Follow-ups January 2008 Spasmodic Dysphonia Treatment Clinic
JD – AD/SD 4 years – botulinum toxin injections regularly 3 years with voice therapy
July 2008: After three months of attempting voice rehabilitation, JD resumed her botox injections with good success. She felt that botox was the best course of treatment for her problem. She also discovered some other medical conditions that were under control with medication. With the help of botox, she decreased her VHI from 106 (Profound) to 18 (normal).
2010-2012: On going communication via email revealed that JD began having serious side effects from her botox injections and she had since stopped the treatment. She stated that she continued to have some voice limitations.
Jared – Hyperfunctional Voice/ AD/SD– 2 years; traditional voice therapy 6 months
July 2008: Jared reported that he is about the same with regard to his voice at the six-month mark, that it can be better or worse, depending on the situation and the day. He felt the clinic was a good investment in that he has more confidence that he can someday overcome his SD. He did not view the DVD from the clinic and was about 50% compliant to the program. He took advantage of one followup phone consultation with Connie. We are hoping that Jared, like many before him, can continue to practice his program and see even more progress in the months to come. Those first six months can be the toughest ones. Once Jared did view his DVD and contact Connie, he realized his voice had improved more than he originally thought.
Leslie – AD/SD 7 ½ years – botulinum toxin injections; traditional voice therapy
Leslie opted to try the SLAD/R surgery several months after the clinic. She reported that it was a long process of recovery and her voice was weak but without spasms
Follow-ups March 2008 Spasmodic Dysphonia Treatment Clinic
Wendy – AD/SD with tremor 2.5 years – one botulinum toxin injection, acupuncture
November 2008: “The clinic was valuable in providing me with tools, especially to practice on the phone and to feel more in control of my voice. I still struggle with talking in groups of people. I believe the clinic was worth the investment to give me an alternative to botox. It also gave me encouragement that I am not just stuck with a neurological disease that can’t be fixed. The video was very helpful. Leaving the clinic with so much information, reviewing the video helped greatly to reinforce what to practice. I was very compliant the first month but it fell off by the 3rd month after the clinic. My voice is moderately improved. Some days I have a pretty normal voice, but others are difficult.”
VHI decreased 10 points.
Linda Jo – MTD – 2 years; traditional voice therapy: one botulinum toxin injection
November 2008: “The clinic was a valuable experience. I did choose to have another botox injection in mid-September. But I used my tools from the clinic often and still had a good speaking voice months later. I had extreme difficulty for about three weeks after the botox injection with absolutely no control over my voice. Eventually I was able to practice all I had learned at the clinic. Hopefully I will continue to have a good voice with continued practice and as you said, ‘Do something for your voice every day.’
With the combination of botox and the clinic breathing and voice exercises, VHI decreased 51 points and voice was rated as significantly improved.
Lidia – AD/SD with MTD 4 years – botulinum toxin injections; traditional voice therapy; repeating the clinic experience since June 2007 following increased voice demands at work and a spinal fracture.
February 2009: Lidia gave voice rehabilitation a dedicated effort, but she now sees how the techniques she learned, although they did not achieve an easy functional voice given the demands of her job, can actually improve the benefits of botox. The two can work together and it doesn’t have to be a choice between one or the other. She plans to continue regular botox injections until she can retire from her demanding job as a prosecuting attorney and devote her energy to full time voice rehabilitation.
Jackie – Mixed SD 21 years – psychiatric treatment, four botulinum toxin injections, self-directed holistic treatment
Jackie did not return the questionnaire or VHI, but in a brief email stated, “I still have fear that people will find out that I can’t really speak. I have not watched the video from the clinic. I truly believe the answer to recovering my voice is your path and I must seek counseling and get on the horse that I never got on in the first place. Nothing changes unless I change it. Thank you again and I will keep you posted on my progress. Bless you, sweet Connie!”
Follow-ups from June 2008 Spasmodic Dysphonia Treatment clinic
Barada –AD/ SD 7.5 years – four botulinum toxin injections, DVR one month improving voice 45% in 2002, acupressure massage
March 2009: “I feel moderately more control over my voice, yet my life continues to unfold in spite of my wanting to control it. I feel it was the right decision for me to go to the clinic. I don’t yet see a lot of change, but when I do practice daily, I see a difference. I made one follow-up call with Connie, and have been 20-25% compliant and just recently viewed the DVD, reminding me of what I had planned to do. My voice is slightly to moderately better. I think Connie is a gift to everyone, especially those with SD.”
Tarryn – AD/ SD 7 years – traditional voice therapy, DVR one month in 2006 with 50% improvement
(Several weeks following the clinic, Tarryn reported this in an email): “I have been really pleased with the results so far – I have maintained, which for me is great, and I have been through a lot of tests – my voice has held out – not perfect all the time but GOOD ENOUGH! The feedback is positive.”)
February 2009: I definitely have more control over my voice, but having my voice back has brought up some repressed issues and anxiety that I am dealing with now. It was absolutely a good investment. I haven’t needed much in the way of follow-up, but have emailed Connie and Mike and have been grateful for their responses. My voice is significantly improved to the point that my friends and family say it is normal. VHI decreased 48 points, from Significant Handicap to No Handicap.
May 2009: "I am happy to give feedback that I still have a fully functioning voice, something I rarely think of. The odd time it goes a bit croaky, I find myself noticing it more than anything and it usually helps to just relax and unwind the tension. No one I know or meet would say I had SD. That is awesome."
Rod – AB/SD 1.5 years – short trial of voice therapy, three botulinum toxin injections
December 2008: My voice is sometimes better and sometimes worse. I feel the clinic was a good investment for my voice and my life. The strategies I learned were great, but the most lasting help is the hope it gave me for my voice. I did not contact Mike or Connie for the free feedback and did not view the DVD. I have been around 20% compliant with the program and would rate my voice slightly better. VHI did not improve.
June 2009: Following Connie’s advice to get back on track, Rod resumed his vocal exercises and his voice returned about a month later. He was at full voice for a month, regressed, then improved again to about 40%. He found that he could read aloud normally, but it was hard to carry that over into conversation. Yet, he felt the improvement and was hopeful.
Olga – AD/SD 7 years –voice therapy, chiropractic, herbal supplements
June 2009: "I am doing GREAT. I have never felt so good and alive! I feel like I have made a huge improvement since the clinic. I have opened up to everyone about my voice condition, and everyone has been so supportive and understanding. I find it easier to tell people about my voice than having them wonder "what is wrong with her voice?" when I am speaking to them. I feel as though I can be myself. I have been going out and meeting new people on my own. I feel SUPER POWERFUL!!! I have more control over my voice, but not total control YET. I am more aware of my breathing and try to slow down. I believe that one day I will regain my true voice. Thanks for all you have done for me. I am so thankful that I met you, Connie, and Mike and everyone on the course. I have truly learned so much from all of you."
Although Olga lost touch with Connie, a parent of one of her college acquaintances informed us that she was doing very, very well years later!
Follow-ups from August/September 2008 Spasmodic Dysphonia clinics
Jane - AD/SD 6 years (but with voice difficulties beginning intermittently in 1978). No treatment other than a one-day consultation with Morton Cooper earlier this year.
May 2009: Jane did not comply with the program, allowing life to take over. She did not view the video or continue the exercises and almost a year after the clinic, found that she was not where she thought she would be. Her report back was, “When you get home from the clinic, you have high hopes and it takes true self-discipline to set aside the hours in the evening to take care of your voice and do your exercises. It becomes easy to say, “I’ll start tomorrow because there is laundry stacked up, grocery shopping, cooking dinner, bills to pay, and the dog needs full attention.” It is overwhelming to keep up with life. My problem is that I need to be held accountable and my husband will do it. I can’t leave my job to truly focus on my voice, but I would like a second chance, an appointment with you.”
June 2009: Jane came for a short visit along with her husband. It was very productive in that we reviewed her compliance contract and evaluated that she had only complied in a limited capacity, only 17%. She had never reviewed her DVD and discovered that she could still produce a normal voice. We completed a video and watched it together so she could conquer that fear of seeing herself on camera. We re-established goals and she is on her way, with her husband to keep her accountable and renewed hope for her voice recovery. She did not complete the follow-up because she admitted to failed compliance to the program. However, we hold out great hope for her future success!
Kaye –AD/SD 2 years–psychotherapy, traditional voice therapy, acupuncture
March 2009: Kaye reported that the clinic was a great investment, and that the exercises were helpful, but that she found it difficult to comply, since she was unable to take a leave from her job. In an email, she stated that, during a 2 week vacation, her voice was very good, and she realized the stress of her job made it difficult to accomplish voice rehabilitation. She estimated 50% compliance but felt that if she could quit her job, she could most likely recover her voice. She stated that she was “terrified to quit” because of the economy and simply did not feel it was an option. She also is dealing with other medical issues such as restless leg syndrome and sleep apnea. She is going to Vanderbilt for tests and treatment and still feels under pressure to get a botox treatment, but does not want to do it. Despite all the complications, her VHI did decrease by 34 points, but her voice is not significantly better on a consistent basis yet.
Silvia – AD/SD 3 years but with symptoms beginning in 1992– short trial of voice therapy, two botulinum toxin injections, acupuncture, chiropractic, Reiki.
September 2009: Silvia reported moderately improved voice and her VHI decreased 25 points. She stated that it was too easy to get caught up in everyday life, and hard to comply with the program. She continued to struggle, and eventually returned to botox treatment around 5 months after the clinic, and said that after a period of 10 days of no voice, her voice was perfect for 3 months. As the impact of the botox declined, she continued with voice exercises and felt she was improving even six months later. She recognized how much the exercises helped her when she began to struggle again. She also noticed good and bad days, according to her stress level. Silvia had never viewed the DVD because she did not want to see herself on tape. She was encouraged to do so to remind her of her success at the clinic.
Jessie– Dystonia; probably segmental involving the voice, eyes and hands and vocal tremor for over 12 years – no treatment.
September 2009: Jessie reported back that her voice was only slightly better, but felt that the voice clinic was a good investment that gave her more control over her voice. She estimated 65% compliance to her program and did not take advantage of the feedback. She stated, “I’m ashamed to say I did not view the DVD until I received the questionnaire. I KNOW that if I had viewed it when I received it, I would be farther along in my progress. I have also been busy packing to move and the seller walked out, have issues with my health and working. Things just piled up. VHI decreased 7 points, which is not a significant change.
Since the feedback I received from Jessie, she has been emailing me more frequently and working on Voiceprint, even sending me voice samples so we can work through what is happening with her voice. As I give her more instruction, I hear her voice getting stronger and better.
Craig: AD/SD diagnosed by Peter Belafsky, MD at UC/Davis in 2006, 2 months speech therapy, reflux medication, botox injections.
No follow up returned as requested but over 2 years after the clinic, Craig returned for a private consultation.
February 2011: Work had been stressful and he had 3 botox injections that had bad side effects and were not successful. He estimated 80% improvement since before the clinic, and his last injection had been in January 2010. His VHI had decreased by 39 points, moving from the Severe to Moderate range. His targeted lowering of habitual pitch had not been accomplished and he was confusing pitch with focus. These issues were addressed at the follow-up.