 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.

G'day USA: Calling all dystonians ...

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

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

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

Sue Bayliss. Cairns, Australia.

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.

Botox therapy: what are the occasional down sides of treatment?

Receiving botulinum toxin (botox) injections in vocal cords and also in neck/shoulder muscles for some years now reflects this writers desire for continuing treatment. Botox is a safe and effective treatment for many forms of dystonia. However, there are times when the experience is not so pleasant. Travelling long distances for treatment is anxiety provoking. Occasionally experiencing mild complications is challenging. The lack of appropriate levels of knowledge by most family doctors and allied health professionals i.e. speech pathologists, radiologists, physiotherapists etc, can be distressing.


Botox is recognised globally as an appropriate drug of choice for treating people with symptoms of dystonia. Medical evidence states risk factors are low. Over a long period of time some people may develop antibodies to this drug. Therefore, there may be a need to explore other treatment options for a minority of people. Establishing an alternative treatment plan may be hindered if a person lives a long way from the treatment centre.

In Australia, the city of Brisbane has the closest treatment centre to Cairns in Far North Queensland. Brisbane is 1,600 kilometres from Cairns thus making the return trip 3,200 kilometres. Cairns is the main city servicing vast areas of the Atherton Tablelands, Cape York Peninsula and the Torres Strait Islands. Getting around the city of Brisbane can be difficult for people from country areas and the Islands in the North. Travelling these distances means many people need to cope with climatic changes, fatigue from hours of travel, and cultural differences just to get to Cairns airport as well as anxiety about what will happen with each treatment.

Sometimes treatment is not a positive experience! It is important for non-dystonics and observers to understand the broader experiences resulting from treatment. There are indeed some rather nasty side effects many people experience at some time. Injections are not always straight forward.

For some, the breathiness following treatment for laryngeal dystonia (spasmodic dysphonia) lasts much longer than a few weeks. Also, the softness of voice may not get much louder at all. Dysphagia can be a problem after injections. Many people find it lasts only a couple of weeks. However, people who have an underlying degree of dysphagia to begin with may find botox injections make it much worse. This means some people need to have thickened fluids and soft diet at all times. There may be a need for a speech pathologist to monitor the person's swallowing by arranging barium swallow x-rays from time to time.

One of the most unpleasant side effects to vocal cord injections would have to be a painful treatment followed by bleeding. People receiving treatment for laryngeal dystonia and cervical dystonia may also experience a very dry mouth requiring clinical intervention. It is not uncommon for some people to wonder whether or not treatment is worthwhile. Fatigue resulting from speech has a huge effect on day to day life - with or without treatment.

Although it is not always smooth sailing, relaxation of spasms resulting from botox treatment seems to give enough relief for most people to persevere with their treatment schedule. It is important that family doctors and allied health professionals e.g. speech pathologists, radiologists, physiotherapists etc, understand the issues discussed here.

If you would like to comment on any treatment outcomes it is possible to do so anonymously. Click on 'comments' below. Alternatively, email me on s.j.bayliss@bigpond.com.au. I will get back to you.

Sue Bayliss. Cairns, Australia.

Dystonia Australia: where to from here?

Thoughts passing through mind about Dystonia Australia suspending operations reflect feelings in response to the initial news of the action taken by the Board of Directors. The organisation, Dystonia Australia, represents our orbit of experiences, provider of educational resources and, our hub of communication and support. Insufficient financial and material support take their toll on any organisation. Australians with dystonia, their family members and indeed our broader community, need to pull together in a coordinated approach ensuring recovery of our organisation.

Recovery from the initial shock of unexpected news is an experience of grief. Initially we may feel numb and bewildered followed by feelings of anger, sadness and a desire to bargain in some way. This is really a subconscious strategy attempting to delay the inevitable, although it has already happened. However, we do come to terms with the situation by finally accepting the change.

The loss of our National Coordinator, Nicola Dawson, is not only the loss of someone many of us have come to love and greatly respect. Nicola remains in mind's eye as the 'persona' of Dystonia Australia. The face to an organisation representing our needs, our fears, our joys, our togetherness, our specialness. Losing Nicola is something like losing a reflection of our self identity.

Where to from here? Due to the geographical vastness of our Nation, it is difficult for many of us to have input into discussions taking place between the Directors of Dystonia Australia. However, we are able to support each other in our own local areas and continue the good work previously accomplished by the National Organisation.

Many support groups start with one person mentioning their need for contact to another person who is in a similar situation. A group is two or more people meeting together. Sound simple? Yes, it can be!

If you are not a member of a local support group and do not yet know any one else who has dystonia, a good place to start is in your treatment clinic. Talk to other people there. Ask someone in your treatment team to introduce you to another person with dystonia. Look up web sites for support group contacts. Enter an on-line discussion forum and introduce your self as a first time on-liner. Email this 'distonic' writer so we can get to know each other. Creative thought focuses our attention on identifying solutions. This leads to wonderful outcomes!

Those of us who belong to support groups are well aware of each others experiences - we find we share a lot in common! Read many of the excellent dystonia sites. You can find them through your search engine. In addition to this article, previous blogs on this site all have highlighted links to informative sites just waiting for you to explore them.

Watch this site for information on our local Atherton Tablelands and Cairns Support Group meeting in two weeks. I hope the ideas in this article are helpful to you. Thank you for spending time here and sharing this space with me.

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

Home and away ...

Thank you for visiting this site.

I am away for 12 days, returning 10 October. However, please do stay awhile and browse through the articles about dystonia in its many forms and also about other topics.

You will find many links in articles on this site taking you to more detailed information about specific medical conditions. There are also links to many interesting and informative sites telling you about Australia.

Wherever you may be, I hope you find something of interest to you here.

Sue Bayliss. Cairns, Australia.

Dystonia support group

For those of you with dystonia who live in Far North Queensland or those from further afield who may like to take advantage of special air flight deals for a weekend in Cairns, this message is for you. Wherever you are, take a browse through the highlighted links.

Atherton Tablelands and Cairns Dystonia Support Group is meeting as follows.

Saturday, 17 November. 11am – 2pm

No charge. Sandwiches, tea coffee and juice, provided.

(Please phone Sue for catering purposes 04076 24578)

We are meeting at the Cairns City Library, 151 Abbott Street, Cairns.

Meeting room 2 – through front door and follow the signs.

Dystonia has many forms. If you have dystonia, care for someone with dystonia or know someone with dystonia, please come along and meet others. We have resources available for people with dystonia, family members, doctors and allied health professionals.

If you are a local from the Tablelands or from Cairns and need a lift, please telephone me on
04076 24578.

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: glimpse of a treatment model in the North East of England.

It is with great excitement I visited the North East of England in May this year (2007). My adult son Darren and my elder son’s wife, Jill, traveled with me. We have family living in Whitley Bay. This trip is definitely the most exciting to date. I would like to share my story with you.

Before leaving Oz I emailed ahead via the ADDER site. What an amazing response eventuated from that first contact! I met with Dr Ginge Butler and his wife Verona in the cafeteria at the amazing new Watergate Park Hospital in Newcastle. Over a cuppa we quickly found ourselves chatting about many of our mutual dystonic experiences, even identifying some of our differences surrounding treatment programs.

Following our initial meeting I am most fortunate to have then met Leslie the clinical nurse team leader of the Dystonia treatment clinic at the Watergate Park Hospital. This facility is amazing. The dedication of Leslie and her team to the treatment program for dystonic patients is most impressive. Learning about Leslie’s team of highly skilled nurses actually administering treatment is a surprise for me. This methodology of practice by clinical nurse practitioners must be of immense support to both patients and treating neurologists. Although the nurses give botulinum toxin injections for dystonic symptoms other than for spasmodic dysphonia, a doctor is always available. What amazes me most is the availability of very high quality treatment programs so close to where people live. This is perhaps the area of greatest difference between Australia and Britain.

Although Australia’s population is predominantly in the major cities, from where I live in Cairns, Far North Queensland, I travel a little over 1,600 kilometres to Brisbane for treatment then face the long trip home! Flying is a two and a half hour journey whilst driving is a two day trip each way. Guess what – I fly! One further amazing experience resulting from contact is meeting Professor Chinnery. What a lovely man he is.

Professor Chinnery is interested in my family history of dystonia. We have what we describe as the Venables’ voice because it is thought the ‘funny voice’ came from that part of the family. Spasmodic dysphonia? This well may be! Stories down the generations tell of tremors and strangely twisted necks, bodies and limbs. Some have referred to this as ‘the rheumatics’ or in latter years, ‘the Parkinson’s thing’. Need we be surprised? After all, upon reflection my 14 year path to diagnosis is paved with immense frustration. It is with confidence that I can say to fellow dystonics, you will know exactly what I mean. Yes, some things are intergenerational and truly universal!

It is my hope to meet many of my fellow dystonics when next in the U.K. - September 2008.

Sue Bayliss. Cairns, Australia.

Travel. What is it that draws us yonder?

Curiosity? Opportunity? Thrill of a journey? Pulling force of emotional attachments? Pushed by personal experience? Appeal of a far away place? The list goes on. For some of us it is because once we have traveled and enjoyed the experience we can hardly wait to go again!

People with dystonia are intensely uplifted by the experience of meeting fellow dystonics in far away places. This is particularly so when we discover how truly global the effects of living with dystonia are.

That little aphorism ‘our world is a global village’ becomes personal experience. When in another culture and within our social interactions we soon realize the golden threads binding us together are those universal values of recognizing a Deity or force greater than ourselves, living in family units, a system of laws, and respecting each other’s need for times of privacy. Once we are comfortable with these values and respect the belief systems of others we can then enjoy the sights, history and essence, of each place we visit.

Although three months have passed since returning from our most recent journey, the events of that time remain as fresh in my son’s and my own mind’s eye as when we experienced them. There is much to write about, especially focusing on meeting other people with dystonia and also the medical people in treatment teams.

In early October I return to Brisbane for my next treatment for spasmodic dysphonia and cervical dystonia at the Royal Brisbane and Women’s Hospital. Before that visit I will write about our journey to the North East of England. Wonderful things are happening there in the area of research and treatment for dystonia. If you have a question or a comment I would love to hear from you.

Enjoy the links in this article, you never know where they may lead y0u!

Sue Bayliss.
Cairns, Australia.

Dystonia: a cuppa, a bex, and a good lie down.

What do they have in common?

Not a lot. However, Australian’s living with dystonic muscle spasms in the not too distant past would have linked the old saying "a cup of tea, a bex and a good lie down" in a bitter sweet kind of way.

Firstly, many a true blue Aussie knows from experience the refreshing benefit of a cuppa at any time. Secondly, Bex Powders are recognized as the magical ‘fix’ of the day until the mid to late 1960’s in Australia. Bex Powders are now credited as a major contributor to addiction and renal disease of that era. Thirdly, having a good lie down is acknowledged as beneficial to our health in general, particularly inducing the necessary brain function for natural pain relief.

Amazing, isn’t it? People living with dystonia prior to recognition of this disease as neurological in origin sought their own remedies that no doubt included a cup of tea, a bex and a good lie down! Does this bring to your mind’s eye an image or a phrase from days gone by that ‘hits the nail on the head’? If so, leave a comment or email me. I would love to hear from you. The highlighted links lead you to some great sites. Where ever you are, have a great day.

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