Follow-up 2006 Spasmodic Dysphonia Treatment Clinics
Nancy - Voice problems started in 1972 with a tremor, progressing over the years to a more strangled voice, spent 4 weeks with Morton Cooper, which helped her find a better voice but she was unable to sustain it.
July 2006: “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 – AD/SD diagnosed at Shand’s in 2005 after a slow deterioration of her voice over 5 years. Botox gave her minimal improvement.
September 2006: “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.” 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.’ VHI decreased 50 points; moving from the severe range of disability to no handicap perceived relative to the voice.
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. – Voice problems started as a hard glottal attack and progressed to AB/SD in 1996. Speech therapy and psychotherapy.
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 – Developed voice problems in 1999 during a period of intense emotional and job stress. Tried botox with good results for 3 months. Roger Love SD clinic.
October 2006: “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 – de-stress my life and have more fun.
June 2006 Spasmodic Dysphonia Treatment Folllow-ups
Janet: Adductor SD for 9 years
January 2007: “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 for 5 years, unsuccessful botox treatments, reflux medications, alternative treatments including acupuncture, massage, Rolfing, chiropractic, hypnotherapy, one month with Morton Cooper.
January 2007: “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.
March 2009: “My voice is about the same. I get by pretty well and people understand me and are patient. My life is getting less stressful. I don’t really get locked up anymore. I am compromised by SD, and it’s been 7 years so I am contemplating what I should do next.” Connie encouraged JP to use his singing voice, that was emerging, as a pathway to his speaking voice and use confidential voice as well as continuing to develop his breathing.
September 2010: JP called Connie and the results were shocking. His voice was clear and smooth and he even sang a song. Why 5 years, I asked, and what did you do? He said he had considered SLAD/R surgery and declined only because his insurance would not cover, lived with it, accepted it, tried to manage stress. Many life changes had occurred that resulted in a calmer lifestyle and most importantly, he began singing again. Previously a professional singer, SD had robbed him of his singing voice. He saw a glimpse of it at the clinic, and sometimes singing in church, but he did not pursue it. Once he did, his voice began to strengthen and then carryover to his speaking voice. Did not re-take the VHI.
Dwight: Adductor SD for 20 years
January 2007: 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 for 5 years, botox every 4 months
February 2007: 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. “I have run the gamut of successes and failures (since the clinic). It is a good program and I would consider doing it again. I’ve had another botox shot with a different doctor and my voice was a bit gravely. It seems to be easier to do the exercises after botox.”
JULY 2007: “I am still getting botox shots. He has not been able to hit the mark the last two times, but this time he did. I still think I might like to do a refresher clinic.”
January 2008: Leslie came to a second clinic with the goal of becoming botox-free. Three months later she emailed that she was doing well.
June 2008: Leslie decided to have SLAD/R surgery with Dr. Berke. She considered it a success albeit with a long recovery period and a quiet voice with difficulty singing. She said it was good to have no spasms.
March 2007: 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’s VHI decreased 28 points, moving her from the Severe range of handicap to the Moderate range. She had taken some time off work to devote to re-grooving her voice. She continued her speech therapy with a local therapist. “The clinic got me started in the right direction. I realized that I need to make some significant changes in my life that I am struggling with to this date. I am about 75% compliant and my voice can be slightly better or significantly better depending on the conditions.”
After returning to her job as a Crown Attorney, the court work simply took its toll.
February 2008: Lidia returned for a second clinic. She came to the realization that in order to really beat SD, she would need to stop everything – her job, her social and professional engagements, social events, and concentrate on re-grooving her voice. This not being possible, she decided to revisit botox later that year. Beginning in October 2008, she was having botox every 1-2 months, eventually settling into a 3-4 month schedule. While not completely happy with the results each time, it did allow her to continue working. She was looking to retirement as soon as reasonably possible as a time to revisit voice rehabilitation.
OCTOBER 2006 SPASMODIC DYSPHONIA TREATMENT FOLLOW-UPS
Lorelei – AD/SD and MTD for 2+ years
July 2007: Lorelei had decided to change careers and was not only in the business world as a broker, but trying out for the National Guards at the time of follow-up. She felt it was difficult to find time to do the voice exercises and VHI had not changed. “When time permits to do the exercises I learned at the clinic, there is improvement, but it does not last. I have been 40% compliant and the video was helpful. My voice is slightly better overall. A few extra days at the clinic would have been good.” No further follow-up.
Marsha – AD/SD 2+ years
July 2007: “ I am embarrassed with my 6 month feed-back. I have always had a problem with commitment. I decided to leave the pity party and begin again. Life is a succession of New Beginnings. I learned techniques if I would only practice them. I did not take advantage of the follow-up sessions because I had not practiced. I was about 10% compliant to the program. My voice is not better, it may be worse.” No further follow-up.
Jim: AD/SD 2 years, gradual onset since 1993; treatment with Morton Cooper, and Alma Vajas (singing therapy)
May 2007: “My voice is significantly improved. I am preaching and people consider my voice as normal although I do have to think about it and have some hesitations.” VHI decreased from 59 (Moderate) to 6 (normal).
October 2009: Jim graciously called me regularly, usually on Sunday morning when he knew I was having a clinic, to wish us well and offer a prayer. His phone conversations were always clear and with normal voicing. He returned the VHI again 3 years following the clinic and his total score of 7 was in the normal range.
KR: AD/SD with tremor diagnosed in January 2004, treated for reflux, alternative treatments including herbs and essential oils and chiropractic
July 2007: “I feel more control over my voice and my life. I don’t like the way I sound sometimes, but I do use the phone more and the drive-through at restaurants. I don’t let my phone keep me from living and doing the things I need to do.”
VHI decreased 43 points.
Margaret: SD/MTD – mixed diagnosed in 2005, first diagnosed with reflux, botox
May 2007: “I definitely have more control over my voice now. The clinic was a great investment AND my insurance covered the cost! It is so important to understand the process of recovering my voice (as opposed to a quick fix), and learning to have patience and confidence that this can be done. I have been 80% compliant and my voice has significantly improved.” VHI decreased 25 points and moved from the moderate to the minimum to no handicap range.
DECEMBER 2006 SPASMODIC DYSPHONIA TREATMENT FOLLOW-UPS (Windsor, UK)
* While there were 6 participants in the only UK clinic to be held, it was difficult to get feedback from this group. Half of the group provided feedback.
Shona: AD/SD for 11 years, regular botox injections every 3 months for 11 years
August 2007: “I absolutely have major additional control over my voice and life. Everything has changed for me since deciding to stop botox. I have not intention of ever returning to it. I understand more about my mind and body relationship. Having strengthened my voice to such a degree where I believe it is near normal, I believe that my challenge is now psychological blocks that click in with the anticipation of speaking. Spontaneous speech is great. I have started a program of Emotional Freedom Technique and cognitive hypnotherapy. My voice has significantly improved.”
VHI had decreased 37 points.
April 2011: VHI had decreased to 12 (normal) and Shona met with Connie in London for lunch. They had a perfectly normal chat with no voice issues!
Gillian: AD/SD 10+ years, botox treatments
August 2007: “ The clinic helped me to realize that I can survive with botox injections and have a voice. Before, I never thought I could have functioned at all. I went 13 months without botox, and then decided to try a very small dose although I don’t feel totally dependent on it. I have mixed feelings because when the botox is at it’s peak, my voice is really good, but when I have side effects for 8 weeks, that is not good. My voice is significantly better than before the clinic.
Sarah: AB/SD 8 years
August 2007: “My voice is slightly to moderately improved. I’ve been too busy to do the exercises, so maybe 25% compliant. I’ve been in a very busy period taking care of 2 young children and overlooking a total home renovation.” VHI had not significantly decreased.
October 2011: Sarah visited Connie in London for a few hours. She sounded amazing despite having lost her mother in a tragic accident and having a third child to care for. She was calm, and felt that she had used the techniques and strategies over time and her voice responded.