“Free to speak” voice clinic for spasmodic dysphonia

 

 

In July 2007 I attended the voice clinic at Connie Pike’s house in Apollo beach, Florida, USA.

Before registering for her clinic, I searched the internet trying to find people who recovered from SD and who could help me.
Soon I found the website of Dr. Morton Cooper in Los Angeles, USA.

I called him on the phone to find out more. He asked me to humm, happy birthday. That was no problem for me.
He listened and said:”You have a good chance of fully recovering your voice. Can you come to L.A for 4 weeks?
How much will it cost I asked him?
“5.000 dollar per week”:he said. “And I want you to come for four weeks.”

20.000 dollar…? A lot of money!
But I really wanted to recover, badly. So I went to the bank to ask if they could lend me the money.
I explained them everything, and that I needed the money to be able to keep my job.
They agreed with the lending and I was looking forward to going to the states and getting my old life back.

I kept on browsing the internet and found Connie Pike’s clinic.
A lot cheaper and more complete was my opinion. Only 2000 Dollar!

So I decided to register for the clinic and go for the first available date.

Below in the video, you can hear my voice before I went to the voice clinic.

I arrived in her nice house on the 4th of July.
When I entered the room, another guy was sitting at the table and I thought that he was in a terrible condition.
He had great difficulty with getting some voice out and his neck and shoulders were twisted. I thought that he was an invalid.

Around his neck was a thick black collar. He suffered from spasmodic torticollis and spasmodic dysphonia.
His name is Ron Cox.
Below in the video, you can see and hear Ron Cox before the voice clinic,
which he attended with me.

He was worse of then I was. What I didn’t knew then was that he was going to recover from both disorders within a year, fully.

The other participants for the clinic arrived after me and we ended up with a group of 6 people. 3 guys and 3 ladies.


I am the second person from the right. Ron is the second person from the left.

Voice Clinic Connie Pike

We exchanged stories and it was a revelation to meet other people who suffered in the same way as I did.
I was not alone.

I was in the right place.

The 5 day clinic consisted of different parts:

Private speech training sessions

Personal sessions with Connie Pike of about one hour, 3 times. The session was video taped to watch back later at home.
We learned how to speak in a different way. Ways to get the voice out by speaking from the “mask” which is the area between your nose and mouth.

Speaking at a lower (men) or a higher pitch (women). Using the full force of the voice by using the full resonance of the whole body.
Doing different exercises with words and sentences starting with certain letters and sounds.

Some are difficult when you suffer from abductor sd and others are difficult when you have adductor sd.

Connie knew what she was talking about because she herself recovered from spasmodic dysphonia a few years before.
She has helped dozens of people to recover their voice.
Below in the video, you can see a very small part of my private sessions with Connie.

Private breathing sessions with Mike White

Mike started off with breath assessment. We had this breath flow meter which he used to measure the long capacity and the quality of my breathing.


Which was fine.

He learned me to speak with good breath support. Standing up straight with the head tilted down a little bit, to have maximum flow past the vocal chords.
Mike works very intuitively to get your voice out so we ended up in some strange body positions to connect to my voice.

But it worked.

By finding some way to get your good voice out makes you experience a breakthrough which sparks the fire of hope.
You go from there.

Singing with Roger Love’s cd.

This consisted of singing with the whole group together, led by Connie Pike. The singing is fun and good for your breathing.
You sing scales with different sounds.

Self practise on the computer with voiceprint

The computer program: “Voiceprint” displays the pitch and the volume graphically on your screen. You speak in the microphone while the program runs and you see a horizontal graph of your voice pitch. It is great to see with with your eyes what your voice is doing. I continued to use the program long after I got back. It was a great tool to record voice samples and keep them for later. It tells you if you are on the right pitch and whether you speak with resonance.

Massage to relax the whole body

When the electric massage bed was available, we could use it to relax the muscles.
It is the Ceragem massage bed.
It massages different parts of your body while applying infra-red heat.
It was nice.

Manual massage by Megan Pike.

Megan Pike (Connie’s daughter) massaged everybody two times during the 5 day clinic. It is better then automatic massage because a machine is just a machine.
Especially the throat, neck and face were taken care of.

Group talk to discuss progress and revelations

We did this a couple of times. Everybody in it’s turn shared where they were coming from. How long they suffered from sd,
what they tried before, what worked and what impact the sd had on their life.
Connie shared with us her struggle and the story of her recovery. She told us her ups and downs and the lessons she learned.
Group breathing exercises with Mike white.

Mike showed and thought us different techniques, tricks and body positions to get more air in.
The more air you get in, the more power you have to get the voice out.

Psychological evaluation with Robbie Goss

We had one session with Robbie Goss, who is a psychologist. He interprets the Taylor-Johnson Psychosocial test we performed online before we came to the clinic.
The Taylor-Johnson Temperament Analysis® (T-JTA®) is a quick and convenient method of measuring important personality traits that influence personal, interpersonal, scholastic, and vocational functioning and adjustment. It functions both a diagnostic device and counseling tool.

T-JTA Content

The T-JTA measures 9 personality traits and their opposites:
• Nervous ↔ Composed
• Depressive ↔ Light-Hearted
• Active-Social ↔ Quiet
• Expressive-Responsive ↔ Inhibited
• Sympathetic ↔ Indifferent
• Subjective ↔ Objective
• Dominant ↔ Submissive
• Hostile ↔ Tolerant
• Self-Disciplined ↔ Impulsive

The profile gives you insight in your character profile.
My result was that I strongly tend to:

Emotional
Impulsive
Unorganised

That is so true.
I am also a quite shy and introvert person.
So Robby told me that with my character profile it would be hard to stick to the training schedule.

The clinic was great because:

  • You met with fellow sd sufferers
  • You could hear first hand from somebody who recovered her voice from sd (Connie Pike)
  • We were a nice group
  • It gave me hope and that I was not alone on this journey
  • I had things to do to recover my voice

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Please leave your comments and questions below.

18 thoughts on ““Free to speak” voice clinic for spasmodic dysphonia”

  1. I would like to know of those six people what were the immediate, intermediate, and long term effects of this 20,000.00 dollar investment?

    1. It was 2000 Dollar.One had some immediate improvement from applying exercises from the book (but no full recovery) Ron had full recovery from the spasmodic torticollis and the spasmodic dysphonia after 1,5 year (because he kept working at it?)I myself had full recovery after 3 years, because of relaxing my speaking with Botox and using neuro-plasticity to reprogram my muscle motor program. Together with a calm brain, having control over my emotions and proper breathing while speaking. Feeling the voice rather then hearing my voice.

      1. I cannot see where to put a new comment so tacking it onto here. I have trouble getting any sort of singing voice happening out of my mouth, and humming is also a problem. I can do the Zzz sound, and the lip flap, and have had the slightest improvement with the breathing, that is good as I was breathing fast from my chest which was making my very low voice breathy . Am working on my diet and excersize trying to get my lungs stronger.Any suggestions?
        I am at the stage , which you called in your book, acceptance, as I have been going to every specilist, voice therapists, some of them top of their field, and alternative therpists for the last 6 years who I can think of, and if the alternative therapists think they can get money out of you they will have you coming back. Massage is the only thing that helps with the tension in my neck and shoulders.I have drawn hope from your book and your story. There is a very lot to my story but that is enough for now. At least I know now some people have recovered.

  2. Did you experience any pain with S.D.? My husband has something similar (still undiagnosed), but he has a lot of muscle pain and tension in his neck, problems swallowing and cannot find a comfortable position to sleep in, etc.
    Thanks.

    1. Hi wendy,

      I am sorry for your husband. No, I had no pain. Did your husband see the neurologist allready? Take care, Jeroen

      1. No, a neurologist has not been recommended, but we do have an E.N.T. appointment this week, so hoping for some answers.

        Thanks for your help!

    2. I had a bit of a sore throat at the start and later my shoulders and neck were sore, but I would go to a massage therapist. SD tends to tighten the muscles in your throat , jaw and shoulders. Can he still speak ok?

  3. I have had 4 Botox treatments which do not seem to have helped. Mine is
    adductor with a tremor. I am discouraged – talked with an accupuncturist – he said that he had several patients with short-lived results. Don’t know what to do next. What do you think about anti-anxiety meds? I do get stressed and
    agitated, especially after talking a lot. Keep hoping that research will
    bring an answer to this dreadful problem. I am contemplating being a brain
    donor at death as my ENT doctor says that it is a brain disorder – brain not
    telling vocal cords to open and close correctly.

    Any info is appreciated. Thanks

    1. Hi Mary, I only know people with long term results. Yes, I would go for the anti-anxiety meds, to cool (calm) you down. Is your voice bad all the time? It is a brain disorder..your brain produces thoughts…thoughts evoke emotions…emotions kill your voice. Choose wisely how you think. The meds will calm your thinking down and the rest that follows. How do you breathe…? take care, Jeroen

    2. Hi Mary, I was on depression drugs, which I am now off of, and am still taking a small amount of Alprax for my anxiety.
      I always feel that after I take the Alprax that it hinders my speech as it is trying to slow me down when my voice does not want to slow down. But I have never proved if this is right or wrong, it just feels that way. However way back I was on 2 Zoloft, I felt I could speak a little better, but went off as they affected my heart rate and these are a depression drug.Can’t say conclusively if they would work or not, but I do know when I get upset, or have a down day my voice is worse, making it even hard for me to speak in my whispery voice. Most of the time I speak in a very soft voice with no vocal sound. Sometimes when I am laying in bed in the morning or night I can talk properly. But when I get up I can’t. I have the mixed spasmodic disphonia, and Botox does not work on me.

  4. In sd, anti-parkinsonian drugs like syndopa may help by reducing the spasm in laryngeal muscles.Anxiolytic may help by lessening the stress on laryngeal muscles. I found steam inhalation helps.

  5. I have been thinking about visiting Connie Pike. Do you know what the success rate is as far as one gets significant relief ? Are the majority
    of people able to speak much better ?

  6. Mary,

    I did a trial with anti-anxiety meds for my voice this past summer. I was diagnosed with SD and acid reflux 5 years ago. I was hoping to be relaxed all the time and that maybe it would improve my voice. Long story short- it didn’t do anything, and I didn’t like being on the meds either.

    The reason I thought anti-anxiety meds would help is because alcohol greatly helps my voice. Unfortunately, one cannot carry on through life loaded all the time! When I am intoxicated, or have a slight buzz, I do not have any problems with my voice-or very few. I wonder what the reason for this is? Is it because I am in such a relaxed state that I’m not thinking about my voice? Or does the alcohol affect a part of the brain that prevents my vocal chords from slamming together while talking? Does the alcohol relax the vocal folds? I don’t know.

    The other thing about alcohol is that it’s a double edged sword. Yes, it helps the voice for me-but since this is pretty much the one time my voice is 100% mostly functional, I tend to want to be half in the bag when I’m not working. I wish the medical community would listen more to the people who speak of cures instead of surgery and botox which ruin the voice and the functionality of the vocal system.

    Thank you for your time also, Jeroen. I will keep reading your website and your emails. I commend people like Dr. Cooper and Wendy Pike as well. Hopefully I can go see Wendy one day. I cannot afford the $8,000 week that Dr. Cooper quoted me. I have tried other speech therapists to no avail.

    Keep On Keeping On-You Are Not Alone,
    Peter

    1. Peter,

      “Half in the bag’ – I love that! You are in the exact same place with SD as me. I like a drink, and this encouragement is not good!
      Typically, I am asleep about an hour afterwards, but have a wonderful time talking normally and singing willie nelson songs, which greatly annoys the kids, but I love it! Alas, same ol’ the next day.

      I am about to head down Jerome’s path, so we will see….

  7. Hi Jeroen,

    I am a professional singer and singing teacher with Spasmodic Dysphonia, vocal dystonia. I was diagnosed two years ago and about 18 months ago had a lot of press coverage due to the fact that I cant speak but I can sing etc. It was great to get coverage because there were a lot of people undiagnosed suffering as I did getting in touch and I was able to help them. I then went on to set up a facebook support group https://www.facebook.com/groups/voicedystonia/

    I have just been to a support meeting which was set up by Dystonia Association but it was Botox all the way. They do acknowledge that other therapies work but are very expensive and most people are unable to keep up costs. My complaint is with our healthcare system. I was having acupuncture and it was working, along side my daily speech practice but at £40 every week unable to keep it up. I asked my consultant to refer me to NHS based acupuncture and its not an option for me although they are happy to pump me with Botox.

    I am now playing a very frustrating waiting game been 6 months, they wont give me anti-anxiety drugs, been given painkillers for the pain of muscle spasms, and my doctor constantly prescribing anti depressants.

    I am so glad that you managed to overcome your dystonia, I continue to battle through every day trying to have conversations with people without suffereing painful spasms.

  8. I am 99% sure I have Adductor SD and have a Drs. appointment at Mass Eye & Ear in January. I started getting it in April 2013, and it is getting more noticeable now. I cannot speak fluently, and the phone is the worst. It is now definitely affecting me socially, as I start every conversation with “I have a voice problem…bear with me”, and that much comes out in a very halting manner. Whispering I can do for a few sentences, but then it too becomes an effort. Singing and laughing are all right, fortunately. I have heard of Connie Pike’s voice clinic, and am thinking of going sometime in 2014. This has become intolerable…I have been a meditator for 10 years, and that has helped me keep a cool head about this, but it’s becoming socially unacceptable to me. Does anyone have information about Botox injections? Are they covered by Medicare for this condition? I received Jeroen’s emails for a while, and they were helpful. Any books written about this subject would be greatly received! Thank for being here, everyone! Ellen

    1. Hi Joeron,
      I have suffered with SD my entire life. I am in my mid 40s now. I have been taking the Botox injections for the past 10 years. The injections do help my voice for about 3-4 months, although I am a bit breathy for a month after the injection, making it difficult to talk loud or sing. Lately, I have grown more agitated with my voice as I feel embarrassed when having to speak before groups of people. I am interested in finding other techniques to help me with this SD. It does help to read about other’s experiences with SD. I know I am not alone.

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