Talking About Tourette's

Thank you for your article about Tourette syndrome ("Actor Dash Mihok on How Tourette Syndrome Shaped His Career," October/November 2019). I started having tics when I was about 6 but was not diagnosed until I was about 21. Unlike some people, my tics have worsened with age. I try to mask my tics in public, but at home they tire me out quite a bit. - Randy Mccrea, Bradenton, FL

Depression is a Reality

Thank you for your article about depression as it relates to epilepsy, stroke, and Parkinson's disease ("Neurologic Conditions Can Lead to Depression—Here’s How to Manage It," October/November 2019). I had my first seizure three years ago in my mid-forties. After the second one a month later, I was diagnosed with an arteriovenous malformation (AVM) in my left temporal lobe. After a craniotomy to remove the AVM, my seizures continued, and I have since been diagnosed with epilepsy. Depression and anxiety are things I now live with every day. Over the last three years, I've been plagued with thoughts that I'm useless. Your article helped me understand that I'm not alone and that strategies exist for dealing with depression. I've found over the last several months that exercise helps me. Your article would have been very helpful after my diagnosis. This sort of article should be sent home with patients from the hospital or doctors' offices. - Stephenie Black, Gowrie, IA

Ataxia Awareness

I was thrilled to see your article about ataxia ("New Research Gives Hope to Patients with Inherited Ataxias," October/November 2019). I have an acquired ataxia, but my doctors don't know yet what caused it. Genetic testing is an important issue for many of us, but not everyone wants to get tested for fear of losing life insurance, long-term care insurance, or private disability insurance. It's a good idea to talk with an attorney beforehand. - Mary B. Mattison, Laurel, MD

I was happy to see the article on ataxia, especially with "hope" in the title. I was diagnosed just recently with late-onset sporadic cerebellar ataxia. I would like to see a future story for those of us who have no idea what caused our ataxia. It could be a brain injury, tumor, stroke, or infection. I recently awoke feeling more clearheaded than in the previous months. I look forward to more information and interesting reading in your magazine. - Judy Stabler, Citrus Heights, CA

Our third annual fundraising event—Walk n' Roll—in Fort Wayne, IN, raised more than $10,000 for the National Ataxia Foundation to further research efforts for a cure. Another member of the Indiana ataxia support group and I organized and coordinated the event. - Cheri Bearman, Hoagland, IN

I was thrilled to finally see an article on ataxia—until I read it. I am intimately familiar with ataxia, and it is not as portrayed in this article. It is not rare. Tens of thousands of people have some form of ataxia, which gets little exposure in the media. The subheadline of the story suggests that ataxia is simply a walking and balance problem. It is much more than that, and in the end it kills you. It takes your life away little by little. Many of the symptoms—degenerating motor skills, coordination, balance, eyesight, speech, and swallowing; extreme fatigue; heart disease; muscle wasting; neuropathy; and emotional distress—mimic those of multiple sclerosis. - David Koester, Alameda, CA

THE EDITOR RESPONDS: We're sorry to hear you were dissatisfied with our article on ataxia. In all our stories, we aim to strike a balance between describing the challenges of day-to-day living and offering readers hope. Our experts explained in the article that inherited ataxias are progressive and incurable and affect not just the patient but family members who might inherit the gene. We also described other more serious symptoms, such as difficulty walking, slurred speech, and vision problems. And we noted that life expectancy is shorter than for people without the disease. Since ataxia affects fewer than 200,000 Americans, the National Ataxia Foundation and the National Organization of Rare Disorders consider it a rare disease.

A Rare Mention

Thank you for the Speak Up essay about acute disseminated encephalomyelitis (ADEM) ("A Mother Recounts Her Son’s Sudden Medical Crisis," October/November 2019). In 2008, our previously healthy 12-year-old son had a grand mal seizure that resulted in partial paralysis, more seizures, and multiple tests and procedures before a final diagnosis of ADEM. We are so thankful that he recovered fully. It was good to see ADEM addressed in your publication, which I first saw when I was in a pediatric neurologist's waiting room during my son's health crisis. - Julia Mitchell, Boone, NC

Seizure Shift

I was diagnosed with epilepsy in 2008. After trying countless medications that left me so dizzy and uncoordinated I could hardly walk, I was referred to an epileptologist, who prescribed other medications that lessened my seizures slightly but had similar side effects. I was lost and depressed. In 2017, I had a responsive neurostimulator implanted, and my seizures went from hundreds a month to none in a year. It is possible to function with epilepsy and have a happy life. It might take seeing several different doctors, but one is out there for you. Based on my experience, I recommend finding a level 4 treatment center for epilepsy. - Katherine Jacques, Atlanta

EDITOR'S NOTE: A level 4 epilepsy center is defined by the National Association of Epilepsy Centers as a place where patients get specialized epilepsy care. Level 1 epilepsy care is typically at an emergency department or a primary care physician's office, and level 2 care involves meeting with a general neurologist. Levels 3 and 4 take place at specialized epilepsy centers.

I'm not sure if you've ever done an article on psychic focal aware seizures. I was diagnosed several years ago, and after being free of seizures since then, I recently began experiencing them again. I have an amazing neurologist at Mayo Clinic in Phoenix, but find most people, including medical professionals, stare at me like I'm crazy when I describe my seizures. I would appreciate an article about these types of seizures. - Greta Mang, Phoenix

EDITOR'S NOTE: Psychic focal seizures originate in parts of the brain that trigger emotions or memories of previous experiences, causing feelings of fear, anxiety, or deja vu.

Timing is Everything

Ann Curry and her new show Chasing the Cure ("Journalist Ann Curry Hopes Crowdsourcing Can Solve Medical Mysteries," August/September 2019) is an extraordinary match for my story. After five years and 14 doctors, I was finally diagnosed with inclusion body myositis (IBM) in 2017. This rare autoimmune disease causes weakness in the limbs and difficulty swallowing. If researchers can find a breakthrough with this disease, it may be relevant to other autoimmune diseases such as lupus and multiple sclerosis. - Moonyean Smarzinski, Hot Springs Village, AR

Horrible Headaches

Thank you for bringing the topic of cluster headaches to the forefront (“Finding Relief for Cluster Headaches,” June/July 2019). My son has had cluster headaches since he was a young child. During the 1970s, we saw neurologists and allergists from Boston to New York, but it wasn’t diagnosed until he was an adult. He lost enormous amounts of time in the classroom. One of his teachers sarcastically asked him if he was allergic to school. His problem was particularly noticeable during the change of seasons. He currently takes lithium but is still plagued by occasional episodes that keep him from work several days at a time. My hope is that further research will develop new and better ways to help those with this condition. - Helen L. Smith, Kingston, MA

Proactive About Parkinson’s

Since my diagnosis of Parkinson’s disease, I have been very serious about managing symptoms. I signed up for a boxing class twice a week for an hour and 15 minutes, which helps with the dystonia in my left foot. I also participate in an art program designed specifically for people with Parkinson’s. I attend every month and have seen improvements in my fine motor skills. - Tim P. MacMillan, North Oxford, MA

CORRECTIONS: The hospital in the Nutrition item in Healthy Living ("Why Doctors Recommend Fruits and Veggies to Prevent Chronic Disease," October/November 2019) was misidentified. It is Wilmington Hospital, not Christiana Hospital. After the article went to press, Christiana Care Health System changed its name to ChristianaCare. In our Disorders story ("New Research Gives Hope to Patients with Inherited Ataxias," October/November 2019), Friedreich's Ataxia Research Alliance was listed as a resource. It is a research-granting organization for Friedreich's ataxia and does not provide other information. Both have been corrected online.