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

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).

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.

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.

Awareness and education about movement disorders:

Are you a health professional looking for continuing professional education activity and networking opportunity in Far North Queensland (FNQ)?


The Atherton Tableland and Cairns Dystonia Support Group invite you to attend a Movement Disorders Symposium offering the opportunity for education and networking.

The symposium is on Wednesday evening April 16th 2008 at The Colonial Club Conference Centre, Lockhart Room and Lockhart verandah, Behan Street entrance, Cairns.

This exciting event brings together an expert panel of speakers discussing a range of movement disorders including,

. options for referral and treatment,

. recent research outcomes in Australia, Britain and the United States of America and,

. bio-psycho-social effects of movement disorders on patients in FNQ.

The Symposium commences at 6.30 P.M. for registration, pre-dinner drinks, canapés and trade displays on the Lockhart Verandah. At 7 P.M. we move through to the dining room for dinner, our guest speakers’ presentations and panel discussion.

It is with great pleasure we are able to provide this evening free of charge to our medical community thanks to very generous educational grants by Allergan Australia and Ipsen Pty Ltd.

The above mentioned educational grants enable our local health professionals to continue their professional education in the areas of neurological movement disorders.

Principal speaker:

Dr John O'Sullivan. Department of Neurology, The Royal Brisbane and Women's Hospital. Brisbane

The following speakers are also confirmed:

Ms Karen O'Maley. R.N., C.N.C.. Department of Neurology, The Royal Brisbane and Women's Hospital. Brisbane

Ms. Maree Brockey. Multiple Sclerosis Society of Queensland - Brisbane.

Ms Gail Rogers. Cairns Speech Pathology Clinic.

Ms Suzanne Bayliss. Atherton Tableland and Cairns Dystonia Support Group.

In addition to the above speakers, additional professional people are available on a discussion panel.

Further speakers will be advertised as they confirm attendance.

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,

f. to increase resources for individuals to access,

· timely referrals

· specialist assessments

· management services

· appropriate equipment and support.

For further information please telephone:

Atherton Tableland: Maureen Slocum. (07) 4091 7137.

Cairns: Sue Bayliss. (07) 4032 4033 or 04076 24578.

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

Sue Bayliss. Cairns, Australia.

To health professionals interested in movement disorders, you are invited

to join us for our Far North Queensland Movement Disorders Symposium on World Voice Day, 16th April 2008.

We are meeting at The Cairns Colonial Club Conference Centre, Behan Street, Cairns at 6.30PM for registration and pre-dinner drinks on the Lockhart Verandah.

At 7PM we move through to the Lockhart Room for dinner and guest speaker presentations focusing on topics specific to neurological movement disorders.

Through the very generous support of Allergan Australia and Ipsen Pty Ltd the Atherton Tableland and Cairns Dystonia Support Group are able to host this exciting event. Our key speakers are coming from Brisbane and are specialists in their field.

Early response is essential. Watch this space for more information. Our media announcements will commence mid-February. You can contact me on mobile 0407624578 (+61407624578) or email to s(dot)j(dot)bayliss@bigpond(dot)com(au).

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.

Hear Ye, Hear Ye! Calling all dysphonics around the globe . . .

to gather at the NSDA Annual Symposium at Salt Lake City, Utah, U.S.A.

For dysphonics this is the event in 2008 (29th March). Venue is The Sheraton Salt Lake City Hotel.

Salt Lake City is a great place to visit. Better still, it is a terrific place for us to meet, greet and have a good old chin-wag about all those interesting things we soooo like to hear about. Great speakers. However, remember now, we must not all speak at once!!! Oh boy - what a cacophony it would be!

If you have Spasmodic Dysphonia, also known as Laryngeal Dystonia, consider coming to this fantastic event. I am going and look forward to meeting so many of you there. Wow. This is so exciting!

Check out all the highlighted links in this article. Consider sharing the information with your friends and family. The better informed people are about the many forms of dystonia, the sooner we will find a cure. Go on, get involved! Never know what kind of interesting journey you will embark upon.

Sue Bayliss. Cairns, Australia.
(hope you enjoy these links on Cairns and Oz)

Movement disorder: that definitive diagnosis!

So what! You have a funny voice? Twisted body parts? Shaky head, hands, legs, feet?

Trip over every darned thing that isn’t there?

"Hang on, hang on. I’ll just nip over and have a chat with you. Only be a tic."

"Yeah? Just who do you think your kidding, sweetheart!"

Ever fantasize about being someone other than yourself? Like:

Having a voice that others can understand?

Being able to pick up the telephone without feeling that churning feeling in your belly?

Knowing the effect of fear about having to actually say something?

Love to have the ability of those around you to just reach out and actually take hold of that cup of coffee?

Be able to go to an auction without the auctioneer acknowledging your bid when all you are doing is concentrating on stopping that ‘yes, yes’, ‘no, no’ head tremor?

What about doing that crab walk waltz along the supermarket isle? Oh for the ability to just stroll along those isles without knocking stock off the shelves when trying to correct that sideways wobble!

Uh ha, so the rest of you are getting the picture? Well now. Take a look at this.

Here we are, sweet maidens of The Atherton Tableland and Cairns Dystonia Support Group, in Far North Queensland! I took the photo but then, you know what I look like!

We are hosting a Movement Disorders Symposium on the 16th April at 6.30PM until – well, until the fat lady sings! Like to join us?

Watch this space for more about the great event on World Voice Day, 2008.

Now, I ask you. How appropriate is that! Join us in giving voice to the needs of people living with all the frustration, pain and anxiety, accompanying movement disorders.

Take a browse through the highlighted links in this article, learning more about movement disorders and how they impact on every part of a person’s life.

Wow! Bet you didn't know that much about them! Remember, you can read it all here.

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

Far North Queensland Inaugural Movement Disorders Symposium.

WORLD VOICE DAY

16th April, 2008, commencing 6.30p.m.

Hosted by

Atherton Tableland and Cairns Dystonia Support Group.

The goals of this event are:

. To present the opportunity for the medical / health professional community in Far North Queensland (FNQ) to increase their knowledge from specialists regarding Movement Disorders (MD).

. To establish a network of health professionals in FNQ interested in MD’s.

. To establish a MD’s network / support group in FNQ.

. To increase resources for individuals to access,

- timely referrals,
- specialist assessments,
- management services,
- appropriate equipment & support.

The venue, Cairns Colonial Club Conference Centre.

6.30PM: Registration Table:
- Meet and greet.
- Welcome drinks and canapés.
- Juice, soft drinks and water provided.
- Bar available to self-purchase alcoholic beverages.
- Poster displays.

7.00PM: Move through to dining room:

- Official welcome.
- Buffet dinner.
- Guest speakers presentations.
- Panel members receiving and responding to questions.
- Pharmaceutical sample displays.

Guest speakers and Panel Members:

- Dr John O’Sullivan. Neurologist. Royal Brisbane and Women’s Hospital.
- Ms Karen O’Maley C.N.C., Movement Disorders. Royal Brisbane and Women’s Hospital.
- Ms Gail Rogers. Speech Pathologist. Cairns Speech Pathology.
- Mrs Suzanne Bayliss. Social Worker (retired). Suzanne has dystonia.

More speakers and panel members to be confirmed.

If you are interested in attending this event or would like more information, please contact me by email:- s(dot)j(dot)bayliss@bigpond(dot)com(dot)au.

Sue Bayliss. Cairns, Australia.

Dystonia and pet ownership: An unorthodox inclusion to treatment plans

Much has been written about the many types of dystonia, the diagnostic processes, presenting symptoms and appropriate treatments. However, thinking on a more lateral perspective about enhancing orthodox intervention strategies, the role of animal companionship is also worthy of recognition. This is particularly so when people become socially isolated because of living with the effects of dystonic symptoms.

Research shows that people with pets are less socially isolated because they find it easier to meet others in their community. Whilst it is estimated 12 million Australians have an association with pets, 63 per cent of households recognize domestic pets as family members. It seems those delightful little bundles of fur or feather do have a good effect on us by promoting our wellbeing.

Whether it be walking your dog, throwing a ball or just enjoying eachother's company, it is equally beneficial as stroking your cat while enjoying that amazing reciprocal relationship. If you have any form of cardiac disease you can rest assured, there is evidence that recovery following heart attack is recognized as being much quicker for those who have a family pet!

Pictured above are our delightfully neurotic geriatric labradoodle and our aloof but ever so loving cat, also of the geriatric kind! They give us much enjoyment and are devoted companions to eachother and to all in our family. By engaging with our pets I experience a reduction in anxiety when treatment begins to fade and spasms return.

Do you have a special relationship with a domestic pet? If so, what does this experience mean for you? Click on the highlighted links throughout this article to learn more about pet companionship.

Sue Bayliss. Cairns, Australia.

Birthday girls on the train.

(click to enlarge photo)

Two sisters were on the train,

I hope to meet them again.

Both, birthdays they had

and I am so glad

these memories of joy do remain.

The above photo was taken on the tilt train to Brisbane when I went for my last treatment for laryngeal dystonia (spasmodic dysphonia) and also cervical dystonia (spasmodic torticollis). The girls are sisters from Far North Queensland and celebrate their birthdays one day apart. It was lovely seeing them so loving towards eachother and to their Mum who travelled with them.

People living with the symptoms of dystonia may experience a significant degree of twisted muscular spasms that can be very painful. Follow the links and learn more about this neurological disorder.

Sue Bayliss. Cairns, Australia.

For goodness sake, talk properly. You can't go on speaking like that. It is embarrassing!

"No, no! It is never my choice"
she said in her funny voice,
"‘tis spasmodic dysphonia
and maybe pneumonia"
as she gagged on her swallow of ice.



Do you have a funny voice and or difficulty swallowing? Do you know anyone who has? Speech impairment due to spasmodic dysphonia creates a flow on effect of communication difficulty that would be hard to understand unless experienced personally. The good news is, there is a lot of support if you know where to seek it!

Take some time to browse through this site. You will find many articles linking to other informative sites and supportive organisations around the world. If you prefer, leave a comment or email me on s.j.bayliss@bigpond.com.au and I will get back to you.

Sue Bayliss. Cairns, Australia.