Are you a health professional interested in neurological movement disorders?

The Atherton Tableland and Cairns Dystonia Support Group invite you to attend a Movement Disorders Symposium on Wednesday April 16th 2008 at The Cairns Colonial Club Conference Centre, Lockhart Room, Behan Street entrance.

This exciting event brings together a panel of expert speakers discussing various aspects of a range of movement disorders; options for referral and treatment, recent research outcomes in Australia, Britain and the United States of America and the bio-psycho-social effects of movement disorders on patients in Far North Queensland.

Principal speaker :
• Dr John O'Sullivan (MBBS, FRACP, PhD.), a Consultant Neurologist, Neurology Department, Royal Brisbane and Women's Hospital, (R.B.W.H.) will be speaking about dystonia.

Additional speakers :
• Dr Steven Dommann, Consultant Neurologist, Townsville General Hospital. Movement disorders.
• Ms Karen O'Maley R.N., C.N.C. Neurology Department, R.B.W.H. Parkinson’s disease & other movement disorders.
• Ms Maree Brockie, Multiple Sclerosis Society of Queensland. Brisbane.
• Ms Melanie Mirotsos, Physiotherapist, Diagnosys Physiotherapy, Cairns.
• Ms Gail Rogers, Speech Pathologist, Cairns Speech Pathology, Cairns.
• Ms Suzanne Bayliss, Social Worker (Retired). Atherton Tableland and Cairns Dystonia Support Group.

For your information & interest the specific goals for the event are:
a. to present the opportunity for the medical / health professional community in FNQ to increase their knowledge from specialists regarding movement disorders
b. to communicate with the medical / health professional community in FNQ educational and promotional material specific to movement disorders
c. to establish a network of medical / health professionals in FNQ interested in Movement Disorders
d. to establish a Movement Disorders network / support group in FNQ
e. to increase support from the community by raising awareness of movement disorders
f. to increase resources for individuals to access
• timely referrals
• specialist assessments
• management services
• appropriate equipment & support.

With great pleasure we are able to provide this evening free of charge thanks to very generous educational grants by Allergan Australia and Ipsen Pty Ltd. whose representatives will be attending the evening. These grants will enable our local health professionals to continue their professional education in the areas of neurological movement disorders.

Programme:

6.00PM – Meet and greet on Lockhart verandah.
• Registration.
• Welcome drinks and canapés.
• Complimentary juice, soft drink and iced water.
• Bar available to self-purchase alcoholic beverages.
• Poster, trade and pharmaceutical displays.

7.00PM – Move through to dining room.

• Buffet dinner with banquet style seating.
• Guest speaker presentations.
• Panel forum receiving and responding to questions.
• Completing evaluation forms and collection of same.

Conclusion approximately 9.30pm


RSVP by 4th April to:
Sue Bayliss,
M: 0407 624 578
E: s(dot)j(dot)bayliss(at)bigpond(dot)com(dot)au

Come to Cairns and celebrate with us . . .

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

(Dr John O'Sullivan, pictured)


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

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


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

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


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


Additional speakers are,

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

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

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

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

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

Sue Bayliss. Cairns, Australia.

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

Botulinum Toxin: a safe treatment option for symptoms of dystonia.

We read about demands for safer administration of botulinum toxin by attaching notices on packaging and information to physicians. In this instance media in the United States of America reports the death of 16 people allegedly linked to the use of botulinum toxin injections.

Looking further than the original article makes good sense. We sympathize with the families of those who died and indeed think of the people themselves and how life can be cut short when least expected. However, much more information is required.

What do we know about the group making demands for stronger warnings? Do we know what their motivation for this request is? Were there other medical complications present when these people died?

What are the facts of which we are aware in relation to the use of botulinum toxin?

In coming weeks it will be interesting to hear more about this issue. Meanwhile, we do know that in relation to treating the symptoms of certain forms of dystonia, botulinum toxin is the favoured treatment. There is a great deal of evidence stating botulinum toxin is also a safe treatment.

Talking to your treating neurologist, family doctor or some other member of your treatment team is a good place to start if you have any questions about your treatment. The drug companies in question are reputable and have sound policies of corporate responsibility.

By all means, follow news articles about these warnings but please, do not consider changing your treatment plan without discussing this with the appropriate people first. The relief gained for people with dystonia using botulinum toxin is very well documented. I am travelling 1,600 kilometres to Brisbane next week for botulinum toxin treatment at The Royal Brisbane and Women's Hospital. My treatment team is indeed professional, trustworthy and reassuring, when ever I have questions about my dystonia or any form of treatment.

Follow the highlighted links in this article to understand better the concerns raised and watch for further information as it comes to light.

Sue Bayliss. Cairns, Australia.

G'day USA: Calling all dystonians ...

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

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

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

Sue Bayliss. Cairns, Australia.

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

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

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

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

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

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

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

Atherton Tablelands and Cairns Dystonia Support Group Meeting.

(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

Atherton Tablelands & Cairns Dystonia Support Group

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.

Dystonia and commonly held perceptions: the sound of a funny voice or a portrait in the mind’s eye?

Fragile, computer illiterate little old lady? Not on your ninny, sweetheart!

This story reflects a personal experience encountered by the writer during the past fortnight.

Noticing more money than expected in her every day savings account the war widow checked her internet banking system. One regular fortnightly bank authority payment had been returned to her account with a comment. The message stated, “Payment rejected. Payments Service is temporarily unavailable. Please try again later.” Alarmed, the woman hears her forceful strangled sounding voice muttering aloud, “what does this mean?” Carefully checking account numbers on her internet banking screen, there is nothing different in the numbers. She notes the transaction occurs successfully on a fortnightly basis over the previous 15 months.

With spasmodic dysphonia and cervical dystonia, the woman has difficulty using the telephone keypad and speaking. Continuing to make approximately six to 10 calls plus several emails per day to her own banking institution and the company whose electronic system is suddenly rejecting payment, she persists in her efforts to resolve the situation. Alas, both institutions continually state the problem remains with the other.

Physical ability rapidly spiraling down, the woman’s effort to speak coupled with the sharp increase in pain from spasming neck, shoulder, arm, hand and vocal cord muscles result in her need to manage the situation some other way. Requesting technical support people at both institutions speak to each other on her behalf, the woman hears nothing for several days. Time to initiate a fresh approach!

Following a visit to the banking institution holding the woman’s personal accounts, further telephone calls and emails are forwarded on her behalf by very supportive staff. The situation continues with no resolution. Some major technical system difficulty within the company constantly rejects the payment. More telephone calls by several people to that company confirm their belief the problem is with either the woman herself or with her banking institution. Then, as is frequently experienced by people with dystonia, a bitter sweet outcome to a problem situation!

One very supportive bank employee suggests reversing two initial numbers of the BSB. The numbers appear to belong to an outdated financial transaction system. Achieving success by reversing the two numbers, transaction is accepted!

Feeling elated, the woman makes a courtesy call to the other company. Now two weeks since initial contact, she tells the young woman answering the phone of the result. Checking their accounts the young woman returns to the telephone stating the money has not been received. Suggesting the transaction may not show until the next working day, the woman is abruptly told reversal of the numbers would result in the money going somewhere other than to one of their accounts. The younger woman infers something to the effect that the problem is a lack of knowledge and ability to use internet banking because it is not happening to other customers. After a long pause she makes further statements referring to the woman’s inability to speak or to be understood. One suggestion is rather rudely made to take someone who can speak properly to her bank and sort it out.

Unable to initiate any speech in response, the woman bursts into tears resulting from two weeks of frustration, distress and fatigue. Other very hurtful and derogatory remarks are made both by the younger woman and another who also telephones the older woman back. Evidently they consider they are spending too much time on a problem situation that is not their responsibility.

When informed of the war widow’s great distress, staff at the banking institution holding her accounts are very supportive, reassuring and helpful. Unable to speak without great effort, the woman now ponders her options.

It seems the sound of an ageing lady with a funny voice and pain from a body twisted with muscle spasms when speaking on the telephone leads some to assume she is computer illiterate, lacks technical savvy, is unreliable with her problem solving skills and is not to be taken seriously. Well, we will see.

Disability Advocacy and Information Service Inc, and Human Rights and Equal Opportunity Commission are two avenues of support and action that may be available to people experiencing discrimination or social injustice. When approaching either of these services, referrals to other appropriate avenues of address are offered.

Those of us with spasmodic dysphonia may not have a voice but we can still roar. When our bodies are painful and twisted we may not be the first cab off the rank but just watch us run with the wolves. We are not God’s police, it is true. However, we are not damned whores either.

Sue Bayliss. Cairns, Australia.

Dystonia: collectivizing our experiences.

Dystonia is a little known about, non life threatening but chronic, neurological syndrome causing muscles to spasm and pull the body into abnormal positions.

When people who have dystonia manage to find each other it is an uplifting experience for all involved. Experiences of misdiagnosis and the perception held by many that the cause of dystonic symptoms is all in the head leads to intense feelings of frustration for sufferers. Contact with other people, who have experienced similar pathways before reaching a correct diagnosis and treatment of symptoms, leads to a whole new way of coping with life.

Navigating hospital corridors or waiting in a botox clinic is often the first opportunity a person with dystonia has of seeing, hearing and speaking to others who have the same neurological condition. Not a place where people usually become acquainted! However, there is a sense of collectivizing personal experiences that is better expressed as experiencing a process of normalization when a person finds they are in the midst of a group of people with similar symptoms.

For too long, many people with dystonia have been socially isolated and marginalized within their family and also their community. Seeing and hearing others with dystonia energizes or empowers people to share their experiences of coping by taking part in support groups or even to start a group in their area.

Support groups provide contact, comfort, reassurance, up to date information and a venue for sharing coping mechanisms. Through on-line or local community support groups, sufferers are able to help others and receive help for themselves.

If you would like to leave a comment please do so. It is okay to remain anonymous. Alternatively, contact me by email and I will get back to you.

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

Dystonia and the outcome of botox treatment: having your say!

Shush! What is she saying? I can’t hear her.

For people with spasmodic dysphonia, also known as laryngeal dystonia, speaking can be an incredible effort prior to treatment. This form of dystonia is considered rare. Caused by overactive movement of muscles of the larynx, a smooth flow of speech is impossible. The person’s voice may sound strained, effortful and experience sudden interruptions causing the voice to momentarily drop out during conversation. Botulinum toxin injections remain the preferred treatment for the majority of people suffering from spasmodic dysphonia. Following treatment, the vocal cords are temporarily relaxed until the effect of the toxin begins to wear off. Although speaking is effortless after treatment, the person’s voice may remain very soft over a period ranging from weeks to months.

Voice amplifiers designed to magnify very soft speech may be an advantage for managing the post treatment phase of the cycle of treatment for people living with spasmodic dysphonia. At the recommendation of my treating speech pathologist following a needs assessment, I trialed several brand names of voice amplifiers with a selection of microphone systems. For my personal needs, trialing several systems has been most beneficial. Together with my treating speech pathologist we have made a decision on the machine most suitable for my needs. For some people, funding is available to purchase the appropriate communication aid through the Queensland Government’s Medical Aids Subsidy Scheme (MASS). There are eligibility criteria to meet before being able to access the MASS in the Australian State of Queensland.

Browsing through the links in this article may assist you in tracking communication aids suitable for your needs or for someone known to you. Alternatively, your family doctor, speech pathologist or nearest Community Health Centre may be able to assist you.

Sue Bayliss. Cairns, Australia.

Hey! What on earth is wrong with your eyes?

Blepharospasm. This is a form of dystonia, a neurological movement disorder causing muscles to involuntarily spasm or contract. In some forms of dystonia, these contractions may result in twisting, repetitive movements and abnormal bodily postures.

The first symptoms of blepharospasm may be constant blinking, uncontrollable squinting, eyelids twitching and spasming, or experiencing great difficulty in keeping your eyelids open. Blepharospasm is described as a focal dystonia affecting the muscles associated with our eyes.

Focal dystonia refers to symptoms affecting a single body area. In the case of blepharospasm, it is usually present in both eyes. Initially, the spasms may begin in response to bright light, fatigue or emotional stress. Occasionally, spasms may progress to a stage where the eyelids close tightly for hours at a time. During these times vision impairment is due solely to the muscular spasms causing the eyelids to remain closed.

Eyesight, cognitive function, strength, and all senses are normal. Blepharospasm, like other forms of dystonia, is thought to result from abnormal functioning of deep brain structures known as the basal ganglia which are involved in controlling our movements.

Symptoms of blepharospasm respond well in most people when treated with botulinum toxin injections, commonly referred to as botox.

To learn more about this form of dystonia, follow the highlighted links above. If you would like to leave a message, please click on the ‘comment’ link below. Alternatively, email me at s.j.bayliss@bigpond.com.au and I will get back to you. I have been away this week and have many emails to respond to. I will reply to all by this coming weekend. It is lovely to hear from so many people. Thank you.

Sue Bayliss. Cairns, Australia.

Don’t take them with you mate, please!

Heaven knows, we really do need them here. From February 17th to the 24th Queenslanders Donate are celebrating Australian Organ Donor Awareness Week.
This celebration is their annual campaign to raise awareness of organ donation and to encourage people to register with the Australian Organ Donor Register.

Organ donors can save lives. Organ and tissue transplantations can help the many Australians who are suffering life threatening illnesses, including heart, kidney and liver diseases, diabetes and cystic fibrosis. There were 218 organ donors in Australia in 2004, while there are nearly 2000 Australians waiting for an organ transplant at any time. Sadly, many of these people may die waiting for a transplant.

Last month, Australian health ministers changed the Australian Organ Donor Register to a register of consent, rather than intent. This means that when a person has registered their consent through the Australian Organ Donor Register, clinicians will no longer need to seek the consent of the person’s family.

The Health Insurance Commission has useful information on the Australian Organ Donor Register.

The Australian Department of Health and Ageing releases media statements encouraging all Australians to register.

HealthInsite has a topic page on Organ Donation where you can find other useful information. (please note the dates on this site may not have been renewed. This is an annual event)

Queensland Health Events Calendar 2007-08 is a great way to catch up with some of Queensland Health's important events.

Are your kidneys ok? Do you know, 63% of all organ transplants are kidney related? Watch out for more about this tomorrow.

Sue Bayliss. Cairns, Australia.

Twisted. Living with cervical dystonia and spasmodic dysphonia.

Have you seen this film?

Twisted is a film by Laurel Chiten, produced by Blind Dog Films . This story is about people living with the neurological disorder, dystonia. The experience of being trapped inside your body and thinking about what will set you free is told in the words of people living with cervical dystonia (CD) and one woman, a radio presenter, living and working with spasmodic dysphonia (SD), a form of dystonia affecting vocal cords. Laurel Chiten, the filmmaker also tells a little about her own experiences of living with CD.

A film review by The Santa Fe New Mexican on the back of the DVD cover says, “… Twisted is a success. Not only because of the filmmakers personal connection to the topic but because of the film’s fascinating and complex cast of characters. Its funky enough to be an art-house flick and brimming with larger themes about how people set themselves free. Part joy, part despair, TWISTED also explores the wonders and limitations of medical breakthroughs.”

If you would like to read a little about the lives of the people featuring in star roles of Twisted, this link will take you to them.

This film reveals inspiring stories of courage, determination and willpower. There is something for everybody. It is suitable for personal collection, continuing professional education, and support group meetings. You can order the film on-line, wherever you live. Just follow the above link to Blind Dog Films.

Sue Bayliss. Cairns, Australia.

Irresistible femme fatale?

Oh how I wish but regrettably, no. Just a funny voice and a pain in the neck.

Simply, the voice of post treatment phase when living with dystonia. Specifically, laryngeal dystonia also known as spasmodic dysphonia, and cervical dystonia also known as spasmodic torticollis requiring treatment with botulinum toxin injections into the appropriate muscles.

With soft, breathy sounding voice, I returned to the Royal Brisbane and Women’s Hospital two days after receiving treatment for spasmodic dysphonia in the Ear, Nose and Throat Botox Clinic. On this second occasion, I received treatment in the Neurology Department Botox clinic for cervical dystonia. Feeling the effects of bruising and the stress associated with this treatment, it was indeed a good feeling to be heading out of the hospital and off to the airport for the two hour plus trip home to Cairns in Far North Queensland (FNQ).

There has been torrential monsoon rains in FNQ for the past week. Cyclonic weather resulted in wide spread flooding throughout the region and made for pretty harrowing flying conditions. How wonderful that feeling of getting through the door of home sweet home!

Arriving home brought a magnitude of thoughts and feelings to mind and body. No vocal spasms when speaking. However, the tight spasms and broken voice now transformed into soft and sometimes highly pitched sounds that are the confirmation of successful reaction to Botox treatment. Along with that comes the dysphagia resulting in thickening drinks and liquid type foods. This is a small price to pay for ease of speech. Feelings of comfort and relief from painfully twisted neck and tightness of shoulders seems to drape me like a cloak of soft velvet. Yes, it is so good to be home.

Thoughts creep into mind about the need to travel several times a year for treatment. The distance is approximately 3,200 kilometers, round trip. Brisbane is a welcoming city. Medical facilities are available. Transport is excellent. Appropriate services are there. Recreational opportunities abound. There is family support from close family members and also extended family. The needs of people living with dystonia are so much easier to provide for in a city where treatment is available. These kinds of thoughts become temptations to act.

Many people living in non-metropolitan cities as well as rural and isolated areas face difficult decisions about meeting their medical needs and also their social needs. Home and family presents as a pull factor just as the lack of medical services in some geographical areas becomes a push factor in decision making. This may present some people with an experience of personal conflict.

Living with any disability is not just about the disability. The experience encompasses a multitude of factors requiring decisions that would not otherwise need to be made. In relation to dystonia, becoming more aware of this neurological condition and supporting research in your own country will lead to curing dystonia rather than treating the symptoms. Watch out for public campaigns focusing on dystonia during 2007 and consider giving your support in what ever way you can. Many people both now and in future generations will really appreciate your efforts. If you would like to comment, please leave a message. Alternatively, I am happy to hear from you by email at s.j.bayliss@bigpond.com.au and I will get back to you.

I hope the many links in this article are of interest to you. Wherever you are, I hope your day is full of happiness and joy.

Sue Bayliss. Cairns, Australia.

Cervical Dystonia: a pain in the neck!

For your convenience and access to information and resources, each highlighted link in this article leads to a different site. You will be able to find other resources in your country.

Although I have mentioned the use of Botox for treatment of Cervical Dystonia (CD) in previous blogs, there are other articles associated with pain I would like to recommend. Pain can be a difficult experience to describe. Different parts of the body reflect different degrees of discomfort or pain. Bone pain is very different to muscle spasm. Pain associated with circulatory problems is different to headache pain. There are different drugs used to treat pain. Acute pain requires a different approach to chronic pain. Diet is central to all areas of health. Lifestyle can be both seriously affected by pain and is also essential in managing chronic pain.

All the above mentioned variables contribute to how we manage our every day life. The pain associated with CD can be more intense than the tight feeling of spasming vocal cords resulting from spasmodic dysphonia (SD). Arthritis contributes to the pain of CD. So it goes on.

Living with discomfort and or chronic pain need not be a crippling experience. We are not expected to be martyrs, constantly suffering from the ageing experience. Life is a gift to be enjoyed. It is too short to be obsessive about a physical disability. Together, let us move on knowing others share our experiences. We can also share our joy, our friendship, our knowing that future time will provide treatments to cure dystonia in all its forms. The hope of cure in time to come is worth the treatments we now receive to relieve the complex symptoms of cervical dystonia and also the other dystonias.

I hope you have found something here enabling you to feel more confident in making informed decisions about your treatments. Whatever you are thinking, always discuss it with your medical team. They are here to assist us and in many ways, our relationship with treating specialists, family doctors and other health professionals, is reciprocal.

You are welcome to leave your comment or email me at s.j.bayliss@bigpond.com.au and remember we are only a touch type away from each other. Have a great day.

Sue Bayliss. Cairns, Australia.

Spasmodic Dysphonia and telephone phobia!

This article discusses an excellent service in Australia for people who have a hearing and or speech impairment. Countries other than Australia may have similar services.

ACE refers to Australian Communication Exchange, connecting anyone with everyone. This service in Australia is a non-profit organization dedicated to empowering people who are deaf or have difficulty with hearing, speech or communication, to use the telephone. The service allows people with a hearing and or speech disability to telephone or to receive calls, anywhere. The service provides for local, interstate and overseas, telephone calls for either personal use or for business. Confidentiality is assured. Other people without hearing or speech disability use an ordinary telephone to take or return the calls.

Choices for people to utilize this telephone call service are as follows.

Type and read calls, also known as text to voice calls, allows a Relay Officer (RO) to become your ‘voice’. As you type your message/conversation on the keyboard of your phone, the RO reads your words to the other person. Listening to how the other person replies, the RO types their words back to you. You read the message on a small screen above the keyboard. Calling a person is easy. With this type of call you do not use your voice at all. You can make a call by phoning the National Relay Service (NRS), following the prompts on screen and type away.

Type and listen calls, also known as hearing carry over calls, are for people having difficulty with speech but have no problem with hearing. Whilst you type your words into your phone, the RO reads them to the person you are calling or hearing from. You listen to the other person as you would in any straight forward phone call. The only difference is, you type your side of the conversation.

Speak and read calls, also known as voice carry over calls, are for people who can not hear well but still prefer to use their own voice or a voice device. The relay officer types the other person’s conversation for you to read but then you use your voice to speak, knowing the other person is able to hear you. If you wish to telephone another person with the same disability as you have you can both use your voices but read as the RO types your words to each other. In this way you both do all the talking but the RO does all the typing for you as you read what the other person is saying.

Speak and listen calls, also known as speech to speech relay calls, are for people having difficulty speaking and or communicating but prefer to use their own voice or voice device to speak to the Relay Officer. This type of call is good for people who find others have difficulty understanding their speech on the telephone. The RO, trained and experienced in listening to people with speech impairments, is able to re-speak all or a part of your conversation to the other person if they have not understood you.

A TTY (teletypewriter) is a telephone with a small keyboard, allowing you to type a message. Keystrokes are converted into signals and transmitted via a telephone line. There are different styles of telephones, depending on your particular need.

To access a TTY telephone in Australia, you may contact the Telstra Disability Service. Your doctor or speech pathologist is able to sign the application form verifying your need for this type of service. Cost to the consumer is the same as any Telstra home telephone. You can access the National Relay Service site by clicking the link at the beginning of this article for plenty of information about the service. For people in countries other than Australia, contact your local telephone company or your disability services agency for information. However, by browsing through our Australian site you may have a more informed opinion on which type of TTY phone service you require before following it up in your own country.

I use my TTY telephone when my voice is very strained and effortful. I also use this phone following Botox treatment when my voice is very soft and breathy sounding. The phone can also be used as a regular telephone by anyone else in my home. This service is of great benefit to me, reducing that feeling of horror that goes with, 'Oh, dear God! I've actually got to use the telephone'.

I hope this information has been useful to you. Please, leave a comment if you would like to. I am happy to reply.

Sue Bayliss. Cairns, Australia.

G’day Mate on this great day, AUSTRALIA DAY 2007.

Hello there, where ever you are. I am here in Oz. Cairns, Far North Queensland, is my place of abode. I may have a disability or two but that doesn’t stop people like me with dystonia from enjoying life, with YOU.

Have a squiz at the variety of sites below, then we can have a yarn over smoko.

http://australiaday.gov.au/

http://www.australia.com/home_uk.aust?L=en&C=GB

http://www.athertontableland.com/

http://www.paronellapark.com.au/

http://www.undara.com.au/

http://www.auinfo.com/Innisfail.html

http://ninemsn.com.au/home

You know, we are not that far away, as the crow flies anyway! Australia has lots of International airports around the coast. Good travel services from all the Capital Cities to where ever you would like to go.

Grab your coffee. I’ll grab my tea. Get into those comments and let me know where you are from. Aussies love to have a yarn - any time, any place, anywhere!

Sue Bayliss.

Accessing online pamphlets and other information.

Go to www.dystoniaaustralia.org.au and click on ‘what is dystonia’ for an easy to read, excellent summary of dystonia. You will find, when you scroll down that page, a comprehensive selection of clearly explained information in pamphlet form. You can print off any of these pamphlets for your own convenience or to give to others. This is one way of learning more yourself. You can also spread the word about any form of dystonia, among family and friends! Below the pamphlets you will find some topics to click on and read a short explanation on each topic. These can also be printed off for your convenience. I include here for you an example that will take you to those pamphlets.

http://www.dystoniaaustralia.org.au/pdf/dystonia.pdf

http://www.dystoniaaustralia.org.au/pdf/genetics.pdf


Check them all out at your leisure.

By going to the www.dystoniaaustralia.org.au site and clicking onto news/publications, you will see two good books you may be interested in. The second book,
The Spasmodic Torticollis Handbook: A Guide to Treatment and Rehabilitation can be ordered from the address with details as given. This book is well worth having.


Sometime, when you have time, please consider returning to the Dystonia Australia site and explore other areas within. Meanwhile, where ever you are around our beautiful world, stay well. Enjoy life and together, let us spread the word about this neurological disorder.

Please, do leave a comment if you would like to. Alternatively, I am happy to hear from you via my email address: s.j.bayliss@bigpond.com.au

Sue Bayliss. Cairns, Australia.

DYSTONIAS. Do they impede me in daily life? Am I normal?

The first article highlighted below explains the dystonias, classification, common types of dystonias, pathophysiology, clinical features and testing, and treatment. The second article presents a good explanation of torticollis, now preferably referred to as cervical dystonia. Both offer good reading. You may wish to print off for future reference or save to a file.

http://www.emedicine.com/pmr/topic235.htm

http://www.emedicine.com/neuro/topic377.htm

What about dystonias. Do they impede me in daily life? Am I NORMAL?

Does it matter? You bet it does! What exactly does ‘normal’ mean anyway? A different thing to different people, is my idea. Most dictionaries state ‘normal’ as something meaning, behavior unimpeded by mental or physical disorder. So? Where does that leave us? Fortunately, we do understand each other. Unfortunately, it seems to be only our family and our medical treatment teams who really understand us – and sometimes some of them are not always spot on. Most people outside those categories are not coping too well listening to our speech, getting out of our way in supermarket isles, standing close to us when we get the shakes and nods – especially in a coffee shop or at an auction! How about holding up the line at a busy taxi rank for those of us who need to maneuver like a combination of Elvis Presley and the local rap dance wiz? Especially when some of us with spasmodic dysphonia attempt to quickly tell the people we will only be a moment getting out of their way!

So many of us can relate to living with the various forms of dystonia. It is so much less stressful when we can explain to others about the great things that are happening in areas of support groups, getting to know other people who are as normal as us, and also being able to offer a wide range of accurate information about the dystonias.

My experience of the week occurred in the shopping centre today. I have a respite carer who takes me shopping two hours weekly, allowing my son to have a break and also alerts astute staff at the supermarket they need to get out of my way on that particular day!

Today, in my usual cheery way, I greeted shelf packing staff and offered to put a packet back on the shelf for a young lady who had knocked it as she was getting onto a step stool, ladder thingy. While looking at foods, my carer did not notice my good natured turn of the day. Then, it all happened at once! The girl on the ladder came down with a thump. My carer came running toward me with a look of abject horror on her face. Children ran screeching for their mothers. A supervisor yelling for someone else to come to isle whatever it was. There I was in all my splendor. Spread eagled on the floor. Cartons of every kind of cereal tumbling down from above. Oh dear. It had happened again! Getting the shakes. Doing the head nodding thing. All at the same time as doing the involuntary crab walk waltz towards where I had wanted to go. It all ended in a somewhat dramatic moment of embarrassment. Trying to croak out to everyone that I really was okay just didn’t seem to come out right either! Sound familiar? With pride hurt more than anything else, we finished the shopping and headed for home. I’m sure many of us share embarrassing moments!

Don’t forget, leave a comment if you would like to and have a great day.
Sue Bayliss. Cairns, Australia.

CERVICAL DYSTONIA: treatment with botulinum toxins.

A research article published in January 2006 about treatment of cervical dystonia acknowledged the extensive use of botulinum toxin (BoNT) for this condition.

Findings of the study confirmed significant improvement in head posture and pain among patients, following treatment. Dysphagia, dry mouth and neck weakness, emerged as common side effects experienced by patients.

Although BoNT dosing and brand names differ, there are five brands and two serotypes available. It is noted, at the time of this research, investigation focusing on issues of immunogenic potential and occurrence of secondary unresponsiveness continues.

The research also notes issues surrounding the technique of injection have not yet been sufficiently studied. However, general guidelines are available for administering this treatment.


References:

Comella, C.L. & Thompson, P.D. (2006). Treatment of cervical dystonia with botulinum toxins. European Journal of Neurology, Vol 13. Issue s1, p16. (February).

(This article was initially published online by Blackwell Synergy January 11, 2006)

C.L. Comella: Department of Neurological Sciences, Rush University Medical Centre, 1725 West Harrison, Chicago, IL 60612, USA.

P.D. Thompson: Department of Neurology, Royal Adelaide Hospital, Adelaide, SA, Australia.

Although a brief summary, I hope this article has been of interest to you. I will present a variety of articles on results of research during the coming week. If you would like to leave a comment or a request for a specific topic of focus, please do. Where ever you are, I hope your day is a happy one. Here in Cairns, Far North Queensland, Australia, we are enjoying a beautiful cool evening with refreshing monsoonal rains, not the heavy destructive kind. My little friend, frog, is croaking happily. Trouble is, it seems all his little cousins have joined him!

Sue Bayliss.