is a not for profit organisation run entirely by volunteers.
Corporate Angel Network of Australia is a registared charity working nationally to provide FREE air transport between home and treatment centre for cancer and leukaemia patients, bone marow donors and members of their families or carer.
The network liaises with hospitals and cancer and leukaemia support services right across Australia. This service does not provide travel for people who are entitled to government assisted travel and does not provide hospital to hospital transfers.
ALL patients travelling must have a Doctor's certificate of fitness to travel by air, must be ambulatory and be able to travel unaccompanied. All requests for assistance are from the hospital or support service. The Angel Network do not accept requests directly from the travellers or members of their family.
Most requests for this service are made by hospital social workers or nursing staff. For further information please check out The Angel Network of Australia website at www.angelnet.asn.au (phone: 07 5496 8854)
Sue Bayliss. Cairns, Australia.
Showing posts with label social work. Show all posts
Showing posts with label social work. Show all posts
Wednesday, February 20, 2008
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, November 19, 2007
Dystonia musculorum deformans is commonly referred to as generalized dystonia or early-onset dystonia.
Dystonia in its many forms including generalized dystonia is a frequently misdiagnosed and little understood chronic neurological disorder. Dystonia is not fatal but may be quite painful. Abnormal signals sent out by the brain block messages to muscles. This causes involuntary muscular spasms that may twist a person's body into abnormal positions. Neurologists with an interest in movement disorders are able to offer an appropriate clinical diagnosis followed by a treatment plan.
Generalized dystonia may present as more problematic to treat than other forms of dystonia. This type of dystonia frequently requires a combination of drugs suitable for the presenting symptoms. When favored treatment methods are no longer helpful in controlling symptoms the person may be referred for deep brain stimulation surgery. There is no guarantee of success resulting from this form of surgery. The risk of serious complications must be considered. Botulinum toxin injections are commonly and successfully used for treating symptoms of dystonia but may not be particularly helpful for the long term treatment of generalized dystonia.
Botulinum toxin injections into the overactive muscles is the safest and preferred drug therapy for most other forms of dystonia. Prolonged effect of the injections may be gained from physiotherapy, speech therapy and or other interventions recognized as beneficial for each person's need.
Appropriate support for people with dystonia and their families can be hard to find. It is through contact with others experiencing the same kinds of daily frustrations resulting from living with dystonia that individuals are able to feel normal. Talking to others who really do understand is a welcome relief!
If you would like to share your story or know more about dystonia, please leave a comment or email me (s.j.bayliss@bigpond.com.au). I will get back to you.
Sue Bayliss. Cairns, Australia.
Generalized dystonia may present as more problematic to treat than other forms of dystonia. This type of dystonia frequently requires a combination of drugs suitable for the presenting symptoms. When favored treatment methods are no longer helpful in controlling symptoms the person may be referred for deep brain stimulation surgery. There is no guarantee of success resulting from this form of surgery. The risk of serious complications must be considered. Botulinum toxin injections are commonly and successfully used for treating symptoms of dystonia but may not be particularly helpful for the long term treatment of generalized dystonia.
Botulinum toxin injections into the overactive muscles is the safest and preferred drug therapy for most other forms of dystonia. Prolonged effect of the injections may be gained from physiotherapy, speech therapy and or other interventions recognized as beneficial for each person's need.
Appropriate support for people with dystonia and their families can be hard to find. It is through contact with others experiencing the same kinds of daily frustrations resulting from living with dystonia that individuals are able to feel normal. Talking to others who really do understand is a welcome relief!
If you would like to share your story or know more about dystonia, please leave a comment or email me (s.j.bayliss@bigpond.com.au). I will get back to you.
Sue Bayliss. Cairns, Australia.
Sunday, November 18, 2007
Wow! This week is shaping up to be really exciting ...
- in the Land Downunder. Some weeks may be as interesting as watching a shoe box full of hair. Not this week folks. We are set for a dynamic roller coaster ride. Everything from inclement weather through political intrigue, medical breakthrough announcements, tracking down a murderous fugitive, to initiating social change and hair growth. Now that has to claim the wow factor. Much of it is happening right here in the Land Downunder during this week! Go on, click on the links and see where they take you.
Unpredictable cyclone hanging around.
Last week of Australian federal election campaign.
Election day on Saturday 24th November '07. Who will be our Prime Minister next week???
Hope for finding Pumpkin's dad following emotional plea by America's Most Wanted.
The world is not coming to an end tomorrow!
Opportunity knocks for those in the know when it comes to community intervention programs.
Thank you for stopping by. Hope you enjoyed the story trail of exciting events winding through our coming week! You will find lots of exciting links throughout this blog site. Have a browse. Even a funny voice and twisted neck can't keep me away from all these adventures.
Monday, September 17, 2007
Dystonia: a cuppa, a bex, and a good lie down.
What do they have in common?
Not a lot. However, Australian’s living with dystonic muscle spasms in the not too distant past would have linked the old saying "a cup of tea, a bex and a good lie down" in a bitter sweet kind of way.
Firstly, many a true blue Aussie knows from experience the refreshing benefit of a cuppa at any time. Secondly, Bex Powders are recognized as the magical ‘fix’ of the day until the mid to late 1960’s in Australia. Bex Powders are now credited as a major contributor to addiction and renal disease of that era. Thirdly, having a good lie down is acknowledged as beneficial to our health in general, particularly inducing the necessary brain function for natural pain relief.
Amazing, isn’t it? People living with dystonia prior to recognition of this disease as neurological in origin sought their own remedies that no doubt included a cup of tea, a bex and a good lie down! Does this bring to your mind’s eye an image or a phrase from days gone by that ‘hits the nail on the head’? If so, leave a comment or email me. I would love to hear from you. The highlighted links lead you to some great sites. Where ever you are, have a great day.
Sue Bayliss. (s.j.bayliss@bigpond.com.au)
Cairns, Australia.
Not a lot. However, Australian’s living with dystonic muscle spasms in the not too distant past would have linked the old saying "a cup of tea, a bex and a good lie down" in a bitter sweet kind of way.
Firstly, many a true blue Aussie knows from experience the refreshing benefit of a cuppa at any time. Secondly, Bex Powders are recognized as the magical ‘fix’ of the day until the mid to late 1960’s in Australia. Bex Powders are now credited as a major contributor to addiction and renal disease of that era. Thirdly, having a good lie down is acknowledged as beneficial to our health in general, particularly inducing the necessary brain function for natural pain relief.
Amazing, isn’t it? People living with dystonia prior to recognition of this disease as neurological in origin sought their own remedies that no doubt included a cup of tea, a bex and a good lie down! Does this bring to your mind’s eye an image or a phrase from days gone by that ‘hits the nail on the head’? If so, leave a comment or email me. I would love to hear from you. The highlighted links lead you to some great sites. Where ever you are, have a great day.
Sue Bayliss. (s.j.bayliss@bigpond.com.au)
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, 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.
Friday, March 30, 2007
Oh by gosh, the pain of it is crippling!
Read about how musicians are affected by dystonia in Ongoing Research 2006/2007 - Focal Hand Dystonia affecting musicians in Scotland. It appears that focal dystonia is a condition musicians are particularly susceptible to. Using repetitive almost simultaneous finger and hand movements may trigger dystonia in musicians. One professional musician appearing in the DVD, Twisted, was unable to play piano for 30 years due to dystonic muscular spasms. Following treatment, botulinum toxin injections for occupational dystonia, he was again able to play piano.
Writers cramp, also referred to as task specific dystonia, is the name of one type of dystonia affecting many musicians. This task specific dystonia triggered by specific action or movement causes fingers, hand, and or forearm muscles to spasm. When the musician stops using those muscles, their hand and or arm spasms tend to relax. This form of dystonia is not only experienced by musicians but also by other people who are required to use specific, repetitive movements.
The linked Dystonia bulletin board, Musicians with dystonia bulletin board and Spasmodic dysphonia bulletin board, as well as the Blepharospasm bulletin board, are all available to dystonia sufferers, their families and or carers. Wherever you are, if you have dystonia support is readily available.
Sue Bayliss. Cairns, Australia.
Writers cramp, also referred to as task specific dystonia, is the name of one type of dystonia affecting many musicians. This task specific dystonia triggered by specific action or movement causes fingers, hand, and or forearm muscles to spasm. When the musician stops using those muscles, their hand and or arm spasms tend to relax. This form of dystonia is not only experienced by musicians but also by other people who are required to use specific, repetitive movements.
The linked Dystonia bulletin board, Musicians with dystonia bulletin board and Spasmodic dysphonia bulletin board, as well as the Blepharospasm bulletin board, are all available to dystonia sufferers, their families and or carers. Wherever you are, if you have dystonia support is readily available.
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.
Tuesday, March 27, 2007
De Gaper or Yawning man: Blepharospasm-Oromandibular Dystonia?
Meige’s Syndrome is also known as Breughel’s disease. So, what about it? Hmm. It is the dreaded dystonia, again. That’s what!!
Okay, this is what a couple of little nasties can do for you when you least expect it! We are talking about a combination of oromandibular dystonia and blepharospasm. So what are they, I hear you say? When both these forms of dystonia present together the result is called Meige’s Syndrome.
Firstly, oromandibular dystonia may affect the face, tongue, palate and jaw. It presents with abnormal mouth or tongue movements, grimacing expressions or forced opening or closing of the mouth. The many small muscles around the areas affected make this type of dystonia difficult to treat. Secondly, blepharospasm results from eye muscles spasming thus causing the eyelids to close suddenly without warning.
Blepharospasm is a form of dystonia that frequently starts with the eyelids blinking uncontrollably. Once the spasms close the eyelid, the person experiencing this may have great difficulty opening the eye or eyes again until the spasms ease. Vision is not affected. However, sight is seriously impaired when the eyelid is resistant to opening! Sunlight is known to aggravate this condition.
The name Breughel’s disease comes from the 16th Century Flemish painter, Breughel. He managed to portray the syndrome on canvas. In some cases, people with this form of dystonia are also affected by dysphonia, resulting from spasming vocal cords. Treatment is possible to relieve distressing symptoms associated with this rare kind of dystonia.
Botox treatment has proven successful for many people over a long period of time. The doses given are very small so there is seldom accumulation of antibodies. Surgery may also be an option for some people. However, both forms of treatment only provide relief of symptoms. At this time, there is no cure.
On-going research is needed to find a cure for all forms of dystonia. Dystonia research has not as yet attracted sufficient funding to allow appropriate follow up to the studies already underway.
Sue Bayliss. Cairns, Australia.
Okay, this is what a couple of little nasties can do for you when you least expect it! We are talking about a combination of oromandibular dystonia and blepharospasm. So what are they, I hear you say? When both these forms of dystonia present together the result is called Meige’s Syndrome.
Firstly, oromandibular dystonia may affect the face, tongue, palate and jaw. It presents with abnormal mouth or tongue movements, grimacing expressions or forced opening or closing of the mouth. The many small muscles around the areas affected make this type of dystonia difficult to treat. Secondly, blepharospasm results from eye muscles spasming thus causing the eyelids to close suddenly without warning.
Blepharospasm is a form of dystonia that frequently starts with the eyelids blinking uncontrollably. Once the spasms close the eyelid, the person experiencing this may have great difficulty opening the eye or eyes again until the spasms ease. Vision is not affected. However, sight is seriously impaired when the eyelid is resistant to opening! Sunlight is known to aggravate this condition.
The name Breughel’s disease comes from the 16th Century Flemish painter, Breughel. He managed to portray the syndrome on canvas. In some cases, people with this form of dystonia are also affected by dysphonia, resulting from spasming vocal cords. Treatment is possible to relieve distressing symptoms associated with this rare kind of dystonia.
Botox treatment has proven successful for many people over a long period of time. The doses given are very small so there is seldom accumulation of antibodies. Surgery may also be an option for some people. However, both forms of treatment only provide relief of symptoms. At this time, there is no cure.
On-going research is needed to find a cure for all forms of dystonia. Dystonia research has not as yet attracted sufficient funding to allow appropriate follow up to the studies already underway.
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.
Friday, March 23, 2007
National Spasmodic Dysphonia Association Symposium - 5 May 2007.
The following invitation is from David Barton, President of the National Spasmodic Dysphonia Association. I have included some informative links in this article for your convenience.
Dear Members, Friends and Supporters of the NSDA,
We hope you will join us for the National Spasmodic Dysphonia Association's 2007 Symposium which is being held on Saturday, May 5, 2007 at the Crowne Plaza Hotel in White Plains, New York. The goals of the NSDA Symposium are:
To provide a learning environment in which people with Spasmodic Dysphonia may enhance their understanding of the disorder;
To facilitate an exchange of information of how to live effectively with the disorder;
To increase NSDA's capabilities in measuring and understanding the needs of its members in order to develop future programs.
This annual meeting draws together hundreds of people dealing with Spasmodic Dysphonia to hear the latest information on treatment and research while offering the opportunity to share experiences. There will be a Welcome Party on Friday, May 4, for those coming in the night before.
Speakers and panelists include (in alphabetical order):
Andrew Blitzer, M.D., St. Luke's Roosevelt Hospital, New York, NY
Jamie Koufman, M.D., The Voice Institute of New York, New York, NY
Mark LeDoux, M.D., Ph.D., University of Tennessee School of Medicine, Memphis, TN
Christy Ludlow, Ph.D, National Institute of Neurological Disease and Stroke, Bethesda, MD
Tom Murry, Ph.D., Columbia University School of Medicine, New York, NY
Michael Pitman, M.D., New York Eye and Ear Infirmary, New York, NY
Lucian Sulica, M.D., Weill-Cornell Medical Center, New York, NY
Celia Stuart, Ph.D., Head And Neck Surgical Group, New York, NY
Miodrag Velickovic, M.D., Mount Sinai Hospital, New York, NY
Peak Woo, M.D. The Grabsheid Voice Center, Mount Sinai Hospital, New York, NY
The meeting will begin at 8:45 a.m. and adjourn at 5:00 p.m. There will be panel discussions on the following topics:
Overview of Spasmodic Dysphonia
Management of Spasmodic Dysphonia
Spasmodic Dysphonia Research
Break-Out Sessions
Session I.
Treatment-Related Speech Therapy
Botulinum Toxin Injections
Surgical Procedures for SD
Treating ABductor Spasmodic Dysphonia
Session II.
Living with SD
Family and Friends - spouses, friends, and those supporting someone with SD
Young Adults - For the younger generation living with SD
Living with Spasmodic Dysphonia - Panel Discussion
Especially for SLPs - For Speech Language Pathologists
Keynote Speaker: Karen Jennings
Karen Jennings serves as the Senior Executive Vice President-Human Resources and Communications for AT&T. She is responsible for all aspects of human resources and executive support, as well as AT&T advertising, professional and technical learning programs, corporate communications and media relations, advertising and sponsorships. She assumed her current position at SBC in July 2002. She is also a member of the board of the AT&T Foundation, the philanthropic entity of AT&T Inc. Previously, Ms. Jennings served as Senior Executive Vice President - Human Resources.
In 1994, Karen developed a strangled and choked-like quality sound to her voice. With the encouragement from her peers and her determination to overcome this obstacle, Karen relentlessly sought answers and was rewarded with a relatively quick diagnosis of Spasmodic Dysphonia within 3-4 months. With treatment, Karen regained her voice, her self- assurance, and her career continued to soar. We are pleased that Karen will join us at this meeting.
CEU InformationContinuing Educational Units through the American Speech-Language-Hearing Association will be available for this meeting.
Hotel Information
The Crowne Plaza White Plains Hotel is situated in downtown White Plains, NY, which is the heart of Westchester County. This property is only 30 minutes from Manhattan by train, and the hotel is adjacent to world-class shopping at the Westchester with Neiman Marcus and Nordstrom.
The hotel also offers transportation to and from the Westchester County Airport, White Plains Metro North Train Station, as well as local businesses and attractions. New York Airports, La Guardia, JFK and Newark, are all accessible from the Crowne Plaza White Plains.
NSDA has secured a special room rate of $125 per night (plus tax). To make room reservations, please log onto:
The National Spasmodic Dysphonia Assosiation's website for full registration information.
There is a special room rate between the dates of May 2 and May 6. The NSDA has included extra days in case you would like to travel early to explore New York. You may also call the hotel directly at 914-682-0050. You will need to mention the NSD group code to secure the special group rate (click on the NSDA site above to do this).
Our hosts will be the New York City Spasmodic Dysphonia Support Group and they will be your guide for this trip. They are working on some great ideas of what to do while you are in the New York City area.
We hope you will mark this date on your calendar and plan to attend this exciting meeting!
Sincerely,
David Barton, President
National Spasmodic Dysphonia Association
E-mail: nsda@dysphonia.org
Phone: 800-795-6732
Website: http://www.dysphonia.org
If you suffer from spasmodic dysphonia and are able to attend this meeting, please consider doing so. I did not realize this meeting was coming up at the same time I booked a trip to the UK from early May until early June. I am unable to change our tickets for my family and me to travel via New York. I apologize for not attending but will be there in Spirit with you all!
Sue Bayliss. Cairns, Australia.
Dear Members, Friends and Supporters of the NSDA,
We hope you will join us for the National Spasmodic Dysphonia Association's 2007 Symposium which is being held on Saturday, May 5, 2007 at the Crowne Plaza Hotel in White Plains, New York. The goals of the NSDA Symposium are:
To provide a learning environment in which people with Spasmodic Dysphonia may enhance their understanding of the disorder;
To facilitate an exchange of information of how to live effectively with the disorder;
To increase NSDA's capabilities in measuring and understanding the needs of its members in order to develop future programs.
This annual meeting draws together hundreds of people dealing with Spasmodic Dysphonia to hear the latest information on treatment and research while offering the opportunity to share experiences. There will be a Welcome Party on Friday, May 4, for those coming in the night before.
Speakers and panelists include (in alphabetical order):
Andrew Blitzer, M.D., St. Luke's Roosevelt Hospital, New York, NY
Jamie Koufman, M.D., The Voice Institute of New York, New York, NY
Mark LeDoux, M.D., Ph.D., University of Tennessee School of Medicine, Memphis, TN
Christy Ludlow, Ph.D, National Institute of Neurological Disease and Stroke, Bethesda, MD
Tom Murry, Ph.D., Columbia University School of Medicine, New York, NY
Michael Pitman, M.D., New York Eye and Ear Infirmary, New York, NY
Lucian Sulica, M.D., Weill-Cornell Medical Center, New York, NY
Celia Stuart, Ph.D., Head And Neck Surgical Group, New York, NY
Miodrag Velickovic, M.D., Mount Sinai Hospital, New York, NY
Peak Woo, M.D. The Grabsheid Voice Center, Mount Sinai Hospital, New York, NY
The meeting will begin at 8:45 a.m. and adjourn at 5:00 p.m. There will be panel discussions on the following topics:
Overview of Spasmodic Dysphonia
Management of Spasmodic Dysphonia
Spasmodic Dysphonia Research
Break-Out Sessions
Session I.
Treatment-Related Speech Therapy
Botulinum Toxin Injections
Surgical Procedures for SD
Treating ABductor Spasmodic Dysphonia
Session II.
Living with SD
Family and Friends - spouses, friends, and those supporting someone with SD
Young Adults - For the younger generation living with SD
Living with Spasmodic Dysphonia - Panel Discussion
Especially for SLPs - For Speech Language Pathologists
Keynote Speaker: Karen Jennings
Karen Jennings serves as the Senior Executive Vice President-Human Resources and Communications for AT&T. She is responsible for all aspects of human resources and executive support, as well as AT&T advertising, professional and technical learning programs, corporate communications and media relations, advertising and sponsorships. She assumed her current position at SBC in July 2002. She is also a member of the board of the AT&T Foundation, the philanthropic entity of AT&T Inc. Previously, Ms. Jennings served as Senior Executive Vice President - Human Resources.
In 1994, Karen developed a strangled and choked-like quality sound to her voice. With the encouragement from her peers and her determination to overcome this obstacle, Karen relentlessly sought answers and was rewarded with a relatively quick diagnosis of Spasmodic Dysphonia within 3-4 months. With treatment, Karen regained her voice, her self- assurance, and her career continued to soar. We are pleased that Karen will join us at this meeting.
CEU InformationContinuing Educational Units through the American Speech-Language-Hearing Association will be available for this meeting.
Hotel Information
The Crowne Plaza White Plains Hotel is situated in downtown White Plains, NY, which is the heart of Westchester County. This property is only 30 minutes from Manhattan by train, and the hotel is adjacent to world-class shopping at the Westchester with Neiman Marcus and Nordstrom.
The hotel also offers transportation to and from the Westchester County Airport, White Plains Metro North Train Station, as well as local businesses and attractions. New York Airports, La Guardia, JFK and Newark, are all accessible from the Crowne Plaza White Plains.
NSDA has secured a special room rate of $125 per night (plus tax). To make room reservations, please log onto:
The National Spasmodic Dysphonia Assosiation's website for full registration information.
There is a special room rate between the dates of May 2 and May 6. The NSDA has included extra days in case you would like to travel early to explore New York. You may also call the hotel directly at 914-682-0050. You will need to mention the NSD group code to secure the special group rate (click on the NSDA site above to do this).
Our hosts will be the New York City Spasmodic Dysphonia Support Group and they will be your guide for this trip. They are working on some great ideas of what to do while you are in the New York City area.
We hope you will mark this date on your calendar and plan to attend this exciting meeting!
Sincerely,
David Barton, President
National Spasmodic Dysphonia Association
E-mail: nsda@dysphonia.org
Phone: 800-795-6732
Website: http://www.dysphonia.org
If you suffer from spasmodic dysphonia and are able to attend this meeting, please consider doing so. I did not realize this meeting was coming up at the same time I booked a trip to the UK from early May until early June. I am unable to change our tickets for my family and me to travel via New York. I apologize for not attending but will be there in Spirit with you all!
Sue Bayliss. Cairns, Australia.
Monday, March 19, 2007
Do you have a funny voice? Using Auslan: Australian sign language, a minority group language other than English.
Sign language is not used exclusively by people who are deaf. This language is also very useful for people who are hearing and or voice impaired. Once a student is confident enough to use this language in public places, they are frequently surprised just how many people are familiar with both sign language symbols and finger spelling.
Auslan is officially recognized as the Deaf community’s language in Australia. As mentioned in previous articles, hearing people journeying through Auslan classes find the experience to be challenging, interesting, and loads of fun. All students in the current Deaf Services Queensland class in Cairns, Australia, have successfully completed level one introduction to Auslan. Our efforts to learn introductory level two in Auslan are progressing nicely and coming to a close with only three once weekly lessons remaining. We are encouraged to have voices ‘turned off’ during class and also during the coffee/tea break.
To date, weekly lessons have resulted in students accomplishing the following skills by signing in Auslan.
* How to make culturally appropriate introductions and gain another person’s attention.
* Hand shape: The point hand and Auslan language signing symbols associated with the point hand shape.
* Describing others: Individually using signing symbols with appropriate hand shapes describing features of a person to the class until the group correctly recognizes the person being described by the signer.
* Talking about family and occupations: Individually describing our own family group and personal occupational history to the class, receiving feed back to confirm the information given.
* Attributing qualities to others: Describing another person’s personal qualities; describing our own or someone else’s pet’s type, gender, personality and appearance; game playing in the style of charades using Auslan symbols to portray different personalities and desirable personal qualities for specific work roles.
If you are interested in learning Auslan or the official sign language in your country, find out where your nearest Deaf Services Office is and request information about language classes. Personally, sign language is a great support to me when my voice is very soft following treatment or vocal cords are spasming and others are unable to understand my speech. Sometimes, in busy or crowded areas, I choose to sign rather than attempt speech knowing others are unable to hear or understand me. If you do not yet know any formal sign language, using common sense gestures and facial expressions together with other body language soon gets your message across to others. If you suffer from spasmodic dysphonia I wish you well.
I hope this article is of interest to you. You are welcome to leave a comment or email me at s.j.bayliss@bigpond.com.au.
Thursday, March 15, 2007
Hey! What on earth is wrong with your eyes?
Blepharospasm. This is a form of dystonia, a neurological movement disorder causing muscles to involuntarily spasm or contract. In some forms of dystonia, these contractions may result in twisting, repetitive movements and abnormal bodily postures.
The first symptoms of blepharospasm may be constant blinking, uncontrollable squinting, eyelids twitching and spasming, or experiencing great difficulty in keeping your eyelids open. Blepharospasm is described as a focal dystonia affecting the muscles associated with our eyes.
Focal dystonia refers to symptoms affecting a single body area. In the case of blepharospasm, it is usually present in both eyes. Initially, the spasms may begin in response to bright light, fatigue or emotional stress. Occasionally, spasms may progress to a stage where the eyelids close tightly for hours at a time. During these times vision impairment is due solely to the muscular spasms causing the eyelids to remain closed.
Eyesight, cognitive function, strength, and all senses are normal. Blepharospasm, like other forms of dystonia, is thought to result from abnormal functioning of deep brain structures known as the basal ganglia which are involved in controlling our movements.
Symptoms of blepharospasm respond well in most people when treated with botulinum toxin injections, commonly referred to as botox.
To learn more about this form of dystonia, follow the highlighted links above. If you would like to leave a message, please click on the ‘comment’ link below. Alternatively, email me at s.j.bayliss@bigpond.com.au and I will get back to you. I have been away this week and have many emails to respond to. I will reply to all by this coming weekend. It is lovely to hear from so many people. Thank you.
Sue Bayliss. Cairns, Australia.
The first symptoms of blepharospasm may be constant blinking, uncontrollable squinting, eyelids twitching and spasming, or experiencing great difficulty in keeping your eyelids open. Blepharospasm is described as a focal dystonia affecting the muscles associated with our eyes.
Focal dystonia refers to symptoms affecting a single body area. In the case of blepharospasm, it is usually present in both eyes. Initially, the spasms may begin in response to bright light, fatigue or emotional stress. Occasionally, spasms may progress to a stage where the eyelids close tightly for hours at a time. During these times vision impairment is due solely to the muscular spasms causing the eyelids to remain closed.
Eyesight, cognitive function, strength, and all senses are normal. Blepharospasm, like other forms of dystonia, is thought to result from abnormal functioning of deep brain structures known as the basal ganglia which are involved in controlling our movements.
Symptoms of blepharospasm respond well in most people when treated with botulinum toxin injections, commonly referred to as botox.
To learn more about this form of dystonia, follow the highlighted links above. If you would like to leave a message, please click on the ‘comment’ link below. Alternatively, email me at s.j.bayliss@bigpond.com.au and I will get back to you. I have been away this week and have many emails to respond to. I will reply to all by this coming weekend. It is lovely to hear from so many people. Thank you.
Sue Bayliss. Cairns, Australia.
Sunday, March 11, 2007
Feel as though you have slogged away all day without doing anything?
I can let you into a little secret as long as we get to SHOUT IT FROM THE ROOFTOPS!
The frequent physical movements associated with dystonia can be equivalent to the effects of working out for 18 hours a day. It is even greater for people whose dystonic movements continue during sleep. For these people, the affect experienced is equal to working out for 24 hours per day.
Dystonic movements of muscular spasms and tremor may result in significant levels of fatigue and diminished stamina thus making life more difficult to get through the day. However, we need to remember there is a risk of confusing fatigue with feelings of lethargy or a lack of motivation resulting from depression or some other medical condition.
Learn more about dystonia in all its forms. These links will take you to Dystonia Australia and the Australian Spasmodic Torticollis Association. Navigate your way around these sites and you will find links to other Dystonia sites in countries around the world.
As you learn more about this neurological disease, please consider how you may assist through donation to the appropriate Dystonia organization in your country of origin. Dystonia scientists require on-going funds to help them advance research leading to finding a cure for dystonia. Until a cure is found, the only hope for sufferers of dystonia in its various forms is to receive treatment of their symptoms.
I would like to let you know, I am traveling North to the beautiful little town of Cooktown tomorrow. My son and I are visiting my husband’s grave, an Australian War Grave, and also catching up with family and friends in that area. We return to Cairns mid week and will be back blogging then. Meanwhile stay safe, stay well and stay involved with learning more about Dystonia.
Sue Bayliss, Cairns, Australia.
The frequent physical movements associated with dystonia can be equivalent to the effects of working out for 18 hours a day. It is even greater for people whose dystonic movements continue during sleep. For these people, the affect experienced is equal to working out for 24 hours per day.
Dystonic movements of muscular spasms and tremor may result in significant levels of fatigue and diminished stamina thus making life more difficult to get through the day. However, we need to remember there is a risk of confusing fatigue with feelings of lethargy or a lack of motivation resulting from depression or some other medical condition.
Learn more about dystonia in all its forms. These links will take you to Dystonia Australia and the Australian Spasmodic Torticollis Association. Navigate your way around these sites and you will find links to other Dystonia sites in countries around the world.
As you learn more about this neurological disease, please consider how you may assist through donation to the appropriate Dystonia organization in your country of origin. Dystonia scientists require on-going funds to help them advance research leading to finding a cure for dystonia. Until a cure is found, the only hope for sufferers of dystonia in its various forms is to receive treatment of their symptoms.
I would like to let you know, I am traveling North to the beautiful little town of Cooktown tomorrow. My son and I are visiting my husband’s grave, an Australian War Grave, and also catching up with family and friends in that area. We return to Cairns mid week and will be back blogging then. Meanwhile stay safe, stay well and stay involved with learning more about Dystonia.
Sue Bayliss, Cairns, Australia.
Saturday, March 10, 2007
How do I explain to someone what dystonia is?
Dystonia is a neurological movement disorder that causes muscles in the body to contract or spasm involuntarily. The involuntary muscle contractions cause twisting, repetitive and patterned movements as well as abnormal postures.
Dystonia is not a single disease but a syndrome – a set of symptoms that cannot be attributed to a single cause but share common elements. Some forms of dystonia may affect a specific body area, such as the neck, face, jaw, eyes, limbs or vocal cords.
Dystonia affects both men and women of all ages. It can develop in childhood and is often particularly disabling for children. Dystonia which manifests itself in adult life tends to remain focal, rather than becoming generalised.
The causes of dystonia are not yet fully understood, but it is thought that it may be caused by a chemical imbalance in a particular area of the brain called the basal ganglia where the messages to initiate muscle contractions are believed to originate. Dystonia is best classified according to the parts of the body affected.
If only one part of the body is affected, such as the eyes, neck, a limb, or the voice, it is called focal dystonia. If a larger region such as the neck and arms is involved, it is called segmental dystonia. If the spasms affect the arm and leg on the same side it is known as hemidystonia. If two or more unrelated parts of the body are affected it is named multifocal dystonia. Finally, if the dystonia is more widespread, the term generalised dystonia is used.
The above information is taken from Dystonia Australia. Links throughout this article refer back to the Dystonia Australia site and to the Australian Spasmodic Torticollis Association. There is also a link to Blind Dog films DVD, Twisted. If you have not yet visited this site I urge you to look it up now. You are able to order and pay for the DVD on line. This is an excellent resource for furthering your own knowledge and interest in Dystonia and also provides good insight for use with in-service training sessions and for a continuing professional education resource. Prices are structured for private use and for professional /educational use or public viewing. If you are a professional person working or studying in the area of health and or allied health, please do consider following up with this DVD.
If you would like to leave a message, please click on the 'comments' below.
Finally, I ask you to keep the people in the Western Australian towns of Port Hedland and Karratha (see Australia link below), and the neighbouring areas along that coast line and inland, in your thoughts and prayers as they buckle up for the second cyclone in days to cross their shore. Lives have already been lost and many people are injured from the cyclone just passed. Now they are going through it all again without having enough time to clear up all the damage. It is my hope many people may have been flown out to safer areas. To do that, light aircraft will have needed to land in dreadful conditions to get them out.
Sue Bayliss, Cairns, Australia.
Dystonia is not a single disease but a syndrome – a set of symptoms that cannot be attributed to a single cause but share common elements. Some forms of dystonia may affect a specific body area, such as the neck, face, jaw, eyes, limbs or vocal cords.
Dystonia affects both men and women of all ages. It can develop in childhood and is often particularly disabling for children. Dystonia which manifests itself in adult life tends to remain focal, rather than becoming generalised.
The causes of dystonia are not yet fully understood, but it is thought that it may be caused by a chemical imbalance in a particular area of the brain called the basal ganglia where the messages to initiate muscle contractions are believed to originate. Dystonia is best classified according to the parts of the body affected.
If only one part of the body is affected, such as the eyes, neck, a limb, or the voice, it is called focal dystonia. If a larger region such as the neck and arms is involved, it is called segmental dystonia. If the spasms affect the arm and leg on the same side it is known as hemidystonia. If two or more unrelated parts of the body are affected it is named multifocal dystonia. Finally, if the dystonia is more widespread, the term generalised dystonia is used.
The above information is taken from Dystonia Australia. Links throughout this article refer back to the Dystonia Australia site and to the Australian Spasmodic Torticollis Association. There is also a link to Blind Dog films DVD, Twisted. If you have not yet visited this site I urge you to look it up now. You are able to order and pay for the DVD on line. This is an excellent resource for furthering your own knowledge and interest in Dystonia and also provides good insight for use with in-service training sessions and for a continuing professional education resource. Prices are structured for private use and for professional /educational use or public viewing. If you are a professional person working or studying in the area of health and or allied health, please do consider following up with this DVD.
If you would like to leave a message, please click on the 'comments' below.
Finally, I ask you to keep the people in the Western Australian towns of Port Hedland and Karratha (see Australia link below), and the neighbouring areas along that coast line and inland, in your thoughts and prayers as they buckle up for the second cyclone in days to cross their shore. Lives have already been lost and many people are injured from the cyclone just passed. Now they are going through it all again without having enough time to clear up all the damage. It is my hope many people may have been flown out to safer areas. To do that, light aircraft will have needed to land in dreadful conditions to get them out.
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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