Botox therapy: what are the occasional down sides of treatment?

Receiving botulinum toxin (botox) injections in vocal cords and also in neck/shoulder muscles for some years now reflects this writers desire for continuing treatment. Botox is a safe and effective treatment for many forms of dystonia. However, there are times when the experience is not so pleasant. Travelling long distances for treatment is anxiety provoking. Occasionally experiencing mild complications is challenging. The lack of appropriate levels of knowledge by most family doctors and allied health professionals i.e. speech pathologists, radiologists, physiotherapists etc, can be distressing.


Botox is recognised globally as an appropriate drug of choice for treating people with symptoms of dystonia. Medical evidence states risk factors are low. Over a long period of time some people may develop antibodies to this drug. Therefore, there may be a need to explore other treatment options for a minority of people. Establishing an alternative treatment plan may be hindered if a person lives a long way from the treatment centre.

In Australia, the city of Brisbane has the closest treatment centre to Cairns in Far North Queensland. Brisbane is 1,600 kilometres from Cairns thus making the return trip 3,200 kilometres. Cairns is the main city servicing vast areas of the Atherton Tablelands, Cape York Peninsula and the Torres Strait Islands. Getting around the city of Brisbane can be difficult for people from country areas and the Islands in the North. Travelling these distances means many people need to cope with climatic changes, fatigue from hours of travel, and cultural differences just to get to Cairns airport as well as anxiety about what will happen with each treatment.

Sometimes treatment is not a positive experience! It is important for non-dystonics and observers to understand the broader experiences resulting from treatment. There are indeed some rather nasty side effects many people experience at some time. Injections are not always straight forward.

For some, the breathiness following treatment for laryngeal dystonia (spasmodic dysphonia) lasts much longer than a few weeks. Also, the softness of voice may not get much louder at all. Dysphagia can be a problem after injections. Many people find it lasts only a couple of weeks. However, people who have an underlying degree of dysphagia to begin with may find botox injections make it much worse. This means some people need to have thickened fluids and soft diet at all times. There may be a need for a speech pathologist to monitor the person's swallowing by arranging barium swallow x-rays from time to time.

One of the most unpleasant side effects to vocal cord injections would have to be a painful treatment followed by bleeding. People receiving treatment for laryngeal dystonia and cervical dystonia may also experience a very dry mouth requiring clinical intervention. It is not uncommon for some people to wonder whether or not treatment is worthwhile. Fatigue resulting from speech has a huge effect on day to day life - with or without treatment.

Although it is not always smooth sailing, relaxation of spasms resulting from botox treatment seems to give enough relief for most people to persevere with their treatment schedule. It is important that family doctors and allied health professionals e.g. speech pathologists, radiologists, physiotherapists etc, understand the issues discussed here.

If you would like to comment on any treatment outcomes it is possible to do so anonymously. Click on 'comments' below. Alternatively, email me on s.j.bayliss@bigpond.com.au. I will get back to you.

Sue Bayliss. Cairns, Australia.

National Spasmodic Dysphonia Association Symposium - 5 May 2007.

The following invitation is from David Barton, President of the National Spasmodic Dysphonia Association. I have included some informative links in this article for your convenience.

Dear Members, Friends and Supporters of the NSDA,

We hope you will join us for the National Spasmodic Dysphonia Association's 2007 Symposium which is being held on Saturday, May 5, 2007 at the Crowne Plaza Hotel in White Plains, New York. The goals of the NSDA Symposium are:

To provide a learning environment in which people with Spasmodic Dysphonia may enhance their understanding of the disorder;

To facilitate an exchange of information of how to live effectively with the disorder;

To increase NSDA's capabilities in measuring and understanding the needs of its members in order to develop future programs.

This annual meeting draws together hundreds of people dealing with Spasmodic Dysphonia to hear the latest information on treatment and research while offering the opportunity to share experiences. There will be a Welcome Party on Friday, May 4, for those coming in the night before.

Speakers and panelists include (in alphabetical order):

Andrew Blitzer, M.D., St. Luke's Roosevelt Hospital, New York, NY
Jamie Koufman, M.D., The Voice Institute of New York, New York, NY
Mark LeDoux, M.D., Ph.D., University of Tennessee School of Medicine, Memphis, TN
Christy Ludlow, Ph.D, National Institute of Neurological Disease and Stroke, Bethesda, MD
Tom Murry, Ph.D., Columbia University School of Medicine, New York, NY
Michael Pitman, M.D., New York Eye and Ear Infirmary, New York, NY
Lucian Sulica, M.D., Weill-Cornell Medical Center, New York, NY
Celia Stuart, Ph.D., Head And Neck Surgical Group, New York, NY
Miodrag Velickovic, M.D., Mount Sinai Hospital, New York, NY
Peak Woo, M.D. The Grabsheid Voice Center, Mount Sinai Hospital, New York, NY

The meeting will begin at 8:45 a.m. and adjourn at 5:00 p.m. There will be panel discussions on the following topics:

Overview of Spasmodic Dysphonia
Management of Spasmodic Dysphonia
Spasmodic Dysphonia Research

Break-Out Sessions

Session I.
Treatment-Related Speech Therapy
Botulinum Toxin Injections
Surgical Procedures for SD
Treating ABductor Spasmodic Dysphonia

Session II.
Living with SD
Family and Friends - spouses, friends, and those supporting someone with SD
Young Adults - For the younger generation living with SD
Living with Spasmodic Dysphonia - Panel Discussion
Especially for SLPs - For Speech Language Pathologists

Keynote Speaker: Karen Jennings
Karen Jennings serves as the Senior Executive Vice President-Human Resources and Communications for AT&T. She is responsible for all aspects of human resources and executive support, as well as AT&T advertising, professional and technical learning programs, corporate communications and media relations, advertising and sponsorships. She assumed her current position at SBC in July 2002. She is also a member of the board of the AT&T Foundation, the philanthropic entity of AT&T Inc. Previously, Ms. Jennings served as Senior Executive Vice President - Human Resources.

In 1994, Karen developed a strangled and choked-like quality sound to her voice. With the encouragement from her peers and her determination to overcome this obstacle, Karen relentlessly sought answers and was rewarded with a relatively quick diagnosis of Spasmodic Dysphonia within 3-4 months. With treatment, Karen regained her voice, her self- assurance, and her career continued to soar. We are pleased that Karen will join us at this meeting.

CEU InformationContinuing Educational Units through the American Speech-Language-Hearing Association will be available for this meeting.

Hotel Information

The Crowne Plaza White Plains Hotel is situated in downtown White Plains, NY, which is the heart of Westchester County. This property is only 30 minutes from Manhattan by train, and the hotel is adjacent to world-class shopping at the Westchester with Neiman Marcus and Nordstrom.

The hotel also offers transportation to and from the Westchester County Airport, White Plains Metro North Train Station, as well as local businesses and attractions. New York Airports, La Guardia, JFK and Newark, are all accessible from the Crowne Plaza White Plains.

NSDA has secured a special room rate of $125 per night (plus tax). To make room reservations, please log onto:

The National Spasmodic Dysphonia Assosiation's website for full registration information.

There is a special room rate between the dates of May 2 and May 6. The NSDA has included extra days in case you would like to travel early to explore New York. You may also call the hotel directly at 914-682-0050. You will need to mention the NSD group code to secure the special group rate (click on the NSDA site above to do this).

Our hosts will be the New York City Spasmodic Dysphonia Support Group and they will be your guide for this trip. They are working on some great ideas of what to do while you are in the New York City area.

We hope you will mark this date on your calendar and plan to attend this exciting meeting!


Sincerely,

David Barton, President
National Spasmodic Dysphonia Association
E-mail: nsda@dysphonia.org
Phone: 800-795-6732
Website: http://www.dysphonia.org

If you suffer from spasmodic dysphonia and are able to attend this meeting, please consider doing so. I did not realize this meeting was coming up at the same time I booked a trip to the UK from early May until early June. I am unable to change our tickets for my family and me to travel via New York. I apologize for not attending but will be there in Spirit with you all!

Sue Bayliss. Cairns, Australia.

Do you have a funny voice? Using Auslan: Australian sign language, a minority group language other than English.

Sign language is not used exclusively by people who are deaf. This language is also very useful for people who are hearing and or voice impaired. Once a student is confident enough to use this language in public places, they are frequently surprised just how many people are familiar with both sign language symbols and finger spelling.

Auslan is officially recognized as the Deaf community’s language in Australia. As mentioned in previous articles, hearing people journeying through Auslan classes find the experience to be challenging, interesting, and loads of fun. All students in the current Deaf Services Queensland class in Cairns, Australia, have successfully completed level one introduction to Auslan. Our efforts to learn introductory level two in Auslan are progressing nicely and coming to a close with only three once weekly lessons remaining. We are encouraged to have voices ‘turned off’ during class and also during the coffee/tea break.

To date, weekly lessons have resulted in students accomplishing the following skills by signing in Auslan.

* How to make culturally appropriate introductions and gain another person’s attention.

* Hand shape: The point hand and Auslan language signing symbols associated with the point hand shape.

* Describing others: Individually using signing symbols with appropriate hand shapes describing features of a person to the class until the group correctly recognizes the person being described by the signer.

* Talking about family and occupations: Individually describing our own family group and personal occupational history to the class, receiving feed back to confirm the information given.

* Attributing qualities to others: Describing another person’s personal qualities; describing our own or someone else’s pet’s type, gender, personality and appearance; game playing in the style of charades using Auslan symbols to portray different personalities and desirable personal qualities for specific work roles.

If you are interested in learning Auslan or the official sign language in your country, find out where your nearest Deaf Services Office is and request information about language classes. Personally, sign language is a great support to me when my voice is very soft following treatment or vocal cords are spasming and others are unable to understand my speech. Sometimes, in busy or crowded areas, I choose to sign rather than attempt speech knowing others are unable to hear or understand me. If you do not yet know any formal sign language, using common sense gestures and facial expressions together with other body language soon gets your message across to others. If you suffer from spasmodic dysphonia I wish you well.

I hope this article is of interest to you. You are welcome to leave a comment or email me at s.j.bayliss@bigpond.com.au.

Sue Bayliss. Cairns, Australia.

Hey! What on earth is wrong with your eyes?

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

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

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

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

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

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

Sue Bayliss. Cairns, Australia.

Feel as though you have slogged away all day without doing anything?

I can let you into a little secret as long as we get to SHOUT IT FROM THE ROOFTOPS!

The frequent physical movements associated with dystonia can be equivalent to the effects of working out for 18 hours a day. It is even greater for people whose dystonic movements continue during sleep. For these people, the affect experienced is equal to working out for 24 hours per day.

Dystonic movements of muscular spasms and tremor may result in significant levels of fatigue and diminished stamina thus making life more difficult to get through the day. However, we need to remember there is a risk of confusing fatigue with feelings of lethargy or a lack of motivation resulting from depression or some other medical condition.

Learn more about dystonia in all its forms. These links will take you to Dystonia Australia and the Australian Spasmodic Torticollis Association. Navigate your way around these sites and you will find links to other Dystonia sites in countries around the world.

As you learn more about this neurological disease, please consider how you may assist through donation to the appropriate Dystonia organization in your country of origin. Dystonia scientists require on-going funds to help them advance research leading to finding a cure for dystonia. Until a cure is found, the only hope for sufferers of dystonia in its various forms is to receive treatment of their symptoms.

I would like to let you know, I am traveling North to the beautiful little town of Cooktown tomorrow. My son and I are visiting my husband’s grave, an Australian War Grave, and also catching up with family and friends in that area. We return to Cairns mid week and will be back blogging then. Meanwhile stay safe, stay well and stay involved with learning more about Dystonia.

Sue Bayliss, Cairns, Australia.

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)

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.

Shh! Don’t say anything to anyone, please!

Mental illness has for many generations been something most families have been reluctant to address from within their midst. Fortunately, attitudes are changing rapidly as we all become more aware of what mental illness is. In our present time, more than at any previous time in recorded history, there are fewer stigmas perpetrated against people who experience a mental illness. What is it that starts off that spark of thought within our mind about us or about a loved one? Perhaps you are aware that something is not quite right about your own behavior, thoughts and or feelings? Could it be that something is not quite right about the way someone close to you is behaving?

In Australia, there is an enormous amount of support available for people who would like to know more about mental illness. Community Mental Health Centres, Community Health Centres, General Practitioners, Hospital Social Work Departments, and also many NGO’s (Non-Government Organisations) are able to give you information, where ever you live. In Australia, SANE Australia provides good on-line information, fact sheets covering a wide range of mental illness, books to purchase and other appropriate information. Their web site is http://www.sane.org/ and for those who may be interested and live in Australia, their telephone number is 1800 18 SANE (if you do not have a keypad phone, SANE is 7263). Alternatively, you are able to access SANE Australia's Helpline via their site as stated above. SANE Australia offers information and advice between 9.00AM and 5.00PM weekdays, EST (Eastern Standard Time).

SANE Australia’s Fact Sheet 22 discusses “Something is not quite right about the way someone close to you is behaving.” This fact sheet assists you to ascertain whether or not your concern is serious or perhaps related to other factors. There are two checklists on this fact sheet to help you clarify what is normal behavior for the person you are concerned about and what behaviors you consider abnormal for that person. There is some information about alcohol and other drugs, and how these factors may have an influence on mental illness. Some really good information is included suggesting how to approach the doctor of your choice.

Where ever you live, I hope you have time to check out either this site (http://www.sane.org/) or a site belonging to a treatment or information centre nearer to you. Sometimes, it is good to just know about issues associated with mental health.

In my family, my youngest son is surviving schizophrenia. He requests that I let you know, his pathway to good mental health has been painful for him. This pathway has also been of great concern to my late husband and me as well as to the rest of our family. My son aged 36 years is now in good health. He takes a minimal amount of medication, is now my carer and also my primary support person. I am so very proud of him and of what he has achieved in his recovery from such a debilitating illness.

Good mental health to you all and please, feel free to leave a comment if you wish.

Sue Bayliss. Cairns, Australia.

TWISTED - about Cervical Dystonia. Don't miss it, where ever you are!

TWISTED and I don't mean the bitter and whats-a-name kind! 'Twisted' is the title of a film about people living with cervical dystonia and is SCREENING SOON NEAR YOU on the tele - if you live in the U.S.ofA. BUT WAIT, THERE'S MORE - YOU CAN GET IT TOO - WHERE EVER YOU ARE. Technology - you've gota love it, 'ay!

With a BIG THANK YOU to Maria who left a comment on a recent blog, we are able to purchase this excellent film on DVD, where ever we may be, through www.blinddogfilms.com/twisted so I got right in there and ordered and paid for mine today, all online!

WHAT A GREAT RESOURCE TO HAVE. I'll do the pop corn thingy and you bring the tissues!

Enjoy your day, where ever you are.

Sue Bayliss.

Cairns,

Far North Queensland,

Australia.

Stress? Distress? This is not how I thought my life would be!

Dystonia! This debilitating neurological condition tends to creep into our life or into the life of a loved one thus creating feelings like amazement, annoyance, embarrassment, confusion, doubt about our own capabilities and maybe even resentment. Years ago, we may have pictured our future life being very different to what it is now. In needing to come to terms with such unexpected spasms of our vocal cords or spasms in our body muscles, we grieve what we had expected our life to have been at this point in time. We experience a form of symbolic grief. This form of grief occurs when we have lost what we had planned and or hoped for and now realize that is not how our life will be.

Grief is a healing process. A painful and emotional state which occurs in response to a significant loss. In this case, changes in body function, loss of certain lifestyles and employment prospects, loss of once hoped for experiences of ageing, losses in many areas of our lives. These experiences result in emotional, physical and spiritual, changes in our life. A time when good memories, bad memories and thoughts about previously hoped for ideals surface in our mind. An experience of sorting out our loss from feelings and thoughts of anger and hopelessness that may arise.

SOME FEELINGS:
You may experience a range of very strong, yet normal feelings resulting from symbolic grief. Some common feelings are anger, guilt and depression.

ANGER: You may feel angry with health care professionals for not being able to diagnose your dystonia in the past. Sometimes, anger can be towards those around us for not understanding what is happening. Sometimes we can be angry towards ourselves as well as others because we think we are not being believed when we attempt to explain our experience. Some people feel angry towards God for being so unfair and allowing this to happen.

GUILT: It is common for some people to think this condition is all in their head and they need to just get on with life. Some people may feel guilty because they believe their condition affects loved ones in a negative way.

DEPRESSION: This may be an ‘empty’ feeling of deep sadness and worthlessness. Fatigue. Lessened interest in pleasure and most of our usual daily activities. A strong feeling of ‘despair’.

Any of these feelings are a normal reaction to a major loss of health and lifestyle in your life. Your doctor may prescribe antidepressants as a temporary help to assist you in facing your loss of previously enjoyed power of speech or physical fitness. However, have a good talk to your doctor and beware of using medication to ‘mask’ the reality of your experience. Remember, it is healthy and normal to grieve. If you are concerned about medication becoming more than a temporary measure, professional therapeutic grief counseling addressing symbolic loss and grief is available. Your doctor can help by referring you to a professional grief counselor or therapist. This may help to assist you in working through your grief and may also assist you in deciding whether to continue with certain types of treatment. This latter concern needs to be discussed also with your consulting neurologist.

It is my hope that the above article is of assistance to you in identifying some very personal thoughts, feelings and perceptions, associated with living with dystonia in all its forms.

Tomorrow, I will write about stages of grief and how we can identify these stages within our own experiences of symbolic grief. Until then, please do leave a comment or contact me by email on s.j.bayliss@bigpond.com.au but, one more thing before I go. Maria left a comment on blog titled “So, what actually causes this Cervical Dystonia?” Maria gives information about an excellent film called ‘Twisted’ and how you can access this film. Check it out. I ordered the DVD online today through that site. Thank you Maria. Really good information to share.

Sue Bayliss,
Cairns, Australia.