Spasmodic Dysphonia

World Voice Day Celebration, Cairns. 16th April 2009

2009-03-31T18:03:00.003+10:00

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.

2009-03-31T15:25:00.005+10:00

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.

2008-10-01T20:18:00.006+10:00

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.

2008-04-10T11:21:00.007+10:00

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

2008-03-16T08:09:00.003+10:00

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.

2008-03-09T14:40:00.008+10:00

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!

2008-03-09T11:43:00.009+10:00

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

Our family's intergenerational celebration of International Women's Day in Cairns.

2008-03-07T18:16:00.010+10:00

Today is International Women's Day. I am celebrating with other women including my daughter Megan at a relaxed afternoon tea hostessed by the talk doctors of Imaginif.

Unfortunately for us, my grand daughter Jade (with my first great-grandchild well on the way) is unable to celebrate with us in person today. Jade left with her husband for a holiday in Thailand yesterday. However, before Jade left, Megan managed to get three separate photos so we could showcase three generations of women who believe strongly in the rights, stories and experiences of women:

My grand daughter Jade looking very proud about our special baby bump. Jade is 25 - I think.

My daughter Megan (from Imaginif) is around about 44 or maybe 45 this year. Megan is our beautiful Jade's wonderful mother

Myself in our lush, tropical garden - it is all the rain making it so green, not my tender loving care! I am around 60 + something.

Pop over to Megan's post about how we celebrated International Women's Day here in Cairns, Australia.

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

2008-03-06T21:48:00.005+10:00

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

2008-02-29T15:06:00.005+10:00

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?

2008-02-27T15:31:00.004+10:00

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?

2008-02-27T13:28:00.009+10:00

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!

2008-02-26T21:28:00.003+10:00

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.

Fence sitting and the phone still doesn't ring

2008-02-25T15:34:00.004+10:00

Yesterday in Telephone Line Spasms I gave you a blogospheric ring on the inability of Mum's telephone and internet communication.

Tech dude did flex his communication muscle but only to discover his voice line was chopped in several places (hope he now knows what it may be like to have spasmodic dysphonia)! It seems that the neighbours had a new fence put in and that Mr Fence contractor inadvertently cut the telephone line!!!!!

Sitting on the fence, an unsatisfactory and possible time frame for fixing has been offered. With a trip to the States about to eventuate and a neurological movement disorder symposium in Cairns to finalise, communication is of the utmost importance.

With an air of compassion and flavour of duty, I kindly offer my own email address. Should you need to contact Mum, please email me and I'll print it out to give to her (we live very close to each other so it is no drama). Contact me here.

Photo from stock.xchng - Broken (photo by CraigPJ). Wouldn't it be terrible if Mr Fence contractor

sat on that fence!

Telephone line spasms

2008-02-24T11:50:00.004+10:00

It seems that Sue Bayliss is not the only conduit of dystonic spasms. Her telephone line has become water logged and a technician will be arriving in the next few days to flex his working muscles at the wretched thing.

Temporarily without either telephone or internet, Sue is rendered communication mute.

So many of you email her that she wanted you to know that she is not being rude and ignoring you, nor is she unwell: she just has no voice - literally and now metaphorically!

A few more days and she will be back with you.

Megan (Sue's daughter) from Imaginif.

Photo: stock.xchng - Golden Gate crisis phone (photo by nicothein)

The story of a brave little green turtle.

2008-02-21T16:23:00.009+10:00

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

2008-02-20T14:06:00.006+10:00

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?

2008-02-15T12:17:00.004+10:00

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.

2008-02-14T14:30:00.010+10:00

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.

Come to Cairns and celebrate with us . . .

2008-02-11T22:44:00.000+10:00

giving voice to neurological movement disorders on World Voice Day, 16th April 2008.

(Dr John O'Sullivan, pictured)

Are you are a health professional with an interest in movement disorders? This event is for you!

Principal speaker is Dr John O'Sullivan MBBS, FRACP, PhD. Dr O'Sullivan is a Consultant Neurologist, Department of Neurology, Royal Brisbane and Women's Hospital, Brisbane, Queensland.

Atherton Tableland and Cairns Dystonia Support Group are hosting this inaugural Movement Disorders Symposium at The Colonial Club Resort Conference Centre commencing 6.30 P.M. with pre-dinner drinks followed by a banquet style dinner and guest speaker presentations.

Accommodation is available at the resort for people from out of town who are attending the conference.

This free promotional and educational dinner symposium for medical professionals and also allied health professionals is possible thanks to very generous support by Allergan Australia and Ipsen Pty Ltd. RSVP by 4th April is essential (see below contact details).

Additional speakers are,

Dr Steven Dommann, Neurologist, Townsville General Hospital.
Ms Karen O'Maley R.N., C.N.C., (Parkinson's Disease and other movement disorders) Department of Neurology, Royal Brisbane and Women's Hospital.
Ms Maree Brockie, Multiple Sclerosis Society of Queensland. Brisbane.
Ms Melanie Mirotsos, Physiotherapist, Diagnosys Physiotherapy, Cairns.
Ms Gail Rogers, Speech Pathologist, Cairns Speech Pathology, Cairns.
Ms Suzanne Bayliss, Social Worker (Retired), Atherton Tableland and Cairns Dystonia Support Group.

There will be a panel available for questions and answers following the speakers presentations. Ms Maureen Slocum from our support group will also be available on the panel.

Maureen and Suzanne are attending the National Spasmodic Dysphonia Association Annual Symposium in the United States, March 29th, two weeks prior to our symposium in Cairns.

If you would like to know more about this event, please contact me on mobile telephone number 0407 624 578. If you are visiting Cairns from overseas at the time of this symposium and would like to attend please telephone me on +61 407 624 578 or email:
s(dot)j(dot)bayliss(at)bigpond(dot)com(dot)au.

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

Sue Bayliss. Cairns, Australia.

(Please click on the highlighted links in this article for more information).

Do you know . . .

2008-02-11T13:27:00.000+10:00

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 ...

2008-02-09T16:39:00.000+10:00

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.

2008-02-08T22:50:00.000+10:00

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!

2008-01-31T20:07:00.000+10:00

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.

2008-01-28T22:09:00.000+10:00

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:

2008-01-25T10:39:00.000+10:00

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.

Far North Queensland experiencing extreme weather conditions!

2008-01-22T21:08:00.000+10:00

Spectacular light show: The Cairns Post reader Joseph Brimacombe captured one of the extremities of Cairns' recent weather in this amazing photograph. The keen amateur photographer took the shot of the storm last Wednesday.

Cooler weather on way

Bronwyn Cummings

Tuesday, January 22, 2008

CAIRNS is finally in for a cool change with showers expected to provide relief from scorching summer temperatures.

Weather bureau forecaster Alicia Duncanson last night said southeasterly breezes had already started to sweep the city, with showers expected from today.

Ms Duncanson said moderate to heavy rains would fall across the region for at least the next three days.

"It won’t be flooding rain, but it will cool things down and make it not so muggy," Ms Duncanson said.

The rain will come as welcome relief for Far Northerners after suffering temperatures in the mid–30s with humidity up to 80 per cent through all of last week and the weekend.

Yesterday in Cairns the mercury rose to 34.9C with 60 per cent humidity.

A "sensible heat calculator" indicated the temperature on the ground would have felt closer to 40C.

"It's been hotter than last year but we haven't set any records," Ms Duncanson said.

"1994 and 1996 were hotter years ... but obviously the more humid it is the hotter it feels."

Mareeba's hottest days of the month were Saturday and Sunday when the temperature reached 34C with humidity up to 77 per cent.

At 3pm yesterday, Innisfail was 31.5C with 66 per cent humidity, while Cooktown was 31.2C at 3pm with 68 per cent humidity.

"The hottest temperature in the region was in Cardwell on Sunday of 37.5 degrees," Ms Duncanson said.

Cairns had above average temperatures on 15 of the first 21 days of January.

The city's average maximum temperature for January is 31.4C and our hottest day this month was Friday with 35.7C.

For more readers photos of amazing weather, check out our photo gallery.

Hope you enjoy these stories from our local newspaper.

Sue Bayliss. Cairns, Australia.

Amazing endurance!

2008-01-22T20:16:00.000+10:00

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 ...

2008-01-22T10:09:00.000+10:00

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

2008-01-21T22:37:00.000+10:00

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

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

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

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

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

Sue Bayliss. Cairns, Australia.

G'day USA: Calling all dystonians ...

2008-01-21T17:23:00.000+10:00

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

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

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

Sue Bayliss. Cairns, Australia.

This aspiring 'legend' is no fairy tail . . .

2008-01-19T10:19:00.000+10:00

Puss had his 'operation' yesterday.

When son Peter and I walked into the vet's reception we immediately encountered a very happy wannabe Cousin It dog going boing-boing-boing on the end of a lead. Puss went PUFF! and metamorphosed into a nasty hissing fuzzball.

The vet arrived and pushed us into his examination room before Puss could really lose the plot. This well meaning but misguided man injected Puss with a tranquillizer.

Puss said "Ha! You call that a tranquillizer? Let me show you tranquil ..." and mauled the vet's hand, making it bleed everywhere. The vet dismissed our embarrassed apologies and said, "He'll be fine. Pick him up at four."

When my husband Duncan went to pick him up at four, Puss's level of consciousness was a degree removed from comatose. He was off his face - legless, eyes and mouth hanging as slackly as a bloodhound's.

The vet explained: it took three attendants to hold him down and administer an anaesthetic which unfortunately failed to render Puss unconscious. So they knocked him out with some really serious stuff!

Puss is now a legend.

(Author, Elizabeth James, my eldest daughter.)

Sue Bayliss. Cairns, Australia.

Stone the crows mate!

2008-01-18T22:21:00.000+10:00

Take a gander at this one. Struth, it's a whopper!

With 45 crocodile sightings in the Cairns area over the past 12 months it pays to be environmentally aware.

We hear a great deal about the need for us all to be responsible supporters of environmental conservation. It seems however, we also need to be aware of personal safety in our own back yard!

Have a read of the story about the crocodile in this photograph in The Cairns Post. Although he has his head in a bag, this handsome chap is 4.35 metres long - and that dear folk, is no tall tale.

The highlighted links in this article offer great stories and will take you on a wonderful voyage of discovery. Come back and visit me soon. You are very welcome.

Where ever you live, have a great day!

Sue Bayliss. Cairns, Australia.

Cairns Movement Disorders Symposium.

2008-01-16T15:15:00.000+10:00

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.

Aussie kayakers arrive in New Zealand.

2008-01-13T12:52:00.000+10:00

TWO Australian kayakers have completed their journey across the Tasman Sea.

James Castrission, 25, and Justin Jones, 24, reached shore at Ngamotu Beach, about 4km west of New Plymouth on NZ's West Coast, at 1220 local time (1020 AEDT).

The pair, who have spent the last two months paddling across the Tasman Sea, were given a heroes' welcome after completing their epic crossing today.

A crowd of about 3,000 gathered at New Plymouth to greet Castrission and Jones when they reached the shore.

During the past 62 days the pair travelled more than 3,300 kilometres and battled strong winds and tides that saw them go round in circles for part of the trip and arrive 20 days later than originally expected.

As they approached shore today a fleet of Maori wakas (canoes) sailed out to welcome them, as did dozens of local kayakers.

A New Zealand tug boat gave them a ``spray welcome'' by shooting water over their kayak, and a giant television screen was set up on the beach so those in the crowd could watch proceedings, entertained by a live band.

After greeting their families, they were expected to complete a customs check before being taken by ambulance to a local hospital to be checked up.

There were fears Jones would be unable to stand because of the deterioration to his leg muscles, which have not touched dry land in two months.

The pair are thought to be the first to kayak across the Tasman, and have taken part in the longest two-man kayaking voyage ever.

(From The Australian January 13, 2008)

Sue Bayliss. Cairns, Australia.

Townsville makes History ...

2008-01-11T12:11:00.000+10:00

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

What do safety,observation and expertise, have in common?

2008-01-10T22:59:00.001+10:00

Is that why the smart chicken crossed the road?

There has to be a story behind such an old saying.

Clicking here may be the answer!

Far North Queensland flora and fauna on display in suburbia.

2008-01-10T22:28:00.000+10:00

Sharing our environment with all creatures great and small can be quite a challenge at times. Check out this story about one happy chappy sunning him self on a local beach during a brief respite from our monsoonal rain.

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

2008-01-09T22:01:00.000+10:00

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!

2008-01-08T22:52:00.000+10:00

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

BRAvo for the sisterhood of the travelling bra on Christmas Day

2007-12-29T10:13:00.000+10:00

Christmas Day was spent with all the family at my eldest daughter's house in Mareeba. As is customary in tropical places, Christmas lunch featured seafood and cold ham.

I have been so busy recently that when Megan arrived early on Christmas morning to deliver my Christmas present, she found me still in my pyjamas and crocheting the edges of Christmas gifts for my children and grandchildren! She was obviously tired and busy as well because she arrived with her underwear on the outside of her clothes!!

To find out why Megan played a Santress with an oversize pink bra on the outside of her top, have a look at Sheila’s Twin Peaks for social understanding in the sisterhood of the travelling bra. It was a bit of fun that aimed to raise awareness around women's issues.

To survivors of breast cancer (I am one as well), I hope that your Christmas was all that you wanted it to be. If you would like to partake in The Sisterhood of the Travelling Bra, please click on this highlighted link to register your name with All for Women.

Christmas triple treat: three little Angels.

2007-12-23T00:20:00.000+10:00

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.

WIN a book for Christmas and the new year

2007-12-21T11:29:00.000+10:00

My daughter, Megan Bayliss, is giving away copies of her children's chapter book just because Child Safety is a WINNER.

Simply go to Christmas break and Christmas message to you and follow the instruction of leaving a comment with either the key words of child protection or child safety. Megan will then send a copy of Bitss of Caramel Marmalade on Toast (pictured) to you. Easy, and no matter where you live in the world, it's open for your winning child safety comments until January the 2nd, 2008.

Keep an eye on Megan's monthly competitions too, over at her website, Imaginif Child Protection became Serious Business. She's always giving something away.

Imaginif you won something!

What can we do together this Christmas?

2007-12-21T09:17:00.000+10:00

Join with others around the globe celebrating God's Word made Flesh.

Together, let us breathe peace into this world.

Consider going to the church of your choice this Christmas.

Music reflecting the true meaning of Christmas.

2007-12-20T10:48:00.000+10:00

Click here for Christmas music reminding us of the reason for this Season. I hope you are able to take a little time out to celebrate the true meaning of Christmas.

Wherever you are,

2007-12-20T00:33:00.000+10:00

Aussie Christmas songs

2007-12-19T22:37:00.000+10:00

Click on "Jingle Bells" and listen to a downunder version. (Wait for the music to start after getting to the site)

Here is another version. In case the link doesn't work, you know the tune so here are the words:

Dashing through the bush
In a rusty Holden Ute
Kicking up the dust
Esky in the boot
Kelpie by my side
Singing Christmas songs
It's summer time and I am in
My singlet, shorts & thongs

CHORUS:
OH, JINGLE BELLS, JINGLE BELLS
JINGLE ALL THE WAY
CHRISTMAS IN AUSTRALIA
ON A SCORCHING SUMMER'S DAY
JINGLE BELLS, JINGLE BELLS
CHRISTMAS TIME IS BEAUT
OH WHAT FUN IT IS TO RIDE
IN A RUSTY HOLDEN UTE

Engine's getting hot
Dodge the kangaroos
Swaggy climbs aboard
He is welcome too
All the family is there
Sitting by the pool
Christmas day, the Aussie way
By the barbecue!

CHORUS

Come the afternoon
Grandpa has a doze
The kids and uncle Bruce
Are swimming in their clothes
The time comes round to go
We take a family snap
Then pack the car and all shoot through
Before the washing up

CHORUS

The highlighted links offer explanations of Aussie lingo or alternatively, click here for a good translation of Aussie terms in this song.

Sue Bayliss. Cairns, Australia.

Comfort is ...

2007-12-19T20:46:00.000+10:00

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.

"Aoi a bhfuil failte roimhe"

2007-12-18T17:13:00.000+10:00

the air seems to ring with the sound of Jim Meehan's softly spoken voice. Stepping into the hall, I glance towards others. Yes, there it is again. With a tangible quality difficult to explain but very present, nonetheless. Welcome! Am I imagining this? Looking around, my eyes falling upon loved ones looking back at me, there is a sense of peace. Jim, not wanting a funeral service bedecked with sadness, is indeed achieving his wish. At this memorial service he seems to be bidding us welcome.

The little Wynnum-Manly Alliance Church hall is full. Friends, acquaintances and family. People speaking of things previously unknown by others including Jim's evangelical work in Ireland and the United States of America. The latter years of Jim's life reflect the power of God's presence in his beliefs and his day to day life.

Acknowledging some previous behaviours of Jim's that are leaving others hurt, even to this day, is reminding me of one thing shared by us all. That is to say, our human frailties. We hear from Jim's eldest son, Geoff, the history of Jim's life including his Irish heritage and his great photographic skills. Geoff tells of Jim Meehan's military service including New Guinea and also with the British Commonwealth Forces, Korea. Geoff and others are also talking about Jim's book on the 5th Australian Division Special Signals Display - Fort Lytton Signals Museum.

Jim Meehan is leaving us with quite a legacy of history. Working tirelessly for many years within the Fort Lytton Historical Association, Jim establishing the Signals Display section of the Fort Lytton Signals Museum is quite an accomplishment. From very humble beginnings, Jim's life story is indeed the epitome of a very ordinary man doing some very extraordinary things!

Experiencing a life-long recovery from early childhood abuse and rejection, Jim is now leaving behind this life with all its joys and its sorrows. Together we are saying goodbye with dignity, sincerity, hope and love.

On a personal note, I say thank you to Jim on behalf of my late brother, Graham. In 1960 Graham died from the ravages of cancer at the age of 24. Leaving behind his widow Rosemary and two small sons, Geoff aged 2 years and Stephen aged 2 days, Graham is not able to say thank you in this life for the huge responsibility Jim accepted on his behalf. Jim Meehan did the very best he could in caring for Rosemary and the two boys, formally adopted by him. As happens in all families, there are times of difficulty between family members but also times of great joy.

Jim and Rosemary also have two more beautiful children, Kathleen and Michael, and wonderful grandchildren of whom they have always been very proud. Although both Jim and Rosemary are now on that other journey which we all embark upon one day when passing through the doorway of life itself, they are leaving here a family who are indeed a credit to them. Rest in peace Jim. My family and I salute you. Lest we forget.

Sue Bayliss. Cairns, Australia.

WIN an Apple iPod by playing the Great Online Christmas Scavenger Hunt.

2007-12-07T10:28:00.000+10:00

The Great Online Christmas Scavenger Hunt

WIN an APPLE iPOD (a portable device for storing and playing music files) this Christmas by Joining in Outfit Inspiration’s Great Online Christmas Scavenger Hunt!

This is a free competition, open to all ages...yes even to us Dystonics who often can't make ourselves heard or understood in busy music and technology stores.

To enter this competition, visit Outfit Inspirations and begin your hunt for hidden letters, scattered across several other blog sites (including this one...there is a letter beneath a Christmas tree here on this site).

To play, and hopefully win, you need:

The entry form (available by clicking here)
An email address
A computer
A riddle-smashing brain

Collect all the hidden Christmas Letters (9) using the nine clues on the Entry Form. The hidden letters can be found at the end of a set of Christmas Baubles, on a flashing promotional banner. When you have found all the letters, unscramble them to identify the Magic Christmas Word.

The Christmas Letters are scattered across the web, on different blog sites. When you find the answer to each clue, the clickable banner will take you to the next site in the hunt (the clue on your entry form will give you some ideas around where to look on each site - my hint to you is to use the category secton to narrow your search - my categories can be found on the right hand side of my blog). Every letter is hidden, so you might need to use the clues and sift through a few pages on the site to find them!

It really is easy, all you have to do is print out the entry form with all the clues on it and start clicking you way around blog sites.

I wish you good luck and good cheer.

2007-12-05T22:10:00.000+10:00

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.

"Eirinn Go Brach" is his heartfelt cry ...

2007-12-04T15:41:00.000+10:00

Gaelic for Ireland forever, Raymond James remains acutely aware of his cultural heritage and the land of his ancestors. Leaving his Mam and Pa, Raymond departed the familiarity of his homeland, the Isle of Erin, arriving in Australia as a young man searching for opportunity and a depth of meaning in his life. Although feeling deeply about seeing memories of Ireland in his mind's eye, with nothing more than a song book in his hip pocket, a few meager possessions and a mind full of tunes, Raymond began a new life.

Whilst writing songs and strumming his guitar, Raymond worked in Melbourne doing whatever jobs he was able to obtain. After many experiences that were just about enough to turn a leprechaun orange t'be sure now, he met his beautiful Irish Colleen. Marriage changed Raymond's direction in life.

Leaving the Southern city and venturing to Far North Queensland, Raymond resettled in Cairns with his soul mate and their much loved daughter. Over the years, Raymond James has earned the respect of local folk who have adopted him as one of their own. His tunes and lyrics are popular as well as being sought after at the various folk festival venues around the North.

It is always a pleasure to hear Raymond's gentle Irish brogue come over the airways when local radio stations interview him. You are able to access Raymond's site and hear some of his recordings. Do drop him a line and say g'day.

Sue Bayliss. Cairns, Australia. (cast your arrow over photographs in 'Australia' link)

Do domestic pets pull at your heart strings?

2007-12-03T20:51:00.000+10:00

Scientifically speaking, opinions vary about the heart health status of pet owners. However, there is plenty of evidence confirming emotional and general health benefits for those who adore their pets. The little kitten in this photograph belongs to someone in my family who rescued him from abandonment. Unable to locate owners, my family took this kitten to the vet for all those things that kittens need. He now has a loving home where the "I adore you" factor is definitely reciprocal! Do you have a story to share about your companion pet?

Sue Bayliss. Cairns, Australia.

Dystonia and pet ownership: An unorthodox inclusion to treatment plans

2007-12-03T17:27:00.000+10:00

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

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

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

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

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

Sue Bayliss. Cairns, Australia.

Ice blocks for Aussies today in Cairns.

2007-11-30T21:27:00.000+10:00

Flag bearers: Eyman, 4, and his brother Shamseldin Bahar, 6, after becoming citizens yesterday.

The Cairns Post today (30th November 2007) tells the lovely story of five Sudanese families who are proudly calling Australia home.

"RUNNING around with an ice block and an Australian flag marked the day these children became Aussie citizens.

But for their parents and friends, the citizenship ceremony at Cairns City Council yesterday was a much more emotional experience.

The children were among five Sudanese families to became Australian citizens and part of a group of 58 adults and 14 children who took the pledge.

Among them was Farasak Emmanuel, 31, who arrived in Australia three years ago after his flight from Sudan to South Africa, which included a three-week walk to Uganda.

He thanked his Australian "family" for accepting him into the community.

"I encountered a lot of things in my life that I didn’t expect to happen," he said.

"The first night after I got here I was running along the Esplanade and everyone was smiling so I knew it was a beautiful place."

He said people should not judge the Sudanese people by reports that a few "bad elements" were not fitting into the Australian way of life.

Mr Emmanuel said he hoped to get a passport so he could visit his parents who he had not seen since he fled Sudan a decade ago." (The Cairns Post 30/11/'07).

All highlighted links in this article have been included by me for you to access further information about the specific topic.

Sue Bayliss. Cairns, Australia.

Birthday girls on the train.

2007-11-28T11:18:00.000+10:00

(click to enlarge photo)

Two sisters were on the train,

I hope to meet them again.

Both, birthdays they had

and I am so glad

these memories of joy do remain.

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

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

Sue Bayliss. Cairns, Australia.

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

2007-11-27T16:54:00.000+10:00

"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.

Okay, okay, I know. Strange they may be. However, they do have a purpose!

2007-11-26T21:53:00.001+10:00

(click photograph to enlarge)

With a funny voice that is enough to give me a pain in the neck I find great solace in keeping my shaky hands in shape by creating thingies. Can't say I stick to patterns though - my unsteady hands create new designs all on their own!

The little creations in above photograph are for the "Talented Taylor Girls" (our self-esteem is above the temptation to say 'Tarts') craft exhibition for the month of August 2008 in the foyer of the Atherton Shire Council Art Gallery.

We Taylor girls are sisters and cousins. Our fathers were brothers, God rest their souls. I'm sure they are quite chuffed to know we earthly maidens are doing our bit to pass on our inherited ideology of family togetherness. Also, we are encouraging the younger generation to discover their sense of creativity within!

You will find an earlier blog telling you all about our exhibition.

Thank you for stopping by my site. Please, stay awhile and browse. There are many interesting articles. They all contain great links just waiting for you. You will find yourself on amazing adventures of exploration, fun, fact finding, stories of ancient Australian Indigenous culture, even extending your theoretical knowledge!

Sue Bayliss. Cairns, Australia.

Ever smile at a crocodile?

2007-11-26T20:53:00.000+10:00

Not likely mate. Although, there are plenty of crocs around Far North Queensland. That is, if you fancy an encounter with a member of the ancient crocodilian order. After all, they first appeared about 200 million years ago! Seeing one in its natural habitat could be quite an experience. Just think about it. You can find them right here in Cairns!

Click on the links, you will find an amazing array of crocodile stories, photographs and facts!

Sue Bayliss. Cairns, Australia.

Who what? Excuse me. What did you say?

2007-11-26T15:47:00.000+10:00

Who hung the monkey?

On a bleak winter's day in the North East of England during the Napoleonic Wars a French ship floundered off the coast of Hartlepool.

It is believed all souls were lost to the sea. Then, as villagers wandered through the flotsam along the beach someone saw an amazing sight! A small hairy creature clinging to wreckage. (Like all good tales, there are several versions of the story.)

The villagers, apparently somewhat psychologically unsophisticated folk at that time, wondered if their fear about a French invasion was imminent. Could this creature be a French spy? Never having seen a Frenchman before, they were unsure.

Do follow the links and read the story for yourself. Having been to Hartlepool, I am aware of many historical features of far greater relevance than the story of the poor monkey's plight. However, the story is a part of my heritage. It is in fact one of my earliest memories.

I am a descendant of James Swales b.1810. He was Mayor of Hartlepool in 1867 and several times thereafter.

Thank you for visiting my site. You are most welcome to drop by anytime.

Sue Bayliss. Cairns, Australia.

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

2007-11-26T09:58:00.000+10:00

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.

2007-11-25T14:00:00.000+10:00

(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.

2007-11-24T13:02:00.000+10:00

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.

A reminder of valour

2007-11-22T23:59:00.000+10:00

Photograph of the plaque on my husband's war grave in Cooktown.

Peter wrote about many of his experiences. However, the site hosting his e-book closed. The Lae Yacht Club linked to the unedited introduction of his book.

Our son David is custodian of his fathers writings. He is working on editing the original work that was unedited due to my husband's terminal illness. The finished copy will be available in 2008

Sue Bayliss. Cairns, Australia. (click on the photograph to enlarge)

A two day country drive.

2007-11-20T22:19:00.000+10:00

Wallabies, kangaroos, horses, cattle, snakes, the occasional dingo, flooded rivers and creeks. What do they have in common? The Cooktown road! It is now sealed all the way from Cairns to Cooktown travelling through Mareeba, Mt Molloy, Mt Carbine, Palmer River and Lakeland Downs. When our children were all in boarding school it could take us anything up to 14 hours or more to make the trip during the Wet Season. Now it only takes a nifty 4 to five hours. Pretty good, 'ay!

(I respectfully advise Australian Indigenous readers that the continuing article contains reference to a recently deceased Aboriginal person from Cooktown. I apologize for any distress. No offence is intended.)

Returning to Cooktown on this occasion has a 'bitter-sweet' quality. My youngest son aged 37 years is driving me. We are attending the funeral of the brother-uncle of an Aboriginal man who lived with us in Cairns for a considerable time completing his high school education. He then continued on to college, successfully completing an Aboriginal and Torres Strait Islander Art Course. My family and I have known many people from this family. We are sincerely sorry for their loss.

My family and I have lived and worked in Cooktown from 1976 to 1984. My husband and I returned again, living there from 2000 to 2001 when we left due to my husbands terminal illness. We returned in 2002 so my husband could spend his last days there. I left permanently for my own health needs in 2005.

Our children grew through their teenage years in Cooktown. The younger three completed primary years of education at Cooktown State School. At that time there was no high school in Cooktown. Children needed to travel to and from boarding school to complete their education. Our daughters attended St Anne's Anglican Girls School in Townsville, now known as The Cathedral School of St Anne and St James. The boys attended All Souls Anglican School at Charters Towers now known as All Souls St Gabriels School. Our daughters married young men from the Endeavour Valley farming area between Cooktown and Hopevale.

The highlighted links will lead you to some interesting and informative sites. Please do stay a while enjoying your voyage of discovery. The area is rich in Aboriginal history. Captain James Cook berthed the Endeavour on the sand beside the river for approximately two months whilst undertaking repairs to the hull of the Endeavour resulting from running onto a reef.

Clicking on the highlighted links will take you on a spectacular journey of discovery. Thank you for staying here awhile. Please return again soon. You are most welcome.

Sue Bayliss. Cairns, Australia.

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

2007-11-20T21:23:00.000+10:00

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

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

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

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

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

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

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

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

Sue Bayliss. Cairns, Australia.

Ex-tropical cyclone Guba.

2007-11-20T11:05:00.000+10:00

I acknowledge and pay my respect to the traditional owners of the areas discussed in this article.

True to substantiated erratic behaviour, Guba proves to be mysteriously elusive. Cyclone warnings have now ceased for the Eastern Torres Strait and the Queensland mainland. However, given the history of this weather system there is the possibility it may re-form. Hopefully not!

Follow the highlighted links to discover more about the natural beauty of these areas and the history of Indigenous people living there.

2007-11-20T00:33:00.000+10:00

Following the erratic wanderings of Guba?

Yep, that big bag of wind is at it again.

'Unpredictable' doesn't do justice to the behaviour of this bad tempered force of nature!

Although Guba has not regained intensity, the people of Papua New Guinea are suffering dreadfully. Many lives lost and coastal villages obliterated.

Now the people of Australia's Eastern Torres Strait are experiencing the storm's fury. Thoughts and prayers folks, thoughts and prayers!

(Click on the map to enlarge it.)

Dystonia musculorum deformans is commonly referred to as generalized dystonia or early-onset dystonia.

2007-11-19T21:57:00.000+10:00

Dystonia in its many forms including generalized dystonia is a frequently misdiagnosed and little understood chronic neurological disorder. Dystonia is not fatal but may be quite painful. Abnormal signals sent out by the brain block messages to muscles. This causes involuntary muscular spasms that may twist a person's body into abnormal positions. Neurologists with an interest in movement disorders are able to offer an appropriate clinical diagnosis followed by a treatment plan.

Generalized dystonia may present as more problematic to treat than other forms of dystonia. This type of dystonia frequently requires a combination of drugs suitable for the presenting symptoms. When favored treatment methods are no longer helpful in controlling symptoms the person may be referred for deep brain stimulation surgery. There is no guarantee of success resulting from this form of surgery. The risk of serious complications must be considered. Botulinum toxin injections are commonly and successfully used for treating symptoms of dystonia but may not be particularly helpful for the long term treatment of generalized dystonia.

Botulinum toxin injections into the overactive muscles is the safest and preferred drug therapy for most other forms of dystonia. Prolonged effect of the injections may be gained from physiotherapy, speech therapy and or other interventions recognized as beneficial for each person's need.

Appropriate support for people with dystonia and their families can be hard to find. It is through contact with others experiencing the same kinds of daily frustrations resulting from living with dystonia that individuals are able to feel normal. Talking to others who really do understand is a welcome relief!

If you would like to share your story or know more about dystonia, please leave a comment or email me (s.j.bayliss@bigpond.com.au). I will get back to you.

Sue Bayliss. Cairns, Australia.

The Guba dance.

2007-11-19T10:02:00.000+10:00

Twirling, looping, sidestepping, shaking. By gee, I think you've got it!

Tropical cyclone information bulletin issued at 5am today (Monday 19th November) places Guba in the Coral Sea about 255 kilometres east of Lockhart River.

This cyclone is now travelling slowly northwest towards the coast of Far North Queensland.

Little change in intensity of this now minimal category one cyclone is expected.

Guba has gone from a tropical low to a severe category three cyclone before weakening to a category one storm over the past week. Two years ago a severe category five cyclone crossed the Far North Queensland coast leaving havoc in its trail.

People in Papua New Guinea are suffering from heavy rain. Some people have died and many villages along the coast lines are now displaced.

Click away on the highlighted links in all my articles. Enjoy the diversity of information you will find there.

Sue Bayliss. Cairns, Australia.

C'mon Aussie c'mon, c'mon ...

2007-11-19T01:01:00.000+10:00

Yep, a good ole sing-along is as good as a shrimp on the barbie mate!

Wow! This week is shaping up to be really exciting ...

2007-11-18T22:00:00.000+10:00

in the Land Downunder.

watching a shoe box full of hair

We are set for a dynamic roller coaster ride

inclement weather

political intrigue

medical breakthrough announcements

tracking down a murderous fugitive

initiating social change

hair growth

wow factor.

and Downunder

Unpredictable cyclone hanging around.

Last week of Australian federal election campaign.

Election day on Saturday 24th November '07. Who will be our Prime Minister next week???

Neurosurgeon at the Canberra Hospital revealing details about world-first brain surgery on a 77 year old man.

Hope for finding Pumpkin's dad following emotional plea by America's Most Wanted.

The world is not coming to an end tomorrow!

Opportunity knocks for those in the know when it comes to community intervention programs.

Well now. What is that old saying - the difference between a bad haircut and a good one is a week? Could that possibly ease the stress for our Will?

Thank you for stopping by. Hope you enjoyed the story trail of exciting events winding through our coming week! You will find lots of exciting links throughout this blog site. Have a browse. Even a funny voice and twisted neck can't keep me away from all these adventures.

Sue Bayliss. Cairns, Australia.

Guba is dancing in the wind!

2007-11-18T13:50:00.000+10:00

Cat is in the cupboard, dog is on the nose. We are checking our cyclone kit while outside it blows and blows!

Twirling round and round, Guba is proving to be unpredictable. That is the nature of weather systems such as cyclones - until they become very deep pressure systems moving towards land. There is not too much remaining unpredictable when a category three or higher cyclone is heading for a populated area of the coast!

Guba has already looped the loop once. Looks like that may be happening again!

At 10am this morning (Sunday 18th November, '07) Guba was twirling around off the coast of Far North Queensland. Located 203 nautical miles east of Lockhart River and moving slowly, it is thought there will not be any significant change in Cairns weather for up to 48 hours. We are experiencing rain, heavy at times. There is a strong wind warning with winds expected to spread southwards to Bowen tomorrow (Monday). What an opportunity to curl up and knit, crochet, cross stitch, sew or even do some writing!

Not being able to speak very well can be real challenge. So too can be an aching and twisted neck, shoulders and back! All that aside, the rain is so refreshing.

Take a little while and browse the many interesting articles on my site. Follow the highlighted links and enjoy your voyage of discovery! Click on the photographs to enlarge them so you can see them better. Thank you for dropping by. You are most welcome.

Article by Sue Bayliss. Cairns, Australia.

Atherton Tablelands and Cairns Dystonia Support Group Meeting.

2007-11-17T22:03:00.000+10:00

(Thank you for stopping by. Please, do stay awhile. There are many earlier blogs where you will find considerable information about the topics discussed through highlighted links in the articles.)

Support groups are so important for keeping us in touch with others experiencing the same kinds of challenges as ourselves. There are many ways to access support. Family and friends are frequently our primary support people. However, those closest to us are sometimes too close for comfort! Personal experiences within close relationships may overlook our basic need to identify with another like able-bodied person. I use the term another like able-bodied person rather than disabled person.

Those of us with any of the many forms of dystonia are sometimes significantly socially marginalized within the community and also within our family structure. This is largely because of the nature of symptoms we experience including fatigue. The cause of our symptoms is frequently misunderstood. By meeting with and speaking to others in the same boat so to speak, we are able to normalize our experiences.

There we were today, doing what so called able-bodied people do every day. Braving the elements! Some driving long distances over mountain ranges that are dangerous when wet. It is never easy to go out and about in nasty weather. Today's support group meeting was quite an accomplishment. Although five people were unable to attend, the rest of us enjoyed sharing experiences and discussing topics of importance to us.

During our meetings we telephone one person with dystonia living in Boise, USA. Today I forgot to take her telephone number with me! Our meeting just was not the same without making contact. On arriving home I went straight to the phone. We were able to spend a few brief minutes chatting about the meeting and exchanging news about family etc. It does not matter what geographical distance is involved. Communication technology allows us to support eachother from different sides of the world!

The photographs below are of some members of our small but dedicated support group.
Sue Bayliss. Cairns, Australia.

Left to right: Gail, Maureen, Althea, Karly.

Left to right. Standing
Maureen, Sue.

Sitting. Althea, Karly

Grumpy Guba

2007-11-16T23:08:00.000+10:00

Thank you for visiting this site.

Tonight (16th November '07) Severe Tropical Cyclone Guba (Category 3) is about 405 kilometres off the northeast coast of Queensland, in the Coral Sea. The system is expected to travel south before turning southwest towards the coast. However, cyclones are unpredictable to say the least! It is really a wait and see experience.

Those of us who remember many cyclones in our lifetime know only too well that weather systems such as this one are to be respected for what they are. The safest thing to do is to be well prepared.

Listen to information and warnings on the radio and television. Take them seriously.

It is interesting to follow the course of cyclones and learn about meteorology.

Please, where ever you are, think about those who may be in harms way. People do get caught at sea in yachts and other craft. We are hoping and praying this storm will either turn away from the coast or cross the coast in an unpopulated area.

You can find more links about this weather system and cyclones in general in articles written on this site over the past few days. Please, do browse. You are most welcome.

Sue Bayliss. Cairns, Australia.

Dystonia and the talented Taylor girls.

2007-11-16T17:17:00.000+10:00

While we are preparing for an exhibition of our art and crafts, my sister, three of our cousins and myself are busy planning the event in August, 2008. The venue, foyer of the Atherton Shire Council is booked for the month. Our fathers were brothers belonging to the very large Taylor family from Ipswich. There were nine siblings, all very close to each other. They are now all deceased.

We girls, now the older generation of cousins and aunts, are all deeply spiritual in our beliefs, values and expressions of creativity. Our range of talent covers art, embroidery, patchwork, crochet, knitting, sewing, writing and creative story telling. All these skills are intergenerational. So too are some of our medical conditions! Specifically, cancer.

Some of us are surviving cancer. Many in earlier, present and later generations have not. For me, in addition to surviving breast cancer, experiencing life with dystonia has its frustrations.

There are days when I just want to shrivel up into a little ball, ignoring everyone. Funny voice, shaky hands, twisted neck, aching back, cramps in feet and legs, and a head tremor that goes no-no with an occasional variation of yes-yes! All of this culminates in thoughts that scream "GO AWAY, DO NOT TALK TO ME" every time anyone comes near.

Refocusing on needlework, crochet, knitting and writing brings about a re-creation of my sense of self. Illustrated in this blog are some of the items I have already completed. There are many more. As time goes by I will include them in future articles on this site. It is a fulfilling experience to create something that is meaningful to the individual. These items become an expression of something greater than ourselves but from within our being. Perhaps it is an expression of love.

Go on, have a go. Express your sense of creativity today. You may be pleasantly surprised!

Sue Bayliss. Cairns, Australia.

The night is calm and eerie.

2007-11-16T00:41:00.000+10:00

As that old saying goes, is this the 'calm before the storm'?

The haunting, piercing sound of curlews screeching through the dense humid night is like an omen.

Tropical cyclone Guba is expected to remain slow moving, drifting to the south for the next 2 days. As of 10pm Thursday 15th November 2007, Guba was 365 kilometres northeast of Lockhart River.

Hopefully, Guba will move away from the coast rather then intensify and cross the coast. That remains to be seen. Meanwhile, being prepared is the safest action to take.

Thank you for visiting this site. Please, do stay awhile and browse. You are very welcome.

Sue Bayliss. Cairns, Australia.

"What exactly did you say?"

2007-11-14T21:18:00.000+10:00

Sound familiar? Yes, indeed. For many of us such responses are commonplace! We need a strong support network.

(To Indigenous Australian readers, I respectfully alert you to my use of a recently deceased person's name in this article. I apologize for any distress that reading this article may cause. No offence is intended.)

When speaking to Peter Seth my 11 year old Grandson on the telephone, I requested he tell his parents that Frankie McIvor died yesterday.

"Yes Grandma, I'll tell them," came the reply. Silence.

"Would you tell them now, please Peter?" I requested.

To my dismay I heard Peter shout out "hey Mum, Dad, Grandma said to tell you right now, some guy called Frank went to Mackay yesterday!"

Hm. Well, my daughter Elizabeth and son-in-law Duncan came to the phone asking, "what exactly did you say?"

Another experience notched up in the life of a spasmodic dysphonic!

I feel so disrespectful when I laugh about this incident but honestly if we don't laugh, we cry!

Dystonia Australia has until recently been the main National support organisation in this country for people with any of the many forms of dystonia. Dystonia Australia has now ceased operations due to insufficient financial and material support.

If you are able to offer support in any way, please email me or leave a message on this site. Alternatively, if you live in Far North Queensland or even further afield, consider attending our local support group meeting here in Cairns on Saturday 17th November at the Cairns City Library, 151 Abbott Street, Cairns. We are meeting from 11am to 2pm in meeting room number 2. You are most welcome. Luncheon provided, no charge.

There are some excellent highlighted links in this article. They will lead you to a better understanding of Australian Indigenous issues, information about many forms of dystonia and, some delightful information and images of Cairns, the Far North Queensland area and Mackay. Don't forget the two links below.

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

Guba blows up a storm in Far North Queensland

2007-11-14T15:23:00.000+10:00

Yes, our 'Wet' Season sure is here. Tropical cyclone Guba is bringing refreshing rain to the Cape. A cyclone watch has been declared for coastal and island communities from Thursday Island to Cape Flattery on the far North East coast of Queensland, Australia. As of 1pm today, Wednesday 14th November 2007, the predicted route of this category 1 cyclone is to move away from the coast. Hopefully, this cyclone will not intensify beyond its present strength and will turn away from the coast. However, cyclones are not at all predictable so it could decide to stand still, intensify, change direction or disintegrate all together. The next cyclone advice will be issued at 5pm today's date.

Do take time to explore the Australian Government's Bureau of Meteorology site and follow the course of Guba. From the site (highlighted) you can explore and learn a great deal about meteorology. Great for young people and us oldies alike!

This cyclone was to be named Rebeca by the Aussies. However, the Papua New Guinea people got in first and named her Guba - meaning 'sky', I am told.

Thank you for visiting this site. I hope all the highlighted links are enjoyable and informative for you. Learning about things we may not usually come across in our day to day lives seems somehow to give us a lovely 'lift' or maybe, a natural high!

Sue Bayliss. Cairns, Australia.

Cyclone season is here.

2007-11-13T12:38:00.000+10:00

Storm alert : As the first major low pressure system forms this year off Papua New Guinea, weather forecasters are warning of the most active cyclone season in years for Far North Queensland (The Cairns Post Nov 13, 2007 p.1).

The above image is an Australian Region Visible Satellite Image of the storm off P.N.G. and heading our way. (Source: Image from Japan Meteorological Agency satellite MTSAT-1R via Bureau of Meteorology. Captured: Monday 12 November 2007 22:30 UTC).

Follow this link, learn what to do and how to stay safe during a cyclone.

Cyclone Larry's catastrophic toll is well remembered in Far North Queensland as it crossed the coast at Innisfail, approximately 6.20am on Monday, March 20, 2006.

There is no room for complacency in the lives of people living in the path of destructive storms.

Follow the links in this article, learn about appropriate preparation for a cyclone and or a flood.

Enjoy the linked images of our geographic area while thinking about the great losses people experience following a severe storm.

Where ever we may be, let us all share a thought for those affected by the forces of nature. Be informed, be prepared, be safe.

Sue Bayliss. Cairns, Australia.

Armistice Day 2007.

2007-11-11T16:59:00.000+10:00

(Following the highlighted links will lead you on a journey of discovery. Learn about the history associated with this article.)

Australia's Prime Minister John Howard honours fallen Diggers.

November 11, 2007.

PRIME Minister John Howard has paid tribute to Australia's war dead in the annual Remembrance Day ceremony at the Australian War Memorial.

Mr Howard told the crowd of military officials, diplomats and members of the public that the recent deaths in Afghanistan of Trooper David Pearce and Sergeant Matthew Locke were a sad reminder of the ageless nature of sacrifice.

"That both of these deaths should have occurred at the time of an election campaign that celebrates, in a sense, the great democracy not only here but around the world, that they and others who've fallen in battle have died for," he said.

"(Their deaths have) reminded us in a real way of the nature of sacrifice in war."

Earlier, Mr Howard's official car took a wrong turn as he and his wife Janette arrived for the ceremony.

As the crowd watched, Mr Howard's car turned right where it should have turned left and had to make a second circuit of the roundabout below the war memorial.

(http://www.theaustralian.news.com.au/)

Sue Bayliss. Cairns, Australia.

Meeting mother nature in Far North Queensland.

2007-11-10T21:17:00.000+10:00

(Thank you for visiting this site. I hope you enjoy following the highlighted links and images in this post.)

Cyclone season is approaching,
crocs are moving close to town.
Stingers stop us swimming
so we stay upon firm ground.

Now that mango trees are blooming
flying fox fill the evening sky
and grass is quickly dying,
it is enough to make me cry.

Destructive storms we do not want
nor tsunami from the sea
though rain brings hope to our Aussie lot
and bounty of the farmers crop.

In this land down under at the top
we sometimes wait for the rain to stop.
At times like now we watch and yearn
for signs to show of wet season's return.

And so I say to you this day
come and see us, maybe stay!
Rain and thunder will not keep me away
from welcoming you, so come anyway.

Sue Bayliss. Cairns, Australia.

Lest we forget.

2007-11-10T15:46:00.000+10:00

On 11 November 1918 at 11 am the guns of the Western Front fell silent after more than four years of continuous warfare. This year marks the 89th anniversary of the armistice, when Australians remember those who fought and died for our country in war and armed conflicts.

My father, two brothers, husband, brother-in-law, son, one niece, four nephews and many uncles, all served in the Australian Defence Forces. Most of them saw more than their fair share of war service. They all suffered emotionally - so have their partners, children and grandchildren!

Some years ago my late husband wrote about his experiences. The site hosting his book closed in recent years. However, the Lae Game Fishing Club in Papua New Guinea posted the introduction to his book on their site. You can access it through this link.

My husband lies at rest in Cooktown Cemetery. He has an Australian War Grave.

Prior to my husband's retirement from the Australian Defence Forces in 1976, we spent 109 months out of a total of 188 separated because of service requirements, including war service. Our son David is custodian of his father's writings. David, an archaeologist and a returned serviceman, will be putting his father's book on the 'net in its entirety again in the near future. Some of the photographs require editing and others had not appeared as they were intended. These amendments are being worked on.

In memory of our fallen servicemen, we salute you. May you rest in peace. Lest we forget.

Sue Bayliss. Cairns, Australia.

Support Group Meeting: a reminder.

2007-11-07T17:21:00.000+10:00

Atherton Tablelands and Cairns Dystonia Support Group Meeting.

Saturday, 17 November. 11am - 2pm.

At the Cairns City Library, 151 Abbott Street, Cairns.

Meeting room 2 - through front door, turn left and follow signs.

No charge

Sandwiches, fruit, tea, coffee, juice provided.

Phone Sue for catering purposes - 0407624578.

Are you a local and have dystonia? Do you know someone with dystonia? Are you treating someone with dystonia? Would you like to know more about dystonia? Please, do join us. You are welcome.

Do you live elsewhere in Australia? Consider taking advantage of low cost air fares to spend a weekend in Cairns before the Wet Season arrives! We invite you to attend our meeting and share our experiences.

Dystonia has many forms. We have resources available for people with dystonia, family members, doctors and allied health professionals.

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

Sue Bayliss. Cairns, Australia.

Dystonia Australia: where to from here?

2007-11-07T12:36:00.001+10:00

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

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

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

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

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

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

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

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

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

Dystonia Australia Operations Suspended

2007-10-18T13:42:00.000+10:00

It is with heartfelt sorrow that I post the following message from the Directors of Dystonia Australia.

"It is with great regret we advise that Dystonia Australia has ceased operating for the time being and is unable to provide its services to those seeking its assistance.

Dystonia Australia has played an important role in the education and support of people with dystonia and we remain grateful to those who have contributed in various ways since its inception in January 2004. The focus of this organisation has always been on people. Dystonia Australia has given people with dystonia a sense of belonging, an outlet for anxieties and a feeling of comradeship while at the same time helping to educate the wider community about the movement disorder. Research was also undertaken through the application of a special purpose grant donated to the organisation.

Dystonia Australia has been funded for the duration of its 3½ years of operation only through charitable donations and receives no governmental or other form of financial support. Regrettably, there is currently insufficient on-going funding and material support to keep it going but we trust that, in providing knowledge and hope for the dystonia community, we have instilled a positive and lasting presence that will continue on through the many support groups and connections that have been made.

We particularly thank our National Coordinator, Nicola Dawson for her superb organisational skills in establishing Dystonia Australia through workshops, a website, educational material and an excellent newsletter. Her energy, commitment and thoughtfulness have been inspirational.

There are others who generously and sacrificially gave their time, money and skills to help Dystonia Australia become a trusted charity, and we are also indebted to them.

Dystonia Australia will continue to operate its web site and the directors are examining ways to restructure the organisation. We hope that, with wider support and commitment from those in the dystonia community, their friends, families and associates, it will soon gain a more secure footing to enable it to once again actively pursue its aims.

The Directors of Dystonia Australia
October 16th, 2007"

Dystonia and those 'bitter sweet' experiences of life.

2007-10-10T22:41:00.000+10:00

Travelling over 1,600 kilometres to the nearest treatment centre can be quite an effort for those of us with dystonia living in Far North Queensland. Enjoying a brief holiday following treatment is a nice way to get through those anxiety laden injection days!

Just to be different, a train journey is the chosen mode of transport this time. Cairns to Brisbane on the tilt train for 25 hours gives plenty of time for watching movies, listening to book readings or taking in the scenery. Returning on the Sunlander takes 31 hours so a nice little cabin with cozy bunk beds makes the journey more comfortable. Brisbane is a great place to visit. However, home is a refuge from a world of busy activity and strange city sounds. Memories keep the dream alive!

Bells ringing, sirens howling, horns honking and people everywhere do not detract from the enjoying experiences available right in the heart of Brisbane City. Some extra packages of delight are trips to the Lone Pine Koala Sanctuary and whale watching on Brisbane's Moreton Bay.

Where ever you are, I hope your day is full of loving memories while you enjoy the comforts of home. Do take some time to follow the highlighted links in this article. There are some magical places just waiting for you.

Sue Bayliss. Cairns, Australia.

Home and away ...

2007-09-27T22:01:00.000+10:00

Thank you for visiting this site.

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

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

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

Sue Bayliss. Cairns, Australia.

Dystonia support group

2007-09-25T22:30:00.000+10:00

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

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

Saturday, 17 November. 11am – 2pm

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

(Please phone Sue for catering purposes 04076 24578)

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

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

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

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

Atherton Tablelands & Cairns Dystonia Support Group

2007-09-24T14:12:00.000+10:00

plans a movement disorders promotional/educational dinner for Far North Queensland's medical practitioners and allied health people in April 2008.

World Voice Day, 16th April 2008 is the date set for the above mentioned function. Watch out for more information as we confirm the venue and details for the event.

Dystonia is a neurological movement disorder that causes muscles in the body to contract or spasm involuntarily. Dystonia is the third most common movement disorder after Parkinson's Disease and tremor. Nonetheless, dystonia is often misunderstood by the public and misdiagnosed by medical doctors. Dystonia is neither a psychological disorder, nor does it affect intellect. Dystonia is not fatal, but it is a chronic disorder that causes varying degrees of disability and pain, from mild to severe.

Although not commonly acknowledged it is interesting to note, Dystonia is at least as common as Multiple Sclerosis.

Focusing on movement disorders in general, the promotional/educational dinner provides opportunity for our local health community to meet, hear and ask questions, with treating neurologists and specialist nurse consultants from Brisbane and Sydney. In addition to our Southern guests, some of our local allied health people are speaking and available for questions as panel members.

Members of our Atherton Tablelands and Cairns Dystonia Support Group are now planning presentations for the evening in consultation with our guest speakers.

If you would like to make a suggestion or know more about this event, please leave a comment or email me (s.j.bayliss@bigpond.com.au). I will get back to you. All highlighted links in this article will take you to more detailed information about dystonia and other movement disorders.

Sue Bayliss. Cairns, Australia.

The Diary of Dialysis Patient Vicki.

2007-09-23T22:25:00.000+10:00

Media Release

23 September 2007

The Diary of Dialysis Patient Vicki who has made a decision to purchase a kidney for transplant from overseas has been released today to every Member of State and Federal Parliament in Australia by Kidney Health Australia via a special email bulletin.

Vicki's story has become public today in the Sunday Telegraph in NSW .

Vicki, a forty year old from New South Wales, has been waiting for a kidney transplant for three years and details her weekly physical and personal fight for survival and the trials and tribulations of surviving on dialysis.

Read Vicki's Diary

Patient plans to buy kidney to stay alive.

Anne Wilson, CEO of Kidney Health Australia said, "Vicki had approached Kidney Health Australia to tell her story publicly with the aim of highlighting the daily issues dialysis patients face and the urgent need to increase the number of organ donors."

Ms Wilson said, "the brave actions of Vicki to tell her story will place a community focus on the many difficulties dialysis patients and their families face everyday.

"At the present moment there are just over fourteen hundred people waiting for a kidney transplant with the average waiting time being around four to five years."

We believe the shortage of kidneys for transplantation will in the future see an increase in people purchasing organs from overseas as the number of people moving onto dialysis is increasing at 6.5% a year, Ms Wilson said.

Kidney Facts:
· One in three Australians is at risk of developing kidney disease.
· One in seven Australians has at least one indicator of kidney damage.
· As many as 2.3 million Australians may be affected by early-stage kidney disease and not know it.
· Kidney disease is the seventh biggest killer of Australians, killing more people each year than accidents, suicide and breast cancer.
· Over 40 people die of kidney failure each day.
· 11.3% of all deaths in Australia are due to, or associated with, kidney failure.
· Deaths from kidney failure have doubled in the past 20 years.
· A person can lose up to 90% of their kidney function before experiencing any symptoms.
· Number of cases of kidney failure is increasing at around 6% per annum
· The number of people on lifelong dialysis has increased by 6.5% each year

Media Enquiries:Ron Smith National Communications Manager Kidney Health Australia Mobile: 0417 329 201.
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Please, do read Vicki's diary and Vicki's story as printed in today's Sunday Telegraph in New South Wales.

Vicki is such a brave woman. Her story speaks for itself. Kidney disease dealt a devestating blow to my family. Well do we know the anguish associated with renal failure. My husband died as a result of this disease. Links included in the article above will give you more information on the key words highlighted.

Sue Bayliss. Cairns, Australia.