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Long Term Follow-ups – 2007 clinics - Spasmodic Dysphonia Treatment
January 2007 Clinic
BT: AD/SD with tremor since 2001, allergy testing, Botox 4 times with various results.
August 2007: “Eleven months botox free, I’ve been 75% compliant and feel like my voice is moderately improved. I have addressed some stress and depression and I feel much better.” VHI had decreased 69 points, from Severe (100) to 31 (mild).
November 2008: “I am almost 2 years post visit to your clinic. My ability to speak clearly has improved. No one seems to notice if I spasm on a word. I still utilize the techniques I learned at the clinic. I know to stop and relax and avoid pushing.”
Connie: SD since 2003, botox treatments
August 2007: “I have been 80% compliant with the program and feel my voice is moderately improved. I am pleased with my progress. I can sometimes speak in a normal voice and it surprises people.” VHI decreased 30 points.
Carl: SD since 2000, speech therapy 10 months
July 2008: Carl did not return his VHI or follow-up questionnaire, but in a brief email, stated that he had been totally non compliant to the program and new he needed to just start over.
Karen: AD/SD diagnosed in 2001 at Mayo Clinic, Type II thyroplasty in January 2004 lasted 3-4 months, followed by two additional surgeries in 2004/05
August 2007: “My voice has significantly improved since the clinic. I have been 75% compliant to the program.” VHI decreased 34 points.
Michelle: AB/SD since December 2003, speech therapy 8 months, botox 2 times with poor results, Dr. Cooper’s program 2 weeks
August 2007: “I have been about 50% compliant and feel I am moderately improved.” VHI decreased 36 points.
July 2011: “I am continuing to improve and am teaching Pilates regularly. When you give up the stress of thinking about how you sound, your voice improves. You friends, family and clients don’t’ really care.” VHI had decreased an additional 19 points.
May 2007 Spasmodic Dysphonia Treatment Clinic
Jill – Adductor SD 18 months (2 botox injections)
January 2008: “The clinic was a good investment in that I received a plan of vocal and breathing exercises. My compliance has been only about 30% and I have not viewed my DVD or taken advantage of the free follow-up yet. Therefore, there has been no significant change in my voice. I believe this is directly related to the fact that I forget to do my exercises and I need to be more disciplined in order to make an accurate assessment. I have not resumed botox injections because I feel I need to give the program a chance to work by improving my compliance.”
Donna – Abductor SD 7 years; s/p bilateral silastic thyroplasty 3 ½ years ago, vocal tremor
January 2008: “The clinic was a good investment as I know have the tools and techniques to practice to improve my voice and hope that it will continue to improve. My compliance has been around 30%. The DVD was extremely helpful by reminding me of what I should be doing and how much improved my voice was by the end of the clinic. My voice is moderately better than before I attended the clinic.”
VHI decreased 36 points, moving from the Severe to the Moderate range.
August 2012: “I attended your clinic in May 2007 and really felt good about my voice after the clinic ended. I had great intentions of continuing to practice, etc., but despite that, I did not continue to practice. I probably thought my voice would just stay at the improved level without effort. But, instead, my voice continued to deteriorate through the past 5 years. Then, this past Spring, I must have hit a new low and decided I needed to do something about my voice. I started Speech therapy with a local SLP. I went to a massage therapist and she released a lot of tension in my solar plexus area which allowed me, for the first time in a long time, to take deep breaths. I also started seeing an acupuncture doctor which helped my voice, as well as decreased congestion, reflux and muscle tension throughout my body.
The bottom line is that all of this reinforced what I learned at your clinic. Perhaps I wasn't ready to tackle it all when I was at the clinic. I didn't continue with the exercises it takes to overcome bad voice patterns. For the first time since the clinic, I now feel in control of my voice and my husband and others can understand me. I don't have to keep repeating everything. I re-learned how to relax my neck, hydrate, SLOW down when I speak and breathe correctly. I practice now almost every day - and continue to use parts of the notebook from the clinic, especially the exercises to reduce my tremor and Roger Love's CD/Alexander CD. I am humming and using a microphone so I can easily hear my voice.
There definitely is hope, and my voice is not perfect, but it is so much better since I have been through speech therapy again. I had given up hope. Although you had put everything in the compliance contract, I think I was overwhelmed. The bottom line is that I believe your approach is 100% on the mark. I have never tried botox but had bilateral thyroplasty in 2004. I just wanted to touch base and tell you how my recent experience reinforced everything you had said at the clinic 5 years ago. It just took me awhile to see that I needed to work at getting better, and that works!”
Bob – Adductor SD 2 years
Bob experienced some major life stressors in the months following the clinic. He was unable to resume his speech therapy.
January 2008 “I realize that stress is a major factor with my voice and am working to control that. I know that my good voice is in there. I just need to find the key again. My voice is slightly better. The DVD is helpful in that I can hear how much my voice improved at the clinic.”
VHI decreased 5 points.
May 2008: Bob’s feedback at one year was markedly different. He reported much more control over his voice, with much less effort. “The voice clinic was the best thing for me. It let me know the good voice was there. I just had to work it out. I have been 60% compliant and my voice is significantly improved.”
VHI decreased 44 points.
Laura – Mixed SD 6 years
April 2009: Almost two years, after the clinic, Laura apologized for being one of our “disappearing participants.” We often wonder why people are lost to follow-up, so we were pleased to get her delayed report.
“I admit to not following all the exercises diligently. But I have exercised my dominion by deciding to answer the telephone and do my own calling. I have noticed that my voice gets worse when I am in high stress situations and then relaxes when I am more relaxed. One thing that is consistently true now is that the wall that used to be in my throat blocking both breathing and speaking is now always down. As a result, my voice is getting stronger – I even sit and read to my grandchildren. As I use my voice more, the easier it is to keep using it. I am finding that breathing is behaving itself more too. I think what was more valuable for me from the clinic was simply learning how my voice and breathing should be acting. Now I can monitor them and make adjustments when I catch myself off base.”
July 2009: Laura continues to experience success. "I am constantly getting comments about how much better my voice is now. I had finally decided that "yes, I can talk" and that is what allowed me to mentally let go of the embarrassment of talking 'not well'. When the SD flares up is when we need to not give in is how I see it. When the SD started there was a constant little voice that kept saying 'you can't talk' and yet I was still talking just fine until that message took over. Now my mantra is "I CAN TALK and I know it." When I am in good conversation under good circumstances with low to no background noise, with those whom I enjoy, then there is no effort and I forget to even make an effort and my voice is 100%. On days when I have worked hard and am tired physically and mentally, the voice is more of an effort but at least I have the tools so that I do not lose my voice entirely. It was a year after the clinic when, through prayer and the realization that I do have the capacity to speak clearly. As a matter of functionally, I'm close to 100% - still working on perfect tone and pitch and projection."
December 2010: “Connie, I love hearing about your work and the things you are continuing to learn. I’m finding the same things to be true – immersion in work that I love leaves me free to speak without inhibition. I think that the love is the key. And fretting over the raspiness or strength is just a downward spiral. I’m also noticing that walking, or any other exercise that gets me standing up straight and tall (like ice skating) and breathing properly is also a tremendous help.
Just to illustrate how good my voice is getting, I was recently nominated to be the First Reader at our church. Keep up your good work. We love you for it!”
Long Term Follow-ups – July 2007 Spasmodic Dysphoina Treatment Clinics
Esther – MTD 8 years, s/p medialization of vocal folds, vocal fold paresis, traditional voice therapy.
August 2008: “I feel I have more control over my voice and my life. For example, I’m using less effort to speak, I feel more comfortable using the phone and speaking to people. I feel people can hear and understand me better. The voice intensive made me realize the need to make some changes in my life in order to improve my voice. I have taken advantage of the follow-up and been 70% compliant to the program. My voice is moderately better at this point. A longer clinic with more sessions would be helpful.”
VHI decreased 40 points.
Debra – AD/SD 15 months
“My voice has most definitely significantly improved. It was a great investment. I have viewed the DVD which was helpful, taken advantage of follow-up by email and I think you guys should keep doing what you are doing. You are great!”
VHI decreased 50 points.
July 2009: Two years after the clinic, Debra's voice continues to be functional 100% of the time and she visited recently to demonstrate this to me. While she feels difficulty in speaking at times of stress, she realizes that it is just about adjusting the breathing and focus and the voice is consistently there. Her VHI decreased again and is now in the No Handicap range.
"I am thankful everyday for the changes you brought to my life I no longer that medication for anxiety because of voice problems while teaching. I remember standing in front of my students with sweat rolling down my back because of having to try to speak before your clinic. That is no longer an issue thanks to you and Mike. I have realized how much a part stress plays in how my voice is working, so I have worked to calm down my life No one ever notices or comments on my voice, and it's so great to meet new people who have no idea I ever had a voice disorder."
Peter – AD/SD 15 years – botulinum toxin injections twice yearly (Dysport) for 11 years
“Yes, I have improved control over my voice and my life and consider the clinic a good investment. I now have a tool kit to dip into as problems occur. Compliance has been 80% and my voice is moderately improved.”
VHI decreased 32 points.
Rebecca – Mixed SD 3 years, traditional voice therapy, ZHT
January 2009: “Sorry it has taken me so long. It has been hard to face my disappointment. Also, I believe the work you are doing is good and do not want to discourage it. But for me, it didn’t work. I did the exercises religiously for 4 months during which time my speaking steadily deteriorated.
A year ago, I tried botox for the first time. It worked for two weeks during which I could speak softly, very easily, and quickly. Then my spasms started to return at which time I started speaking on inhalation. In a couple of weeks, I was speaking quite easily while inhaling and have dropped my exhaling speaking almost completely, except for practicing. I tried botox two more times but it did nothing but give me a bad sore throat.
I get by with inspiratory speaking – people often tell me I am speaking much better. But I consider that like telling someone on crutches they are walking good. To me, I figure I can’t talk at all. I’ve also lost my ability to sing and had to leave the choir I loved.
I have not completely abandoned hope and try to keep listening for what the universe is offering. I wish you all the best.”
EM – AD/SD 3 years
March 2008: “ I returned from the clinic with a better understanding of what was going on with my voice and how my body was reacting. I felt that I gained a little control over my voice at the clinic that stayed with me. I have just begun to do the therapy on a consistent basis and hope that will result in more control as I go along. The clinic was a good investment, not only for the education on breathing and voice, but also for the interaction that it facilitates among people with SD. Even without continuing the exercises, I feel the clinic was a good investment. The lessons with Connie on Voiceprint were helpful. The visual feedback was great. Connie and Mike pointed out specific areas that I needed to focus on and the feedback was very helpful. It also helped me become more accepting of my voice. I did not comply with the program until about a month ago. Now I am close to 100%. I have not taken advantage of the followup or viewed the DVD yet. My voice is slightly to moderately better at this point.”
VHI decreased 35 points.
Lisa – AD/SD 24 years (approximately 98 botox injections, SLAD/R (failed), s/p silastic thyroplasty 3 years prior)
April 2008: “I now have improved control over my voice and my life. The clinic was a good investment. I have taken advantage of follow-up by phone and email and have been 90% compliant. My voice is moderately improved.” VHI decreased 44 points.
Ruth – AD/SD with intermittent symptoms for 3 years, but diagnosed 3 months ago
April 2008: “I do feel that I have improved control over my voice, which also has improved my control over my life. Before, I was letting my voice control me; avoiding people – including family members and hiding from my voice problem. I was scared, but it did me a lot of good to just bite the bullet and tell myself that you have to do something to fix it – no one can do it for you. The clinic was an extremely good investment. Not only did I acquire the tools to help my voice, I realized that I’m not alone. There are other people like me struggling with SD, and I made some lasting friendships at the clinic. The group dynamics were wonderful. I have been about 40% compliant and have not taken advantage of the follow-up, although I am not sure why. My voice is moderately improved.”
VHI decreased 37 points.
Jann – AD/SD 1 ½ years
February 2009: “My voice is really about the same. I thought I could return to work after the clinic but have gone on disability. I still feel the clinic was a good investment and that my voice is in there, I’m sure. I was compliant for the first 4 months, but my voice felt strained, so I stopped. The video was helpful and the clinic was well thought out. I have had some encouraging emails from fellow participants and realize that I was putting too much effort into my exercises. It was exhausting. I became overwhelmed and worried. I am going to try to incorporate a small amount of practice everyday and back off when I feel strained.”
Ron – AD/SD 1 year (2 botox injections)
April 2008: “I feel improved control over my voice and my life. About three weeks after the clinic, I panicked that I was not going to be ready to go back to teaching in the fall and had a botox injection. It caused breathiness and weakness for over four weeks. It set me back on my rehabilitation until the effects wore off. I was then able to work toward recovery using the methods from Connie and Mike. I estimate that I am about halfway through my recovery now. I am having longer periods of good voicing. I have taken advantage of email follow-up and viewed the DVD. My compliance is currently at 80%. My voice is moderately improved. The overall balance of therapy, breathing and psychology seems right. The holistic approach is key, as every element has been helpful.”
VHI decreased 41 points.
July 2008: Ron’s experience with his voice recovery was remarkable. An email from 6/30/08 summarized this well. “My voice is at about 95-100%, continuing to improve. What I absolutely love about this voice is that I’m sensing that it is better now than it was BEFORE the dysphonia. I notice how lively the voice sounds now, and how expressive it is at a range of levels, tones and cadences. I’m having fun with my voice in ways that I never even thought possible. The process of “slowing down” has been key to my overall neurological makeover, including the neck. Also, I have been so much more aware of proper breathing that I now integrate it effortlessly into my daily life, without doing any formal exercises.”
July 2009: "What is interesting to me is that when my voice is in the 100% range, it's better than I ever remembered it being before the onset of SD. And even when it slips a bit, I still have really good resonance. I think a lot of our concerns about how our voices sound comes from being more in tune with our voice mechanics, which is a very good thing. I pay more attention to other people's voices, and based on that, I would rate your voice, Connie, and mine as among the best I've heard, when the vocal cords are performing at the top of their ability"
April 2010: “My voice is the best it has ever been – and I mean prior to the dysphonia. I did have to overcome some slippage with the voice; some increased hoarseness and tightness that lasted for a few months late last year and early this year. But now, in the middle of one of the most stressful periods for me as graduate director of our Department, where everything has come due, and in the midst of working on two book projects, my voice has an energy and vitality that I’m very proud of.
See Ron's YouTube Video at http://www.youtube.com/watch?v=iXGsAsGV1S8
Jeroen: SD since July 2006, polyp removal
No feedback was received at the requested time line. However, an email in April 2009 revealed that he had found the “key” to recovery. Through an NLP trainer at a work event for his job as an Optician, he was told that he was breathing too deeply and holding back his breath, as well as speaking too loudly. He stated that he finally understood what I meant by confidential voice and that his voice was beginning to flow more normally. Jeroen’s recovery was so remarkable, he wrote a book and developed a series of videos. He has started to consult with SD clients through SKYPE.
Follow-ups November 2007 Spasmodic Dysphonia Treatment Clinic
Joanna – AB/SD 2.5 years
July 2008: “The clinic was a good investment, especially the Roger Love and breathing exercises. I have not taken advantage of the follow-up due to my extensive travel schedule and have been about 50% compliant. My voice is moderately improved and functions well most of the time, just about normal. I can really feel the difference when I do the exercises and if I get sufficient rest and minimize alcohol. My rushed and stressful life-style has a negative effect on my voice at times.”
VHI decreased 39 points, moving from a Serious handicap to the Low Moderate handicap range.
Christine - Mixed SD/MTD 15 years – botulinum toxin injections 10 years, traditional voice therapy
May 2008: VHI decreased 34 points, moving from the Serious and Significant Handicap category to the Low moderate category
Debbie – AB/SD 1.5 years
June 2008: “I have extremely better control of my voice. I’ve been placed in every difficult professional situation since without a problem. The clinic was a good investment that I’d do again. All of the necessary tools were provided. You just have to maintain faith and work at it. I was 80% compliant and my DVD told me everything I needed to know. My voice is mostly normal, significantly improved at its worst.”
(VHI decreased 105 points, moving from the Serious and Significant Handicap category to No Handicap)
Loreen – AB/SD – 9 years – botulinum toxin injections ineffective
July 2008: “I feel somewhat more in control of my voice and my life at six months after the clinic. It gave me so much more knowledge and understanding of SD and tools. I am more conscious of my breathing now. My compliance has been low, at about 5% and my voice is moderately improved.”