 2/28/09 North Texas Spasmodic Dysphonia Support Group Meeting
MEETING FORMAT:
We had an excellent meeting in the executive board room at Trinity Medical Center, which is very quiet, comfortable, and allows participants to sit around the conference table. This traditional support group format makes it very easy for anyone to participate and be seen and heard by everyone else.
We had 15 people in attendance -- twelve with SD (including co-leaders Lori and Trisha), one spouse, one partner, and our guest speaker. We encourage spouses, partners, family members, and friends to attend the meetings and learn more about SD and how to support their loved one with this difficult and frustrating disorder.
Many handouts were available and more information about them is provided below for those who were unable to attend the meeting.
INTRODUCTIONS:
We started the meeting by going around the table and having everyone introduce themselves, talk about their experience with SD, procedures they’ve had, treatment options, and different medical professionals.
We also introduced the website that Trisha created for our support group at www.ntxsdsupport.com.
FUTURE MEETING LOCATIONS:
We really need help finding a location for our next meeting, hopefully in June, and would appreciate any suggestions. As discussed, our goal is to move the meetings around the Metroplex in order to make it easier for more people to attend. We were hoping that our next meeting could be near the Arlington area. If you have ideas, please let us know as soon as possible.
GUEST SPEAKER – SUSAN SHULMAN MS, CCC, SP/A
Ms. Shulman received a Master of Science Degree in Speech-Language Pathology from North Texas State University in 1969. She is licensed by the State of Texas in both Speech Pathology and Audiology. She has made more than 25 educational presentations and workshops to speech, hearing, medical, and surgical groups in eight states. She has had four articles published in professional journals and has been interviewed on CNN, local television, and radio shows, with special emphasis on Spasmodic Dysphonia. In 1978, she co-founded Speech Pathology Services in Dallas. Ms. Shulman has more 30 years of clinical experience in medical and private practice specializing in the treatment of adult voice disorders. There are few medical professionals who have more experience diagnosing and treating SD.
Ms. Shulman discussed the importance of proper breath support and keeping the jaw, neck, and throat muscles as relaxed as possible. One of her specialties, which she includes in each speech therapy session, is the circumlaryngeal massage. This helps relax the muscles and lower the larynx, which is a common problem with those who have SD and strain to make their voices heard.
Ms. Shulman demonstrated this laryngeal massage on Lori and then, much to everyone’s delight; she went around the table and performed a mini-massage and lesson on everyone with SD who wanted to try it.
NSDA – BENEFITS OF MEMBERSHIP AND SERVICES AVAILABLE:
We discussed the National Spasmodic Dysphonia Association (NSDA), which sponsors our support group. NSDA is a volunteer driven organization that provides support to SD patients through formal support groups, on-line activities, medical referrals, informative brochures, and newsletters. NSDA is dedicated to research, awareness, and support. To find out more about NSDA, check out their website at www.dysphonia.org. To join, support their efforts, and receive their email updates and newsletters, visit www.dysphonia.org/join.
SPASMODIC DYSPHONIA ONLINE BULLETIN BOARD:
The NSDA also sponsors an online bulletin board where SD patients can communicate with each other, find support, and share information. It is an invaluable resource that can be accessed at www.dysphonia-bb.org/forums/sd.
NSDA ANNUAL SYMPOSIUM:
The NSDA Annual Symposium will be held on Saturday, April 4 in Charlotte, NC. Guest speakers will include Diane Rehm from National Public Radio, who has continued her popular radio program despite being diagnosed with SD in 1988. For more information about the symposium or to register, visit www.dysphonia.org/events/event.asp?id=1961.
Other famous people with SD include Robert F. Kennedy, Jr. (lawyer, public activist), Scott Adams (creator of the Dilbert comic strip, author), Chip Hanauer (famous hydroplane racer), and Johnny Bush (singer, songwriter).
SPOKEMAN AMPLIFIER AND HI-GAIN 3-WAY HEADBAND MICROPHONE:
Trisha and Lori each used and demonstrated their use of the Spokeman personal amplifier, which comes in a little case that can be set on the table, clipped on your belt, or worn around the upper arm like an iPod. We also both use the Hi-Gain 3-Way Headband Microphone, which can be worn around the back of the head, over the top of the head, or around the back of the neck.
Lori purchased hers from Soundbytes at www.soundbytes.com and Trisha got hers from Luminaud at www.luminaud.com. The prices are the same. The Soundbytes website is much better and easier to use and you can order online. With Luminaud, you have to call, mail, or fax your order. Both places have a 30 day, money back return policy, so if you think it might help, you can at least try it out first.
FREE AMPLIFIED PHONE THROUGH TEXAS STAP PROGRAM:
We also had on display the Ameriphone XL-30 Amplified Telephone, which amplifies the outgoing voice up to 18 decibels. It’s so much easier to talk on the phone knowing that your voice sounds better and stronger and that it’s not necessary to strain.
Both Lori and Trisha received this phone free through the Texas Specialized Telecommunication Assistance Program (STAP), which provides free equipment to Texas residents (regardless of income) who have a disability that limits their ability to use the telephone. Program details can be found at www.dars.state.tx.us/dhhs/stap.shtml.
There are many authorized vendors that can help you obtain this phone. Trisha and Lori both used Hearing Masters, located at 13327 Montford Dr. in Dallas. Their phone number is 972.490.3883 and their website is www.hearingmasters.com. If you stop by or call, just tell them that you want to order the same phone as Lori DeLuca and they can look up the information and help you fill out the form.
YOUTUBE VIDEO BY DR. ROBERT BASTIAN:
If you're not sure which type of dysphonia you have or just want to learn more about it, check out this YouTube video by Dr. Robert Bastian at http://www.youtube.com/watch?v=3m21wKQJwcU.
It starts off a little slow, but you'll be amazed. Dr. Bastian is a leader in the diagnosis and treatment of Spasmodic Dysphonia and he also serves as Chair of the NSDA Medical Advisory Board.
On this video, he reviews the various types and subtypes of a Spasmodic Dysphonia. Numerous voice examples are included, along with videos of the vocal folds for normal, ADSD, and ABSD. It's absolutely amazing how he can personally mimic the various forms of SD.
BOTOX PATIENT ASSISTANCE PROGRAM:
There was discussion about the Botox Patient Assistance Program, which helps with insurance benefits, working through appeals, or providing Botox at no charge to financially eligible patients who are either uninsured or underinsured.
More information and applications are available by calling their hotline at 1-800-44-BOTOX (1.800.442.6869) or on their website at www.BotoxPatientAssistance.com.
SUPPORT MATERIALS AVAILABLE FROM NSDA:
We had many brochures and support materials available. These, and others, can be obtained at our support group meetings, or can be ordered online directly from the NSDA for little or no charge at www.dysphonia.org/publications/publications.asp.
Understanding Spasmodic Dysphonia
Price: n/c
This brochure examines the symptoms, causes, and treatments for Spasmodic Dysphonia along with an explanation of the goals of the NSDA.
Spasmodic Dysphonia General Kit
Price: n/c
This introduction packet includes information on the symptoms of and treatment for Spasmodic Dysphonia along with a copy of the NSDA Newsletter.
Three-Fold Wallet Card on Spasmodic Dysphonia
Price: $0.10
This handy business-size card explains what Spasmodic Dysphonia is and is great to hand out to friends, relatives, acquaintances, or anyone who wants or needs to know more about SD. If someone asks what’s wrong with your voice, hand them one of these. They can be ordered in bulk quantities.
Laryngeal Denervation Reinnervation Surgery for Adductor Spasmodic Dysphonia
Price: $0.20
This brochure includes general information on the surgery, as well as risks and benefits.
Your Botulinum Toxin Injection... What to Expect
Price: $0.20
This brochure provides an overview of the expectations of Botox injections for both ADductor and ABductor Spasmodic Dysphonia.
Insurance Assistance and the Appeal Process:
Price: $2.50 or download for free at http://www.dysphonia.org/upload/pub_126_2008-02-13_125614/NSDA%20Insurance%20Booklet.pdf
Guidelines for insurance approval and the appeal process in the treatment of Spasmodic Dysphonia with Botox injections. Navigating the insurance approval and appeal process can be daunting, but with the right tools, it is possible to obtain coverage for Spasmodic Dysphonia treatment.
Waiting Room Literature Kits
Price: n/c
This kit is designed for the physician's waiting room and includes a brochure holder along with copies of NSDA brochures. This is a great way for us to increase awareness about SD.
Easier Done than Said... Living with a Broken Voice
Author: Karen Feeley
Price: $15.00
Written by those who suffer from SD, and professionals who work with SD patients, it is a compendium of shared experiences from within the SD community. For those who have been coping with SD for years, this book will provide you with some new ideas to address current issues you might be facing. For those who are recently diagnosed or who are still seeking answers to this strange ailment, this book will serve as a useful reference guide as you begin your journey through life with SD. For friends, family members, or co-workers of those with SD, this book will help you to better understand the plight of people dealing with SD.
Speechless: Living with Spasmodic Dysphonia
Author: Dot Sowerby
Price: $12.00
"Speechless: Living with Spasmodic Dysphonia" is the biography of NSDA Board Member Dot Sowerby's experience with SD as told to Betty Schonauer. Also featured in the publication are “I Climb Over My Voice” by Jean Newcomer, and “An SD's Experience with Depression” by French O'Shields, as well as articles by Michael Rolnick, Ph.D. of William Beaumont Hospital in Michigan and Michael Rontal, M.D. of Associates in Otolaryngology in Michigan.
Other interesting and informative articles:
Spasmodic Dysphonia is a Neurological Disorder
Current Evidence and References
Author: Christy L. Ludlow, Ph.D.
National Institutes of Health - Neurological Disorders and Stroke
Medical Chairperson, National Spasmodic Dysphonia Association
http://www.dysphonia.org/src/neuro.pdf
Changes in the Brain Identified in SD
Focal White Matter Changes in Spasmodic Dysphonia:
A Combined Diffusion Tensor Imaging and Neuropathological Study
Authors: Kristina Simonyan, Fernanda Tovar-Moll, John Ostuni, Mark Hallett, Victor F. Kalasinsky, Michael R. Lewin-Smith, Elisabeth J. Rushing, Alexander O. Vortmeyer, Christy L. Ludlow, Ph.D.
The full article on this study was published in Brain (2008): 131(2), 447-459
http://www.dysphonia.org/news.asp?id=217
CLOSING:
We hope this information, the support group, and the website have been helpful and we look forward to hearing from you or seeing you in the future. As always, we welcome your input, ideas, and suggestions.
Yours in SD,
Lori DeLuca
817.430.0701
4deluca@airmail.net
Trisha Kraushaar
121withsd@yahoo.com | 
