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.

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.

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.

Amazing endurance!

Men survive lightning strike

The Cairns Post.

Bronwyn Cummings.
Tuesday, January 22, 2008.

TWO airport workers are lucky to be alive after being struck by lightning as they refuelled a plane at Lockhart River yesterday.

The lightning bolt hit as they stood halfway up a ladder by the plane, surging in through one hand and out the other of both men, travelling through their bodies and vital organs.

One man was left with a blackened, sooty hand. Both workers had pain in their arms and one had some heart pain. But the pair were in good spirits, laughing and able to walk from the Royal Flying Doctor Service plane when they arrived in Cairns for treatment about 7pm.

Duty RFDS doctor Charles Ellis said the men were incredibly lucky to escape without serious injury.

"About 10 per cent of lightning strike victims are killed," Dr Ellis said.

"They must have had luck on their side because there would have been fuel vapour, and they were half way up a ladder.

"They were lucky they weren't killed.

"It's just incredible."

The men, aged in their 50s, were refuelling the plane at the airport about 3.30pm when they were struck during a storm.

They were assessed by medical staff at the town and forced to wait for the lightning and heavy rain to ease off before a doctor could be flown in about 6pm.

The men were recovering in Cairns Base Hospital last night, after refusing to sit in wheelchairs to be taken from the medical plane to a waiting ambulance.

A Lockhart River airport spokesman was unable to comment about the incident last night. The incident will be investigated by Work Place Health and Safety.

What do your early warning signs tell you ...

about what you are reading on web health information?

Today, 22 January 2008, Kidney Health Australia is sending out this message to us all:

When you go onto the web to look for medical information make sure you get proper professional advice from your GP or specialist to avoid unproven health information.

Kidney Health Australia has released a fact sheet, "Using the Internet to Research Health Information" on the organization's own website aimed at protecting people seeking medical advice.

Many people who are suffering a chronic disease are vulnerable and if given the wrong information can make decisions which can influence their health says KHA CEO Anne Wilson as there are no rules controlling the quality of health information that appears on websites.

Kidney Health Australia says alarm bells should ring viewing a site that has the following qualities:

· Does the site only use case histories or personal testimonies as proof?

· Is the treatment based on a secret formula?

· Does the treatment claim to work on everyone with that condition?

· Does the treatment claim to work immediately and permanently with no further medical intervention required?

· Is the treatment available only from one source? - Eg. over the internet.

· Does the site claim that information about their treatment is being covered up or unfairly attacked by medical professionals?

· Does the site claim to have a cure for a condition?

· Does the site promote self-diagnosis and self prescription?


Kidney Health Australia says consumers need to ask three basic questions:

• Who runs the website and are they credible?
• Who pays for the website?
• Is the material evidence based or focused on selling products?
  

A full fact sheet is available from http://www.kidney.org.au/ under the patient information section Click Here To Download

Media Enquiries: Anne Wilson, CEO Kidney Health Australia Mobile: 0400 165 391

Dr Tim Mathew, Medical Director Kidney Health Australia Mobile: 0416 149 863

Ron Smith Media Communications Kidney Health Australia Mobile: 0417 329 201.

(end of media release)

My family and I are strong supporters of Kidney Health Australia. Every day of our lives we experience the loss of my husband who died from end stage renal disease and end stage cardiac disease resulting from cholesterol embolism.

May we never take our health for granted! Listen to the messages from qualified health professionals and be aware of our own physical, emotional and mental, health.

Personal awareness is not an obsessive trait but indeed means taking personal responsibility for our own health. Speak to your family doctor about any concerns or questions you may have. Be wary of 'quick fixes' mentioned to you by well meaning friends. Avoid responding to clever health related marketing strategies - they are there to take your dollar, not caring for your health!

My husband Capt Peter J. Bayliss A.M. wrote about some of his experiences however, his e-book is now off line but the introduction highlighted here remains on the Lae Gamefishing Club site in Papua New Guinea. Our Son David is working through his Dad's book, correcting typographical errors etc and getting photographs sorted in the correct sequence before posting it back on-line. Read a little about Peter's life and history. You may be surprised!

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.

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.

Townsville makes History ...

First Location for Kidney Screening Programme in Australia.


Townsville is set to take its place in history as the first location in Australia to undertake a screening program for Chronic Kidney Disease (CKD) next month.

Image right: Anne Wilson CEO Kidney Health Australia

Kidney Health Australia with the support of the Federal Government and BHP Billiton will launch KEY - 'Kidney Evaluation for You', an early detection program to evaluate kidney function, cardiovascular health and diabetes in high risk individuals.

With 1 in 3 Australian adults at increased risk of developing CKD, Townsville residents who are in the "high risk" group are able to book in to have a free KEY health check.

The high risk group is as follows:

· Anyone 50 years and above or 35 years and above if of Aboriginal and/or Torres Strait Islander origin

· Anyone with diabetes

· Anyone with high blood pressure (on or not on treatment)

· Anyone with a first degree relative (mother, father, brother or sister) with kidney disease

KEY is free and will be available on the 4th, 5th, 7th and 8th of February at North Ward Health Campus between 9am -5pm (33 Gregory St North Ward).

People wanting to take advantage of the free service should contact Kidney Health Australia on 1800 682 531 to book a consultation.

Anne Wilson CEO of Kidney Health Australia said, "Until now a primary health care program for chronic kidney disease (CKD) detection has not existed and the pilot study which will commence in Townsville will be a significant signpost for the future evaluation and detection of 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. Yet the level of awareness of CKD amongst the general public and health professionals is low and many risk factors of CKD are modifiable.

Dr Tim Mathew Medical Director of Kidney Health Australia who will be in Townsville for the program said, "a KEY program is vital in Australia to reduce the burden of kidney disease and kidney failure and the pilot program in February could be the start of one of the most important and effective primary care programs to manage CKD in Australia."

Media Enquiries:

Anne Wilson, CEO Kidney Health Australia Mobile:

0400 165 391

Dr Tim Mathew, Medical Director Kidney Health Australia Mobile:

0416 149 863

Olivia Corso CKD Early Detection Project Manager Mobile:

0421 545 916

Ron Smith Media Communications Kidney Health Australia Mobile:

0417 329 201.

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

Christmas triple treat: three little Angels.

Babies first Christmas a triple treat festivity


Margo Zlotkowski The Cairns Weekend Post December 22- 23, 2007.


Bundle of joys: Jenny Honeyball will mark Jessica, Jake and Ben's first Christmas with a big celebration with family at their Redlynch home.

TRIPLETS Jessica, Jake and Ben Honeyball's first Christmas is a miracle their new family gives thanks for every day.

The tiny trio were born six weeks early on October 10, each weighing just half an average baby’s weight, giving parents Jenny and John an anxious few weeks by their babies sides at Cairns Base Hospital.

"We were worried that their lung development would be an issue but we’ve had no problems at all," said their ecstatic but definitely sleep-deprived mum.

"Carrying one baby is scary enough, let alone hoping your body is going to be able to supply all the nutrients and nurture three healthy babies, but we’ve been very lucky."

The Honeyballs, who already had an active three-and-a-half-year-old daughter Lily, said they had planned to have just one more child to complete the family, so to learn there were three on the way was a big shock.

"You could say we were overwhelmed, excited, but overwhelmed," Mrs Honeyball said.

"It seemed too unreal to think all three would make it, so I really didn’t quite believe it until I heard all three cries (in the delivery room)."

There have been quite a few changes for the Redlynch family, including trading in the family sedan and upgrading to a seven-seater.

There are also a lot more nappies, about 100 a week, to contend with and not a lot of sleep, with each triplet needing to feed every three hours.

"All I want for Christmas is some sleep," Mrs Honeyball said.

"That’s my greatest wish from Santa."

The Honeyball’s first Christmas together will be spent at their Daphne Drive home, where relatives from southern Queensland and northern New South Wales will join them to help toast the new arrivals.

With the triplets not yet aware of what Christmas is all about, Mrs Honeyball said their biggest enjoyment would probably come from tearing up Christmas wrapping paper.

That, and being smothered with love and kisses from a very proud big sister.

Comfort is ...

a kitten in repose! His name is simply, Puss.

Selecting a pet for ourselves or a loved one is a decision needing some serious contemplation.

Responsible pet ownership offers us so much more than simply having a domestic animal, bird, reptile, rodent, fish or whatever be our choice. In some instances our pet may even outlive us!

Careful selection appropriate to the owner's needs and also the pet's needs may offer us years of comfort, companionship and good health! Do take time to click on and browse through the links in this article, learning how important our decisions about pets are. The original decision to own a pet carries a lot of responsibility for many years to come.

Do you have a family pet story to share? Leave a comment to this article so we can share experiences together. You can remain anonymous if you prefer.

Sue Bayliss. Cairns, Australia.

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.

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.

Neurological movement disorders, pharmacology and deep brain stimulation (DBS).

When pharmacology no longer offers significant relief from the symptoms associated with neurological movement disorders you may benefit from discussing DBS surgery with your treating neurologist. Correct diagnosis is essential for gaining optimum benefit from either pharmacology or DBS.

Some movement disorders are categorized as rare. It is possible your family doctor has never seen another person with the underlying cause of your symptoms.

Learning as much as possible about presenting symptoms of neurological movement disorders is a big part of accepting personal responsibility for our health and also for contributing to the decision about our own treatment.

Although this article is short the links will take you to informative sites. Do take time to browse through the links. You will be learning more about neurological movement disorders and treatment options.

Sue Bayliss. Cairns, Australia.

Dystonia: deep brain stimulation. Finding information.

(follow the links, enjoy your journey of discovery and learn more about one of the many forms of dystonia)

Asking treating neurologist, clinical nurse consultant, family doctor or someone on your treatment team is always a good start. However, apart from your neurologist and clinical nurse consultant, others may not be able to offer too much information without looking for it themselves.

Knowing where to look for information is half the battle! Feeling confident about navigating through each site we access is an excellent way to learn more about our area of interest. Making time to research our selected topic is essential.

With knowledge comes understanding and the ability to focus upon fact. Factual information assists us in making informed choices. We are then able to confidently discuss the area we research with others. In this way we are able to dismiss any myths associated with our fears.

Empower yourself today. Be informed. Make decisions based upon wisdom and fact!

Thank you for spending some time with me. Please, do stop by again.

Sue Bayliss. Cairns, Australia.

Dystonia treatment: a multidiscipline team approach.

The multidiscipline team is a group of professional people from diverse disciplines treating a specific patient through a coordinated approach by the patient’s case manager, possibly the family doctor. Multidiscipline teams provide a comprehensive consultation and treatment plan based upon the holistic assessment of a patient’s needs.

For example, botulinum toxin (botox) therapy is enhanced by using supplementary strategies of intervention. Physiotherapy, remedial massage therapy, speech pathology, occupational therapy, dietitian etcetera, is all recognized as beneficial in extending the benefits of botox and maximizing patient wellbeing.

The opportunity for attending botox clinic appointments with a treating neurologist for injections varies for different people. Some people live within a reasonable distance of the clinic enabling them to easily access other services at that location. Many people live a long way from their treatment centre thus needing to travel considerable distances. For these people there is not enough time for allied health consultation or intervention by a multidiscipline team. It is neither reasonable nor beneficial for the patient to undergo further consultation, assessment and treatment, at the time of visiting the neurologist’s botox clinic. Therefore, referral by the family doctor to local allied health practitioners according to the patient’s need is important.

My own treatment plan includes regular intervention by a speech pathologist, physiotherapist and dietitian. Ongoing speech therapy, including intervention for dysphagia, optimizes the benefits of receiving botox injections into my vocal cords and also into my neck and shoulder muscles. Fortunately, all members of my treatment team including family doctor and neurologist work very much from within a holistic framework of practice focusing on the patient’s/client’s assessed needs.

Regular intervention by members of the multidiscipline team ensures a maximal, holistic approach to the treatment plan for a person with one or more of the many forms of dystonia.

Highlighted links including the two below provide further information and examples of interest. I hope you find them informative and enjoyable. Thank you for visiting this site. Please, come back soon. You are very welcome.

Sue Bayliss. Cairns, Australia.