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.

Moving and overseas travel

Sue and Darren are on the move. Priority housing has been granted to Sue because of the disabling effects of the multiple forms of dystonia she has. Struggling to keep a full house and garden going, Sue is moving to disability friendly and smaller accommodation with a yard kept by somebody else.

For those who have moved house before, you will appreciate the stress and time it takes to pack, clean and vacate- especially with a weeks notice! Lucky Mum (this is Megan from Imaginif writing this)! Because of Easter public holidays this week, Mum needs to be out of her house by Maundy Thursday.

While this may be no mean feat for an able bodied veteran of the suburban move, for a person with a disability it becomes a little more difficult, particularly given Mum's impending trip to the U.S.A to attend a Dystonia conference. Add to that an incredibly busy work schedule this week for Paul and I and we are all a bit behind the eight ball. But, a move is warranted and a move will occur.

So....Sue won't be around much this week, or for the following two weeks after that while she cripples her away half way around the world. Neither the blog or Australia have been permanently abandoned. If there's anything to report from the U.S, Mum will no doubt let me know and I'll post it here to keep you all informed.

Images of local wildlife around Cairns.

You can see these images and many more by following the link to our local paper,
The Cairns Post.



Never smile at a crocodile - he will smile right back so watch out!

It was not the garden hose these folk tripped over in their garden. We really do need to watch where we walk!

Migaloo (Aboriginal for 'white fella' or white man) the one and only white humpback whale enjoying sun and warm sea whilst cruising the Great Barrier Reef waters on his annual migration journey North from Antarctica.

Fishing is good for locals and the birdlife too!

Black-necked Jabiru looking for a feed.

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.

Tasty treat: This awesome photograph of a 5m python dislocating its jaw to swallow a wallaby and joy, was snapped recently. Picture: DARREN CLELAND

This is okay but what's for dessert?

Click here and read about this story from Far North Queensland.

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

Why do Queenslanders walk with bowed heads?

To avoid stepping on snakes of course!

Photographer : Jake Nowakowski
The Cairns Post 27.02.08.:1

Australia is renowned for creepy crawlies however, when local wildlife encroaches upon human habitat for a feed of domestic pets all rules of equilibrium in nature become somewhat skewed!

One local family is traumatized following a rather handsome python devouring their much loved canine companion.

The family attempted to save their pet while also telephoning for assistance from wildlife experts.

Although a professional snake handler was there in quick-time it was too late to save their brave little dog.

Click on The Cairns Post highlighted link above for the story.

Sue Bayliss. Cairns, Australia.

Well, well, well. Three wells and a pond as well!

Monsoon rain brings such refreshing relief from dry, dusty terrain and water restrictions.

The monsoon also plays havoc by way of waterlogged telephone lines - or so I thought. However, our dead as a doornail telephone resulted from some hard working trench-diggers installing a very nice new fence around next door's swimming pool.

It just so happens that our telephone line travels right along the fence line before branching off towards our house! Ho-hum, ho-hum.

We checked out the batteries in the cordless phone, inspected our waterlogged yard for the possibility of rain soaked lines, rang Telstra on a mobile to report a fault but did not think for a minute that the line could have been cut in a couple of places - neither did the men dismantling the old fence and putting up the new one!

All is well that ends well. Our line is now restored and some of my emails have been answered this evening. Will get around to more tomorrow. Meanwhile, I do need to acknowledge a very important person.

Thank you Megan for posting notices on my site. I am most grateful.

Talk to you all again soon.

Sue Bayliss. Cairns, Australia.

The story of a brave little green turtle.

Alfie pictured with Jennie and Paul
from Cairns Turtle Rehabilitation Centre.

A little green turtle named “Alfie” has found a new home on Green Island (above right) thanks to Cairns Turtle Rehabilitation Centre and Great Adventures.

Alfie, a juvenile turtle approximately 10 years old, was released at Green Island on Valentines Day after successfully recovering from ‘floaters disease’.

Jennifer Gilbert of the Cairns Turtle Rehabilitation Centre said Alfie was found floating near Mission Beach about eight weeks ago and was brought into the Cairns Turtle Rehabilitation Centre by the rangers from Innisfail.

“He was suffering from ‘floaters disease’ and was quite sick. He had been floating for a while as he had a layer of algae and barnacles on his shell. Without treatment, Alfie may have died from starvation as these animals (with floaters disease) are unable to dive, and therefore cannot feed.”

Great Adventures Environmental Manager, Jason Reynolds said “Green Island was the ideal place to release Alfie as it has a healthy population of juvenile turtles, and the marine-park protected reef also supports significant seagrass beds in the shallows for him to graze on.”

Alfie made his trip out to Green Island aboard a Great Adventures boat, much to the delight of many tourists travelling to the island on their day cruise.

“When he was released, Alfie took off across the seagrass beds and did not look back. This was a great result. The Cairns Turtle Rehabilitation Centre would like to thank Great Adventures for taking him out to the island so he could go back home,” said Ms Gilbert.

Great Adventures is pleased to have been able to assist the Turtle Rehabiliation Centre and congratulates the team of Jennie, Paul and Damian who cared for Alfie, returning him to health.

*Photographs Courtesy of Graeme Bint Island Photography

I hope you enjoyed the above story about a very special little green turtle.

Sue Bayliss. Cairns, Australia.

The Corporate Angel Network of Australia

is a not for profit organisation run entirely by volunteers.

Corporate Angel Network of Australia is a registared charity working nationally to provide FREE air transport between home and treatment centre for cancer and leukaemia patients, bone marow donors and members of their families or carer.

The network liaises with hospitals and cancer and leukaemia support services right across Australia. This service does not provide travel for people who are entitled to government assisted travel and does not provide hospital to hospital transfers.

ALL patients travelling must have a Doctor's certificate of fitness to travel by air, must be ambulatory and be able to travel unaccompanied. All requests for assistance are from the hospital or support service. The Angel Network do not accept requests directly from the travellers or members of their family.

Most requests for this service are made by hospital social workers or nursing staff. For further information please check out The Angel Network of Australia website at www.angelnet.asn.au (phone: 07 5496 8854)

Sue Bayliss. Cairns, Australia.

What action do you take when realizing you are running around in circles?

Sometimes we just need to stop!

Running around in circles is usually a reflection of stress. This may be from some mental, emotional or physical strain.

Anxiety or working beyond reasonable limits may result in stress related symptoms like headaches, elevated blood pressure or maybe even some degree of depression.

Looking after our selves may be a challenge to our deeply rooted values and beliefs about ‘selfishness’, ‘self-centeredness' and ‘priorities’. However, if we do not care for self in a holistic way how can we care for those we love and others for whom we have a sense of responsibility?

As our Easter Season continues many of us will be thinking about a more holistic sense of being. What do we need to change in our life to fulfill that sense of spirituality within?

Consider leaving a comment reflecting your thoughts. Who knows what encouragement your words may give to others? I would like to hear from you.

Links in this article lead to a range of views in the hope you will find something meaningful to your own life journey.

Sue Bayliss. Cairns, Australia.

Our P.M's apology to Australia's Aboriginal people paves the way for reconciliation. However, one wee problem needs urgent response.

Kidney Health Australia Welcomes Rudd Commitment on Indigenous Health.

Kidney Health Australia today welcomed the commitment by the Federal Government to tackle the health issues facing Indigenous Australians with a concerted effort to close the seventeen year life expectancy gap between Indigenous Australians and the rest of the community.

Anne Wilson CEO of Kidney Health Australia said, "The overall death rates from Chronic Kidney Disease (CKD) are up to ten times higher in the Aboriginal and Torres Strait Islander communities compared to the rest of the Australian community.

"The incidence of kidney failure is increasing in the Aboriginal population at a faster rate than in non Aboriginal communities."

Ms Wilson said that the public statement and commitment on resources to tackle the health issues of the Indigenous communities as part of Prime Minister Rudd's "Sorry Statement" is a major signpost to the people in the front line of combating chronic diseases that the Federal Government is looking beyond the band-aid approach of the past.

Medical Director of Kidney Health Australia Dr Tim Mathew said, "Greater prevalence of CKD in some Indigenous Australian communities is due to the traditional high risk factors including , diabetes, high blood pressure and smoking.

"This can be compounded due to increased levels of poor nutrition, high alcohol use, streptococcal throat and skin infection, and socio economic disadvantaged living conditions which makes the Federal Government commitment to housing an important step in chronic disease prevention.

"Chronic Kidney Disease (CKD) is often referred to as the "silent killer" as 80 -90% of kidney function can be lost before an individual experiences any symptoms.

"The latest research has recognized kidney disease is a "disease multiplier". It causes death in many people with diabetes and hypertension and predicts the development of a cardiovascular event."

Kidney Health Australia with the support of the Federal Government and BHP Billiton has organised KEY - 'Kidney Evaluation for You', an early detection program to evaluate kidney function, cardiovascular health and diabetes in high risk individuals to be carried out in three States as Australia's first national screening program.

"If detected early through the screening of high risk groups CKD can be treated, thereby reducing other complications," Dr Mathews said.

http://www.kidney.org.au/

(end of media release)

Don't let any wee problems in your life become chronic kidney disease. Take action now.

Ask your family doctor for a kidney function test or phone 1800 682 531 to make a "Kidney Evaluation for You" appointment. If you use a TTY telephone, call 1800 005 881.

E-mail contact for Kidney Health Australia is, Health@kidney.org.au

Sue Bayliss. Cairns, Australia.

Do you know . . .

World Kidney Day is Thursday 13 March 2008 and this year will promote the theme of Amazing Kidneys.

Our kidneys filter 200 litres of blood daily and 73,000 litres annually - twice the amount of water it takes to fill the average backyard swimming pool.

Photograph is of Ann Wilson, Chief Executive Officer of Kidney Health Australia.

Have a read of Kidney Health Australia's February on-line bulletin.

Wherever we live, an awareness of chronic kidney disease is something we all need to have. What will you do to ensure your kidney health today?

Sue Bayliss. Cairns, Australia.

No, that won't make you go blind but this will ...

Kidney Disease Could Increase Risk Of Blindness Threefold

Kidney Health Australia today said a major Australian study just published has identified for the first time a significant relationship between early age related macular degeneration of the eye and early Chronic Kidney Disease (CKD). The findings could see future best practice protocols for people with CKD include monitoring of the eye for evidence of macular degeneration.


Kidney Health Australia Medical Director Tim Mathew said, "Age related macular degeneration is the commonest cause of irreversible blindness in Australia and whilst known to co-exist with chronic kidney disease (CKD) has not previously been recognized to be increased in frequency in these patients."

Image above right: Dr Tim Mathew Medical Director Kidney Health Australia.

"The Blue Mountains Eye Study studied 1184 people aged over 54 yrs and assessed eye function sequentially through a five year study period."

Dr Mathew said, "The results showed a surprising threefold increase in the onset of macular degeneration during the five year period in those with early CKD compared to those with no CKD."

"This association increased with increasing age and suggests that the 2 conditions share similar causative mechanisms."

"Early age-related macular degeneration thus joins the list of conditions known to occur significantly more frequently in people with CKD."

"These include anemia, high blood pressure, heart failure, atherosclerotic vascular disease and bone disease."

Fast Facts:

• 1 in 3 adults are at increased risk of developing CKD.
• 1 in 7 adults have at least one clinical sign of existing CKD.
• Approximately 2 million Australians may be affected by early-stage kidney disease and don't know it.
  

Media Enquiries:

• Dr Tim Mathew, Medical Director KHA Mobile: 0416 149 863.
• Ron Smith Media Communications Kidney Health Australia
  Mobile: 0417 329 201

end of media release

Wherever you live, ask your family doctor about an annual kidney function test.

Sue Bayliss. Cairns, Australia.

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.