Advocacy in Action
I enjoyed your article on advocacy ("Take Action," February/March 2016). As a caregiver for my late wife, I wanted to support the cure for dementia. First, I researched charities focused on a dementia cure through Charity Navigator, which revealed that most had high administrative and marketing costs and relatively little allocated to pure research. Next, I looked into starting my own foundation and discovered that it was too time-consuming and expensive. Then a friend told me about the Philadelphia Foundation, an organization that manages donations, sends out thank you notes, submits tax forms, and processes grants that you direct with minimal administrative cost. From there, I looked for an organization that supported my desire to cure dementia and settled upon the University of Pennsylvania's Center for Neurodegenerative Disease Research, which researches amyotrophic lateral sclerosis, Alzheimer's and Parkinson's diseases, and frontotemporal and vascular dementia. Finally, I needed a website, which I developed using Google's free tools—and voila—curedementia.org. These steps were all part of my healing process. - Dave Hoefner, Philadelphia, PA
It was wonderful to see Joe DeCrescenzo, and his wife, Cathy, mentioned in your advocacy article for their tireless dedication to spreading the word about ataxia! I would like to do my own advocacy by educating readers about ataxia, a term used to describe a group of neurologic disorders that cause problems with balance and coordinated movement due to a loss of function in the cerebellum, the area of the brain that controls movement. Acquired ataxia is due to an event such as head trauma, stroke, brain tumor, exposure to drugs, or severe viral infections. Hereditary ataxia is caused by a gene defect or mutation, and idiopathic ataxia has no known cause. Cathy and Joe's work in Delaware is a perfect example of what can be done with education and proactive thinking. For more information, visit the National Ataxia Foundation. - Christina Rakshys, Allentown, PA
Medical Mystery Solved
It was interesting to read your article about diagnosing rare diseases ("Solving Medical Mysteries," February/March 2016) as I, too, have been blessed with my own "dream team," working to diagnose my array of symptoms. My neuromuscular doctor, Goran Rakocevic, MD, FAAN, spent a portion of his career at the National Institutes of Health in Bethesda, MD. I have now received a diagnosis of primary lateral sclerosis (PLS). Thank you for being a trusted, reliable source of information for all of us with neurologic conditions. - Christine Moretti, Philadelphia, PA
Power Play
I just finished reading the latest issue of Neurology Now, which I look forward to every other month. I especially enjoyed the feature about Brian Grant and his life with Parkinson's disease ("Powering Forward," February/March 2016). Like Grant, I, too, am an athlete with Parkinson's disease. I was the 1975 New York Motocross motorcycle champion and the 1985 National Road Racing motorcycle champion. I was diagnosed with Parkinson's in 2013 at age 57. I still ride my motorcycle every day to maintain my balance. As I've always said to my children, "When life serves you lemons, make lemonade." - Theodore Christopher Horn, Ft. Myers Beach, FL
Is Parkinson's Fatal?
In the Brian Grant article, I was stunned to read these words: "his neurologist told him the disease, although chronic and progressive, was not fatal..." My wife passed away this past summer after a 20-year battle with Parkinson's disease. Her death was from Parkinson's. The quote is absolutely false and should not have escaped the editing process without context. - JW McAllister, Memphis, TN
THE EDITOR RESPONDS: Parkinson's disease is a chronic, progressive condition. People who have the disease may have a shorter life expectancy than people in the general population. Many do die from Parkinson's-related complications. But our experts tell us that, depending on the age and severity of the disease at onset, people may live decades with the disease.
Shelter Service Dogs
It's always uplifting to see service dogs and their providers acknowledged ("Healing Tails," February/March 2016), but I was troubled by the comment from the director of 4 Paws for Ability about not finding enough qualified dogs in shelters or from rescue groups. Many service dog agencies, including Dogs for the Deaf, Shelter to Soldier, and the Search Dog Foundation are committed to getting dogs from shelters and rescues. Dogs for the Deaf, a nonprofit organization in Central Point, OR, has successfully recruited shelter dogs for 40 years. With 2 million dogs languishing in shelters at any given time, they deserve our foremost consideration. Given the opportunity, they can become the most grateful, hard-working, and dedicated service dogs anyone could ask for. I've witnessed it! - Cheryl P. Morris, Eugene, OR
More Coverage of Rare Disorders
My 3-year-old great-granddaughter had just been diagnosed with Chiari malformation, and the first article I saw in last issue's Neurology Now was about a mother and daughter with Chiari malformation ("Conquering Chiari," December 2015/January 2016). My grand-daughter has done a lot research on the condition, but it would be great to see a more detailed story about it in your publication. Several members of my family, including me, have essential tremor disorder. I recently had deep brain stimulation surgery, which was life-changing. - Beth Krause, Fond du Lac, WI
Your magazine is inspiring. It helps me understand how to achieve a better quality of life with a neurologic disorder. I was diagnosed with syringomyelia two years ago. I struggle with back and neck pain that may or may not be related to this condition, as it is rare and treatments vary across medical expertise. I'm terrified of surgery because of the rarity of this disorder and the possible complications. Would Neurology Now consider an article on syringomyelia, explaining treatment and pain relief options? I know others with this condition are out there because I see them reaching out in this magazine and on blogs. - Lydia Cobb, Encinitas, CA
I enjoy reading the articles in Neurology Now, however, I have yet to see any information about transverse myelitis. Such information would be very helpful to me as I deal with its effects daily. - Betty Shaffer, Portland, OR
THE EDITOR RESPONDS: We try to include as many conditions as possible in each issue of Neurology Now and will continue to do so in the future. For more about Chiari 1 malformation and syringomyelia, see our feature about singer-songwriter Roseanne Cash, who has both conditions (June/July 2012). In this issue's Speak Up department, we have an essay by a reader who lives with transverse myelitis. Read our feature on a Hollywood writer who has the condition.
Catching Up
Thank you for your extraordinary magazine and for distributing it so generously. I have lived with epilepsy for 69 years and thankfully look back on a wonderful life. Still, my understanding of epilepsy and its medication was minimal for most of my life, despite being a medical technologist. I realize now how crucial understanding is to helping one cope with a lifelong neurologic disorder; you contribute greatly to the lives of many people. I am 77 and feel my last two decades have been a matter of catching up on important things I never knew about! - Joan McGann, Waltham, MA
Caregiving from A Distance
I read the article on long-distance caregiving ("Road Map," February/March 2016), which reminded me of my living situation. My wife and I live in Milwaukee, WI, in a vertical duplex with my 89-year-old mother. She lives downstairs, we live upstairs. My wife makes my mother's meals and monitors her medication. I take her to doctor's appointments, the pharmacy, and grocery shopping. She is legally blind and hard of hearing and has nerve damage in her hands. She uses a walker or a cane.
My 87-year-old father lives in a trailer park in Yuma, AZ, where he pays for in-home care. Until two years ago, he was bedridden, on oxygen, and in hospice care at home. In August 2014, my wife and I went to Yuma because his caretaker said he was failing fast. He has rebounded since then and is no longer bedridden.
To top it off, I am disabled with cerebellar ataxia, a neurologic disease for which there is no cure. I use a walker or a quad cane. Eventually, I'll be in a wheelchair, but for now I use the lawn mower as a walker in summer and the snow blower in winter. Everything takes considerably longer, especially when I have to shovel or salt with a cane in one hand. - Gregory Forster, Wauwatosa, WI
