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
Showing posts with label speech. Show all posts
Showing posts with label speech. Show all posts
Wednesday, February 27, 2008
Monday, January 28, 2008
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.
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.
Monday, January 21, 2008
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.
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.
Wednesday, January 16, 2008
Cairns Movement Disorders Symposium.
As convener of our Atherton Tableland and Cairns Dystonia Support Group in Far North Queensland (FNQ), I am delighted and very proud to announce Allergan Australia and also Ipsen Australia have provided us with educational grants to host a Neurological Movement Disorders Symposium in Cairns. The event will be held at the Cairns Colonial Club Conference Centre commencing at 6.30 p.m. on World Voice Day, Wednesday 16th April 2008.
Registration, attendance and dinner, are free to all medical professionals, allied health professionals and people with a diagnosed neurological movement disorder. Pre-confirmation of attendance is essential. Numbered tickets will be issued to all eligible attendees following initial contact and a fabulous door prize will be drawn towards the close of the evening.
The Cairns Colonial Club offer very comfortable accommodation that will be at a very reasonable cost for those attending the Symposium. Details of accommodation rate will be posted closer to the time of the event.
We invite all local health professionals to take this opportunity of being involved in this promotional and educational dinner by providing information to the participants by taking advantage of the poster and trade displays and the complimentary packets containing brochure information. We also invite you to advertise the event in to your network.
Our target audience group will primarily include medical and allied health professionals, members of the community in Far North Queensland who have a movement disorder and their carer or a close relative. These people may be geographically isolated from up-to-date information and liaison with others.
For your information and interest, specific goals for the event are:
a. to present the opportunity for the medical / health professional community in FNQ to increase their knowledge from specialists regarding movement disorders,
b. to communicate with the medical / health professional community in FNQ educational and promotional material specific to movement disorders,
c. to establish a network of medical / health professionals in FNQ interested in Movement Disorders,
d. to establish a Movement Disorders network / support group in FNQ,
e. to increase support from the community by raising awareness of movement disorders and,
f. to increase resources for individuals to access
· timely referrals,
· specialist assessments,
· management services and,
· appropriate equipment and support.
Over the coming weeks I will post information on this site about the progress of our planned event. We have excellent speakers from Brisbane, Townsville and Cairns, who are specialists in their field of neurology. We will announce our guest speakers following final confirmation from them on specific topics of presentation.
A brief summary of the Far North Queensland Movement Disorders Symposium is as follows:
The purpose of the Far North Queensland Movement Disorders Symposium on World Voice Day, 16th April 2008, is to offer the opportunity for medical and allied health professionals in this geographical area of Far North Queensland, Australia, to extend their knowledge and practice about a variety of movement disorders from specialist speakers and panel members. Professional practitioners attending the event will be eligible for Continuing Professional Education points.
Programme:
6.30PM – Registration table open:
· Meet and greet on Lockhart verandah, Cairns Colonial Club Resort Conference Centre.
· Welcome drinks and canapés on Lockhart verandah.
· Complimentary juice, soft drink and iced water.
· Bar available to self-purchase alcoholic beverages.
· Poster, trade and pharmaceutical displays.
7.00PM – Move through to Lockhart dining room.
. Continuation of poster, trade and pharmaceutical displays.
. Buffet dinner with banquet style seating.
. Guest speaker presentations.
. Panel forum receiving and responding to questions.
. Completing evaluation forms and collection of same.
If you live in this geographical area or further afield and would like to attend this very exciting event you may contact us as follows:
Atherton Tableland and surrounding areas: Maureen (land line telephone or email),
0740 917137; mumkoala(at)bigpond(dot)com(dot)au
Cairns and surrounding local areas, other areas of Queensland and interstate: Sue (mobile 'phone, SMS text or e-mail), 0407 624 578;
Overseas: Sue's mobile +61407 624 578.
E-mail: s(dot)j(dot)bayliss(at)bigpond(dot)com(dot)au
For your information, both Maureen and I have laryngeal dystonia, hence - 'funny voice'!
Sue Bayliss. Cairns, Australia.
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.
Wednesday, January 9, 2008
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)
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)
Tuesday, November 20, 2007
Botox therapy: what are the occasional down sides of treatment?
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.
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.
Monday, September 24, 2007
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.
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.
Monday, September 17, 2007
Dystonia: glimpse of a treatment model in the North East of England.
It is with great excitement I visited the North East of England in May this year (2007). My adult son Darren and my elder son’s wife, Jill, traveled with me. We have family living in Whitley Bay. This trip is definitely the most exciting to date. I would like to share my story with you.
Before leaving Oz I emailed ahead via the ADDER site. What an amazing response eventuated from that first contact! I met with Dr Ginge Butler and his wife Verona in the cafeteria at the amazing new Watergate Park Hospital in Newcastle. Over a cuppa we quickly found ourselves chatting about many of our mutual dystonic experiences, even identifying some of our differences surrounding treatment programs.
Following our initial meeting I am most fortunate to have then met Leslie the clinical nurse team leader of the Dystonia treatment clinic at the Watergate Park Hospital. This facility is amazing. The dedication of Leslie and her team to the treatment program for dystonic patients is most impressive. Learning about Leslie’s team of highly skilled nurses actually administering treatment is a surprise for me. This methodology of practice by clinical nurse practitioners must be of immense support to both patients and treating neurologists. Although the nurses give botulinum toxin injections for dystonic symptoms other than for spasmodic dysphonia, a doctor is always available. What amazes me most is the availability of very high quality treatment programs so close to where people live. This is perhaps the area of greatest difference between Australia and Britain.
Although Australia’s population is predominantly in the major cities, from where I live in Cairns, Far North Queensland, I travel a little over 1,600 kilometres to Brisbane for treatment then face the long trip home! Flying is a two and a half hour journey whilst driving is a two day trip each way. Guess what – I fly! One further amazing experience resulting from contact is meeting Professor Chinnery. What a lovely man he is.
Professor Chinnery is interested in my family history of dystonia. We have what we describe as the Venables’ voice because it is thought the ‘funny voice’ came from that part of the family. Spasmodic dysphonia? This well may be! Stories down the generations tell of tremors and strangely twisted necks, bodies and limbs. Some have referred to this as ‘the rheumatics’ or in latter years, ‘the Parkinson’s thing’. Need we be surprised? After all, upon reflection my 14 year path to diagnosis is paved with immense frustration. It is with confidence that I can say to fellow dystonics, you will know exactly what I mean. Yes, some things are intergenerational and truly universal!
It is my hope to meet many of my fellow dystonics when next in the U.K. - September 2008.
Sue Bayliss. Cairns, Australia.
Before leaving Oz I emailed ahead via the ADDER site. What an amazing response eventuated from that first contact! I met with Dr Ginge Butler and his wife Verona in the cafeteria at the amazing new Watergate Park Hospital in Newcastle. Over a cuppa we quickly found ourselves chatting about many of our mutual dystonic experiences, even identifying some of our differences surrounding treatment programs.
Following our initial meeting I am most fortunate to have then met Leslie the clinical nurse team leader of the Dystonia treatment clinic at the Watergate Park Hospital. This facility is amazing. The dedication of Leslie and her team to the treatment program for dystonic patients is most impressive. Learning about Leslie’s team of highly skilled nurses actually administering treatment is a surprise for me. This methodology of practice by clinical nurse practitioners must be of immense support to both patients and treating neurologists. Although the nurses give botulinum toxin injections for dystonic symptoms other than for spasmodic dysphonia, a doctor is always available. What amazes me most is the availability of very high quality treatment programs so close to where people live. This is perhaps the area of greatest difference between Australia and Britain.
Although Australia’s population is predominantly in the major cities, from where I live in Cairns, Far North Queensland, I travel a little over 1,600 kilometres to Brisbane for treatment then face the long trip home! Flying is a two and a half hour journey whilst driving is a two day trip each way. Guess what – I fly! One further amazing experience resulting from contact is meeting Professor Chinnery. What a lovely man he is.
Professor Chinnery is interested in my family history of dystonia. We have what we describe as the Venables’ voice because it is thought the ‘funny voice’ came from that part of the family. Spasmodic dysphonia? This well may be! Stories down the generations tell of tremors and strangely twisted necks, bodies and limbs. Some have referred to this as ‘the rheumatics’ or in latter years, ‘the Parkinson’s thing’. Need we be surprised? After all, upon reflection my 14 year path to diagnosis is paved with immense frustration. It is with confidence that I can say to fellow dystonics, you will know exactly what I mean. Yes, some things are intergenerational and truly universal!
It is my hope to meet many of my fellow dystonics when next in the U.K. - September 2008.
Sue Bayliss. Cairns, Australia.
Tuesday, July 3, 2007
Dystonia. Home sweet home.
Hello and a very warm welcome to you here on this site. I have now returned home from travelling around Britain. There is so much for me to write about in the coming weeks.
Recently I have received many emails from around the globe. Thank you all for sharing your lovely thoughts and also for caring. Through seeking information and greater understanding of our own medical condition it seems we become a family of like minded people. In this way we have formed our own little on-line support group.
Support from others who understand our individual challenges in life is very important to us all. We are able to collectivise our experience and so normalize our lifestyle. Just to know we are in each others thoughts is an empowering experience. We are spiritually or emotionally uplifted so feel empowered to move on through our day.
Thinking about empowerment, last week I attended the Dystonia Australia Patient Symposium in Sydney. What an experience this is. I refer to present tense because returning home feeling so connected to all in attendance removes the sense of geographical isolation resulting from living in such a large country. Our Dystonia Australia National Coordinator, Nicola Dawson, is an amazing young woman. Her dedication and commitment to people with dystonia enabled the conference to flow smoothly. Each presenter addressing the group with an incredible focus on their personal topics of professional interest. Congratulations to Nicola and all involved - including our dystonics, even some from New Zealand. We certainly gained from our travel from all around the ridges. Look out Kiwi Land - next year, here come the Aussies!
All that remains now is for me to get all these mind's eye images from brain to finger tips and blog away! So, until later in the week, a fond farewell.
Sue Bayliss. Cairns, Australia.
Recently I have received many emails from around the globe. Thank you all for sharing your lovely thoughts and also for caring. Through seeking information and greater understanding of our own medical condition it seems we become a family of like minded people. In this way we have formed our own little on-line support group.
Support from others who understand our individual challenges in life is very important to us all. We are able to collectivise our experience and so normalize our lifestyle. Just to know we are in each others thoughts is an empowering experience. We are spiritually or emotionally uplifted so feel empowered to move on through our day.
Thinking about empowerment, last week I attended the Dystonia Australia Patient Symposium in Sydney. What an experience this is. I refer to present tense because returning home feeling so connected to all in attendance removes the sense of geographical isolation resulting from living in such a large country. Our Dystonia Australia National Coordinator, Nicola Dawson, is an amazing young woman. Her dedication and commitment to people with dystonia enabled the conference to flow smoothly. Each presenter addressing the group with an incredible focus on their personal topics of professional interest. Congratulations to Nicola and all involved - including our dystonics, even some from New Zealand. We certainly gained from our travel from all around the ridges. Look out Kiwi Land - next year, here come the Aussies!
All that remains now is for me to get all these mind's eye images from brain to finger tips and blog away! So, until later in the week, a fond farewell.
Sue Bayliss. Cairns, Australia.
Wednesday, May 2, 2007
Dystonia and dysphagia: that breath catching, coughing, spluttering, drowning thing!
Dystonia affects many parts of the body. It is a little known neurological movement disorder. Although chronic and non-life threatening, dystonia remains incurable at this time. Spasming vocal cord muscles is one form of dystonia called laryngeal dystonia, spasmodic dysphonia or spastic dysphonia. Another common form of dystonia is cervical dystonia, more commonly known as spasmodic torticollis. Most people favor botulinum toxin (botox) injections into affected muscles to treat dystonic symptoms. This treatment is used to soften the tell tale muscular spasms pulling muscles in different directions thus causing painfully twisted bodily shape. However, one of the nasty side effects of treatment for some types of dystonia is dysphagia, the inability to swallow safely.
Dysphagia symptoms may be monitored by speech pathologists. In some instances, modifying diet and thickening fluids provides good management of dysphagia. There are various types of drink thickener available for managing fluids. Pre-packaged thickened drinks (on this link scroll down pp 42-47 of 52) may offer some people a variety and change from daily routine of thickening all fluids.
Always seek professional opinion from your treating specialist who may refer you to an appropriate speech pathologist for follow up care and monitoring of your dysphagia. Some people who experience dysphagia as a complication following treatment find the symptoms are temporary and easily managed by learning what is referred to as a chin tuck when drinking. Your treating speech pathologist will be able to offer professional opinion on whether this method is appropriate for you. There are other aids that may also be useful for managing dysphagia, especially for those who have an underlying dysphagia condition that does not ease soon after treatment.
Cups designed for people with dysphagia may be recommended for you by your speech pathologist. One way drinking straws are a useful dysphagia aid for people of all ages. Again, your speech pathologist is the person to speak to about your personal needs in relation to using one of these especially designed drinking straws.
One-way drinking straws have a one-way valve allowing the straw to stay filled with fluid. Removal of the straw from the mouth or lips does not alter the level of fluid remaining in the straw. Inability to swallow safely while drinking may be harmful for people with dysphagia. This risk may be lessened or eliminated when using a one-way drinking straw. There are several options for purchasing one-way drinking straws. The highlighted words above link you to good examples of dysphagia aids.
If you would like to comment on what has or has not worked for you, please consider leaving your thoughts here so others may also learn from your experience. Personally, I use all the above mentioned aids to manage my chronic dysphagia which is always worse following treatment.
Sue Bayliss. Cairns, Australia.
Dysphagia symptoms may be monitored by speech pathologists. In some instances, modifying diet and thickening fluids provides good management of dysphagia. There are various types of drink thickener available for managing fluids. Pre-packaged thickened drinks (on this link scroll down pp 42-47 of 52) may offer some people a variety and change from daily routine of thickening all fluids.
Always seek professional opinion from your treating specialist who may refer you to an appropriate speech pathologist for follow up care and monitoring of your dysphagia. Some people who experience dysphagia as a complication following treatment find the symptoms are temporary and easily managed by learning what is referred to as a chin tuck when drinking. Your treating speech pathologist will be able to offer professional opinion on whether this method is appropriate for you. There are other aids that may also be useful for managing dysphagia, especially for those who have an underlying dysphagia condition that does not ease soon after treatment.
Cups designed for people with dysphagia may be recommended for you by your speech pathologist. One way drinking straws are a useful dysphagia aid for people of all ages. Again, your speech pathologist is the person to speak to about your personal needs in relation to using one of these especially designed drinking straws.
One-way drinking straws have a one-way valve allowing the straw to stay filled with fluid. Removal of the straw from the mouth or lips does not alter the level of fluid remaining in the straw. Inability to swallow safely while drinking may be harmful for people with dysphagia. This risk may be lessened or eliminated when using a one-way drinking straw. There are several options for purchasing one-way drinking straws. The highlighted words above link you to good examples of dysphagia aids.
If you would like to comment on what has or has not worked for you, please consider leaving your thoughts here so others may also learn from your experience. Personally, I use all the above mentioned aids to manage my chronic dysphagia which is always worse following treatment.
Sue Bayliss. Cairns, Australia.
Monday, April 30, 2007
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.
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.
Wednesday, April 25, 2007
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)
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)
Sunday, April 22, 2007
Dystonia: identifying and acknowledging our limitations
Striving to reach our greatest personal, social, academic and or professional potential is encouraged in Westernized societies. Individual success is a highly rated family and community value. Collectivist family values are in contrast to the above. The latter social and family system provides a network where every person’s identity and value is for the common good of all. The former system requires a far greater sense of self responsibility to successfully maintain our personal well being. Therefore, in our individualist family value society, people coping with a chronic illness of any kind are expected to identify, understand and be responsible for personal health status and act accordingly.
Personal responsibility for our health includes knowing and understanding limitations of self in daily life. This may include acknowledging and feeling our anxiety, fear, anger and grief. Success of this largely depends on our image or sense of self within our Westernized community structure.
The sense of our individualized self within the symbolic interaction between ourselves and our world around us may lead us into a realm of exaggerated self expectation. We tend to ignore or at the very least, easily overlook our personal limitations on a day to day basis. As individuals, we may become unreasonable with ourselves when not meeting our mind’s eye image of what we ought to be able to accomplish. Whilst all to frequently forgetting it is okay to make mistakes, there is no requirement for us to meet unreasonable self expectations. It is okay to go easy on ourselves, especially when experiencing pain or discomfort on a regular basis. We can learn and apply skills of self care and management of chronic medical conditions through a change of lifestyle and personal commitments.
For people living with dystonia in its many forms, life can become unbalanced between what we feel comfortable with in daily routine and our perception of what others expect of us. It is so important for us to identify our limitations, live within our capabilities and seek out the companionship of others experiencing the same kind of challenges.
My next article will focus on Dystonia: collectivising our experiences. Please leave a comment or e-mail me if you have something you would like to say.
Sue Bayliss. Cairns, Australia. s.j.bayliss@bigpond.com.au
Personal responsibility for our health includes knowing and understanding limitations of self in daily life. This may include acknowledging and feeling our anxiety, fear, anger and grief. Success of this largely depends on our image or sense of self within our Westernized community structure.
The sense of our individualized self within the symbolic interaction between ourselves and our world around us may lead us into a realm of exaggerated self expectation. We tend to ignore or at the very least, easily overlook our personal limitations on a day to day basis. As individuals, we may become unreasonable with ourselves when not meeting our mind’s eye image of what we ought to be able to accomplish. Whilst all to frequently forgetting it is okay to make mistakes, there is no requirement for us to meet unreasonable self expectations. It is okay to go easy on ourselves, especially when experiencing pain or discomfort on a regular basis. We can learn and apply skills of self care and management of chronic medical conditions through a change of lifestyle and personal commitments.
For people living with dystonia in its many forms, life can become unbalanced between what we feel comfortable with in daily routine and our perception of what others expect of us. It is so important for us to identify our limitations, live within our capabilities and seek out the companionship of others experiencing the same kind of challenges.
My next article will focus on Dystonia: collectivising our experiences. Please leave a comment or e-mail me if you have something you would like to say.
Sue Bayliss. Cairns, Australia. s.j.bayliss@bigpond.com.au
Friday, April 20, 2007
Dystonia: revisiting grieving and symbolic loss
Symbolic loss is how we describe feelings reflecting the loss of what we previously expected our life, health or relationships to be at any particular point in time. This is in a sense different to the intense feelings of loss associated with the death of a loved one. Although there is also a huge element of symbolic loss accompanying bereavement of loved ones, people coping on a daily basis with the symptoms of dystonia live with their mind's eye image of what they had hoped their life to be. Following diagnosis of a non-life threatening yet incurable neurological disease comes the inevitable cycle of coming to terms with how life will be from that time on. There are recognized stages of grief regardless of whether or not we are grieving the actual loss of physical ability and health, bereavement, or any kind of symbolic loss like changes to what our hopes and dreams had meant for us.
Five common elements in the stages of grief identified and named by well respected Elizabeth Kubler-Ross are denial, anger, bargaining, depression, and acceptance. In relation to dystonia, we may think of these stages as follows.
Denial – Initial sense of numbness when we say things like “I could be knocked over by a feather! This can’t really be happening, can it? It must be a mistake."
Anger – We may say things like “how dare this happen to me!" Blaming God, a loved one or some previous situation.
Bargaining – Believing we may influence a change in what has happened in our life by trading things like "There is no way I will be intolerant of others again if only I can be healed of dystonia.”
Depression – When ‘stinking thinking’ takes a hold in our mind and we just can not see any sense in doing anything or seeing anyone.
Acceptance – Well now. Life goes on so I had better get on with mine!
The above mentioned stages do not necessarily occur in the order described here. Each stage may mean very different things to different people. Some people may experience all of these identified stages, others may experience only two or three.
The grief experience may also be described as feelings of shock, anxiety, guilt and loneliness. The physical component of grief may have the effect upon us of a disturbed sleep pattern quite at odds with our normal routine. We may feel nauseous, lethargic, and unable to eat or enjoy food. When affected by these experiences we gradually become aware of how we need to make lifestyle changes, accepting that our life may never be quite the same again. We may look at how we have dealt with changes previously, how we can learn from those past experiences and what we need to do to adapt our lifestyle now.
Hopefully, the above links will lead you on a path of personal growth. Achieving a greater understanding about how to recognize and cope with feelings, pain and social isolation, associated with dystonia empowers us to accept our situation and collectivize our experiences through contact with others. This link will lead you to local, national and international, support groups.
Sue Bayliss. Cairns, Australia.
Five common elements in the stages of grief identified and named by well respected Elizabeth Kubler-Ross are denial, anger, bargaining, depression, and acceptance. In relation to dystonia, we may think of these stages as follows.
Denial – Initial sense of numbness when we say things like “I could be knocked over by a feather! This can’t really be happening, can it? It must be a mistake."
Anger – We may say things like “how dare this happen to me!" Blaming God, a loved one or some previous situation.
Bargaining – Believing we may influence a change in what has happened in our life by trading things like "There is no way I will be intolerant of others again if only I can be healed of dystonia.”
Depression – When ‘stinking thinking’ takes a hold in our mind and we just can not see any sense in doing anything or seeing anyone.
Acceptance – Well now. Life goes on so I had better get on with mine!
The above mentioned stages do not necessarily occur in the order described here. Each stage may mean very different things to different people. Some people may experience all of these identified stages, others may experience only two or three.
The grief experience may also be described as feelings of shock, anxiety, guilt and loneliness. The physical component of grief may have the effect upon us of a disturbed sleep pattern quite at odds with our normal routine. We may feel nauseous, lethargic, and unable to eat or enjoy food. When affected by these experiences we gradually become aware of how we need to make lifestyle changes, accepting that our life may never be quite the same again. We may look at how we have dealt with changes previously, how we can learn from those past experiences and what we need to do to adapt our lifestyle now.
Hopefully, the above links will lead you on a path of personal growth. Achieving a greater understanding about how to recognize and cope with feelings, pain and social isolation, associated with dystonia empowers us to accept our situation and collectivize our experiences through contact with others. This link will lead you to local, national and international, support groups.
Sue Bayliss. Cairns, Australia.
Sunday, April 15, 2007
Dystonia: retaining a positive outlook.
Dealing positively with disabling forces of dystonia is possible by the person affected consciously acknowledging their personal set of circumstances. Acknowledging the presence of a chronic but incurable medical condition encourages each person to plan their strategies enabling resolution of the problem situations experienced in day to day living. Taking ownership of the problem situation and planning strategies to cope empowers us all to take action resulting in a positive, satisfactory outcome.
Taking action requires a decision making process. Making positive decisions leads us away from a negative image of reacting to symptoms of a disabling chronic disease. This reframing of our self perception is encouraged from within our very soul. By taking hold of that inner force and putting it into practice we are empowered by positive coping mechanisms of our choice.
Two very simple examples are firstly, a person with spasmodic dysphonia carrying a small card stating name, medical condition (spasmodic dysphonia) and a statement such as, “I know what I want to say, please be patient with me.” Secondly, someone with cervical dystonia may decide to regularly seek physiotherapy or remedial massage in addition to receiving regular medical intervention of botulinum toxin injections given by the treating neurologist.
The above examples indicate recognition and acceptance of a medical condition and developing a “love your disease” attitude to the presenting symptoms. This is one positive way to cope with or ‘deal with’ the symptoms of dystonia.
Every day is a new day! Coping with the symptoms of dystonia means that every day we have a choice about our attitude and our decisions. It does not have to be the same as yesterday or at any past point in time.
Brief suggestions for reframing negative perceptions, to positively engaging coping mechanisms, are as follows.
1. Coping in life with whatever is presented to us by recognising and stopping negative thoughts, embracing each situation positively and, taking action based upon the decisions of our choice.
2. Make a list of positive reminders identifying a choice of actions. Place these in strategic points around the house, office or wherever we will be.
3. Identify a set of goals for a day at a time, checking off each goal as it is achieved, thus reinforcing our newly formed positive attitude.
Tomorrow I will write about Dystonia: grieving symbolic loss. If you would like to leave a comment you are most welcome to do so.
Sue Bayliss. Cairns, Australia.
Taking action requires a decision making process. Making positive decisions leads us away from a negative image of reacting to symptoms of a disabling chronic disease. This reframing of our self perception is encouraged from within our very soul. By taking hold of that inner force and putting it into practice we are empowered by positive coping mechanisms of our choice.
Two very simple examples are firstly, a person with spasmodic dysphonia carrying a small card stating name, medical condition (spasmodic dysphonia) and a statement such as, “I know what I want to say, please be patient with me.” Secondly, someone with cervical dystonia may decide to regularly seek physiotherapy or remedial massage in addition to receiving regular medical intervention of botulinum toxin injections given by the treating neurologist.
The above examples indicate recognition and acceptance of a medical condition and developing a “love your disease” attitude to the presenting symptoms. This is one positive way to cope with or ‘deal with’ the symptoms of dystonia.
Every day is a new day! Coping with the symptoms of dystonia means that every day we have a choice about our attitude and our decisions. It does not have to be the same as yesterday or at any past point in time.
Brief suggestions for reframing negative perceptions, to positively engaging coping mechanisms, are as follows.
1. Coping in life with whatever is presented to us by recognising and stopping negative thoughts, embracing each situation positively and, taking action based upon the decisions of our choice.
2. Make a list of positive reminders identifying a choice of actions. Place these in strategic points around the house, office or wherever we will be.
3. Identify a set of goals for a day at a time, checking off each goal as it is achieved, thus reinforcing our newly formed positive attitude.
Tomorrow I will write about Dystonia: grieving symbolic loss. If you would like to leave a comment you are most welcome to do so.
Sue Bayliss. Cairns, Australia.
Saturday, April 14, 2007
Dystonia: do we live with it or cope with it?
Is there a difference? In a theoretical sense, indeed there is!
Dystonia is a neurological movement disorder causing involuntary spasming and contracting of muscles. These muscular contractions in a person’s body have the affect of being twisted into an abnormal posture. There are basically two choices for sufferers to make. We can live with whatever happens on a day to day basis or we can deal with the symptoms by coping with them in a managed, structured way.
Firstly, living with someone or something means reacting to being in the presence of others or with something having an influence upon us, within us, around us, at that time. This may also be explained as an ebb and flow effect within a given dimension of time, space and culture. Secondly, coping with something means acknowledging the presence of whatever it is without denying personal affect that the form, other people or subjective experience of whatever it is, has upon us. The latter explanation means experiencing or dealing with someone or something, accepting what is happening and making a conscious decision to act in response to the given situation.
In relation to dystonia, the first step to coping means acknowledging that our neurological condition cannot be cured by medical intervention at this point in time. Accepting this reality leads to a greater interest in learning more about dystonia, the range of treatment options and understanding how to deal with what is happening in our life at any particular time.
Following on from this brief article, I will write a series of short articles about the following topics:
Dystonia: retaining a positive outlook.
Dystonia: grieving symbolic loss.
Dystonia: identifying and acknowledging limitations.
Dystonia: collectivizing our experiences.
If you would like to know more, please follow the highlighted links above. Alternatively, leave a comment to this article or email me. I will get back to you (s.j.bayliss@bigpond.com.au).
Wednesday, April 11, 2007
Psst mate, get a load of this. Good as any post card, 'ay!
The Dystonia Support Group of Cairns.
Have you been diagnosed with dystonia?
Do you know anyone with dystonia?
Would you like to speak to someone who has dystonia?
Think you may have dystonia?
Interested in learning more about the many forms of dystonia?
The Dystonia Support Group of Cairns is meeting on Saturday April 21st in Atherton (sandwiches, tea & coffee, cold drink provided - just let us know you will be there).
You are welcome to join us at 11 o'clock in room 12 at the Atherton Community Centre in the old primary school, Mable Street, Atherton. Easy to find, opposite the Atherton Shire Council. Look for the green and gold balloons.
If you live in or near Cairns and would like transport to the meeting in Atherton, email me so we are able to arrange a lift for you.
If you live far, far away but would like to put forward a question or comment, we would love to hear from you (s.j.bayliss@bigpond.com.au).
(There are 10 informative links above, exclusing the email address, and two below. I hope they are helpful.)
Sue Bayliss. Cairns, Australia.
Saturday, April 7, 2007
What is it like, living with dystonia?
Have you ever thought twice about telephoning someone you know who has difficulty speaking? Perhaps you know the feeling of impatience when someone is clumsy and slow? Do you know what to say or do when your loved one’s hands, body, neck or head are twisted into abnormal positions? What is it like for you when out for coffee with someone who suddenly regurgitates their drink through nose and mouth whilst coughing and gasping? How do you look at someone whose eye or eyes slam shut, unable to open voluntarily? Do you understand what it is like to live with dystonia?
So many questions! However, there are also answers. We just need to know how to find them. Some people say how difficult it is to understand a person with spasmodic dysphonia (SD) on the telephone. For those of us with SD, hearing the recorded playback of what our voice was like prior to receiving treatment can send little shivers of embarrassment all over us. No wonder we never liked using the telephone. It is not surprising so many people hesitated contacting us by telephone! TTY phones (Teletypewriters) are available for people who are deaf, hearing impaired and also speech impaired. This method of communication is good both before and after treatment.
Following treatment the situation does not necessarily improve. Botox injections into vocal cord muscle leave many people with very soft voice, sometimes for a few weeks or even months. Quality speech pathology intervention assists people overcoming difficult voice situations. Learning sign language offers communication for people who are deaf and for those with speech and hearing impairment too. Once we start signing others soon learn basic signs, getting the gist of what we are saying.
Although signing may be clumsy or slow, people with cervical dystonia or any form of dystonia may become clumsy or slow in their body movements. Spasming muscles create discomfort and pain as well as embarrassment for the person experiencing this. Dystonia invades almost every aspect of a person’s life.
Learning to live with dystonia may mean life changing adjustments. Going through the diagnostic process for dystonia in all its forms is challenging. Then, settling into a dramatically changed lifestyle is not easy for most people. Living with disfigurement, discomfort, pain, and the potential for social isolation, dystonia sufferers soon expose others to our determination and the creative strength of our soul.
If you or someone you know has dystonia, I hope this article is helpful. Links in the latter paragraphs are there to emphasise the broad range of symptoms associated with dystonia. Please, consider leaving a comment (this can be anonymous) or contact me by email (s.j.bayliss@bigpond.com.au) if you would like to say what living with dystonia is like for you or your loved one.
Sue Bayliss. Cairns, Australia.
So many questions! However, there are also answers. We just need to know how to find them. Some people say how difficult it is to understand a person with spasmodic dysphonia (SD) on the telephone. For those of us with SD, hearing the recorded playback of what our voice was like prior to receiving treatment can send little shivers of embarrassment all over us. No wonder we never liked using the telephone. It is not surprising so many people hesitated contacting us by telephone! TTY phones (Teletypewriters) are available for people who are deaf, hearing impaired and also speech impaired. This method of communication is good both before and after treatment.
Following treatment the situation does not necessarily improve. Botox injections into vocal cord muscle leave many people with very soft voice, sometimes for a few weeks or even months. Quality speech pathology intervention assists people overcoming difficult voice situations. Learning sign language offers communication for people who are deaf and for those with speech and hearing impairment too. Once we start signing others soon learn basic signs, getting the gist of what we are saying.
Although signing may be clumsy or slow, people with cervical dystonia or any form of dystonia may become clumsy or slow in their body movements. Spasming muscles create discomfort and pain as well as embarrassment for the person experiencing this. Dystonia invades almost every aspect of a person’s life.
Learning to live with dystonia may mean life changing adjustments. Going through the diagnostic process for dystonia in all its forms is challenging. Then, settling into a dramatically changed lifestyle is not easy for most people. Living with disfigurement, discomfort, pain, and the potential for social isolation, dystonia sufferers soon expose others to our determination and the creative strength of our soul.
If you or someone you know has dystonia, I hope this article is helpful. Links in the latter paragraphs are there to emphasise the broad range of symptoms associated with dystonia. Please, consider leaving a comment (this can be anonymous) or contact me by email (s.j.bayliss@bigpond.com.au) if you would like to say what living with dystonia is like for you or your loved one.
Sue Bayliss. Cairns, Australia.
Thursday, March 29, 2007
Mummy, why is that lady doing the hokey pokey in the shopping centre?
Hokey pokey? Oh how I wish it was, little one!
That dreadful tremor suddenly appears as my hands go out to take hold of something. Usually, it is so good to sample whatever the sales promotion people are handing out. However, holding onto the little paper cup of juice and a delicate canapé at the same time can be very tricky when thinking, “Not now! Oh please, not right now!” Sure as God made those little green apples, the wobbles start! Right there in the supermarket isle. Slop goes the juice over hand and floor. Crumble, crumble goes the little toast thingy. Bits of whatever that was on the top now beneath someone’s foot as they struggle not to slip. Embarrassed? Uh ha, uh ha! Big time, mate!
Oh well, nobody ever died of embarrassment now, did they? Quickly regaining composure can be a little difficult when brain function, head, hands and carry bag just do not seem to connect in the correct sequence. When experiencing tremors, most people have little or no control over movement. In fact, many parts of our body may be affected by tremor.
There is no particular rule of emergence associated with the onset of tremor. The tremor may show its horrid little jack-in-the-box type appearance at any age! Sometimes it kind of sneaks its way into our movements, progressively developing in strength and frequency. For others, tremor may demand quite an aggressive introduction to our state of being. There is one thing tremors have in common. That is, intensifying during times of additional stress, nervousness and or illness.
It is something going wrong within our brain that triggers most tremors. The most common tremor is essential tremor. This form tends to appear when doing task focused things like writing, eating or using our hands in some other way. Tremor may be intergenerational within some families. Sometimes, tremor results from taking specific medications. Mental illness or emotional distress may contribute to tremor in some people. Tremor may also be associated with some of the following medical conditions.
Parkinson’s disease.
Dystonia.
Thyroid problems.
Multiple sclerosis.
Wilson’s disease.
Liver failure.
Brain injury.
If you have developed a tremor not yet diagnosed by your family doctor, specialist physician or some other health professional, seek a medical opinion now. Some tremors do not need specific treatment. Your doctor needs to be informed about tremor commencing if you are already on medication for another medical condition. Medication may need changing or dosage altered.
I hope you have found this article informative and helpful. Leave a comment if you would like to or email me at s.j.bayliss@bigpond.com.au.
Sue Bayliss. Cairns, Australia.
That dreadful tremor suddenly appears as my hands go out to take hold of something. Usually, it is so good to sample whatever the sales promotion people are handing out. However, holding onto the little paper cup of juice and a delicate canapé at the same time can be very tricky when thinking, “Not now! Oh please, not right now!” Sure as God made those little green apples, the wobbles start! Right there in the supermarket isle. Slop goes the juice over hand and floor. Crumble, crumble goes the little toast thingy. Bits of whatever that was on the top now beneath someone’s foot as they struggle not to slip. Embarrassed? Uh ha, uh ha! Big time, mate!
Oh well, nobody ever died of embarrassment now, did they? Quickly regaining composure can be a little difficult when brain function, head, hands and carry bag just do not seem to connect in the correct sequence. When experiencing tremors, most people have little or no control over movement. In fact, many parts of our body may be affected by tremor.
There is no particular rule of emergence associated with the onset of tremor. The tremor may show its horrid little jack-in-the-box type appearance at any age! Sometimes it kind of sneaks its way into our movements, progressively developing in strength and frequency. For others, tremor may demand quite an aggressive introduction to our state of being. There is one thing tremors have in common. That is, intensifying during times of additional stress, nervousness and or illness.
It is something going wrong within our brain that triggers most tremors. The most common tremor is essential tremor. This form tends to appear when doing task focused things like writing, eating or using our hands in some other way. Tremor may be intergenerational within some families. Sometimes, tremor results from taking specific medications. Mental illness or emotional distress may contribute to tremor in some people. Tremor may also be associated with some of the following medical conditions.
Parkinson’s disease.
Dystonia.
Thyroid problems.
Multiple sclerosis.
Wilson’s disease.
Liver failure.
Brain injury.
If you have developed a tremor not yet diagnosed by your family doctor, specialist physician or some other health professional, seek a medical opinion now. Some tremors do not need specific treatment. Your doctor needs to be informed about tremor commencing if you are already on medication for another medical condition. Medication may need changing or dosage altered.
I hope you have found this article informative and helpful. Leave a comment if you would like to or email me at s.j.bayliss@bigpond.com.au.
Sue Bayliss. Cairns, Australia.
Sunday, March 25, 2007
Dystonia by any other name is still a twisting, strangling, socially isolating pain!
Two of the more uncommon types of dystonias are known as firstly, X-linked dystonia-parkinsonism, otherwise referred to as Lubag dystonia. Secondly, Rapid-onset dystonia-parkinsonism, commonly referred to as RDP. Dystonia does not only affect the person diagnosed. Family, carers and friends also share in the pains, sorrows and joys, experienced by those suffering from the many forms of dystonia, a neurological disorder or group of movement disorders for which there is presently no cure. I am writing briefly today about the two above mentioned forms of dystonia and also where to look for support close to you, wherever you may be.
Firstly, X-linked dystonia-parkinsonism or Lubag, refers to a form of dystonia that seems almost exclusively to affect men whose place of origin is Panay, an island in Indonesia. Although men are predominantly affected, it has been established that their women folk are the carriers of the gene, Xq13.
Lubag dystonia usually presents as a focal dystonia meaning it affects one part of the body. The dystonia then progresses to generalized dystonia affecting many parts of the body before parkinsonian features eventually appear in the majority of cases. Lubag dystonia is different to Rapid-onset dystonia-parkinsonism commonly known as RDP.
Secondly, RDP is recognized as an autosomal dominant movement disorder or dystonia. This means there is a chromosome identified as 19q13 linking people with this form of dystonia.
These people seem to be affected initially by bradykinesia which is slowness of movement common to Parkinsonism including poor balance. However, there is the additional evidence of involuntary dystonic spasms in limbs, voice (spasmodic dysphonia) and swallow (dysphagia).
RDP symptoms may appear quite suddenly over several hours or sometimes, days. The age range for onset of this type of dystonia seems to be from approximately 15 years to 45 years of age.
If you or someone in your family is affected by any form of dystonia, you need not feel alone. Dystonia Australia lists many support group sites and contacts around the world. Please, take time to look at these by scrolling all the way down the support groups page and follow up by contacting someone close to you. There is a lot of information around if we know where to look for it.
If you would like to say something about dystonia, please leave a comment. Alternatively, you may prefer to contact me at s.j.bayliss@bigpond.com.au. I will get back to you.
Sue Bayliss. Cairns, Australia.
Firstly, X-linked dystonia-parkinsonism or Lubag, refers to a form of dystonia that seems almost exclusively to affect men whose place of origin is Panay, an island in Indonesia. Although men are predominantly affected, it has been established that their women folk are the carriers of the gene, Xq13.
Lubag dystonia usually presents as a focal dystonia meaning it affects one part of the body. The dystonia then progresses to generalized dystonia affecting many parts of the body before parkinsonian features eventually appear in the majority of cases. Lubag dystonia is different to Rapid-onset dystonia-parkinsonism commonly known as RDP.
Secondly, RDP is recognized as an autosomal dominant movement disorder or dystonia. This means there is a chromosome identified as 19q13 linking people with this form of dystonia.
These people seem to be affected initially by bradykinesia which is slowness of movement common to Parkinsonism including poor balance. However, there is the additional evidence of involuntary dystonic spasms in limbs, voice (spasmodic dysphonia) and swallow (dysphagia).
RDP symptoms may appear quite suddenly over several hours or sometimes, days. The age range for onset of this type of dystonia seems to be from approximately 15 years to 45 years of age.
If you or someone in your family is affected by any form of dystonia, you need not feel alone. Dystonia Australia lists many support group sites and contacts around the world. Please, take time to look at these by scrolling all the way down the support groups page and follow up by contacting someone close to you. There is a lot of information around if we know where to look for it.
If you would like to say something about dystonia, please leave a comment. Alternatively, you may prefer to contact me at s.j.bayliss@bigpond.com.au. I will get back to you.
Sue Bayliss. Cairns, Australia.
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