Experiences with Connie Pike's Spasmodic Dysphonia Clinic
by Peter Meager, Scotland Manager, The Dystonia Society
Connie Pike is an American Speech and Language Therapist (in the USA they call them Speech Pathologists). Around three years ago, following a period of great stress and a bout of laryngitis, she developed severe Spasmodic Dysphonia (SD for short – also known as Laryngeal Dystonia). This affects the vocal cords and makes speech very difficult both for the speaker and for those trying to understand what they are saying. In an article in the Dystonia Society’s Summer 2006 Nesletter and in her book ‘Free to Speak’ she tells how she developed a non-drug, holistic programme to tackle her symptoms. She had been told that the condition was incurable and that the only treatment available was to have regular injections of Botulinum Toxin into the vocal cords.
Today you would not know she had a speech problem and she runs a clinic in her home near Tampa in Florida to treat others with SD.
Peter Meager had read the article in the Newsletter with interest but it was not until June of this year that he had the opportunity to do something about it.
“I had to go to London for a Dystonia Society Staff Meeting which coincided with a visit Connie was making to the UK. I was able to sit in on a meeting she was having with other SD sufferers in the Society’s HQ. The kind of things she was saying made sense to me and I came home wondering if it could really work. When I told my wife, Christine about it, she asked if I would go out to the States and give it a try. That thought hadn’t occurred to me and I immediately thought of all the reasons for not going. Not least among them the cost - $2,500 plus travel and accommodation. Christine said that she really thought I should go for it and that she would go with me, if that would help. So it was that we decided to break into our savings and four weeks later we were flying from Glasgow to Orlando en route for Tampa.
There were six of us at the clinic and five of us stayed in a B&B about ten minutes drive away. The other five were American ladies from various parts of the USA and all of them had symptoms much worse than mine. After all, I had been having Botulinum Toxin injections for over eleven years and when they worked my voice wasn’t too bad. I did not have a positive outcome from my last injections. I was desperate to try anything which would get me out of this cycle of injections, waiting to see if they worked, struggling when the benefits (if any) wore off and then waiting for the date of the next injections so that I could get on with my life again.
There are several elements to the Clinic Programme. First there is traditional Speech and Language Therapy carried out by Connie Pike. Then there is Optimal Breathing with Mike White who, over the last thirty years, has developed a course to improve breathing. Although this is not primarily for people with speech problems it has been found to be of great benefit to many who are having difficulty speaking. There is also a Psycho Social element and a Spiritual Element. All of this is packed into five days, so the course is quite intense.
Before setting out, each of us had sent in a case history, had watched
a DVD of breathing exercises and had completed an on-line Psycho-Social
Assessment (the Taylor-Johnson Temperament Analysis Profile).
One way of doing this is by humming. Another is by singing, making sounds with an ‘oo’ sound. We were given a book called ‘Set Your Voice Free’ by Roger Love. This has a CD with it with singing exercises for male and female voices. We practiced several of these as a group.
The breathing exercises were very intensive. We each received a gadget to measure our lung capacity and everyone improved during the five days. Another gadget helped us practicing controlled, regular breathing. We were taught how to visualize our full lungs as representing 10 and practiced speaking only between 9 and 5. (When your lungs are almost half empty, you stop and take a fresh breath but exhale a little before starting to speak again. Initiating speech with a soft ‘mmm’ can help avoid a spasm kicking in for some people with adductor SD.)
We also had a PC programme called ‘Voice Print’. You use this on your pc with a microphone. It allows you to check voice quality and that you are speaking at the correct pitch. (speaking at too high or too low a pitch for a protracted period can trigger SD).
It was during one of the one-to-one breathing sessions with Mike White that the breakthrough came for me. One second there was the tight, strained, rasping, breathy voice and the next there was a deep, free resonant sound, filling the room where we were working. I stopped and exclaimed, ‘Where did that come from?’ Then I cried. It was like meeting a long lost friend. I could hardly remember having been able to make that kind of sound. After that I had to start learning to use this new voice for speaking. By the end of the Clinic each of us had seen some improvement in our voices.
The Psycho-Social assessment involved going over the results of the on-line assessment with a Counselor. The thinking behind this is that there can often be an emotional or psychological component to SD. This session helped us to address any aspect of our lives in this category which might be affecting our condition.
The Spiritual side of the course was quite general.
It is recognized that several things can affect the vocal cords and therefore might aggravate SD symptoms. These were highlighted and we were advised to avoid them for at least six months to give us the best possible chance of maintaining any progress we had made.
Gastric Reflux comes into this category. One simple tip which can help avoid this is to avoid drinking while eating. If you chew each mouthful of food at least fifty times, enzymes are released which aid digestion which, in turn, lessens the likelihood of gastric reflux.
Alcohol and caffeine can cause dehydration which can affect the vocal cords’ working. We were also advised to avoid dairy products and try a diet which is at least 75% vegetarian. In addition, to help maintain our breathing efficiency, we were told to take at least three, thirty minute, exercise sessions per week.
Last, but by no means least, humming in the shower is extremely good for loosening mucous and limbering up the vocal cords. I now begin each day with a humming \ singing session in the shower.
After nearly three months the improvement in my speech has been maintained, despite two or three blips. My consultant observed that my voice was better than he had ever heard it. Is this a cure or is the brain learning a new pathway for speech? Whichever it is, I’m glad I went and it is working for me.
Peter Meager firstname.lastname@example.org