Speaking for Many
I just read the great article about Scott Adams ("Having His Say," August/September 2016). I hope it will get some attention in other publications. I have spasmodic dysphonia and find it disheartening that not many in the medical community recognize it or know how to treat it. Most of us take the same journey that Scott describes, going from doctor to doctor without getting a proper diagnosis. Not even ear, nose, and throat (ENT) doctors seem to be very aware of the disorder. I spoke to doctors at the University of Minnesota who said their speech department spends very little time advising students about the condition. - John Comer, Roseville, MN
Thank you for publishing Scott Adams' account of his experience with spasmodic dysphonia. It's a devastating disorder. The voice is considered a "life function" and is even recognized by the Americans with Disabilities Act. We take our voices for granted until we have difficulty using them. I've had spasmodic dysphonia since high school and didn't get diagnosed for decades. I had Botox shots for seven years and finally had surgery with Dr. Gerald Berke at UCLA, which stopped the spasms. Many thanks to Scott Adams for championing our cause, and thanks to Neurology Now for getting the word out to so many people, including doctors. What a wonderful service you've performed for so many suffering people. - Pat Hill, Glendale, CA
I am grateful for your article on spasmodic dysphonia (SD). I appreciate Scott Adams for serving as an honorary board member of the National Spasmodic Dysphonia Association (NSDA). I heard him deliver the keynote address at the 2015 NSDA Symposium and was inspired. I have been involved in the NSDA cause and community (dysphonia.org ) since my diagnosis in 1989. I have been a volunteer leader of the SD Support Group of Charlotte, NC, and a volunteer NSDA support services director for several years. The NSDA is the only organization worldwide entirely dedicated to this condition. We want people with SD to know they are not alone. If you are not already a member of the NSDA, please join us and let your spasmodic dysphonia voice be heard. - Mary Bifaro, Charlotte, NC
Thank you for publishing "Having His Say" and shining a light on spasmodic dysphonia. The description of the stages Scott Adams went through were right on target. I was diagnosed with abductor spasmodic dysphonia in 2005 and have been a support group leader with the NSDA, so am familiar with all of it. It is good of Scott, who is already known and admired by so many, to share his personal story and be a public face of the condition. You do a huge public service by letting people know about this somewhat mysterious, and initially frustrating and heartbreaking, disorder. The one good thing about spasmodic dysphonia? The community who shares it. - Wendy Garrison, Oxford, MI
Thank you so much for highlighting Scott Adams and his struggle with spasmodic dysphonia. I have this disorder, too, and the impact on my life has been profound. It is isolating to not be able to speak and for people to not be able to hear me. I am so grateful for the NSDA, because it was through their assistance I connected with others and learned more about this rare disorder. The first support group I attended inspired me. Fortunately, I have found a great ENT doctor and neurologist, and my voice is now manageable. I've learned the more people know about this disorder, the easier it will be for all of us. I am starting a local support group in my town to reach out to others, to help them and give them hope. - Lisa Milligan, Jacksonville, FL
I recently finished reading the latest issue of Neurology Now and especially appreciated the article about Scott Adams and his journey with spasmodic dysphonia.
I was diagnosed with adductor spasmodic dysphonia more than 15 years ago, and Scott's description of this neurologic voice disorder is very much what I have experienced. I just saw some data that indicated 14 out of every 100 adults experience some type of dysphonic voice dysfunction. The ability to speak is something we all take for granted until it is severely altered or taken away.
Thank you for highlighting this rare condition. I also send my deep appreciation to Scott Adams for sharing his insights and frustrations, as well as his delightful way of encouraging all of us living with this condition. The NSDA is an invaluable organization and resource for patients and their families struggling to cope with this insidious problem. - Charlie Reavis, Alpharetta, GA
Spouse and Caregiver
The latest issue's caregiver article ("Tough Love," August/September 2016) hit home for me in every way. After nearly five years as a caregiver for my husband, who had a stroke, and briefly for my sister with Alzheimer's disease, I hit a wall physically and emotionally. And then I found Meals on Wheels. Not only do they supply my husband with four meals a week, they send meals for me, too. Here's the best part: Louis can heat them up on his own when he is ready. Even better, he has begun helping me wash and dry the dishes at other times without any prompting. I witness my husband's pleasure in achieving greater independence and his pride in sharing responsibility for a daily function. He is no longer mainly a "post-stroke patient;" he is a co-partner in his care. All this came about because I did as this month's article recommended: I talked to my husband about how burned out I felt. He was so sympathetic and ready for anything. I hope my experience can help many caring partners who might have overlooked this valuable resource. - Joan Beauregard, Richmond, TX
In 2010, my wife of 55 years was diagnosed with Parkinson's disease. I spent five wonderful years caring for her. Your latest article, "Tough Love," covers the many difficult aspects of caregiving. My initial attitude was "I want to do this." That was followed by "I can learn to do this." Finally, after coaching from her doctor, [I arrived at] "I will find ways for us to still have fun together." I even wrote a book about our experience called Pook's Caregiver: Five Years Coping with Parkinson's, Lewy Body, Stroke, and AFib, which includes a list of 15 lessons I learned. - Jim Haugen, Novi, MI
My wife passed away nine months ago from complications of Parkinson's disease and dementia, among other ailments. She was the light of my life for 42 years. She was also an inspiration to our five children and family and friends. I considered myself lucky to contribute to her well-being. I never thought of doing anything other than making each day one in which it was "good to be alive." As your caregiver story advises, I asked for help when it was needed. Still, the experience wore me down, and I felt depressed many times, and would cry a lot in the beginning. But as I came to understand that what happened to her was not her choosing, it became easier to cope. - Randolph M. Bills, Aurora, CO
Essential Support
Reading about Mary Bartron ("Essential Networking," August/September 2016) was like looking in the mirror. I, too, wasn't able to key at the computer or write legibly, and food often flew out of my hand. After I was diagnosed by a neurologist, I was prescribed primidone (Mysoline), which I take to control all symptoms. Like Mary, I am a dog rescuer and notice that my dogs enjoy "tremor" petting and consider it normal affection. I haven't had tremors in three years and agree that a good support group is the answer to keeping the tears at bay. - Roxanne Carter, Manning, SC
Meeting Our Needs
Each issue of Neurology Now stimulates me intellectually and satisfies a need for understanding and feeling part of a community with people who have conditions not exactly like mine (traumatic brain injury) but who cope with very similar emotional challenges. I often don't read the magazine for weeks or even months after I receive it, but such good journalism does not spoil. I have tried to add Neurology Now to my Facebook contacts, but I have not seen any related communication. Foremost, thank you for a magazine that addresses our needs so well. - Johnson Maxey, Alexandria, VA
THE EDITOR RESPONDS: Thank you for your kind words. Please visit our Facebook page for more news, stories, and feedback from other readers.
