March 2013 Spasmodic Dysphonia Treatment Clinic
Sharyn: AB/SD diagnosed in 1990 by Dr. Herbert Dedo, and again in 2012 by Dr. Albert Merati, but as AB/SD with MTD: Self managed well by humming and singing into speech until this year. One botox injection with bad side effects and no help to the voice.
I experienced a sudden shift in voice as a direct result of Connie’s insightful instruction.
There are choices in life. We didn’t choose to get SD, but we can choose how we deal with it. Botox is one choice. Doing nothing to treat it is another. But there is a third choice, less well known, but one that offers a bright beacon of hope for those of us who are tired of scopes and injections that are simply not working for us.
I will be forever grateful that I found Connie, with her broad toolbox of techniques that can help SD sufferers to improve their speech dramatically and remove the enormous effort we’ve been expending just to speak.
What would I say to others who suffer from SD? Give yourself the gift of hope, the chance to learn a new way to speak freely again with no drugs and no stress. You may find yourself like I did: sitting in Connie’s office with tears of joy streaming down your face as you say in a strong-again voice, “It’s working! My voice is working again!”
Corrine: AD/SD diagnosis in March 2010, MS diagnosed in April 2001. Botox injections once yearly for 3 years until the 3rd was a “disaster” with difficulty swallowing and aphonia.
By Day 2 of the clinic, I found where my voice should be instead of pushing down and scraping through my old strangled voice. I improved 99%, with slips only because of bad habits. I became conscious of posture and opening up for deep breathing and letting the voice flow up and out on the breath. The instructors were amazingly gifted and talented; exceeding my expectations.
Having had SD for 3 years and a Botox shot “gone bad”, requiring short-term disability from my job due to choking on food and aspirating in my sleep, I began searching for a better approach to this serious problem. I found Connie’s Free to Speak website, ordered her book and called her, whispering “help me!” She gave me tips and told me we would have to wait for the Botox paralysis to wear off. The February 2013 clinic timing would be perfect timing, which turned out to be God’s timing for me to start my recovery of being free to speak.
I anxiously awaited with great faith that this was the hope and resolution I had been waiting for. The clinic exceeded my expectations in so many ways.
Connie, having walked in “SD shoes” gives her personal experience. Her background in Speech Therapy is another blessing and addition to the “pot of chicken soup” I experienced and witnessed in myself and others in my group.
The clinic is a wonderfully loving, compassionate atmosphere where you witness different types of SD. Everyone encourages one another and you hear progress throughout the week.
Dennis’ examples of proper breathing and posture, Tai Chi and positive life-changing motivations help make changes beneficial to the whole mind-body experience.
Christine “rocks” wonderful blessings to be gifted to relax us with body massages, chanting and yoga techniques that I will continue to use.
All the wonderful people in the clinic were the right people at the right time. It was an amazing experience for my voice, mind, body and soul.
Gary: AD/SD diagnosed by the Mayo Clinic, Rochester, 2011. Three botox injections with various results, the 3rd having more side effects such as choking.
Background: I first detected a voice change in February of 2011. I went to a regional ENT in Bemidji, Minnesota who had been recommended by my GP. He scoped my throat and diagnosed a dysphonia. He asked me some questions about my professional and personal life. The Doctor then diagnosed me with a condition that was likely related to a fear of public speaking. I doubted that was true. I accepted his diagnosis of it being short term and perhaps psychosomatic and was optimistic that it would likely resolve over time. When I asked about further treatment he suggested I seek the services of a speech coach. When I asked him if there was one he knew of or that he could recommend he said no. I had no luck in finding a speech coach here in Northern Minnesota. In June I was back to see him and suggested that the condition had worsened. He asked why I was back, I told him it was because the condition had worsened and I did not feel it was psychosomatic; I felt that it was a physical condition. He scoped my throat once again and said “I cannot help you further”. He still stated he did not feel that it was SD. After this session I did some research on the Internet found out a bit about SD and decided to get a second opinion at the Mayo Clinic in Rochester. At the Mayo Clinic the speech pathologist that I met with again scoped my throat and diagnosed me with AD SD. I was pleased to finally receive a more specific diagnosis. She provided a good consultation about the condition and gave me some personal exercises/ideas for improvement such as: trebling lips, posture during speech, breathing more effectively and possibly a few sips of alcohol before an important speaking engagement. She asked if it was worse at times and I said yes in the evening or when I was tired. She also indicated that the condition would likely worsen over a period of 18-24 months. She went on to recommend botox injections for temporary relief from the condition. Subsequently over the next ten months I had three treatments in about twelve week increments. The results were varied with the third injections having complications due to how it was administered.
As a result of the lack of effective results my wife did further exploration and learned of the “Free to Speak” clinics being held in Florida. Together we discussed the future and elected to consider a trip to the clinic in February. After a phone conversation with Connie I was committed to this approach and canceled my next botox treatment that had been scheduled for December of last year.
We came to Florida with hope and anticipation – after reading both of the Free to Speak books and using some of the tools described I felt that there could be – would be much learned from the clinic that would lead to improved speaking.
The Experience in your Home Clinic:
Connie, from the greeting at the door you, your team and your home were each welcoming and encouraging. The other participants with SD (worth noting; other than our phone call I had never communicated with anyone else with SD) were wonderful and supportive. I have to say that for me it was both reassuring and a bit scary to meet and talk with other people with SD. This was particularly true when I learned that some of the people had been dealing with this condition for decades. Even after two years there was a great deal of personal uncertainty about the condition and although some initial steps toward acceptance, a taste of denial in terms of what this condition might mean in my life. (As a life coach, consultant and public speaker I had recently made the decision to no longer do public speaking and my consulting was now limited to very small groups. Coaching over the phone was a real challenge and I was grateful that my coaching clients were understanding and sympathetic.)
There was an excellent mix of group time and personal consult; with of course some time for practice and reflection. This holistic approach for me required surrender and you have created in your home clinic a sense of peace, safety, trust and love. The other clients quickly became friends and a community of support. The assessment delivered by Robbie was key to provide a mental health perspective to the process. Christine was wonderful in her gentle spirit, firm hands as a massage therapist, gracious in her food preparation and uplifting with her yoga instruction. Dennis provided an important compliment in his expertise on breathing and how we can improve our speech through body awareness.
Connie your listening skills are a key to this work. You have the ability obviously to observe, provide powerful questions, evaluate and then suggest. You have the skill to take what you are learning from your training and practical application to continue to become a wealth of knowledge based on your students who you have learned so much from while you deliver this important life work. I learned from this time together the amazing spectrum that exists with SD – (AD. AB, jumping larynx). Each of the personal expressions of SD was so very unique.
For me the first ahhhhhh in your office allowed me to recognize what it meant to control my breathing and pitch. Your consult at that first one-on-one meeting gave me immediate results. I learned what a confidential voice was and will use this foundation to begin to expand my pitch range and my voice amplitude. The clinic taught me to be kind to my physical, emotional and spiritual body. I practice this and talk about this all the time with my life-coaching clients. I know that the awareness I have for this way of life will open the opportunity for healing and sustainable health in my voice and my life.
Robbie told me that the re-conditioning would require two hours of homework for the next year. He was responding to a direct question from me. I believe that this is true and at the same time this will also bring holistically for me a better life not just in my speaking voice.
I am continuing to consider this condition to be a blessing that will lead me to greater awareness of who I am and how I want to live my life. I am not my voice and yet my voice is important to my life. Thank you Connie for this important life work that you have claimed.
So bottom line I would rate this clinic on a scale of (1-10) as a 9+. Are there things that could be improved, yes. Are all of the foundational pieces well in place; in my opinion, absolutely. You have established this work on amazing principals Connie. I would describe them this way; first as a life calling with pure intention, with love, with gratitude, with a view of the person as a whole person, with delivering hope for a better tomorrow, with acceptance for what is, with little judgment against the system and what it represents, with an appreciation and respect for the spiritual component. And most importantly one special person at a time! ~ Gary
Candace: AD/SD, essential tremor, reflux. The SD was diagnosed in 1993 by Dr. Dougherty in Miami and Botox was recommended.
Periodic injections in Miami and in NYC by Dr. Blitzer yielded inconsistent results. Last injection was September 2012 with minimal improvement. ***Note by Connie, Candace was never given information about her specific condition in whole. Her mother had SD, hand and head tremors; Candace has essential tremor with hand tremors and she suspects mild symptoms in her adult children. She also has reflux and consistent hoarseness and a history of breast cancer. She was encouraged to get an updated ENT exam to rule out pathology and to consult with her neurologist regarding medication for ET. Learned to elevate my pitch and use more forward resonance and reverse my breathing patterns.
After 20 years of living with SD, I have, for the first time, been given tools to help ease the tremors either without or in conjunction with botox. Through attending Connie Pike’s clinic, I have seen first hand her expertise in treating varied types of SD.
I would encourage any sufferer to experience a consultation with Connie to explore the many options available in treating SD.
Gordon: AD/SD with gradual onset starting in 1993, diagnosed in 1998 in London.
Botox injections with Mr. Gerald Brooks resulted in excellent improvement and he continued every 16 weeks. While there was some variation, and voice was judged to be 80% of “normal” with good projection without tremor, but inability to sing or recite in church. Average improvement with injections lasted 8 weeks. Speaking from personal experience of attendance at this unique clinic, I would have no hesitation in recommending it to anyone with SD (laryngeal dystonia) and especially to those with reservations, objections or adverse reactions to the usually recommended botox injections.
The approach is holistic: addressing body, mind and spirit through varying but interconnected activities. The personal attention devoted to each participant (bearing in mind that all have differing needs) by Connie Pike and her specialist team, is central to the success of the clinic. Significantly more time can be directed towards individual needs than is usually the case elsewhere. Additionally, close interactivity within the participant group is a source of great encouragement.
Last, but not least, the clinic is not held in an institutional environment, but in the tranquil surroundings of Connie’s beautiful waterside home in Florida. The value of this setting should not be underestimated.
I personally came away in better voice than for 14 years, but mindful of the work ahead to maintain the level achieved at the clinic.
Gordon Jewkes, Beaconsfield, UK
Chuck: AD/SD onset in 2008, diagnosed in 2009; also diagnosed with sleep apnea in 2009, requiring CPAP, confirmed acid reflux.
Botox injections 11/09, 3/11. Both resulted in a month of aphonia and short improvement following. Klonopin, Dr. Cooper 5 days in 11/11, never fully recovering. Traditional voice therapy with little improvement. Experienced 50-60% improved voice at the clinic. I was able to identify and reinforce my proper pitch and learn techniques to keep my larynx from moving up, although I have a ways to go on that movement. I learned the proper technique for diaphragmatic breathing.
Without a doubt, this clinic exceeded my expectations. I had a pre-conceived set of ideas on what I needed to work on prior to the clinic, as a result of seeing Morton Cooper in 2011. Connie’s clinic touched multiple additional aspects of the body/life that are important influential factors in SD.
I would say, foremost, Connie’s experience in her own recovery and then relapse make the experience invaluable and effective. The compassion she has for her patients is genuine and helps tremendously in finding and maintaining hope. How often can a practitioner really empathize with a patient dealing with a rare disorder?
The holistic approach is key to the success of recovery from this condition. The approach doesn’t end with breathing, stress reduction, nutrition, etc. The fellowship and spiritual aspect of the 5 days were equally important.
I would like to thank Connie, Dennis, Christine, and Robbie for the program they have developed. This was a Life Clinic as well as a Voice Clinic!