of great value to those of us with dysphagia! Two exercises, firstly the good old chin tuck trick and secondly, an exercise to strengthen the muscles in the back wall of the throat are designed specifically for improving the control of fluid and food in the mouth and during the swallowing process. It is most important that you discuss with your speech pathologist and or treating specialist whether or not you need to do these exercises.
Swallowing with safety does not mean thickening fluids and soft diet for all people. Following botulinum toxin treatment into vocal cords many people experience some difficulty with swallowing. For most people this side effect of treatment settles quickly, within two or three weeks. People who already experience an underlying dysphagia condition requiring thickened fluids and soft diet need to continue with their treatment plan but may still benefit from these exercises. Any change to your swallowing technique needs to be decided between you and your speech pathologist.
The chin tuck requires a specific posture of head and neck designed to reduce the area between the front and back walls of your throat. This action narrows the entrance to your airway, diverting food and fluid around your airway. To achieve this management technique, move your chin forward towards your neck before swallowing.
Following treatment for laryngeal dystonia and also cervical dystonia these muscles may be weaker thus causing difficulty swallowing. When swallowing normally, the base of your tongue and the back wall of your throat come together. This position of tongue and throat creates strong pressure, pushing food and fluid through the throat and down towards your stomach. When weakness occurs in the muscles in the back of the throat they do not move forward enough to create a good swallowing reflex.
An exercise to strengthen these muscles is to put your tongue out between your teeth, holding it in this position and swallowing. Although at first this may be a little difficult, practice will hopefully improve the movement. Practicing this exercise approximately five to 10 times twice a day will soon show an improvement in your swallowing ability.
By practicing the two simple exercises above you will hopefully be able to enjoy greater control of fluids and foods when swallowing after treatment with botulinum toxin injections for specific forms of dystonia. For those of us already experiencing dysphagia, these exercises are of great value in managing any additional weakness during the swallowing movements. These exercises were provided to me by my treating speech pathologist. Please consult with your speech pathologist in relation to your own need and supervision of treatment plan.
Please leave a comment if you would like to. Meanwhile, swallow safely and enjoy life with well managed dystonia and dysphagia.
Sue Bayliss. Cairns, Australia.
Tuesday, February 27, 2007
Monday, February 26, 2007
Turning pain into gain!
Chronic pain from neurological conditions such as cervical dystonia (link-scroll down to ‘do drugs help’) and also some other forms of dystonia may be difficult to live with. It can change the direction of our life. This does not always mean for the worse. If you experience chronic pain from dystonia or some other cause, perhaps a combination of chronic diseases such as dystonia and arthritis or some other form of degenerative bone disease, relief is available .
Pain is our body’s way of telling us something is not quite right. Apart from minor bumps, scratches and small pains requiring minor relief available from a pharmacy, pain basically falls into two categories. Firstly, acute pain is sharp and severe requiring immediate emergency intervention. Secondly, long term pain or chronic pain becomes part of our life. Like all areas of ongoing situations in life, we need to plan for chronic pain. Pain requires management that not only controls the actual pain and discomfort but enhances our lifestyle.
Exercise and diet are important components to managing pain. Good general health and a positive mental and emotional outlook on life are essential for managing pain control and enjoying life. Reducing anxiety through relaxation and meditation is a helpful approach. Physiotherapy by a physiotherapist trained in techniques specific to your medical and or neurological condition may be helpful. Regardless of which physical, emotional and spiritual remedies you choose your treating specialist in consultation with your family doctor and other allied health workers are the people to be talking with about your pain control and medication management program.
Some medications can actually intensify discomfort and pain. It is possible to overdose, even on medication we think of as being very safe, such as paracetamol . Using codeine for long periods of time or unsupervised may lead to dependence, addiction or other serious medical side effects.
I hope this article is helpful. Please take time to return to the links above and save to your files if they are useful. If you would like to leave a comment or email me directly, you are most welcome. I will get back to you. Also, take the time to check out the links on Cairns and Australia below. They will take you from one end of Australia to the other! I hope you enjoy them.
Sue Bayliss. Cairns, Australia. (s.j.bayliss@bigpond.com.au)
Pain is our body’s way of telling us something is not quite right. Apart from minor bumps, scratches and small pains requiring minor relief available from a pharmacy, pain basically falls into two categories. Firstly, acute pain is sharp and severe requiring immediate emergency intervention. Secondly, long term pain or chronic pain becomes part of our life. Like all areas of ongoing situations in life, we need to plan for chronic pain. Pain requires management that not only controls the actual pain and discomfort but enhances our lifestyle.
Exercise and diet are important components to managing pain. Good general health and a positive mental and emotional outlook on life are essential for managing pain control and enjoying life. Reducing anxiety through relaxation and meditation is a helpful approach. Physiotherapy by a physiotherapist trained in techniques specific to your medical and or neurological condition may be helpful. Regardless of which physical, emotional and spiritual remedies you choose your treating specialist in consultation with your family doctor and other allied health workers are the people to be talking with about your pain control and medication management program.
Some medications can actually intensify discomfort and pain. It is possible to overdose, even on medication we think of as being very safe, such as paracetamol . Using codeine for long periods of time or unsupervised may lead to dependence, addiction or other serious medical side effects.
I hope this article is helpful. Please take time to return to the links above and save to your files if they are useful. If you would like to leave a comment or email me directly, you are most welcome. I will get back to you. Also, take the time to check out the links on Cairns and Australia below. They will take you from one end of Australia to the other! I hope you enjoy them.
Sue Bayliss. Cairns, Australia. (s.j.bayliss@bigpond.com.au)
Sunday, February 25, 2007
Support groups relieve loneliness, depression and social isolation.
Dystonia Support Groups provide a place for people with dystonia to go that is outside the formal bounds of medical teams and family structure. Members of the group offer companionship and a sense of normalization for those who are newly diagnosed or may display symptoms of dystonia but remain undiagnosed or misdiagnosed. Belonging to a group breaks down social isolation by enabling all members to develop a common bond and a focus on identified goals. Help in the way of correct information, access to resources, and hope for an improved lifestyle, is all offered through support groups.
Medical teams provide initial diagnostic procedures and crisis intervention if required, followed by a treatment plan including on-going review. The process of diagnosis can be a daunting experience for many. Retelling the history of symptoms to several medical practitioners of different disciplines may become overwhelming. It is not uncommon for patients to experience some level of depression both prior to and post diagnosis.
Most people find a support group helps relieve depressive moods and sadness by providing the companionship of other people in similar situations or with the same medical diagnosis. This experience normalizes a person’s sense of self by abolishing the barriers of isolation.
Rather than thinking they are all alone in suffering, the person with dystonia discovers the treasure of empathy from others. Social isolation quickly disappears, replaced by a sense of belonging, identification and purpose.
Belonging to a support group, being able to identify with other members and focusing on goals, empowers people with dystonia to change from feeling helpless to becoming informed, resourceful and productive in their everyday lives. Distances between support groups may prevent many people from attending. However, telephone contact and emailing are ways for people to have frequent contact with eachother. There are also on-line support groups able to provide companionship and information.
If you would like to say something about your experience of contact with a support group, press on ‘comments’ below and leave a short message. Meanwhile, check out the links below on Cairns and Australia.
Sue Bayliss. Cairns, Australia.
Medical teams provide initial diagnostic procedures and crisis intervention if required, followed by a treatment plan including on-going review. The process of diagnosis can be a daunting experience for many. Retelling the history of symptoms to several medical practitioners of different disciplines may become overwhelming. It is not uncommon for patients to experience some level of depression both prior to and post diagnosis.
Most people find a support group helps relieve depressive moods and sadness by providing the companionship of other people in similar situations or with the same medical diagnosis. This experience normalizes a person’s sense of self by abolishing the barriers of isolation.
Rather than thinking they are all alone in suffering, the person with dystonia discovers the treasure of empathy from others. Social isolation quickly disappears, replaced by a sense of belonging, identification and purpose.
Belonging to a support group, being able to identify with other members and focusing on goals, empowers people with dystonia to change from feeling helpless to becoming informed, resourceful and productive in their everyday lives. Distances between support groups may prevent many people from attending. However, telephone contact and emailing are ways for people to have frequent contact with eachother. There are also on-line support groups able to provide companionship and information.
If you would like to say something about your experience of contact with a support group, press on ‘comments’ below and leave a short message. Meanwhile, check out the links below on Cairns and Australia.
Sue Bayliss. Cairns, Australia.
Saturday, February 24, 2007
Don’t you just love it …
Rain pouring down, creepy crawlies coming into the house, dog smelling distinctively doggy, cat hiding in the kitchen cupboards, mildew growing as quickly as moisture can be wiped off everything in sight, clothes going moldy! Yes folks, we sure do have it. That good old fashioned WET SEASON IS HERE. YEA!
Among all that we had our very first Cairns Dystonia Support Group meeting today. Given the amount of water around Cairns right now, I am surprised we were able to get together at all.
Exciting things are happening. We are now officially a support group and will be writing lots more about that in coming weeks. As a bunch having lunch we munched our way through sandwiches and yummy cheesecake as we talked about all things important!
Four very brave souls sitting around the table telling yarns, sipping thickened drinks, comparing treatment experiences, practicing sticking our tongues out between our teeth and swallowing – well, trying to anyway. Sound bizarre? Sure is! However, it is also an excellent exercise for strengthening those muscles in the back wall of the throat therefore making swallowing safer and easier. Ask the speech pathologist in your medical team to show you how to do this if you are finding it difficult.
The highlight of our day was to speak on a speaker phone to a dear friend, who also has dystonia, in the US of A. We know eachother through blogging and emails. We finished by watching the amazing film, Twisted. Reluctantly, we parted with joyous hugs and feelings of solidarity between eachother. Amazingly, three of us have spasmodic dysphonia and worked together some years ago in a Government Department that is known to be one of the most stressful areas of statutory work there is.
We welcome contact from other people with dystonia. If you would like to ask any questions or just make contact, please email me at s.j.bayliss@bigpond.com.au and one of us will get back to you.
Sue Bayliss. Cairns, Australia.
Among all that we had our very first Cairns Dystonia Support Group meeting today. Given the amount of water around Cairns right now, I am surprised we were able to get together at all.
Exciting things are happening. We are now officially a support group and will be writing lots more about that in coming weeks. As a bunch having lunch we munched our way through sandwiches and yummy cheesecake as we talked about all things important!
Four very brave souls sitting around the table telling yarns, sipping thickened drinks, comparing treatment experiences, practicing sticking our tongues out between our teeth and swallowing – well, trying to anyway. Sound bizarre? Sure is! However, it is also an excellent exercise for strengthening those muscles in the back wall of the throat therefore making swallowing safer and easier. Ask the speech pathologist in your medical team to show you how to do this if you are finding it difficult.
The highlight of our day was to speak on a speaker phone to a dear friend, who also has dystonia, in the US of A. We know eachother through blogging and emails. We finished by watching the amazing film, Twisted. Reluctantly, we parted with joyous hugs and feelings of solidarity between eachother. Amazingly, three of us have spasmodic dysphonia and worked together some years ago in a Government Department that is known to be one of the most stressful areas of statutory work there is.
We welcome contact from other people with dystonia. If you would like to ask any questions or just make contact, please email me at s.j.bayliss@bigpond.com.au and one of us will get back to you.
Sue Bayliss. Cairns, Australia.
No way mate! You are kidding me, right?
‘struth mate, how on God’s earth can people who are profoundly deaf, people who are hearing impaired, and people with severe speech impairment practice active listening skills in non-verbal conversation? You have got to be joking!
No! I am fair dinkum cobber. Nodding in response to what the other person is signing, or saying things like “uh huh,” “mm,” “really,” means the person the conversant is signing to, the listener, fulfills an important role in informing the other person that he or she is being understood. Clarifying with the original signer to ensure the message has been correctly understood takes the non-verbal language skills as above, that little bit further and is reflecting to the signer that they are understood.
This ‘active listening’ behavior displays the process of responding to the overall conversation. It is listening with your eyes, the symbolic interaction of communication through signs and interpretation, according to deaf language and cultural norms.
Maintaining eye contact is a strong cultural behavior of politeness and acknowledgment of what the other person is saying. Looking away or responding in a passive way by not reassuring the signer they are being heard will terminate the conversation and be considered socially unacceptable or very rude.
Active listening as explained above is sometimes called listening with the third ear, a holistic sense of perceptiveness. Becoming involved with a group of people signing is to experience living in a truly interactive environment. Signing is rich in symbolic meaning, feeling and expression. Indeed, a ‘living’ language.
There are useful links in the above article. I hope you find the articles on sign language, specifically Auslan, interesting. The Australian Deaf community do not consider themselves disabled but rather, acknowledge their minority Deaf language and culture with pride and celebrate annually in Australia during Deaf Week. The Deaf community are very much a part of multicultural Australia's social fabric. In addition to these links, check out the links on Cairns and Australia below.
Sue Bayliss. Cairns, Australia.
No! I am fair dinkum cobber. Nodding in response to what the other person is signing, or saying things like “uh huh,” “mm,” “really,” means the person the conversant is signing to, the listener, fulfills an important role in informing the other person that he or she is being understood. Clarifying with the original signer to ensure the message has been correctly understood takes the non-verbal language skills as above, that little bit further and is reflecting to the signer that they are understood.
This ‘active listening’ behavior displays the process of responding to the overall conversation. It is listening with your eyes, the symbolic interaction of communication through signs and interpretation, according to deaf language and cultural norms.
Maintaining eye contact is a strong cultural behavior of politeness and acknowledgment of what the other person is saying. Looking away or responding in a passive way by not reassuring the signer they are being heard will terminate the conversation and be considered socially unacceptable or very rude.
Active listening as explained above is sometimes called listening with the third ear, a holistic sense of perceptiveness. Becoming involved with a group of people signing is to experience living in a truly interactive environment. Signing is rich in symbolic meaning, feeling and expression. Indeed, a ‘living’ language.
There are useful links in the above article. I hope you find the articles on sign language, specifically Auslan, interesting. The Australian Deaf community do not consider themselves disabled but rather, acknowledge their minority Deaf language and culture with pride and celebrate annually in Australia during Deaf Week. The Deaf community are very much a part of multicultural Australia's social fabric. In addition to these links, check out the links on Cairns and Australia below.
Sue Bayliss. Cairns, Australia.
Friday, February 23, 2007
URGENT NOTICE
I am aware people are trying to contact me by telephone. Due to water damaged telephone lines in our street, home connections are not reliable. My main phone keeps dropping out. I phone Telstra on my mobile and they do something at the exchange to reconnect my phone but after the next incoming call it drops out again so we repeat the whole thing. Those of you who have my mobile number are able to contact me that way. Alternatively, please leave a comment below this article or email me. Whilst my main phone line is dropping in and out, my TTY phone is not working at all. At this stage, my internet connection is still working but may drop out also. Telstra are unable to remedy the situation until early next week.
I am not complaining. At last we are experiencing a good old fashioned wet season. I am hoping people still turn up tomorrow for our Dystonia Support Group meeting. It is still on.
Sue. s.j.bayliss@bigpond.com.au
I am not complaining. At last we are experiencing a good old fashioned wet season. I am hoping people still turn up tomorrow for our Dystonia Support Group meeting. It is still on.
Sue. s.j.bayliss@bigpond.com.au
Learning Sign Language.
Deaf Services Queensland suggests students attending their classes for Australian Sign Language, Auslan, develops specific habits to enhance learning within the classroom.
Concentrating on the signers face and overall picture of conversation rather than the individual signs is an important part of active listening when engaged in a nonverbal language. Following conversations between others as much as possible is also necessary to remain within the focus of discussion. Participation in signed communication increases memory capacity and retention of signing skills. The bond developed between students within a class environment enhances learning as does signing before commencement of class and during breaks. Switching off English and voice allows students signing outside lesson time to familiarize themselves with the language and also with the cultural perspective of communication exchange in a nonverbal language.
Tomorrow I will write about active listening skills in nonverbal languages used by people who are profoundly deaf, hearing and or voice impaired. I will also write about the outcome of our Inaugural meeting for the Dystonia Support Group of Cairns. The meeting is tomorrow, Saturday 24th February, over lunch.
Sue Bayliss. Cairns, Australia.
Concentrating on the signers face and overall picture of conversation rather than the individual signs is an important part of active listening when engaged in a nonverbal language. Following conversations between others as much as possible is also necessary to remain within the focus of discussion. Participation in signed communication increases memory capacity and retention of signing skills. The bond developed between students within a class environment enhances learning as does signing before commencement of class and during breaks. Switching off English and voice allows students signing outside lesson time to familiarize themselves with the language and also with the cultural perspective of communication exchange in a nonverbal language.
Tomorrow I will write about active listening skills in nonverbal languages used by people who are profoundly deaf, hearing and or voice impaired. I will also write about the outcome of our Inaugural meeting for the Dystonia Support Group of Cairns. The meeting is tomorrow, Saturday 24th February, over lunch.
Sue Bayliss. Cairns, Australia.
Thursday, February 22, 2007
Would you like to learn sign language?
The best way to learn sign language as a second language is to jump right into using it! Scary? You bet it is!
As Australian sign language (Auslan) is not a written language, the symbols of communication exchange can not be jotted down and read. Certainly, learning any new language skills is easier with appropriate tuition from someone who understands the norms of the society using that language. Also important are the finer points of cultural etiquette. This is particularly so for any signed language.
The use of naughty words and embarrassing gaffs is just as common when learning signing as with any language. Child like though it may be, it seems those kinds of words or signs are easier to remember than the more formal use of language. This is why it is so important for the serious student to learn from a tutor or signer prepared to act as the model from whom the student learns the formations, expression, movement, appropriate position within body space, stress, duration, sequences of movement etc.
Moving from an auditory language to a visual language within a ‘visual world’ or visual environment can be a daunting experience for hearing people. By switching off voice when walking through the door to class, the student really does become more dependent on the visual medium.
All communication, verbal or nonverbal, is an exchange of symbols including expression and body stance. In verbal languages we tend to forget we are constantly applying strategies to successfully communicate our messages. We encode our thoughts to dialogue that is spoken by one person, received by the listener, ‘decoded’, then reply is encoded before transferring verbally back to the original sender. This strategy develops the ebb and flow of dialogue, attention and body movement, between people.
Learning communication exchange with nonverbal language requires strategies just as learning another verbal language does. Listeners in a conversation of signed language have very active roles. Tomorrow I will write about some helpful strategies for learning Auslan.
Until tomorrow, wherever you are, have a great day and maybe observe how others communicate around you and how you communicate with others. Leave a comment if you wish or email me. (s.j.bayliss@bigpond.com.au)
Sue Bayliss. Cairns, Australia.
As Australian sign language (Auslan) is not a written language, the symbols of communication exchange can not be jotted down and read. Certainly, learning any new language skills is easier with appropriate tuition from someone who understands the norms of the society using that language. Also important are the finer points of cultural etiquette. This is particularly so for any signed language.
The use of naughty words and embarrassing gaffs is just as common when learning signing as with any language. Child like though it may be, it seems those kinds of words or signs are easier to remember than the more formal use of language. This is why it is so important for the serious student to learn from a tutor or signer prepared to act as the model from whom the student learns the formations, expression, movement, appropriate position within body space, stress, duration, sequences of movement etc.
Moving from an auditory language to a visual language within a ‘visual world’ or visual environment can be a daunting experience for hearing people. By switching off voice when walking through the door to class, the student really does become more dependent on the visual medium.
All communication, verbal or nonverbal, is an exchange of symbols including expression and body stance. In verbal languages we tend to forget we are constantly applying strategies to successfully communicate our messages. We encode our thoughts to dialogue that is spoken by one person, received by the listener, ‘decoded’, then reply is encoded before transferring verbally back to the original sender. This strategy develops the ebb and flow of dialogue, attention and body movement, between people.
Learning communication exchange with nonverbal language requires strategies just as learning another verbal language does. Listeners in a conversation of signed language have very active roles. Tomorrow I will write about some helpful strategies for learning Auslan.
Until tomorrow, wherever you are, have a great day and maybe observe how others communicate around you and how you communicate with others. Leave a comment if you wish or email me. (s.j.bayliss@bigpond.com.au)
Sue Bayliss. Cairns, Australia.
Wednesday, February 21, 2007
DYSTONIA SUPPORT GROUP OF CAIRNS
INAUGURAL MEETING
The Dystonia Support Group of Cairns will hold its inaugural meeting on Saturday, 24th February at 5 Compass Close, Edge Hill, Cairns. The Meeting will commence at 11.00AM, concluding no later than 1.30PM. Lunch provided. Sufferers, carers, family members are invited to attend. For further details please contact Sue Bayliss, 40324033 or email, s.j.bayliss@bigpond.com.au.
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.
Spasmodic dysphonia, cervical dystonia, blepharospasm, writers cramp, and early-onset dystonia are all different forms of dystonia.
Spasmodic dysphonia, also known as (aka) laryngeal dystonia, is a focal form of dystonia involving involuntary “spasms” of the vocal cords causing interruptions of speech affecting voice quality.
Cervical dystonia, aka spasmodic torticollis, is a focal dystonia characterized by neck muscles contracting involuntarily, causing abnormal movements and posture of the head and neck. Spasms in the muscles or pinching nerves in the neck can result in considerable pain and discomfort.
Blepharospasm is a focal dystonia characterized by increased blinking and involuntary closing of the eyes. People with blepharospasm have normal vision. Visual disturbance is due solely to the forced closure of the eyelids.
Writer’s cramp is a task-specific focal dystonia of the hand. Symptoms usually appear when a person is trying to do a task that requires fine motor movements. The symptoms may appear only during a particular type of movement, such as writing or playing the piano, but the dystonia may spread to affect many tasks.
Early-onset dystonia (idiopathic torsion dystonia, childhood-onset dystonia, generalized dystonia) usually starts in childhood or adolescence. Symptoms typically start in one part of the body, usually in an arm or leg and can eventually spread to the rest of the body, causing it to twist into unnatural positions. It is the most common hereditary form of dystonia, resulting in most cases, from the DYT 1 gene.
Dystonia is the third most common movement disorder after Parkinson’s disease and tremor. Nonetheless, dystonia is often misunderstood by the public and misdiagnosed by medical doctors. Dystonia is neither a psychological disorder, nor does it affect intellect. Dystonia is not fatal, but it is a chronic disorder that causes varying degrees of disability and pain, from mild to severe.
If you would like to ask a question or leave a message please do so by clicking on 'comments' below. It is okay to remain anonymous. Alternatively, you are welcome to email me on
e-address above. As many of you know, sometimes I am a day late in getting back to you but I do return messages. It is good to hear from so many people. Thank you.
Sue Bayliss. Cairns, Australia.
The Dystonia Support Group of Cairns will hold its inaugural meeting on Saturday, 24th February at 5 Compass Close, Edge Hill, Cairns. The Meeting will commence at 11.00AM, concluding no later than 1.30PM. Lunch provided. Sufferers, carers, family members are invited to attend. For further details please contact Sue Bayliss, 40324033 or email, s.j.bayliss@bigpond.com.au.
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.
Spasmodic dysphonia, cervical dystonia, blepharospasm, writers cramp, and early-onset dystonia are all different forms of dystonia.
Spasmodic dysphonia, also known as (aka) laryngeal dystonia, is a focal form of dystonia involving involuntary “spasms” of the vocal cords causing interruptions of speech affecting voice quality.
Cervical dystonia, aka spasmodic torticollis, is a focal dystonia characterized by neck muscles contracting involuntarily, causing abnormal movements and posture of the head and neck. Spasms in the muscles or pinching nerves in the neck can result in considerable pain and discomfort.
Blepharospasm is a focal dystonia characterized by increased blinking and involuntary closing of the eyes. People with blepharospasm have normal vision. Visual disturbance is due solely to the forced closure of the eyelids.
Writer’s cramp is a task-specific focal dystonia of the hand. Symptoms usually appear when a person is trying to do a task that requires fine motor movements. The symptoms may appear only during a particular type of movement, such as writing or playing the piano, but the dystonia may spread to affect many tasks.
Early-onset dystonia (idiopathic torsion dystonia, childhood-onset dystonia, generalized dystonia) usually starts in childhood or adolescence. Symptoms typically start in one part of the body, usually in an arm or leg and can eventually spread to the rest of the body, causing it to twist into unnatural positions. It is the most common hereditary form of dystonia, resulting in most cases, from the DYT 1 gene.
Dystonia is the third most common movement disorder after Parkinson’s disease and tremor. Nonetheless, dystonia is often misunderstood by the public and misdiagnosed by medical doctors. Dystonia is neither a psychological disorder, nor does it affect intellect. Dystonia is not fatal, but it is a chronic disorder that causes varying degrees of disability and pain, from mild to severe.
If you would like to ask a question or leave a message please do so by clicking on 'comments' below. It is okay to remain anonymous. Alternatively, you are welcome to email me on
e-address above. As many of you know, sometimes I am a day late in getting back to you but I do return messages. It is good to hear from so many people. Thank you.
Sue Bayliss. Cairns, Australia.
Tuesday, February 20, 2007
INAUGURAL MEETING.
DYSTONIA SUPPORT GROUP
CAIRNS.
Saturday 24th February is our big day in Cairns to formalize our dystonia support group. We are meeting over lunch and watching the film Twisted. This film tells the stories about people with different kinds of dystonia, in their own words.
If anyone would like further information, please email me and I will get back to you.
Sue Bayliss. Cairns, Australia. s.j.bayliss@bigpond.com.au
DYSTONIA SUPPORT GROUP
CAIRNS.
Saturday 24th February is our big day in Cairns to formalize our dystonia support group. We are meeting over lunch and watching the film Twisted. This film tells the stories about people with different kinds of dystonia, in their own words.
If anyone would like further information, please email me and I will get back to you.
Sue Bayliss. Cairns, Australia. s.j.bayliss@bigpond.com.au
Monday, February 19, 2007
Uh-oh! That drowning, choking thing, again.
What a combination of embarrassment and discomfort it is!
Eagerly returning home to Cairns following treatment in Brisbane for spasmodic dysphonia and also for cervical dystonia led to a fortnight of rollercoaster feelings, some confusion and that age old need of mine – to embrace humility!
The tell tale sound of high pitched but incredibly soft voice heralded the relief experienced from feeling as though I had an avocado seed stuck down my throat. How wonderful to speak with vocal cords that were not tightly spasming together. Neck and shoulder muscles relieved of spasms. However, that experience soon became overshadowed by the terribly embarrassing ‘drowning’ thing emerging with a vengeance.
You know the thing. There I sat daintily sipping my thickened tea with a friend in the shopping mall when all of a sudden it happened. Cough, cough. Gasp. Splutter, cough and splutter. Gasping for air, eyes red with tears streaming down cheeks and milky tea coming from nose and mouth, it was not a good look.
Dysphagia. Ho-hum! So, it is happening again. Hearing someone close by saying “are you okay?”
Of course I’m not flaming okay! I don’t like admitting it, that’s all! Realizing it is my own breathless sounding voice in reply, “oh, yes thank you. I’m fine. It must have gone down the wrong way.” Yeah, yeah.
Family doctor and the Cairns Base Hospital Speech Pathology Department arranged for a home visit by a speech pathologist. The outcome of this visit is providing me with the support needed at this time. Self pride and an overconfident attitude about managing my dystonia frequently brings me to face reality.
We are not expected to know all the answers. Nor are we expected to face our experiences of dystonia and also of treatment, alone. Feeling very much the little old granny I really am, I soon learned to admit that I need my drinks to look like baby cereal, my food to look like mush and my dry mouth to be swabbed with a soothing solution providing moisture relief. All in all, it surely can only get better from this point in time.
If you need assistance following treatment, please don’t be a dippy head like me. Reach out to the professional team available to you and benefit through their expertise. In addition to professional help, a support group may be of great comfort to you. Support group members are able to reassure us that we are not alone in our experiences, whatever they may be. If you live in a country other than Australia, contact the national dystonia organisation closest to you.
Please, leave a comment or email me (s.j.bayliss@bigpond.com.au) if you would like to. I will get back to you.
Sue Bayliss. Cairns, Australia.
Eagerly returning home to Cairns following treatment in Brisbane for spasmodic dysphonia and also for cervical dystonia led to a fortnight of rollercoaster feelings, some confusion and that age old need of mine – to embrace humility!
The tell tale sound of high pitched but incredibly soft voice heralded the relief experienced from feeling as though I had an avocado seed stuck down my throat. How wonderful to speak with vocal cords that were not tightly spasming together. Neck and shoulder muscles relieved of spasms. However, that experience soon became overshadowed by the terribly embarrassing ‘drowning’ thing emerging with a vengeance.
You know the thing. There I sat daintily sipping my thickened tea with a friend in the shopping mall when all of a sudden it happened. Cough, cough. Gasp. Splutter, cough and splutter. Gasping for air, eyes red with tears streaming down cheeks and milky tea coming from nose and mouth, it was not a good look.
Dysphagia. Ho-hum! So, it is happening again. Hearing someone close by saying “are you okay?”
Of course I’m not flaming okay! I don’t like admitting it, that’s all! Realizing it is my own breathless sounding voice in reply, “oh, yes thank you. I’m fine. It must have gone down the wrong way.” Yeah, yeah.
Family doctor and the Cairns Base Hospital Speech Pathology Department arranged for a home visit by a speech pathologist. The outcome of this visit is providing me with the support needed at this time. Self pride and an overconfident attitude about managing my dystonia frequently brings me to face reality.
We are not expected to know all the answers. Nor are we expected to face our experiences of dystonia and also of treatment, alone. Feeling very much the little old granny I really am, I soon learned to admit that I need my drinks to look like baby cereal, my food to look like mush and my dry mouth to be swabbed with a soothing solution providing moisture relief. All in all, it surely can only get better from this point in time.
If you need assistance following treatment, please don’t be a dippy head like me. Reach out to the professional team available to you and benefit through their expertise. In addition to professional help, a support group may be of great comfort to you. Support group members are able to reassure us that we are not alone in our experiences, whatever they may be. If you live in a country other than Australia, contact the national dystonia organisation closest to you.
Please, leave a comment or email me (s.j.bayliss@bigpond.com.au) if you would like to. I will get back to you.
Sue Bayliss. Cairns, Australia.
Sunday, February 18, 2007
Do you have a question about kidney or urinary health?
In Australia, ring the Kidney Health Information Service 1800 682 531 if you need to ask any questions about kidney disease.
TTY (Teletypewriter service) for hearing or speech impaired ring 1800 005 881.
For those of you in other countries, the information here is informative and helpful. However, look also for Kidney Disease Information links in your country of origin.
Kidney Connect
Australia’s Kidney Connect is our umbrella support program for people with kidney disease, kidney donors and recipients, their carers and family members.
Kidney Care Program: Trained Kidney Care volunteers and coordinators conduct a Dialysis Support Service, which provides support and companionship to people undergoing haemodialysis treatment in renal units throughout Australia.
Peer Support Program: Supports people living with kidney disease, kidney donors and recipients, their families and carers via TelEconnect. This national telephone and/or email peer support service connects people in need with trained Peer Support Volunteers who have similar experiences.
The following sites will link you to informative Brochures.
Kidney disease and diabetes are killers. Learn more about these diseases now.
Kidney disease – are you the one in three? Early detection and prevention is the best medicine (booklet).
Kidney health – what you should know. This 16 page booklet offers important information about keeping your kidneys healthy.
Kidney and urinary health. A brochure with good information about kidney and urinary health.
Blood pressure and kidney disease. A brochure with information on kidney health and blood pressure.
You are able to access good information on this link including some of the above.
My husband died from a combination of end stage kidney disease and end stage heart disease at the age of 67. His illness was caused by high cholesterol. My family and I are well aware of the emotional and social cost of renal disease.
Be wise. Be healthy. Learn about kidney disease and live!
Sue Bayliss. Cairns, Australia.
TTY (Teletypewriter service) for hearing or speech impaired ring 1800 005 881.
For those of you in other countries, the information here is informative and helpful. However, look also for Kidney Disease Information links in your country of origin.
Kidney Connect
Australia’s Kidney Connect is our umbrella support program for people with kidney disease, kidney donors and recipients, their carers and family members.
Kidney Care Program: Trained Kidney Care volunteers and coordinators conduct a Dialysis Support Service, which provides support and companionship to people undergoing haemodialysis treatment in renal units throughout Australia.
Peer Support Program: Supports people living with kidney disease, kidney donors and recipients, their families and carers via TelEconnect. This national telephone and/or email peer support service connects people in need with trained Peer Support Volunteers who have similar experiences.
The following sites will link you to informative Brochures.
Kidney disease and diabetes are killers. Learn more about these diseases now.
Kidney disease – are you the one in three? Early detection and prevention is the best medicine (booklet).
Kidney health – what you should know. This 16 page booklet offers important information about keeping your kidneys healthy.
Kidney and urinary health. A brochure with good information about kidney and urinary health.
Blood pressure and kidney disease. A brochure with information on kidney health and blood pressure.
You are able to access good information on this link including some of the above.
My husband died from a combination of end stage kidney disease and end stage heart disease at the age of 67. His illness was caused by high cholesterol. My family and I are well aware of the emotional and social cost of renal disease.
Be wise. Be healthy. Learn about kidney disease and live!
Sue Bayliss. Cairns, Australia.
Australians urged to register as an organ donor and give the gift of life.
Do you know 63% of all transplants are kidney-related?
The average wait for a kidney transplant in Australia is four years, with waits of up to seven years not uncommon. One person a week is dying whilst waiting for transplant, according to Kidney Health Australia.
Ann Wilson, Chief Executive Officer of Kidney Health Australia, said, “The number of new kidney failure patients commencing dialysis or transplant in 2005 was 2,210 representing an increase of 13% from the 1,950 people entering these programs in 2004. The number for 2005 was the highest ever recorded.
This is increasing pressure to lift organ donation rates with kidney transplants making up around 63% of all solid organ transplants in Australia in 2005.
Dr Tim Matthew, Medical Director of Kidney Health Australia, said that kidney transplantation is successful in 90% of cases and Australia has one of the best success rates of kidney transplant survival in the world.
“Sustained funding is needed at a federal and state level to support organ donation in hospitals which are working hard under the current collaborative program to increase the level of transplantation.”
“Patients on dialysis and their families are under great pressure waiting for the telephone call which could spell a new chance at life through a kidney transplant.”
My husband died in 2003, at 67 years of age, from a combination of end stage renal disease and end stage heart disease. My family and I are all to painfully aware of the great physical and emotional cost of kidney disease as well as the financial cost of treatment. My husband's renal failure resulted from high cholesterol.
Sue Bayliss. Cairns, Australia.
The average wait for a kidney transplant in Australia is four years, with waits of up to seven years not uncommon. One person a week is dying whilst waiting for transplant, according to Kidney Health Australia.
Ann Wilson, Chief Executive Officer of Kidney Health Australia, said, “The number of new kidney failure patients commencing dialysis or transplant in 2005 was 2,210 representing an increase of 13% from the 1,950 people entering these programs in 2004. The number for 2005 was the highest ever recorded.
This is increasing pressure to lift organ donation rates with kidney transplants making up around 63% of all solid organ transplants in Australia in 2005.
Dr Tim Matthew, Medical Director of Kidney Health Australia, said that kidney transplantation is successful in 90% of cases and Australia has one of the best success rates of kidney transplant survival in the world.
“Sustained funding is needed at a federal and state level to support organ donation in hospitals which are working hard under the current collaborative program to increase the level of transplantation.”
“Patients on dialysis and their families are under great pressure waiting for the telephone call which could spell a new chance at life through a kidney transplant.”
My husband died in 2003, at 67 years of age, from a combination of end stage renal disease and end stage heart disease. My family and I are all to painfully aware of the great physical and emotional cost of kidney disease as well as the financial cost of treatment. My husband's renal failure resulted from high cholesterol.
Sue Bayliss. Cairns, Australia.
Saturday, February 17, 2007
Don’t take them with you mate, please!
Heaven knows, we really do need them here. From February 17th to the 24th Queenslanders Donate are celebrating Australian Organ Donor Awareness Week.
This celebration is their annual campaign to raise awareness of organ donation and to encourage people to register with the Australian Organ Donor Register.
Organ donors can save lives. Organ and tissue transplantations can help the many Australians who are suffering life threatening illnesses, including heart, kidney and liver diseases, diabetes and cystic fibrosis. There were 218 organ donors in Australia in 2004, while there are nearly 2000 Australians waiting for an organ transplant at any time. Sadly, many of these people may die waiting for a transplant.
Last month, Australian health ministers changed the Australian Organ Donor Register to a register of consent, rather than intent. This means that when a person has registered their consent through the Australian Organ Donor Register, clinicians will no longer need to seek the consent of the person’s family.
The Health Insurance Commission has useful information on the Australian Organ Donor Register.
The Australian Department of Health and Ageing releases media statements encouraging all Australians to register.
HealthInsite has a topic page on Organ Donation where you can find other useful information. (please note the dates on this site may not have been renewed. This is an annual event)
Queensland Health Events Calendar 2007-08 is a great way to catch up with some of Queensland Health's important events.
Are your kidneys ok? Do you know, 63% of all organ transplants are kidney related? Watch out for more about this tomorrow.
Sue Bayliss. Cairns, Australia.
This celebration is their annual campaign to raise awareness of organ donation and to encourage people to register with the Australian Organ Donor Register.
Organ donors can save lives. Organ and tissue transplantations can help the many Australians who are suffering life threatening illnesses, including heart, kidney and liver diseases, diabetes and cystic fibrosis. There were 218 organ donors in Australia in 2004, while there are nearly 2000 Australians waiting for an organ transplant at any time. Sadly, many of these people may die waiting for a transplant.
Last month, Australian health ministers changed the Australian Organ Donor Register to a register of consent, rather than intent. This means that when a person has registered their consent through the Australian Organ Donor Register, clinicians will no longer need to seek the consent of the person’s family.
The Health Insurance Commission has useful information on the Australian Organ Donor Register.
The Australian Department of Health and Ageing releases media statements encouraging all Australians to register.
HealthInsite has a topic page on Organ Donation where you can find other useful information. (please note the dates on this site may not have been renewed. This is an annual event)
Queensland Health Events Calendar 2007-08 is a great way to catch up with some of Queensland Health's important events.
Are your kidneys ok? Do you know, 63% of all organ transplants are kidney related? Watch out for more about this tomorrow.
Sue Bayliss. Cairns, Australia.
Friday, February 16, 2007
Did your heart miss a beat on Valentine's day?
The Australian Heart Foundation used Valentine’s Day to promote healthy heart awareness. Heart Week 2007 commences on April 29 to May 5. Heart attack is a life threatening event. Each year more than 24,000 Australians die from heart disease, mostly heart attacks.
There are many things we can do to prevent heart disease. Heart healthy living is a new quarterly health magazine offering a positive and holistic approach to preventing or living with heart disease. One in 6 people, approximately 3.67 million Australians, is affected by cardiovascular disease. Two out of three families in Australia are affected by heart, stroke and blood vessel disease.
Be heart wise and live by having an active lifestyle and healthy eating habits. Find out about the walk of life - for all walks of life . Wherever you live within Australia or in another country, the links in this article are informative and useful.
Wherever you are, don’t miss a beat today. May your heart throb rhythmically with the joy of life! Check out the great links on Cairns, Australia.
Sue Bayliss. Cairns, Australia.
There are many things we can do to prevent heart disease. Heart healthy living is a new quarterly health magazine offering a positive and holistic approach to preventing or living with heart disease. One in 6 people, approximately 3.67 million Australians, is affected by cardiovascular disease. Two out of three families in Australia are affected by heart, stroke and blood vessel disease.
Be heart wise and live by having an active lifestyle and healthy eating habits. Find out about the walk of life - for all walks of life . Wherever you live within Australia or in another country, the links in this article are informative and useful.
Wherever you are, don’t miss a beat today. May your heart throb rhythmically with the joy of life! Check out the great links on Cairns, Australia.
Sue Bayliss. Cairns, Australia.
Thursday, February 15, 2007
Signing is such a beautifully expressive language.
(if the first link goes only to the home page, enter 'symbolic interaction' into the search tab)
Have you ever looked at writing in a language you do not understand? How do you make sense out of the symbols that make words, sentences etc.? How do you communicate with other people in a ‘signed’ language? One way of describing the entwining flow of communication between individuals and society, and also between individuals in society is to understand a little about symbolic interaction.
Symbolic interactionism can be described as studying the relationship between the self and society as a process of symbolic communications between people. A symbolic interactionist may say the sense of ‘self’ is achieved through language and communication. In this way words reflect symbols representing facts and thoughts as well as feelings.
When a person learns one set of symbols of communication from infancy within their culture and family of origin they are able to communicate comfortably with those around them. However, when a person moves into another culture they are then required to learn a whole set of different language communication symbols to be able to interact with others in that culture or society. People who are deaf or have difficulty with speech form a sub-culture within their community and culture of origin. These people live in a minority group within a society based upon an auditory language. At the same time, these people rely upon a signed or visual language used to communicate with eachother.
Sign language is not universally identical. Languages that are ‘signed’ are specific to their country of origin. An example is Auslan, the official Australian Sign Language. Auslan is different to American Sign Language and both are different to British Sign Language. Sign language between Australia and New Zealand is also different. There are however, some signs that are identical or similar between Auslan, New Zealand and British sign languages.
Auslan is not a signed interpretation of English. Auslan is a recognized minority group language in Australia and has many expressions of vocabulary and grammatical rules that are different from English. Signing is a visual language using non-verbal symbols of communication. Facial expression is just as essential in signing as hand signs and body positions. All these elements of a signed language reflect a specific culture of deaf people including a small percentage of speech impaired people.
Over the coming weeks I will write more articles about signing. Specifically, I will write about my journey of discovery into a different culture within our midst. I have included some links above if you are interested in learning a little more about living and communicating within this amazing culture.
You are welcome to email me (s.j.bayliss@bigpond.com.au) or leave a comment.
Sue Bayliss. Cairns, Australia.
Have you ever looked at writing in a language you do not understand? How do you make sense out of the symbols that make words, sentences etc.? How do you communicate with other people in a ‘signed’ language? One way of describing the entwining flow of communication between individuals and society, and also between individuals in society is to understand a little about symbolic interaction.
Symbolic interactionism can be described as studying the relationship between the self and society as a process of symbolic communications between people. A symbolic interactionist may say the sense of ‘self’ is achieved through language and communication. In this way words reflect symbols representing facts and thoughts as well as feelings.
When a person learns one set of symbols of communication from infancy within their culture and family of origin they are able to communicate comfortably with those around them. However, when a person moves into another culture they are then required to learn a whole set of different language communication symbols to be able to interact with others in that culture or society. People who are deaf or have difficulty with speech form a sub-culture within their community and culture of origin. These people live in a minority group within a society based upon an auditory language. At the same time, these people rely upon a signed or visual language used to communicate with eachother.
Sign language is not universally identical. Languages that are ‘signed’ are specific to their country of origin. An example is Auslan, the official Australian Sign Language. Auslan is different to American Sign Language and both are different to British Sign Language. Sign language between Australia and New Zealand is also different. There are however, some signs that are identical or similar between Auslan, New Zealand and British sign languages.
Auslan is not a signed interpretation of English. Auslan is a recognized minority group language in Australia and has many expressions of vocabulary and grammatical rules that are different from English. Signing is a visual language using non-verbal symbols of communication. Facial expression is just as essential in signing as hand signs and body positions. All these elements of a signed language reflect a specific culture of deaf people including a small percentage of speech impaired people.
Over the coming weeks I will write more articles about signing. Specifically, I will write about my journey of discovery into a different culture within our midst. I have included some links above if you are interested in learning a little more about living and communicating within this amazing culture.
You are welcome to email me (s.j.bayliss@bigpond.com.au) or leave a comment.
Sue Bayliss. Cairns, Australia.
Wednesday, February 14, 2007
There is more than one way to voice an opinion!
Having a funny voice and a twisted neck doesn’t mean I can’t enjoy settling into a great new year! The only problem has been limitation of speech and a big pain in the neck. However, that is all under control. Not only has botox therapy relieved the tight spasms of speech and the pains in my neck and shoulders, I have returned to sign language classes. I must admit, I do need to ‘reframe’ many of my signs or should I say gestures? Sheer frustration gets the better of me most of the time and my signing means something else altogether!
Returning to Auslan (Australian Sign Language) classes offers me significant hope of managing the frustration associated with difficult voice and a body that just does not go into the shape it is meant to. Like riding a bicycle, lots of signing skills came flooding back into my mind. The problem with that being my dreadful clumsiness and inability to coordinate my fingers and hands mean the signs I intend to make actually mean something else at most inconvenient times!
People suffering from Dystonia including spasmodic dysphonia will know exactly what I mean. In coming weeks I will write about my journey along a pathway of discovery as my son and I travel further into that wonderfully diverse world of language.
Before we get too far along the adventurous path of signing, I would like to tell you a little about symbolic interaction theory, otherwise recognized as the development of society through the limitless interaction between individuals. Tomorrow, I will write about symbolic interaction as a way of explaining communication. Until then, you may recall a favorite book or movie that has impressed you with examples of different kinds of communication.
For those reading buffs or even movie fans, Clan of the Cave Bear by Jean M. Auel is a good example of using communication very differently to how we commonly think of communication.
Leaving you with food for thought.
Sue Bayliss. Cairns, Australia.
Returning to Auslan (Australian Sign Language) classes offers me significant hope of managing the frustration associated with difficult voice and a body that just does not go into the shape it is meant to. Like riding a bicycle, lots of signing skills came flooding back into my mind. The problem with that being my dreadful clumsiness and inability to coordinate my fingers and hands mean the signs I intend to make actually mean something else at most inconvenient times!
People suffering from Dystonia including spasmodic dysphonia will know exactly what I mean. In coming weeks I will write about my journey along a pathway of discovery as my son and I travel further into that wonderfully diverse world of language.
Before we get too far along the adventurous path of signing, I would like to tell you a little about symbolic interaction theory, otherwise recognized as the development of society through the limitless interaction between individuals. Tomorrow, I will write about symbolic interaction as a way of explaining communication. Until then, you may recall a favorite book or movie that has impressed you with examples of different kinds of communication.
For those reading buffs or even movie fans, Clan of the Cave Bear by Jean M. Auel is a good example of using communication very differently to how we commonly think of communication.
Leaving you with food for thought.
Sue Bayliss. Cairns, Australia.
Tuesday, February 13, 2007
Chronic Obstructive Pulmonary Disease.
COPD is the acronym for chronic obstructive pulmonary disease, a name referring to a group of respiratory diseases. These diseases are characterized by resistance to airflow. Resistance may result from the following causes:
Asthma and bronchitis / mucus blockage / smooth muscle spasm / constricted airways.
Emphysema / lack of elastic recoil in the lungs / airway inflammation / destruction of air sacs (alveoli) in lungs and small airways (bronchioles).
Airway blockage resulting from repeated exposure to dust, pet dander or other irritants causing swelling and clogging with mucous / chronic bronchitis.
These are only some of the more common causes of COPD. If you are concerned for your own health, for someone in your family, talk to your family doctor.
If you are diagnosed with any form of dystonia and you suspect you may also have lung disease, get it checked out as a matter of urgency. Dystonic muscles make everyday living difficult without the added concern about a lung condition.
It is also possible that dystonia will compound any lung disorder if you suffer with dysphagia or spasming diaphragm muscles.
Follow the links above for more information about lung disease, dysphagia and dystonia.
Wherever you are breathe freely, swallow safely, live with hope and enjoy your day!
Sue Bayliss. Cairns Australia.
Monday, February 12, 2007
Muscles spasming? Do the old RSN trick, now!
Okay, okay. I have heard all the acronyms before. They really annoy me. I get in a fluster just trying to remember what they all mean. This is enough to get me feeling stressed and fed up with it all. I can feel my neck and shoulder muscles tightening. When I go to say something I’ve got a funny voice! Dear God! Will it ever end? I really need to dig into my emotional toolbox for some Reduce Stress Now formula.
Beyondblue’s Fact Sheet number 6 says “stress is a response to an event or situation. It can be positive or negative. Stress is common in daily life and may be associated with work, family or personal relationships. It usually means that something is happening that is causing worry and affecting how we are thinking and feeling.”
By following the link in the first paragraph and downloading the above mentioned Fact Sheet 6, you are able to explore simple ways to reduce stress in your life right now. The exercises are simple, able to be done in privacy, at work, in a group or wherever you are at the time when you need to do one or more RSN exercise such as:
- Slow breathing exercise.
- Muscle tension exercise.
- Muscle relaxation exercise.
This Fact Sheet includes other information about stress management strategies and lifestyle. Whilst you are in the Beyondblue site, take time to check out the Home page and other great fact sheets they have. Printing them and putting in a folder makes a good resource pack.
Hopefully, when I return to Brisbane for my next treatment for spasmodic dysphonia and also for cervical dystonia I will be relaxed enough to not swallow while the needle is stuck through the front of my throat into my vocal cords. That is most definitely when I need to remember the old RSN routine!
Sue Bayliss. Cairns, Australia.
Beyondblue’s Fact Sheet number 6 says “stress is a response to an event or situation. It can be positive or negative. Stress is common in daily life and may be associated with work, family or personal relationships. It usually means that something is happening that is causing worry and affecting how we are thinking and feeling.”
By following the link in the first paragraph and downloading the above mentioned Fact Sheet 6, you are able to explore simple ways to reduce stress in your life right now. The exercises are simple, able to be done in privacy, at work, in a group or wherever you are at the time when you need to do one or more RSN exercise such as:
- Slow breathing exercise.
- Muscle tension exercise.
- Muscle relaxation exercise.
This Fact Sheet includes other information about stress management strategies and lifestyle. Whilst you are in the Beyondblue site, take time to check out the Home page and other great fact sheets they have. Printing them and putting in a folder makes a good resource pack.
Hopefully, when I return to Brisbane for my next treatment for spasmodic dysphonia and also for cervical dystonia I will be relaxed enough to not swallow while the needle is stuck through the front of my throat into my vocal cords. That is most definitely when I need to remember the old RSN routine!
Sue Bayliss. Cairns, Australia.
Is cervical dystonia caused by stress?
The answer to this frequently asked question is answered by the Australian Spasmodic Torticollis Association (ASTA) as follows.
There is no evidence that cervical dystonia is caused by stress although just as with many movement disorders the symptoms are often made worse when the patient is under stress.
So what does cause cervical dystonia (CD)?
The ASTA further states,
The cause of CD is unknown but it is widely accepted that the area of the brain known as the basal ganglia is implicated in the condition.
The basal ganglia is in the inner grey matter of the brain and acts somewhat like a computer as it sorts messages from the brain and directs the action of nerves and muscles using chemical messengers called neurotransmitters.
There is thought to be an imbalance in these neurotransmitters in patients with CD.
At present research is being done on hereditary factors of the condition.
Certain types of dystonia are known to have a genetic basis, in particular generalized dystonia in children but there has been recent interest in genetic factors in the focal dystonias of which CD is one.
As many of us know from our own experiences, symptoms of CD and also other forms of dystonia may intensify significantly when we are experiencing elevated levels of stress. Therefore, applying behavioral strategies in stressful experiences may well assist us to manage our dystonia.
When things do not go as we hope in our day to day lives it does not help to think it is our entire fault. One Stress Management Team says,
Blame is a senseless action. You are the master of your own destiny, you can achieve whatever you desire and the only force that stands in your way is your own fear. So utilize your power to decide and do it.
The stress management team also offers effective ways to manage stress by discussing,
- Definition of stress.
- Causes of stress.
- The consequences of stress.
The three highlighted links above lead to more interesting information relating to this article. I hope they are useful to you. You are welcome to leave a comment or contact me by email: s.j.bayliss@bigpond.com.au - I will get back to you.
Sue Bayliss. Cairns, Australia.
There is no evidence that cervical dystonia is caused by stress although just as with many movement disorders the symptoms are often made worse when the patient is under stress.
So what does cause cervical dystonia (CD)?
The ASTA further states,
The cause of CD is unknown but it is widely accepted that the area of the brain known as the basal ganglia is implicated in the condition.
The basal ganglia is in the inner grey matter of the brain and acts somewhat like a computer as it sorts messages from the brain and directs the action of nerves and muscles using chemical messengers called neurotransmitters.
There is thought to be an imbalance in these neurotransmitters in patients with CD.
At present research is being done on hereditary factors of the condition.
Certain types of dystonia are known to have a genetic basis, in particular generalized dystonia in children but there has been recent interest in genetic factors in the focal dystonias of which CD is one.
As many of us know from our own experiences, symptoms of CD and also other forms of dystonia may intensify significantly when we are experiencing elevated levels of stress. Therefore, applying behavioral strategies in stressful experiences may well assist us to manage our dystonia.
When things do not go as we hope in our day to day lives it does not help to think it is our entire fault. One Stress Management Team says,
Blame is a senseless action. You are the master of your own destiny, you can achieve whatever you desire and the only force that stands in your way is your own fear. So utilize your power to decide and do it.
The stress management team also offers effective ways to manage stress by discussing,
- Definition of stress.
- Causes of stress.
- The consequences of stress.
The three highlighted links above lead to more interesting information relating to this article. I hope they are useful to you. You are welcome to leave a comment or contact me by email: s.j.bayliss@bigpond.com.au - I will get back to you.
Sue Bayliss. Cairns, Australia.
Sunday, February 11, 2007
Twisted. Living with cervical dystonia and spasmodic dysphonia.
Have you seen this film?
Twisted is a film by Laurel Chiten, produced by Blind Dog Films . This story is about people living with the neurological disorder, dystonia. The experience of being trapped inside your body and thinking about what will set you free is told in the words of people living with cervical dystonia (CD) and one woman, a radio presenter, living and working with spasmodic dysphonia (SD), a form of dystonia affecting vocal cords. Laurel Chiten, the filmmaker also tells a little about her own experiences of living with CD.
A film review by The Santa Fe New Mexican on the back of the DVD cover says, “… Twisted is a success. Not only because of the filmmakers personal connection to the topic but because of the film’s fascinating and complex cast of characters. Its funky enough to be an art-house flick and brimming with larger themes about how people set themselves free. Part joy, part despair, TWISTED also explores the wonders and limitations of medical breakthroughs.”
If you would like to read a little about the lives of the people featuring in star roles of Twisted, this link will take you to them.
This film reveals inspiring stories of courage, determination and willpower. There is something for everybody. It is suitable for personal collection, continuing professional education, and support group meetings. You can order the film on-line, wherever you live. Just follow the above link to Blind Dog Films.
Sue Bayliss. Cairns, Australia.
Twisted is a film by Laurel Chiten, produced by Blind Dog Films . This story is about people living with the neurological disorder, dystonia. The experience of being trapped inside your body and thinking about what will set you free is told in the words of people living with cervical dystonia (CD) and one woman, a radio presenter, living and working with spasmodic dysphonia (SD), a form of dystonia affecting vocal cords. Laurel Chiten, the filmmaker also tells a little about her own experiences of living with CD.
A film review by The Santa Fe New Mexican on the back of the DVD cover says, “… Twisted is a success. Not only because of the filmmakers personal connection to the topic but because of the film’s fascinating and complex cast of characters. Its funky enough to be an art-house flick and brimming with larger themes about how people set themselves free. Part joy, part despair, TWISTED also explores the wonders and limitations of medical breakthroughs.”
If you would like to read a little about the lives of the people featuring in star roles of Twisted, this link will take you to them.
This film reveals inspiring stories of courage, determination and willpower. There is something for everybody. It is suitable for personal collection, continuing professional education, and support group meetings. You can order the film on-line, wherever you live. Just follow the above link to Blind Dog Films.
Sue Bayliss. Cairns, Australia.
Saturday, February 10, 2007
Together we are walking along the pathway of life.
Supporting each other is so important.
Three people are meeting in Cairns, Far North Queensland, Australia, on Saturday 24th February 2007 to form a support group for people with dystonia in our part of the world. I am one of these people. We are meeting over lunch, viewing the film Twisted. One person from another country other than ours will be joining us briefly by speaker ‘phone. Together, we hope to share our sorrows and celebrate our joys. As well as supporting each other, we are planning ways to provide information within our respective communities about dystonia. If you would like to share our experience please leave a comment or contact me by email at s.j.bayliss@bigpond.com.au so I can get back to you.
Have you ever been in a group of people but felt uncomfortable or out of place? Having dystonia feels something like that. Especially if you have not yet been diagnosed and wonder what is wrong.
Following diagnosis many of us still have moments when we feel excluded. This may be because of how we sound, look, head wobbling, hand tremor or our body twisting into awkward and painful positions. Some people have a combination of some or all of these things. There is nothing wrong with our thought processes or our intellect. Many of us experience others doubting the existence of our neurological disease and not understanding the debilitating effects we live with. This is especially distressing when some medical practitioners and other health workers imply that we are somehow neurotic or pretending to have symptoms that do not really exist. It really does happen!
Fortunately, our personal family doctors and teams of treating specialists around the world become very familiar with our experiences. They are able to offer treatment for the symptoms we have and encourage us to normalize our lifestyle. Their support is so uplifting, enabling us to learn together about dystonia.
If you would like to know more about support groups and general information about dystonia, the following links may be helpful. Although some of these sites overlap, you will find further links within each of these. Meanwhile stay safe, healthy and happy, wherever you are.
Sue Bayliss. Cairns, Australia.
http://www.dystoniaaustralia.org.au
http://www.asta.asn.au
http://www.dysphonia.org/support
http://www.dystonia.org.uk
http://www.spasmodictorticollis.org
http://www.dystonia-bb.org
http://www.dystonia-foundation.org
Three people are meeting in Cairns, Far North Queensland, Australia, on Saturday 24th February 2007 to form a support group for people with dystonia in our part of the world. I am one of these people. We are meeting over lunch, viewing the film Twisted. One person from another country other than ours will be joining us briefly by speaker ‘phone. Together, we hope to share our sorrows and celebrate our joys. As well as supporting each other, we are planning ways to provide information within our respective communities about dystonia. If you would like to share our experience please leave a comment or contact me by email at s.j.bayliss@bigpond.com.au so I can get back to you.
Have you ever been in a group of people but felt uncomfortable or out of place? Having dystonia feels something like that. Especially if you have not yet been diagnosed and wonder what is wrong.
Following diagnosis many of us still have moments when we feel excluded. This may be because of how we sound, look, head wobbling, hand tremor or our body twisting into awkward and painful positions. Some people have a combination of some or all of these things. There is nothing wrong with our thought processes or our intellect. Many of us experience others doubting the existence of our neurological disease and not understanding the debilitating effects we live with. This is especially distressing when some medical practitioners and other health workers imply that we are somehow neurotic or pretending to have symptoms that do not really exist. It really does happen!
Fortunately, our personal family doctors and teams of treating specialists around the world become very familiar with our experiences. They are able to offer treatment for the symptoms we have and encourage us to normalize our lifestyle. Their support is so uplifting, enabling us to learn together about dystonia.
If you would like to know more about support groups and general information about dystonia, the following links may be helpful. Although some of these sites overlap, you will find further links within each of these. Meanwhile stay safe, healthy and happy, wherever you are.
Sue Bayliss. Cairns, Australia.
http://www.dystoniaaustralia.org.au
http://www.asta.asn.au
http://www.dysphonia.org/support
http://www.dystonia.org.uk
http://www.spasmodictorticollis.org
http://www.dystonia-bb.org
http://www.dystonia-foundation.org
Friday, February 9, 2007
Irresistible femme fatale?
Oh how I wish but regrettably, no. Just a funny voice and a pain in the neck.
Simply, the voice of post treatment phase when living with dystonia. Specifically, laryngeal dystonia also known as spasmodic dysphonia, and cervical dystonia also known as spasmodic torticollis requiring treatment with botulinum toxin injections into the appropriate muscles.
With soft, breathy sounding voice, I returned to the Royal Brisbane and Women’s Hospital two days after receiving treatment for spasmodic dysphonia in the Ear, Nose and Throat Botox Clinic. On this second occasion, I received treatment in the Neurology Department Botox clinic for cervical dystonia. Feeling the effects of bruising and the stress associated with this treatment, it was indeed a good feeling to be heading out of the hospital and off to the airport for the two hour plus trip home to Cairns in Far North Queensland (FNQ).
There has been torrential monsoon rains in FNQ for the past week. Cyclonic weather resulted in wide spread flooding throughout the region and made for pretty harrowing flying conditions. How wonderful that feeling of getting through the door of home sweet home!
Arriving home brought a magnitude of thoughts and feelings to mind and body. No vocal spasms when speaking. However, the tight spasms and broken voice now transformed into soft and sometimes highly pitched sounds that are the confirmation of successful reaction to Botox treatment. Along with that comes the dysphagia resulting in thickening drinks and liquid type foods. This is a small price to pay for ease of speech. Feelings of comfort and relief from painfully twisted neck and tightness of shoulders seems to drape me like a cloak of soft velvet. Yes, it is so good to be home.
Thoughts creep into mind about the need to travel several times a year for treatment. The distance is approximately 3,200 kilometers, round trip. Brisbane is a welcoming city. Medical facilities are available. Transport is excellent. Appropriate services are there. Recreational opportunities abound. There is family support from close family members and also extended family. The needs of people living with dystonia are so much easier to provide for in a city where treatment is available. These kinds of thoughts become temptations to act.
Many people living in non-metropolitan cities as well as rural and isolated areas face difficult decisions about meeting their medical needs and also their social needs. Home and family presents as a pull factor just as the lack of medical services in some geographical areas becomes a push factor in decision making. This may present some people with an experience of personal conflict.
Living with any disability is not just about the disability. The experience encompasses a multitude of factors requiring decisions that would not otherwise need to be made. In relation to dystonia, becoming more aware of this neurological condition and supporting research in your own country will lead to curing dystonia rather than treating the symptoms. Watch out for public campaigns focusing on dystonia during 2007 and consider giving your support in what ever way you can. Many people both now and in future generations will really appreciate your efforts. If you would like to comment, please leave a message. Alternatively, I am happy to hear from you by email at s.j.bayliss@bigpond.com.au and I will get back to you.
I hope the many links in this article are of interest to you. Wherever you are, I hope your day is full of happiness and joy.
Sue Bayliss. Cairns, Australia.
Simply, the voice of post treatment phase when living with dystonia. Specifically, laryngeal dystonia also known as spasmodic dysphonia, and cervical dystonia also known as spasmodic torticollis requiring treatment with botulinum toxin injections into the appropriate muscles.
With soft, breathy sounding voice, I returned to the Royal Brisbane and Women’s Hospital two days after receiving treatment for spasmodic dysphonia in the Ear, Nose and Throat Botox Clinic. On this second occasion, I received treatment in the Neurology Department Botox clinic for cervical dystonia. Feeling the effects of bruising and the stress associated with this treatment, it was indeed a good feeling to be heading out of the hospital and off to the airport for the two hour plus trip home to Cairns in Far North Queensland (FNQ).
There has been torrential monsoon rains in FNQ for the past week. Cyclonic weather resulted in wide spread flooding throughout the region and made for pretty harrowing flying conditions. How wonderful that feeling of getting through the door of home sweet home!
Arriving home brought a magnitude of thoughts and feelings to mind and body. No vocal spasms when speaking. However, the tight spasms and broken voice now transformed into soft and sometimes highly pitched sounds that are the confirmation of successful reaction to Botox treatment. Along with that comes the dysphagia resulting in thickening drinks and liquid type foods. This is a small price to pay for ease of speech. Feelings of comfort and relief from painfully twisted neck and tightness of shoulders seems to drape me like a cloak of soft velvet. Yes, it is so good to be home.
Thoughts creep into mind about the need to travel several times a year for treatment. The distance is approximately 3,200 kilometers, round trip. Brisbane is a welcoming city. Medical facilities are available. Transport is excellent. Appropriate services are there. Recreational opportunities abound. There is family support from close family members and also extended family. The needs of people living with dystonia are so much easier to provide for in a city where treatment is available. These kinds of thoughts become temptations to act.
Many people living in non-metropolitan cities as well as rural and isolated areas face difficult decisions about meeting their medical needs and also their social needs. Home and family presents as a pull factor just as the lack of medical services in some geographical areas becomes a push factor in decision making. This may present some people with an experience of personal conflict.
Living with any disability is not just about the disability. The experience encompasses a multitude of factors requiring decisions that would not otherwise need to be made. In relation to dystonia, becoming more aware of this neurological condition and supporting research in your own country will lead to curing dystonia rather than treating the symptoms. Watch out for public campaigns focusing on dystonia during 2007 and consider giving your support in what ever way you can. Many people both now and in future generations will really appreciate your efforts. If you would like to comment, please leave a message. Alternatively, I am happy to hear from you by email at s.j.bayliss@bigpond.com.au and I will get back to you.
I hope the many links in this article are of interest to you. Wherever you are, I hope your day is full of happiness and joy.
Sue Bayliss. Cairns, Australia.
Wednesday, February 7, 2007
Update on Sue's Arrival Home
Have just heard from Mum. She's having the last of her Botox injections today and has managed to get a flight home this evening. Her voice has that high pitched, "Helium sucking," soft sound that occurs after the injections into her vocal chordsNo doubt she'll back to blogging on Thursday.
Photo courtesy of kotz at SXC Photo Exchange
Photos of Sue (posted by Megan)
Once again, in Mum's absence (and because I have access to the photo's), I thought I would post some photos of Mum taken on Christmas Day, 2006. Given that some of Mum's extended family in Sydney and England log into the site, the photos make for a nice update.
Although her disability is severe, she manages well with the help of her flowery walking stick (never far from her side), my bother Darren and her food and drink thickener.
I hope you enjoy them. Megan Bayliss
P.S: We call Mum, "Grandma" whenever the kids are around. That's why I've titled the photos as Grandma.
Grandma Bayliss with Boy and son-in-law.
Grandma about to open one of her gifts from the family in England . She was mouthing, "From England," because her voice was weak on Christmas Day.
Grandma and her presents from her cousins in England. It was difficult for Grandma to hold everything in place while I took the photo.
Grandma don't you dare waste those prawns by choking on them!!!!
Monday, February 5, 2007
Sue Away Until Saturday
Sue has asked me to let you all know that she is held up in Brisbane (pictured). She flew down on Sunday for her regular Botox injections into her throat. The intention was to return on Tuesday morning.Alas, she has had to go to a different part of the hospital for treatment and her stay has had to be extended. She will not be back in Cairns until Friday evening.
To add to her distress, all the hotels in Brisbane were booked out and she is having to stay somewhere different each night.
Megan (Sue's daughter)
Saturday, February 3, 2007
READ ALL 'BOUT IT. PAPER. READ ALL 'BOUT IT. GET YOUR PAPER 'ERE
Alright! Alright! So what's all the din about Mate?
Why! Didn’t ya hear me cobber?
Human Papilloma Virus (HPV) vaccines. That’s what! Big news, Mate. Got it ‘ere in Oz first ya know. Stone the crows. Don’t yous know nothin, Mate?
This vaccine has the potential to save many lives from the ravages of cervical cancer. Controversial? It may be. This topic is well publicized by the media.
Media reports reflect concerns stated by some parents in the USA that allowing such a vaccine to be given to girls as young as 12 and 13 years of age may encourage promiscuity. At present time, there is no evidence to base these concerns upon.
In Australia, there is a strategic plan to vaccinate young women by targeting three groups. Firstly, an ongoing target group of 12 and 13 year old girls through a school-based program (this has already commenced). Secondly, a catch-up group of 13 to 18 year old girls predominately in a school-based program and thirdly, a further catch-up group of young women up to and including 26 years of age in a community based program.
Read for yourself, allowing you to make an informed opinion on this topic. This first link includes links to other articles, including this second link. The information in these links refers to Australia. However, wherever you live, be informed then consider your choices in consultation with the young women in your family and also in relation to the legal status of this vaccine in your country.
If you would like to leave a comment, please do. I will be away from Sunday morning 4th February to Tuesday morning 6th February, inclusive. However, following my return, I am happy to answer your comments. If you prefer to contact me confidentially, my email address is s.j.bayliss@bigpond.com.au – my sister and I are survivors of cancer. Our two brothers died from cancer. As siblings, two were diagnosed with identical cancer and two of us each had different kinds of cancer.
Sue Bayliss. Cairns, Australia.
Why! Didn’t ya hear me cobber?
Human Papilloma Virus (HPV) vaccines. That’s what! Big news, Mate. Got it ‘ere in Oz first ya know. Stone the crows. Don’t yous know nothin, Mate?
This vaccine has the potential to save many lives from the ravages of cervical cancer. Controversial? It may be. This topic is well publicized by the media.
Media reports reflect concerns stated by some parents in the USA that allowing such a vaccine to be given to girls as young as 12 and 13 years of age may encourage promiscuity. At present time, there is no evidence to base these concerns upon.
In Australia, there is a strategic plan to vaccinate young women by targeting three groups. Firstly, an ongoing target group of 12 and 13 year old girls through a school-based program (this has already commenced). Secondly, a catch-up group of 13 to 18 year old girls predominately in a school-based program and thirdly, a further catch-up group of young women up to and including 26 years of age in a community based program.
Read for yourself, allowing you to make an informed opinion on this topic. This first link includes links to other articles, including this second link. The information in these links refers to Australia. However, wherever you live, be informed then consider your choices in consultation with the young women in your family and also in relation to the legal status of this vaccine in your country.
If you would like to leave a comment, please do. I will be away from Sunday morning 4th February to Tuesday morning 6th February, inclusive. However, following my return, I am happy to answer your comments. If you prefer to contact me confidentially, my email address is s.j.bayliss@bigpond.com.au – my sister and I are survivors of cancer. Our two brothers died from cancer. As siblings, two were diagnosed with identical cancer and two of us each had different kinds of cancer.
Sue Bayliss. Cairns, Australia.
Living with Dystonia and re-creating our lives.
Re-creating personal lifestyle can be full of satisfying and fulfilling activities. This is particularly so when speech is effortful, broken and exhausting, neck and shoulders painfully contorted, or other forms of dystonia are troublesome. Sometimes, our lives are not what we expected at this point in time. Looking for alternative activities and hobbies not only enable us to learn new skills or developing the skills we already have, we may also become aware of a creative, healing power within. This creativeness or re-creation of our sense of self has a powerful effect upon our perception of self-worth.
Allowing our abilities to develop, expressing a part of us that neither our self nor others have been aware, can surprise the most skeptical of personality types! Tapping into an online library or handicraft sites requires skills of computer literacy and research ability alone! However, I do hope the highlighted links to the sites in this article provide you with ideas enabling you to extend your skills or alternatively, explore new skills. This is one way people living with dystonia are able to manage the frustrations associated with daily life.
If you would like to leave a comment about what helps you, living with dystonia, I will reply. Meanwhile, in solidarity and hope let us keep on keeping on together.
Sue Bayliss. Cairns, Australia.
Allowing our abilities to develop, expressing a part of us that neither our self nor others have been aware, can surprise the most skeptical of personality types! Tapping into an online library or handicraft sites requires skills of computer literacy and research ability alone! However, I do hope the highlighted links to the sites in this article provide you with ideas enabling you to extend your skills or alternatively, explore new skills. This is one way people living with dystonia are able to manage the frustrations associated with daily life.
If you would like to leave a comment about what helps you, living with dystonia, I will reply. Meanwhile, in solidarity and hope let us keep on keeping on together.
Sue Bayliss. Cairns, Australia.
Friday, February 2, 2007
Cervical dystonia and botulinum toxin type B; what happens in the long term?
How often do we reflect upon what may happen in the future as a result of the treatment we presently receive? How much do we know about the long term effects of Botox type B treatment? Questioning our decisions and thinking about possible outcomes in relation to our choices are natural thought processes. Mostly, we have little resistance to challenging thoughts creeping into our mind during those quiet, reflective moments in time. These thoughts are sometimes intuitive, defensive, confusing.
All the above mentioned thought processes lead us toward making informed decisions about health, relationships, quality of life. Together with these cognitive functions we apply trust, enabling us to be absorbed by that welcoming aura intertwining hope and faith. We feel safe, surrounded by reassurance.
Are we prepared to expose our vulnerability by asking our treating specialist’s opinion on something we have read or heard? My personal experience is the more questions I can think of asking during treatment appointments, the more I learn from the answers I receive.
Someone brought to my notice a very interesting brief communication about an article thus leading me off on a train of thought resulting in a list of questions to ask when I go for treatment next week in Brisbane. To that person, I say thank you. Please, follow the link in this paragraph; think for yourself about what the outcome of research does for us. How we are part of the answers to questions being asked in searching for a cure for the different kinds of dystonia. As individuals, we are not alone. We are members of a global team moving forward together, supporting each other along a road of discovery, a future of hope and promise, for ourselves and those who come after us.
Please, leave a comment if you are comfortable doing so. I will get back to you. Wherever you are, have a great day.
Sue Bayliss. Cairns, Australia.
All the above mentioned thought processes lead us toward making informed decisions about health, relationships, quality of life. Together with these cognitive functions we apply trust, enabling us to be absorbed by that welcoming aura intertwining hope and faith. We feel safe, surrounded by reassurance.
Are we prepared to expose our vulnerability by asking our treating specialist’s opinion on something we have read or heard? My personal experience is the more questions I can think of asking during treatment appointments, the more I learn from the answers I receive.
Someone brought to my notice a very interesting brief communication about an article thus leading me off on a train of thought resulting in a list of questions to ask when I go for treatment next week in Brisbane. To that person, I say thank you. Please, follow the link in this paragraph; think for yourself about what the outcome of research does for us. How we are part of the answers to questions being asked in searching for a cure for the different kinds of dystonia. As individuals, we are not alone. We are members of a global team moving forward together, supporting each other along a road of discovery, a future of hope and promise, for ourselves and those who come after us.
Please, leave a comment if you are comfortable doing so. I will get back to you. Wherever you are, have a great day.
Sue Bayliss. Cairns, Australia.
Thursday, February 1, 2007
The dog smells and the cat's in a cupboard!
What welcome rain we are receiving here in our part of the world. Tonight we experienced a severe tropical thunder storm. Windows rattled and shook in their frames! So much for writing the article I had in mind!
We switched all the power off but did so a little late. Following the big noise and pelting monsoon rain, we put our power back on but alas, no Internet. Fortunately, our telephones are still working. Those wonderful people called Technical Support were able to talk me through getting everything working again. Although Australia has several time zones, where we live it is now 11.55PM so I am off to the land of nod.
Tomorrow, monsoon rains permitting, I will be busy blogging away - if we are not making sandbags to keep the water out!
Sue B.
We switched all the power off but did so a little late. Following the big noise and pelting monsoon rain, we put our power back on but alas, no Internet. Fortunately, our telephones are still working. Those wonderful people called Technical Support were able to talk me through getting everything working again. Although Australia has several time zones, where we live it is now 11.55PM so I am off to the land of nod.
Tomorrow, monsoon rains permitting, I will be busy blogging away - if we are not making sandbags to keep the water out!
Sue B.
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