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.

Media release: Cairns World Voice Day Neurological Movement Disorders Symposium.

CELEBRATING WORLD VOICE DAY, 16TH April 2008.

In celebration of World Voice Day a Neurological Movement Disorders Symposium hosted by the Atherton Tablelands and Cairns Dystonia Support Group will be held on Wednesday 16th April at the Cairns Colonial Club Conference Centre commencing at 6 PM. Dr Nichola Davis is Medical Chair for the symposium.

Specialist speakers are providing information to our local medical and allied health professionals about a variety of movement disorders, many of which affect voice. Consultant Neurologist Dr John O’Sullivan from the Royal Brisbane and Woman’s Hospital Department of Neurology is principal speaker. Another prominent Consultant Neurologist, Dr Steven Dommann from Townsville General Hospital Department of Neurology, is also speaking at this event.

Ms Karen O’Maley, Clinical Nurse Consultant from Royal Brisbane and Women’s Hospital Department of Neurology and Ms Maree Brockie from the Multiple Sclerosis Society of Queensland are also travelling from Brisbane and presenting papers at the symposium.

Ms Gail Rogers from Cairns Speech Pathology Clinic, Ms Melanie Mirotsis from Diagnosys Physiotherapy and Ms Kerry Stingel from Cairns Occupational Therapy are all local practitioners presenting papers at the symposium. Two additional speakers from the Atherton Tableland and Cairns Dystonia Support Group have recently returned from a dystonia symposium in the United States of America. They are Ms Maureen Slocum, a workplace assessor and trainer and also a numeracy and literacy tutor and Ms Sue Bayliss, a retired social worker.

This event is possible due to very generous support by Allergan Australia Pty Ltd and Ipsen Pty Ltd. These companies provide botulinum toxin (BTx) in Australia. BTx is the preferred treatment recommended by neurologists to treat muscular spasming associated with symptoms of dystonia and other neurological conditions.

Dystonia is a neurological syndrome characterized by involuntary, sustained, patterned, and often repetitive muscle contractions of opposing muscles causing twisting movements of abnormal postures. It can affect just one part of the body or several different areas. Dystonia can also be secondary to other illnesses that affect the nervous system such as Wilson’s disease, Huntington’s disease and multiple sclerosis.

Specific goals for the event are,
. to present the opportunity for the medical / health professional community in FNQ to increase their knowledge from specialists regarding movement disorders,

. to communicate with the medical / health professional community in FNQ educational and promotional material specific to movement disorders,

. to establish a network of medical / health professionals in FNQ interested in movement disorders,

. to establish a movement disorders network / support group in FNQ,

. to increase support from the community by raising awareness of movement disorders,

. to increase resources for individuals to access
1. timely referrals,
2. specialist assessments,
3. management services and,
4. appropriate equipment & support.

Anyone interested in further information may contact Sue Bayliss, 0407624578 or email s.j.bayliss@bigpond.com.au.

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.

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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