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2012 

November / December 2012 Spasmodic Dysphonia Treatment Clinic

 

Bonnie: AD/SD diagnosed in August 2012 after symptoms for 5 months: Botox injections initiated in September, which helped temporarily. Reported 50% improvement in her voice at the clinic, learning to speak in a more relaxed manner. She was feeling the effects of her botox injection wearing off. She realized she was holding back her breath and needed to practice deep breathing.

 

It was a very relaxed, friendly atmosphere and I felt very at home and free from stress. Everything was well organized and professional. It felt like a spa but I learned a lot about neuromuscular massage and healthy posture, breathing properly and voice strengthening exercises. The massages were helpful, sessions with Dennis good for stretching muscles and the sessions with Connie were good for speaking, voice, breathing, and mental aspects of SD.

 

HM: AB/SD with onset in July 2011, diagnosis in June 2012. Botox was recommended but he declined. Klonopin prescribed and intermittently used. Reported 40% improvement in his voice, with confidence that he had the necessary tools to continue improvement. Became aware of breathing problems and how to change them.

 

The Free to Speak Clinic has given me hope and has provided me with the tools to go back home and continue my voice rehabilitation. I discovered the specific problems with my voice and other self-reflections that contribute to my problems. I found out my level of anxiety was one cause of my problem and that I need to focus on self-care and relaxation techniques along with good voice practice to continue to improve. It is a journey to recovery and I am happy I came to the clinic.

 

Mary: AB/SD, symptoms began in 1998. Speech therapy and counseling as initial diagnosis was MTD. After a period of recovery, her voice deteriorated in 1999, continuing a decline through 2008. Another ENT diagnosed MTD and prescribed further speech therapy and massage. In 2009 she was diagnosed with SD and botox was recommended. She had one injection and then resumed speech therapy along with acupuncture. Restored normal voice function until October 2010. Had tried Alexander technique, meditation, Pilates, and Roger Love singing exercises. Felt the voice get better and revert during the clinic. Developed a more open chest, better posture and the neck loosened.

 

A benefit of the group setting is meeting others with the same condition. This was the first time I had met anyone with SD.

 

The clinic provided a good overview of SD and a wide variety of tools to try in dealing with it. Having someone like Connie, a speech therapist who has actually had SD is very helpful. She had been there herself and is a great role model. At the end of the clinic, I realized that with SD, there will be ups and downs and to accept that “it is what it is”. Acceptance of myself as someone with SD is a good place to start.

 

Walt: AD/SD with symptoms starting in the early 1990’s and diagnosed in 1996, Botox injections yearly or semi-annually at the Mayo Clinic in Rochester. Learned not to force the voice and became more conscious of breathing and all things that affect it.

 

Fantastic… The clinic brought together the main aspects of SD; namely, posture, breathing, emotions. Each element was explored and practical tools were given to help us improve and manage SD. Connie Pike is in the unique position to offer this clinic. She has personal experience with SD and is a speech therapist. She has compassion. The team she brought together is able and caring.

 

Sharing common experiences with each other as clinic participants was invaluable. Knowing one is not alone gives hope. People of many different callings in life have been stricken with SD.

 

Barbara: Previous tracheal stenosis; 6 dilatations and then re-section and reconstruction of trachea December 2010. Was told there was nothing she could do to improve her voice, which was very upsetting to her. Surgery to stretch out/ lengthen the vocal folds was offered but with uncertain outcome. She tried massage, herbal teas, and some voice exercises intermittently.

 

Gained confidence in speaking in a higher pitch, using confidential voice, and breathing in an easier manner without pushing.

 

If you truly want to recover, you must attend Connie’s clinic. You would be foolish not to. You will be given knowledge and skills by practitioners that are not only genius mentality clinicians, but caring and blessed in their thoughts and practice.

 

There were 6 of us at the clinic – strangers from different parts of the world – that became united and helpful towards each other – understanding and feeling welcome by people with the same and similar conditions.

 

Connie, Dennis, and Christine are gifts from God!

 

I learned to think outside the box!

 

Tanya: AD/SD with gradual onset starting in 2007, diagnosed in 2010. Voice therapy, homeopathy, yoga, reflux medication, counseling, botox injections in September 2011, December 2011, March, June, and September 2012. Results were inconsistent, lasting 6-8 weeks. Learned how to coordinate breathing and speaking and focus the voice higher to release the blocked, strangled sound. Improved posture and learned to monitor her breathing.

 

I consider this trip to the clinic the longest journey of my life, not only because I traveled thousands of miles from Bulgaria, but mainly because it dramatically changed my perception of my condition and myself. The most important thing is that I realized what my weaknesses are and what I need to do in order to improve.

 

I value every minute at the clinic and highly appreciate the supportive and friendly atmosphere. Everyone has been helpful and cooperative. Robbie taught me about visualization, relaxation and ways to become more logical, self-compassionate and less emotional.

 

I was impressed with Dennis’s knowledge in so many areas and by his optimism and great sense of humor. I highly value his explanations on breathing and neurolinguistic programming, his advice to look for solutions outside the box, use knowledge yet try to overcome limitations and give priority to imagination and will power.

 

I had invaluable sessions with Connie. She helped me realize that first and foremost, I need unconditional acceptance of myself the way I am. Her personal story was touching and inspiring. She has taught me to ground my voice through humming, speak laughing, yawning, etc.

 

Christine gave us useful information on the chakras and mantras, basic yoga for relaxation. I felt so relieved after her massage treatment!

 

As I see it, the steps to solve a problem are to define the exact problem, and find the right tools. Now I have to design my strategy and work on it.

 

When I came here, I didn’t know anyone, and now I feel I have known the participants for a long time. We shared fears and hopes, helped one another, and sang together. We are united by our common goal – to find our voices and feel free to speak. I feel grateful knowing I can turn to them for advice and share my experience. Words fail me to describe how thankful I am to Connie, Dennis, Christine, Robbie and Bob!

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Incorporated in 2005 by Connie Pike, a Speech Language Pathologist who overcame her own spasmodic dysphonia and developed a passion to help others do the same.

CREATED BY: JUSTIN MCMILLEN