In the October/November 2017 issue of Neurology Now, we feature letters in response to Dr. Avitzur's Editor's Letter (bit.ly/NN-SilverLining) in the August/ September 2017 issue in which she invited readers to tell us if their conditions have a silver lining. Here, we include other letters we didn't have room to print. Our story about actor Christopher Jackson and his wife Veronica Vazquez-Jackson and their son, CJ, who is autistic (bit.ly/NN-Jacksons) was particularly resonant.
Your article about the Jackson family ("The Story of CJ," August/September 2017, bit.ly/NN-Jacksons) was very thorough, except for two important points. We cannot forget that adults have autism, too. Autistic children grow up to be autistic adults, yet there is almost no awareness and very few support organizations available to us. Additionally, autistic girls present differently than autistic boys and often go undiagnosed. As a woman diagnosed at age 33, I can attest to the emotional distress of not understanding why I was different and awkward compared to others. My diagnosis has been comforting. Now I know that there is nothing "wrong" with me. Yes, I'm different, but now I know why.
A Lot to Love
I found succor and hope in your August/September 2017 issue. The story about the Joyful Noise choir was relatable ("Noise Makers," August/September 2017, bit.ly/NN-NoiseMakers): I'm no virtuoso, but raising my voice in song has always helped bring me out of depression. And I loved reading about CJ Jackson and his family ("The Story of CJ," August/September 2017, bit.ly/NN-Jacksons). I know how important it is to take a time out, especially when feeling overwhelmed. Finally, the words of Drew Bourrut, who cares for his wife, Nora, show such love and insight ("Keeping His Cool," August/September 2017, bit.ly/NN-DrewBourrut). He says he doesn't judge Nora for having a disease she didn't choose, and I think that understanding is so beautifully wise and helpful and loving.
The August/September issue 2017 is so important to me. I have severe chronic depression and problems with balance so I completely relate to Melissa Robillard's story ("Snowball's Chance," August/September 2017, bit.ly/NN-MelissaRobillard). I have since ordered her book. I also really liked reading about Julia, the Muppet with autism ("The Story of CJ," August/September 2017, bit.ly/NN-Jacksons). I volunteer in schools and am putting together a presentation about disabilities. I have an American Girl doll with no hair, a hearing aid, wheelchair, a guide dog complete with service vest, a diabetes kit, and more. I also have a "getting healthy kit" with crutches and casts. The addition of Snowball's story and Julia will make for more presentations. As a credentialed teacher in Early Childhood Education in our state, and a lover of young children, this is something I can do as a volunteer in the schools even with my own disabilities.
Stats on Myasthenia Gravis
The recently featured article about myasthenia gravis ("Managing Myasthenia Gravis," August/September 2017, bit.ly/NN-ManagingMG) was uplifting, but falls short in properly describing the life of those with this disease. I agree that most patients can see significant improvement with treatment, but the vast majority will never see remission or "normal" again. I do believe that staying positive and as active as possible leads to a better outcome, but I think the remission rate is closer to 30 percent, not the 80 percent cited by Dr. Richman.
—Roger A. Morse
THE EDITOR RESPONDS: Thank you for your letter and for your perspective on myasthenia gravis. The clinical literature cites varying rates of remission, everything from the 30 percent you mention to the 80 percent noted by Dr. Richman. Higher percentages are linked to treatment with corticosteroids. The National Institute of Stroke and Neurological Disorders states that 50 percent of people who undergo thymomectomy achieve remission. Various factors affect remission, and as Dr. Richman notes, remission is not a cure, so symptoms may come back.
There are some good ideas for managing medical costs in the story on caring for someone with a progressive disease ("Care Costs," August/September 2017, bit.ly/NN-CareCosts). However, I suspect that the average family cannot afford the cost of long-term care insurance. With health insurance premiums rising, along with other cost-of-living expenses, families who live paycheck to paycheck must forgo this important protection.
Mt. Pleasant, SC
THE EDITOR RESPONDS: Thank you for your letter and for your concerns about paying for long-term care insurance. Contact the National Consumer Voice for Quality Long-Term Care at bit.ly/ConsumerVoice-LTC for information about affordable ways to pay for long-term care.
I have found that the best advice for avoiding falls is learning how to fall well ("Stay Steady on Your Feet," August/September 2017, bit.ly/NN-StaySteady). Those of us who practice martial arts are taught to fall safely and in a relaxed way. I began practicing aikido when I was 64. While far from adept, I find that my accidental falls, due in part to childhood brain damage, have gone from many to next to none. The sooner you start the practice, the better. It will help you walk confidently rather than fearfully, holding the wall.
Risks of Riding
I sustained a traumatic brain injury (TBI) after a horrific motorcycle accident in 2000, so I was surprised to read about Ted Chris Horn resuming motorcycle riding after deep brain stimulation ("Racing Against Parkinson's," June/July 2017, bit.ly/NN-RacingAgainstParkinsons). I understand that Neurology Now doesn't recommend motorcycle riding, but I think a note about the hazards associated with biking, including TBI, would have been a welcome addition to the article. I now volunteer for a nonprofit group called the Brain Injury Peer Visitor Association that makes every effort to shine a light on the risks of motorcycle riding.
THE EDITOR RESPONDS: Thank you for your letter and for pointing out the dangers of motorcycle riding. Ted Chris Horn is a lifelong rider and takes every safety precaution, but you raise an important cautionary point. His recreational choice may not be for everyone.