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 dysphagia. Show all posts
Showing posts with label dysphagia. 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.
Friday, January 25, 2008
Awareness and education about movement disorders:
Are you a health professional looking for continuing professional education activity and networking opportunity in Far North Queensland (FNQ)?
The Atherton Tableland and Cairns Dystonia Support Group invite you to attend a Movement Disorders Symposium offering the opportunity for education and networking.
Ms Karen O'Maley. R.N., C.N.C.. Department of Neurology, The Royal Brisbane and Women's Hospital. Brisbane
Ms. Maree Brockey. Multiple Sclerosis Society of Queensland - Brisbane.
Ms Gail Rogers. Cairns Speech Pathology Clinic.
Ms Suzanne Bayliss. Atherton Tableland and Cairns Dystonia Support Group.
In addition to the above speakers, additional professional people are available on a discussion panel.
Further speakers will be advertised as they confirm attendance.
For your information and interest, specific goals for the event are:
a. to present the opportunity for the medical / health professional community in FNQ to increase their knowledge from specialists regarding movement disorders,
b. to communicate with the medical / health professional community in FNQ educational and promotional material specific to movement disorders,
c. to establish a network of medical / health professionals in FNQ interested in movement disorders,
d. to establish a Movement Disorders network / support group in FNQ,
e. to increase support from the community by raising awareness of movement disorders,
f. to increase resources for individuals to access,
· timely referrals
· specialist assessments
· management services
· appropriate equipment and support.
For further information please telephone:
Atherton Tableland: Maureen Slocum. (07) 4091 7137.
Cairns: Sue Bayliss. (07) 4032 4033 or 04076 24578.
If you are a person with a diagnosed neurological movement disorder and would like to know more about this event or about our support group please contact me.
Sue Bayliss. Cairns, Australia.
The Atherton Tableland and Cairns Dystonia Support Group invite you to attend a Movement Disorders Symposium offering the opportunity for education and networking.
The symposium is on Wednesday evening April 16th 2008 at The Colonial Club Conference Centre, Lockhart Room and Lockhart verandah, Behan Street entrance, Cairns.
This exciting event brings together an expert panel of speakers discussing a range of movement disorders including,
. options for referral and treatment,
. recent research outcomes in Australia, Britain and the United States of America and,
. bio-psycho-social effects of movement disorders on patients in FNQ.
The Symposium commences at 6.30 P.M. for registration, pre-dinner drinks, canapés and trade displays on the Lockhart Verandah. At 7 P.M. we move through to the dining room for dinner, our guest speakers’ presentations and panel discussion.
It is with great pleasure we are able to provide this evening free of charge to our medical community thanks to very generous educational grants by Allergan Australia and Ipsen Pty Ltd.
The above mentioned educational grants enable our local health professionals to continue their professional education in the areas of neurological movement disorders.
Principal speaker:
Dr John O'Sullivan. Department of Neurology, The Royal Brisbane and Women's Hospital. Brisbane
The following speakers are also confirmed:Ms Karen O'Maley. R.N., C.N.C.. Department of Neurology, The Royal Brisbane and Women's Hospital. Brisbane
Ms. Maree Brockey. Multiple Sclerosis Society of Queensland - Brisbane.
Ms Gail Rogers. Cairns Speech Pathology Clinic.
Ms Suzanne Bayliss. Atherton Tableland and Cairns Dystonia Support Group.
In addition to the above speakers, additional professional people are available on a discussion panel.
Further speakers will be advertised as they confirm attendance.
For your information and interest, specific goals for the event are:
a. to present the opportunity for the medical / health professional community in FNQ to increase their knowledge from specialists regarding movement disorders,
b. to communicate with the medical / health professional community in FNQ educational and promotional material specific to movement disorders,
c. to establish a network of medical / health professionals in FNQ interested in movement disorders,
d. to establish a Movement Disorders network / support group in FNQ,
e. to increase support from the community by raising awareness of movement disorders,
f. to increase resources for individuals to access,
· timely referrals
· specialist assessments
· management services
· appropriate equipment and support.
For further information please telephone:
Atherton Tableland: Maureen Slocum. (07) 4091 7137.
Cairns: Sue Bayliss. (07) 4032 4033 or 04076 24578.
If you are a person with a diagnosed neurological movement disorder and would like to know more about this event or about our support group please contact me.
Sue Bayliss. Cairns, Australia.
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.
Tuesday, November 27, 2007
For goodness sake, talk properly. You can't go on speaking like that. It is embarrassing!
"No, no! It is never my choice"
she said in her funny voice,
"‘tis spasmodic dysphonia
and maybe pneumonia"
as she gagged on her swallow of ice.
Do you have a funny voice and or difficulty swallowing? Do you know anyone who has? Speech impairment due to spasmodic dysphonia creates a flow on effect of communication difficulty that would be hard to understand unless experienced personally. The good news is, there is a lot of support if you know where to seek it!
Take some time to browse through this site. You will find many articles linking to other informative sites and supportive organisations around the world. If you prefer, leave a comment or email me on s.j.bayliss@bigpond.com.au and I will get back to you.
Sue Bayliss. Cairns, Australia.
Saturday, November 24, 2007
Dystonia treatment: a multidiscipline team approach.
The multidiscipline team is a group of professional people from diverse disciplines treating a specific patient through a coordinated approach by the patient’s case manager, possibly the family doctor. Multidiscipline teams provide a comprehensive consultation and treatment plan based upon the holistic assessment of a patient’s needs.
For example, botulinum toxin (botox) therapy is enhanced by using supplementary strategies of intervention. Physiotherapy, remedial massage therapy, speech pathology, occupational therapy, dietitian etcetera, is all recognized as beneficial in extending the benefits of botox and maximizing patient wellbeing.
The opportunity for attending botox clinic appointments with a treating neurologist for injections varies for different people. Some people live within a reasonable distance of the clinic enabling them to easily access other services at that location. Many people live a long way from their treatment centre thus needing to travel considerable distances. For these people there is not enough time for allied health consultation or intervention by a multidiscipline team. It is neither reasonable nor beneficial for the patient to undergo further consultation, assessment and treatment, at the time of visiting the neurologist’s botox clinic. Therefore, referral by the family doctor to local allied health practitioners according to the patient’s need is important.
My own treatment plan includes regular intervention by a speech pathologist, physiotherapist and dietitian. Ongoing speech therapy, including intervention for dysphagia, optimizes the benefits of receiving botox injections into my vocal cords and also into my neck and shoulder muscles. Fortunately, all members of my treatment team including family doctor and neurologist work very much from within a holistic framework of practice focusing on the patient’s/client’s assessed needs.
Regular intervention by members of the multidiscipline team ensures a maximal, holistic approach to the treatment plan for a person with one or more of the many forms of dystonia.
Highlighted links including the two below provide further information and examples of interest. I hope you find them informative and enjoyable. Thank you for visiting this site. Please, come back soon. You are very welcome.
Sue Bayliss. Cairns, Australia.
For example, botulinum toxin (botox) therapy is enhanced by using supplementary strategies of intervention. Physiotherapy, remedial massage therapy, speech pathology, occupational therapy, dietitian etcetera, is all recognized as beneficial in extending the benefits of botox and maximizing patient wellbeing.
The opportunity for attending botox clinic appointments with a treating neurologist for injections varies for different people. Some people live within a reasonable distance of the clinic enabling them to easily access other services at that location. Many people live a long way from their treatment centre thus needing to travel considerable distances. For these people there is not enough time for allied health consultation or intervention by a multidiscipline team. It is neither reasonable nor beneficial for the patient to undergo further consultation, assessment and treatment, at the time of visiting the neurologist’s botox clinic. Therefore, referral by the family doctor to local allied health practitioners according to the patient’s need is important.
My own treatment plan includes regular intervention by a speech pathologist, physiotherapist and dietitian. Ongoing speech therapy, including intervention for dysphagia, optimizes the benefits of receiving botox injections into my vocal cords and also into my neck and shoulder muscles. Fortunately, all members of my treatment team including family doctor and neurologist work very much from within a holistic framework of practice focusing on the patient’s/client’s assessed needs.
Regular intervention by members of the multidiscipline team ensures a maximal, holistic approach to the treatment plan for a person with one or more of the many forms of dystonia.
Highlighted links including the two below provide further information and examples of interest. I hope you find them informative and enjoyable. Thank you for visiting this site. Please, come back soon. You are very welcome.
Sue Bayliss. Cairns, Australia.
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.
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.
Saturday, April 7, 2007
Dystonia and nutrition. Why bother?
Eating a well balanced diet based on good nutritional value is essential for us all, no matter what our age or physical condition may be. For those of us with dystonia, we need to be aware of foods that are low in fat, sugar and salt, to keep us in the best possible physical condition. In this way we can overcome fatigue, depression and physical stress, resulting from constantly spasming muscles and twisted bodies.
Healthy people, those affected by life threatening diseases and all who are somewhere between, need to be aware of the range of choices we have that directly relate to our day to day well-being. That old saying, 'we are what we eat' has a haunting ring to it when we acknowledge the high rates of cardiovascular disease, diabetes, renal failure, cancer, and mental illness affecting so many people within our global community.
Wherever we live exercise, appropriate to our age group, level of physical fitness and the climatic conditions in our area, is as important as our diet.
I hope this gives you food for thought and also inspiration for improving your diet. For those people with a medical condition requiring a specific diet, please speak to your family doctor or a nutritionist before changing any of the food groups you are now using.
Sue Bayliss. Cairns, Australia.
Healthy people, those affected by life threatening diseases and all who are somewhere between, need to be aware of the range of choices we have that directly relate to our day to day well-being. That old saying, 'we are what we eat' has a haunting ring to it when we acknowledge the high rates of cardiovascular disease, diabetes, renal failure, cancer, and mental illness affecting so many people within our global community.
Wherever we live exercise, appropriate to our age group, level of physical fitness and the climatic conditions in our area, is as important as our diet.
I hope this gives you food for thought and also inspiration for improving your diet. For those people with a medical condition requiring a specific diet, please speak to your family doctor or a nutritionist before changing any of the food groups you are now using.
Sue Bayliss. Cairns, Australia.
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.
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.
Saturday, March 24, 2007
Get over it? Yeah, right! I don't think so mate!
Aching body, muscles spasming. Voice so soft but starts to strangle, words are slow. Head pulls back and sideways tilts. Dystonia is its name.
Thickening drinks helps me swallow without that dreadful drowning thing.
In my dreams I long to find some comfort, strength and peace. My constant shaking, muscle spasms and funny voice, others do not understand.
Botulinum toxin gives some relief but not for long this time.
Generations to come need our help now to find a cure for this neurological movement disorder.
Tomorrow and during the coming week, I will write more about dystonia in its many forms. Meanwhile, find out more about dystonia and tell your family doctor, your family and your friends. Many people are misdiagnosed or left undiagnosed for many years.
To be informed leads to better understanding and eventually to a cure. At this time, people with the dreadful symptoms of dystonia are only able to have those symptoms treated. There is no cure - yet.
Sue Bayliss. Cairns, Australia.
Thickening drinks helps me swallow without that dreadful drowning thing.
In my dreams I long to find some comfort, strength and peace. My constant shaking, muscle spasms and funny voice, others do not understand.
Botulinum toxin gives some relief but not for long this time.
Generations to come need our help now to find a cure for this neurological movement disorder.
Tomorrow and during the coming week, I will write more about dystonia in its many forms. Meanwhile, find out more about dystonia and tell your family doctor, your family and your friends. Many people are misdiagnosed or left undiagnosed for many years.
To be informed leads to better understanding and eventually to a cure. At this time, people with the dreadful symptoms of dystonia are only able to have those symptoms treated. There is no cure - yet.
Sue Bayliss. Cairns, Australia.
Friday, March 9, 2007
Dystonia, botulinum toxin, dysphagia and xerostomia
What do they have in common? Well now. To be concise, possible reactions in a minority of patients following treatment for dystonia, a neurological disease!
In greater detail, dystonia symptoms in its many forms respond well to botulinum toxin, otherwise known as botox, for the majority of sufferers. However, one of the complications associated with botox therapy for some forms of dystonia is dysphagia, difficulty with swallowing. Some people may also experience xerostomia, dry mouth syndrome.
Dysphagia (reputable link but 19 pages) and or xerostomia do require monitoring for two important reasons. Firstly, ensuring patients remain safe and comfortable during the swallowing process. Secondly, ensuring your mouth remains moist enough for oral comfort and a good level of health.
The links in this article provide good information about relieving the symptoms of dysphagia and also xerostomia. If you experience any of these symptoms please, discuss this with your family doctor, treating specialist or speech pathologist.
There are excellent pharmaceutical products available to provide relief for both the above mentioned medical conditions. Alternatively, thickening sauce or gravy based foods such as casseroles and stews will be helpful for people with dysphagia. Drinking thick shakes or fruit smoothies offers variety and change from thickening drinks.
In reference to relief for dry mouth syndrome, an alternative to pharmaceutical products is a good, economical home remedy for relief of xerostomia. This is, one part peppermint essence to six parts grapeseed oil (both available in supermarket). Coat the inside of your mouth and tongue with either cotton buds/tips or throat swabs dipped in the solution as required. I have used this remedy on recommendation of a speech pathologist and find it is reliable, comfortable and inexpensive.
Always discuss your specific needs with the appropriate person from your treating team prior to changing what you are currently doing. Also, discuss the above suggested home remedy with your treatment team before commencing this yourself.
Please, leave a comment if you would like to or contact me on my email address below. I will get back to you.
Sue Bayliss. Cairns, Australia. (Additional cyclone link included here)
s.j.bayliss@bigpond.com.au
In greater detail, dystonia symptoms in its many forms respond well to botulinum toxin, otherwise known as botox, for the majority of sufferers. However, one of the complications associated with botox therapy for some forms of dystonia is dysphagia, difficulty with swallowing. Some people may also experience xerostomia, dry mouth syndrome.
Dysphagia (reputable link but 19 pages) and or xerostomia do require monitoring for two important reasons. Firstly, ensuring patients remain safe and comfortable during the swallowing process. Secondly, ensuring your mouth remains moist enough for oral comfort and a good level of health.
The links in this article provide good information about relieving the symptoms of dysphagia and also xerostomia. If you experience any of these symptoms please, discuss this with your family doctor, treating specialist or speech pathologist.
There are excellent pharmaceutical products available to provide relief for both the above mentioned medical conditions. Alternatively, thickening sauce or gravy based foods such as casseroles and stews will be helpful for people with dysphagia. Drinking thick shakes or fruit smoothies offers variety and change from thickening drinks.
In reference to relief for dry mouth syndrome, an alternative to pharmaceutical products is a good, economical home remedy for relief of xerostomia. This is, one part peppermint essence to six parts grapeseed oil (both available in supermarket). Coat the inside of your mouth and tongue with either cotton buds/tips or throat swabs dipped in the solution as required. I have used this remedy on recommendation of a speech pathologist and find it is reliable, comfortable and inexpensive.
Always discuss your specific needs with the appropriate person from your treating team prior to changing what you are currently doing. Also, discuss the above suggested home remedy with your treatment team before commencing this yourself.
Please, leave a comment if you would like to or contact me on my email address below. I will get back to you.
Sue Bayliss. Cairns, Australia. (Additional cyclone link included here)
s.j.bayliss@bigpond.com.au
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