2011 

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February 2011 Spasmodic Dysphonia Treatment Follow-ups

 

Dan – AB/SD with first symptoms November 09/diagnosed July 2010:  Speech therapy at Emory Voice Center, 4 botox injections

 

March 2012: Dan found that after about a month, he experienced regression, and despite compliance to the program felt that he needed to resume botox injections. He stated that he continued to use a lot of what he learned at the clinic and that the benefit from the injections are greater now that he has techniques to utilize.

 

“My therapy continues to be a combination of botox and vocal awareness, the techniques I learned at your clinic. For me, one without the other isn't as good as both. I still have challenging days but it doesn't bother me as it did when I was first diagnosed. It's taken a while to get here, and it is not perfect, but I'll take it.”

 

JH– Mixed SD 5 years: one month DVR with Morton Cooper a year ago

 

April 2012: JH rated his voice as 99% better, and normal. He followed up with some singing lessons, which he felt was the last step to regaining full use of his voice and what he stated was “complete healing”.

 

Anne –Laryngeal dystonia 10 years, Speech therapy, Alexander technique, psychotherapy, 7.5 years of regular botox injections.

 

March 2012: Anne reported inconsistency in her voice, but “I am now struggling without botox instead of with it. This means that during the periods of time in between teaching terms, I have the opportunity to practice rather than the shut-down times associated with pre- and post-botox problems and unpredictable outcomes of the injections.” She was maintaining moderate improvement overall, and felt she was continued to progress. VHI had decreased 28 points.

 

June 2011 Follow-ups

 

Diana: Slow deterioration of voice beginning in 2009/diagnosed in 2010 with Abductor SD, also sulcus vocalis and vocal fold atrophy (unilateral). Voice and psychological therapy, medication for reflux, bioenergetics, Reike treatment

 

May 2012:  “Since the clinic, and as long as my voice was improving, I was not afraid of talking. As a consequence, I gained more confidence to talk, which gave me more voice. The cycle of improving my voice was similar to the cycle of losing it, but in a positive way. My recovery did not happen immediately after the clinic, but I knew then it was a good investment. My recovery now is very notable for me and everyone else. The tools I learned, and the hope and courage you gave me were invaluable for my healing.

 

I learned not to push my abdomen while speaking, replacing tension with relaxation, and all the voice and singing exercises. The Alexander technique and exercises with the ball were helpful, as was learning relaxation in breathing. I became more aware of my body, mind, breath, and voice. The change of the meaning of SD from fear and hopelessness to the confidence in healing gave me courage to keep the commitment to myself and my voice 100%.

 

When viewing the video of the clinic, I felt sad because I had no voice at the clinic. It reminded me of the worst moments of my voice. I have not had that condition over the past year. My voice is significantly improved; at times normal.”

 

VHI decreased 61 points, from Severe handicap to No handicap.

 

Deb: Voice difficulties beginning in 1981 at age 19; diagnosed with Adductor SD in 1995; treated with psychological therapy, then Botox injections for the past 15 years. Last injection was January 5, 2011, so she felt she came to the clinic with her “baseline” SD voice.

 

June 2012: “I feel more control over my voice, but not yet completely. The breath work, relaxation techniques, acceptance of my condition and meeting/working with others with SD were all helpful. I’ve been 75% compliant to my contract and feel my voice is moderately improved.” 

 

VHI decreased 37 points, from Severely handicapping to Moderate.

 

Jenny: Voice difficulties beginning in 2008 (glottal fry) that progressed to Adductor SD by 2009. Worked with a speech therapist, and tried botox twice with no improvement and increased difficulty singing. As a professional singer, she did not feel that this treatment was acceptable.

 

June 2012:  “I definitely feel more control over my voice because of the techniques I learned. I have a few problems with the phone and in noisy cafes and restaurants. I feel it was worthwhile to attend the clinic, and I feel sure that it is possible to regain a functioning voice. It is especially helpful to watch Youtube videos of other people successes, that is a great motivator.

 

I learned to relax and not force the voice; to hum, lift and lighten the voice, to breathe properly, and to avoid panic when speaking is difficult. My voice is at least moderately improved, sometimes significantly. The times it sounds really good are increasing.” Voice Handicap Index decreased 73 points, from Severely handicapping to No handicap.

 

MY: Diagnosed with Adductor SD in May 2009, and immediately started regular botox injections, with mixed results; but positive effect lasting between one and five months. Last injection was in March, so he was still experiencing benefit at the time of the clinic. Goal was to become less reliant on botox and to extend the effectiveness of the injections if he chose to continue.

 

AUGUST 2012: Resumed regular botox injections but stated "I believe I am able to prolong and improve the effects of the shots while doing the voice and breath exercises I learned from your clinic concurrently. I am still eager to hear any new research or news pertaining to SD and want to thank you again for the help I gained from your work."

 

October/November 2011 Spasmodic Dysphonia Treatment Follow-ups:

 

Rachel: Severe muscle tension dysphonia; AB/SD 3 years post-onset , but with brief periods of remission. Had participated in voice therapy, acupuncture, Chinese herbs, and Feldenkrais

 

September 2012:  My voice is 65% improved, and unlike a year ago, I am certain now I’ll get a full voice back, that it will be fuller than ever because I’ll be using it correctly and I’ll be coming more from a place of authenticity and power. I know this in my bones.

 

My voice didn’t respond in an enduring way to the exercises I learned at the clinic. It certainly improved while I was there. I know that was due to the intensity of going to Florida, the energy you brought to each person, the sustained interest and input I received while there. But I did not sustain that improvement. It was through working with a classical singing teacher from Serbia – a wise woman who is a master of her art. In the coaxing back of my singing voice, my speaking voice is coming back as well, effortlessly. I am also working with a wise acupuncturist and herbalist, who is helping me build lung qu eroded by the intense grief I encountered over the past 5 years. I know too that the work with the spiritual master I sit with is helping me. I am writing poetry in a more focused way. You could say I have found my creative voice. I don’t want to do any questionnaires or voice handicap index because it takes me back to the paradigm of a problem. I know there is no problem, regarding the state of my voice.

 

Greg: AB/SD since June 2008, slow onset, botox injection unsuccessful

 

September 2012: While Greg did not provide the requested follow-up, he did a series of Youtube videos on his channel, GregFellowsSD, which are interesting and include his experience and personal “endorsement” of the clinic. Please visit and subscribe to his channel!

 

Shelby: AD/SD since 1988, participated in studies at Baylor and at NIH, the second utilizing botox injections. Speech therapy was not helpful. Discontinued botox in late 1990 and lived with the condition since that time. It fluctuated from pretty good to very bad.

 

September  2012: During and immediately after the clinic, my voice was remarkably improved. I received many positive affirmations but they eventually stopped and my voice has regressed. I have not forgotten the knowledge that I CAN speak better and that it IS possible. I know that the reason for my slip back is due to my lack of attention to what I learned at the clinic. I did watch the DVD and it was emotional for me. It motivated me for awhile. At best, I’ve been 30% compliant, and my voice is somewhat improved. VHI decreased 20 points, moving from the Severe to the Moderate range.

 

Valerie: AD/SD since June 2008; 7 days with Morton Cooper in the fall 2008. She recovered her voice until February 2011, when it began to slowly deteriorate.

 

September 2012: “My voice has improved tremendously. It is not 100% but more and more people tell me I’m sounding like my old self again and it’s great to hear my voice. If I do have a difficult time, people assume I’m “under the weather” which is an excuse I roll with. I am my own worst critic, so it’s encouraging when people don’t notice my voice or when there is little to no tension, and it just sounds raspy. You can never stop or settle for mediocrity with this condition. You have to persevere and know you can sound great again.

 

The clinic was a great; meeting and bonding with everyone. It was a fun and wonderful experience overall. I appreciated the clinic approach to tackling SD. I liked the holistic aspect incorporated into the clinic. I’m not sure it helped me personally as much as I would have liked. I think that is because my previous education/training with Dr. Cooper conflicted with some of what the clinic taught. I went back to working with him and focused more on issues that were bothering me the most. I kept in touch every few days and now once a month. I shifted my focus from what I learned at the clinic to other aspects that were inhibiting my progress. I did not view the DVD because I wanted to move forward and not look at how bad my voice was then. The focus on relaxation, body posture and alignment I learned at the clinic were helpful.

 

My voice is moderately to significantly improved; sometimes normal. I think the clinic would be even better if there was more focus on voice image, how we sound to ourselves in our own heads and how we think others perceive how we sound (with the good functioning voice). The voice image really feeds into the condition and inhibits an SD patient’s progress.”  

 

VHI decreased 38 points.

 

AA: AB/SD with tremor 10 years following a bout of laryngitis; one Botox injection without improvement, 4 weeks with Morton Cooper in December 2001 with dramatic results, but remained “handicapped” and concerned about his voice in conversations and on the phone.

 

September 2012:  “The clinic was a good investment and I have more control over my voice. The most lasting helps were education around the importance or relaxation, body language matters as much or more than voice quality, learning about the sympathetic and parasympathetic nervous systems, breathing techniques to prevent quick collapse of the stomach when speaking, and Roger Love book and CD (singing practice). My voice is moderately improved.” VHI decreased 27 points, moving from the severe to moderate level of handicap.

 

Michael: Diagnosed with functional dystonia September 2010, MTD with possible SD in October 2010 (both in the UK) and with SD/MTD at Massachusetts General and Massachusetts Eye and Ear in April 2010. Botox was recommended but refused. (Symptoms began in December 2009, possibly earlier).

 

September 2012:  “I have definitely improved control over my voice since the clinic. They took voice exercises I had been doing prior to the clinic and turned my hums and sounds into words and sentences. Within 3 days, I was speaking with a voice no one would identify as challenged in the clinic environment. I have spent time since working to transfer my clinic voice to all the venues in which I utilize my voice in daily life, making progress in all forums. I speak confidently and well in quiet conversations and I’m getting much better speaking in groups without background noise. I feel completely at ease entering into any situation in which I need to speak. I’m not always happy with the voice I produce and sometimes need to do a bit of monitoring. I no longer avoid speaking and at times I find myself listening to my voice as a source of pleasure.

 

This clinic was the best investment I ever made! I am continuing voice therapy in the form of laryngeal massage/manipulation in Boston. Glenn Bunting of MEEI is genuinely blown away by my voice. He cannot believe I have a voice that by all accounts is normal to the lay listener with just voice therapy and no botox!  A year+ of dedicated work may seem daunting at the start, but the alternative of doing nothing only makes inevitable more bad voice production and bad habits that can become hard-wired.

 

Meeting other people with SD at the clinic and the environment there were the two greatest factors in my voice improvement. The two really worked in tandem. This allowed the voice therapy measures to take hold. It also created an upward cycle of success and confidence that just fed into itself. It was a turbo-charge for my recovery. I believe that 100% of the tools and strategies I learned at the clinic would not have had 1% of the value had the instruction been implemented in a sanitized and isolated environment. Exercises alone are not the solution for most people with SD. The clinic touches all of the components of voice – mind, body, and spirit, in a way not available in most traditional voice therapy venues. My voice has significantly improved.”

 

VHI decreased 40 points.

 

Jim: Slow deterioration of voice beginning over 10 years ago/diagnosed in 2009 with dystonia, chronic constriction of the vocal folds, Spasmodic Dysphonia and/or Muscle Tension Dysphonia. Speech therapy, chiropractic, massage and other alternative therapies as well as botox , none of which helped the voice.

 

September 2012:  “My voice is much better than before the clinic. I was given hope and real answers to my problem, and that I need to figure that out. Nobody has answers for me; the answer lies within. The clinic develops the building blocks for that process to begin. I am still on a journey of discovering how to use my voice more effectively. I feel as though I have a much better understanding of what is happening with my voice and how to continue to improve. The clinic most definitely was a good investment. I have been 90% compliant to the program and can produce a normal voice at times. I can tell that anxiety causes my voice to tighten and conversation is more difficult than reading. I have found working with a vocal coach has been very helpful as well.”

 

VHI decreased 31 points.

 

Dorothy: Quivering voice in the late 1990’s, diagnosed with Adductor Spasmodic Dysphonia and vocal tremor in 2008, botox injections regularly for several years with inconsistent results.

 

September 2012:  “Since the clinic, I have learned to vocalize better. My voice is moderately to significantly improved. I felt the clinic was excellent.”

 

VHI decreased 39 points, moving from the Severe range to the minimal range of handicap.

 

Jean: Diagnosed with Adductor SD last year; having had it for 8 months 30 years ago. Initially she was not told she had SD, and was treated with voice therapy for 8 months and completely recovered until 2010. She was then told that botox was the recommended treatment after 3 months of unsuccessful voice therapy. The three injections she received “masked the problem” but she did not like the breathy period and returned strain as it wore off.

 

August 2012:  “My voice has continued to regress, and it is worse than ever. There are times when I cannot talk at all. There seems to be too much tension in my vocal cords to vibrate correctly. I am still doing the exercises but it is one step forward and three back. I have resumed local speech therapy but can only voice on inhalation. I have seen 4 ENT doctors, who say there is nothing wrong with my vocal folds.

 

The clinic did give me the insight that progress can be made, and I hold onto that. It helped to see that Connie and others had made it through this awful evil. I have the DVD to prove how well I was speaking and I wish I could speak like that now.”

 

Connie, Dennis and the team are pulling for Jean as we know she is in a tough spot; but improvement is still possible and can take many years and various paths to healing.

 

Robert: Adductor SD diagnosed in 2004 after a bad throat infection, two botulinum toxin injections, then consulted with Connie in London on 3 occasions, Alexander technique, Bowen, and other alternative therapies.

 

September 2012: Robert reported more control over his voice, especially in his understanding of pitch. He reported significant improvement in his voice, with conversation more difficult than other voice tasks.

 

VHI decreased 31 points, moving from the severe range of handicap to the moderate range.

 

In an email in June 2014, Robert reported that his voice is hardly an issue any longer; and that he finds that he communicates with ease. 

 

Carrie: Sudden onset of SD in 2001, at age 24. She initially improved with voice therapy, but symptoms returned. She then had Botox injections at the Cleveland Clinic every 10-13 weeks for 5 years, but it became less effective over time. Seeking alternative treatment, she saw Mike White for breathing instruction and signed up for the clinic with the hope that she could stop Botox treatment.

 

“My email is Belle5677@aol.com. Just put Spasmodic Dysphonia or Connie Pike in the subject line.”

 

August 2012:  “The first six months after the clinic my voice improved significantly (with some ups and downs), but then I felt that I didn’t need the exercises anymore because I was doing so well, and I stopped. The DVD reminds me that I do have a voice even though now it is worse than it was at the clinic. A commitment to the exercises is what got me there and with a lot of renewed commitment; I should be able to do it again. When I watch the DVD, it reminds me of things I learned in sessions with Connie I had forgotten about.

 

I think the clinic was great, and I have no regrets about going. I’m not sure how it could be improved. I got overly confident and was happy with my voice so I stopped doing the exercises. I now realize the commitment needs to continue even AFTER it gets better. I recently started doing the exercises again and am confident I can get my good voice back. I only have myself to blame, and when I do get it back, I know I need to continue doing the exercises so that hopefully, in 6 -10 months, I can report better results.”

 

April 2013: “As an update on my voice, I started doing voice exercises daily on January 15 of this year. This past Sunday (April 21), the exercises became very easy for me and I could read out loud again. My voice is almost as good now as it was at the clinic. I will definitely be keeping up the exercises this time (I learned my lesson) and am confident I could have full voice recovery over the next few months.”

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Incorporated in 2005 by Connie Pike, a Speech Language Pathologist who overcame her own spasmodic dysphonia and developed a passion to help others do the same.

CREATED BY: JUSTIN MCMILLEN