August 2005 - July 2007
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Does the program work? Preliminary Efficacy Data:There were a total of 38 participants seen in the voice clinic during this period. At 6 months, follow-up data was requested. 30 responded to the request, with 8 lost to follow-up. Each person completed a Voice Handicap Index (VHI-30) to compare to the initial one they completed before coming to the clinic and a brief questionnaire. 27of 30 completed the requested paperwork, with the remaining 3 sending brief emails. Three participants reported resuming botulinum toxin injections as their treatment of choice 1-8 months following the clinic. One participant tried botox once more without success before resuming the program. Two were able to tolerate smaller doses and continue voice exercises. In the three cases where botox was used primarily as the treatment of choice, VHI scores and questionnaires were not included in efficacy data. This was so that improvements were attributed to using voice rehabilitation without the possible added benefit of botulinum toxin.A significant decrease in VHI scores was reported in 81% of participants. A change of 18 points on the VHI-30 has been validated to indicate significant change in perceived level of handicap rendered by voice function in three different areas. Average decrease in VHI was calculated for the July group to be 34 points. When asked to rate their level of voice improvement overall, 88% reported moderately to significantly improved voice production. Two people reported slight improvement and one reported a continued worsening of her voice following the clinic.The least improvements correlated directly with the degree of compliance to the recommended program. In one case, however, difficulty was attributed to over-effort and subsequent emotional distress. Those who had not complied felt they may need to do so. Clearly, there is a pattern of improvement over time. Follow-up emails at 8-12 months often indicate continued improvement in voice ease and production.We feel that efficacy is well demonstrated at this point. The original clinics were held for 3 ½ days, expanded to 4 ½ days in 2007, and to a full five days in 2008. We have also made additions to the clinic materials work-book and added a licensed massage therapist to our team.Individual comments follow and will be posted on a regular basis as they are received. |
Followups to August 2005 Clinic - First Clinic
Follow-up comments are in blue
Bonnie (Mixed SD, 12 years)
"Connie definitely has a great understanding of SD, as well as the aspects that involve the throat and facial muscles. She is very sensitive to each person's needs, preferences, and feelings and very approachable. Mike is extremely knowledgeable about breathing mechanics and can find the natural voice in anyone. I feel quite confident that the knowledge and tools I have received will be all I need to continue building on the progress I made here at the clinic.
"The Voice Clinic was just what I needed to show me that it IS possible to overcome SD, and to motivate me to begin my own journey to true recovery. The detailed and specific information I received during the clinic helped me to realize exactly where my problems lie with regards to my voice production. I learned that SD is not one simple problem, but a combination of many incorrect breathing habits and other bad habits we pick up along the way to try to compensate for our "bad" voices. Connie's consistent emotional support and encouragement were great motivators."
“I cannot imagine where I would have found the unique blend of therapies found in the holistic approach and the highly specific expertise that Mike and Connie bring to the clinic. I am SO GLAD I attended because it not only helped me to see the potential in my voice, but changed my entire perspective. As for the future of my voice, I feel that the clinic provided me with the physical tools and a wealth of knowledge so that when I am able to devote the time to my voice, I will definitely make progress. I have to admit I don't feel more control over my life per se, which I realize is because I have not adhered to my compliance contract. (estimated 5-10%) I DO, however, feel drastically more control over my life. The clinic gave me such a boost of confidence and facilitated such an extreme change in my perception of myself that I really feel it was a determining factor in my decision to go through with attending college(out of state). My life is vastly improved—I feel I'm really living life, rather than passively existing and telling myself I'll do such and such when my voice is better. “ VHII decreased 33 points.
L.S. (AB/SD, 5 years)
"Both Connie and Mike are heart-centered in their work and clearly wish for the highest good for their clients. I leave this workshop feeling greatly encouraged that the skills and insights I have gained here will, with continued practice, enable me to steadily progress toward a voice that is functional under all circumstances. Connie and Mike have created a client-centered approach that is both comprehensive and highly individualized. They bring great heart and spirit to work that is much needed in this world."
Responded “yes” to Voice Intensive being a good investment and feeling more control over life and voice. Did not feel the need to use the follow-up support and had maintained 70% compliance.
“I truly think I have come a long way and know that I am a lot better off vocally than I was a year ago. The work I did with Connie and Mike played a huge part in that and I feel like I have a lot to keep building on. I am doing well and am pleased with my progress.”
Brenda (AB/SD, 6 months)
"I was drawn to this clinic because Connie had suffered from SD and knew how I felt. She understood the devastating consequences of SD. She had put to use her knowledge of speech pathology and incorporated other methods, such as Roger Love's to help her overcome SD. I did not come to this clinic with illusions of returning home with a healed voice in 3 ½ days. I came so Connie could teach me the techniques. I was not disappointed. Connie is very up beat and optimistic, I had no where to go but up. She helped me find my optimum pitch and showed me how to practice. I learned through Mike that good breathing is the key to maintaining the voice. I believe I have all the tools I need to strengthen and maintain my new voice, improved 70% since I arrived."
“There is no question that my voice is almost back to normal; I would put it at 90%. My voice has been so much better since attending the clinic that I have had no need for the follow-up support. Every time one of my grandchildren asks me to read a book to them, my voice has done wonderfully. I do truly believe that my voice is back forever. VHI decreased 60 points.
April 2008:
“Your seminar was life-changing for me. I think of you and the
group quite often. My voice is at 95% or better. Every now and then,
if I am tired or sometimes on the phone, I may have trouble getting
a few words out, but I just pitch my voice and try again and get them
out. When I attended your seminar, I wanted to be able to read books
to my grandchildren. I can, and they love it! You have been a true
blessing in my life.”
Jay (AD/SD, 3 ½ years)
"In my experience with SD, I have come to learn that breath support is crucial to maintaining an effortless voice. But it is very difficult to obtain that needed breath support when my vocal folds are tight. The Free to Speak Voice Clinic places a major focus on first freeing your breath, so that you can then produce an improved voice, and do so without effort. My voice improved 70% at the clinic."
Jay has consulted with me for several lengthy phone conversations during which his voice was very good. He continues to experience some embarrassment in his business associations and feel a need to explain his occasional hoarseness, but has been pleasantly surprised when others comment they hear no problem. He continues to practice and has some difficulty in noise and on the telephone. VHI decreased 34 points.
Sarah (Abductor SD/ 7 years) "I have always felt that there must be ways of combating SD by natural means without resorting to botox injections. What is so significant about this course is that it is run by someone with personal experience of this condition who has greatly improved her voice through her own efforts. This in itself offers hope to SD sufferers everywhere. The course teaches a variety of techniques that may help improve one's voice. But more important than particular exercises or immediate benefit is the sense this course instills; that it is possible to improve one's voice by natural means. It is just a question of finding what works for you personally and putting the practice in. I am so please that I did the course as I feel that it has given me a totally renewed impetus and many tools to attack this problem."
Sarah returned home and let life take her over. She did comply to her program and six months later, felt she needed more work. I met with her individually for some intensive therapy, during which she captured the freedom of her good voice. Here are her comments:
“The sessions with you were like a lifeline for me. Everything you said makes sense and fits with my experience of my voice. Now I have a much clearer picture of what is important in terms of voice production and what isn't. Now I see more clearly where I need to focus my energies – particularly on pitch and resonance – and I worry less about other aspects. I still get times where my voice isn't good, but overall I am definitely improved since our sessions and also determined to continue that improvement.”
Followups
to the Second Group - January 2006. |
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Nancy - The clinic was a crucial turning point in my voice process. The time spent with Connie was crucial to unraveling some emotional glitches that were undermining my practice times. I definitely feel my life has improved. The most lasting helps were rooted in a changed attitude toward the voice disability and toward myself. I am still in the process of learning the mechanics, and when I am able to devote myself to practice, I feel progress in the voice. VHI decreased 20 points. Marie - The clinic was an excellent investment. I have improved control over my voice, and appreciate the clinic as a whole. I practiced regularly at first, but now I no longer practice. VHI decreased 50 points; moving from the severe range of disability to no handicap perceived relative to the voice. I thought you might be interested that I met my otolaryngologist in the elevator at the hospital. She looked surprised and said, "Your voice is so much better." After the incidence in the elevator, Marie took her doctor a copy of my book. The doctor called me and asked if I might be able to train the speech pathologists who she works with at Shands Hospital in Jacksonville. She was very interested in the approach we use. - CP E.A. - (March 2006) Breakthroughs with increased power and range. "Thanks for creating this clinic, setting the best example and steering me toward this journey of personal growth. I am beginning to identify with you - not just intellectually, but when you say you are thankful for what this illness has done fro you. It's getting me to reexamine what is and the potential of how much deeper and freer things can be once you put your mind to it. I appreciate your dedication to what you do." August 2006 - "As was my concern, I put my voice on the back burner about two months after the clinic and have just gotten back on the horse, so to speak. I wasn't discouraged. I just reasoned that other things took priority. I am back at it again. I haven't made a lot of progress because I haven't made practicing a regular part of my daily schedule, and this is about muscle memory. On the upside, I have figured out how to project my voice and really feel it resonate in my "mask". Aside from making practice a regular routine, I'm not staying "aware" of my voice after I practice. I just go on autopilot and revert back when I engage in conversation. I have some pretty big hurdles to clear before I see/hear definite progress. I'm glad you checked in to remind me to keep at it." Micki I have lived with SD for six years. During that time, I have read, researched, tried to speak differently, and tried every trick I heard of. I could not get a handle on the specific mechanical problems and how to correct them. It was like a condition with a hundred variables with no specific tests to tell what helped or hurt. Through speech therapy, I learned easy onset and soft voicing, but this did not fit my personality or profession. The Roger Love study benefited me greatly and my voice improved, but allergies caused me to lose those gains four months later. This clinic is different in that it is a holistic approach to the problem and the healing. Skilled diagnosticians were able to assess my specific mechanical problems with voice and breathing, and also understand and advise on the human factors that would help or hurt my recovery. The 3 ½ days was more like a healing and wholeness retreat for the voice than a clinic. I made significant breakthroughs with voice and breathing and know what to do to recover my voice fully. My voice improved during and after the clinic. I then had a course in ZHT therapy designed to loosen the muscles around the vocal cords. This also helped. My voice was improving steadily UNTIL the end of May, when several prolonged stressful situations hit all at once. I was under stress from a big project, a heat wave that lasted all summer, and personal family stressors (taking in a troubled teen and her mother for a month). My breathing deteriorated and my voice practically disappeared. (When I first developed SD, I was also under several prolonged stressors.) Through hair analysis and saliva tests for adrenal stress index, I was diagnosed in the 7th of 7 stages of adrenal fatigue. I began mineral, herbal and hormonal supplementation, as well as lifestyle changes, to take the stress off my adrenals and build them up. My voice has come back, and the quality seems to parallel the degree of calmness I feel. On good days I feel very little handicapped by my voice. I have used the techniques I learned to increase resonance and allow air through my nose. However, when my anxiety rises, my breathing gets fast and shallow, and my voice goes also. I see this mainly as a challenge to improve and maintain my physical health and balance. Connie's original
instructions to me were Resonance, Release and have more fun.
(I rolled this into R&R for short) and to unstick myself..
I went back to work and got mired again in stress, which took
its toll. Connie's intuitive diagnosis was confirmed by lab
tests and the orders were the same - destress my life and
have more fun. Followups to the Third Clinic, June 2006June 7-11, Apollo Beach, Florida. We had an incredibly exciting mix of individuals for this clinic, including several attorneys, a singer/song writer, and a speech pathology major. The group solidified and provided excellent support and encouragement throughout the clinic. As promised, we addressed not only mechanics of voice and breathing, but attitudes, beliefs, life-style, nutrition, posture, strategies, and spiritual avenues. We had intense work as well as fun times together. The testimonials of the participants tell the story well. Janet: Adductor SD (9 years) It is a blessing to work with a Speech Pathologist who has been there and has struggled with the grip of SD. She is encouraging, a great coach on what particular strategies may be the most helpful, especially how to optimize what voice one can utilize in the present. She has developed an excellent protocol of disciplines to provide a holistic approach and assembled a great team to help one effectively progress to one's own voice. My voice improved 80% during the clinic. I now have better confidence and peace with my voice and recognize it as a "barometer". I know I can continue to improve. Life stressors have kept me from complying with the program of exercises I was given, but my voice is moderately to significantly better than before I attended the clinic. John Paul: Adductor SD (5 years) The Free to Speak Clinic is a breath of fresh air for those who are struggling with Spasmodic Dysphonia. A cornerstone of the clinic is that Connie, a veteran speech pathologist, is herself a SD survivor. Since the prevailing though in Western medicine is that SD is a neurological and therefore an incurable voice disorder, the irrefutable fact of Connie's full recovery -- of both her speaking and singing voice -- gives clinic participants inspiration and profound hope. But the clinic is in no way a one woman show. Connie has assembled a first class team with expertise in the areas of breathing with Michael White as well as neurolinquistic programming/neuromuscular therapy and psycho-social assessment. I found all (facilitators) to be caring, compassionate and committed. Another component of the clinic is the opportunity to interact with fellow participants in a safe and loving environment where one can learn, share, and experiment without fear of sounding or feeling foolish. Finally, the clinic has an element of Christian spirituality to it that I personally found meaningful. While nothing is shoved down anyone's throat, it is clear that Connie's faith in God was the basis of her recovery and she is comfortable sharing her journey in that context. If you are a SD sufferer who has tried everything else to no avail, then I highly recommend and strongly encourage you to consider the Free to Speak clinic. You will acquire all the skills necessary to overcome Spasmodic Dysphonia and leave with a plan of action to continue your recovery. JP reports feeling more control over his life and his voice since the clinic. He appreciates having a structured program with which to work on his voice, but that compliance has been low (at around 5-10%). He did not utilize the DVD and rates his voice just slightly better than before he completed our clinic. VHI score decreased 16 points. Dwight: Adductor SD (20 years) A great opportunity to learn techniques and strategies to significantly improve or cure your SD in the long run with continued practice. Reports no significant change in voice quality at six months but states that the clinic was a good investment and a good experience that helped him to have a better attitude and feel less handicapped by his voice (and secondary dysfluency). VHI score decreased 18 points. He rated his compliance at 50%. Leslie: Adductor SD (5 years) I am supremely grateful that I was able to attend this (clinic). The atmosphere was very encouraging. We had wonderful workshops and excellent private sessions. The dynamics of the other participants provided a rich dimension. We were all supportive on one another. The stage was set for each of us to have our eureka moments, the times we discovered the voice that we thought was lost. We rejoiced in the midst of our problem. I am leaving wi6ht the tools I need for complete recovery. I go rejoicing. Leslie’s
follow-up is complicated by the fact that she completed the
clinic while under the effects of a botox injection six weeks
prior. She was able to prolong the time until her next injection
to six months and decreased her dose. Her hopes are to continue
to go for longer periods between botox and injections, and
to be botox-free in the future. She continues to do the program
exercises and uses her follow-up with Mike and Connie to help
her to achieve her goals. Randy: Adductor SD (9 months) Connie provided exactly what I wanted - specific instructions that I could continue to use when I returned home, encouragement from her own experience that this condition can be overcome, and an experience in which I felt that it mattered to Connie that I get better. She made every effort to see that each of us received more than what we paid for. Her vivacious and warm personality was contagious and set the atmosphere for the entire clinic (experience). Lost to follow-up. Lidia: Adductor SD (2 1/2 years) It far exceeded my expectations. This weekend I had a breakthrough. I found a confidential voice (with Connie) and with Mike, found that elusive singing voice that I hadn't had for a long time. This clinic is the best because it includes so many aspects, it's the mental and the neuromuscular piece that flowed into the breathing piece, which flowed into the speaking piece. It all came together in a very supportive environment. Now I begin my quest and my mission with my speech pathologist in Canada. You guys are coming to Canada! Lidia’s VHI decreased 28 points, moving her from the Severe range of handicap to the Moderate range. She rates her current voice quality as significantly better than it was prior to completing the clinic. She continues with good compliance and has taken advantage of the follow-ups with Connie and Mike. Lidia plans to complete her own “story of voice recovery” which will be posted on the website along with voice samples.
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