Seizure Response

I would like to commend Neurology Now for publishing Stacey Chillemi's article on what to do if someone near you is having a seizure (April/May 2011). It was informative and precise. I am a clinical social worker at an adult day health care center. Some of our clients have been diagnosed with seizure disorders, and Chillemi's piece has been invaluable in teaching both our clients and staff about how to help them. - Ifeanyi C. Alozie, M.S.W., San Bernardino, CA

Dreaming With Multiple Sclerosis

Oh, Patti!! When I read your essay, "Give and Take," in the February/March 2011 issue, I thought I was reading about myself. I have an 11-year head start on you with my multiple sclerosis (MS), so these days I don't run in high heels—even in my dreams. I do, however, dream I'm walking unaided, which I can't do in real life anymore. Like you, I'm still driving: I just passed a road test with flying colors this past summer. And like you, I have a wonderful husband who, in addition to doing the laundry and the groceries and the errands and countless other things, has made it possible for me to be only semi-retired from my profession.

Except for a gradual worsening of the problem with my left leg, there's been no progression of my MS beyond what I had at diagnosis. Hope you have similar good fortune. - Marilyn Rench, Racine, WI

Concussion

On February 14, 2011, my husband fell on his head while coaching his varsity girls' hockey team in Lakeville, MN. He was not wearing a helmet and sustained a subdural hematoma, four fractures to his skull, and a concussion. He underwent immediate brain surgery to stop the bleeding at the University of Minnesota Medical Center. On February 28, 2011, he walked out of Methodist Hospital and returned home. It was an absolute miracle. He suffered mild memory problems from the concussion.

Our two boys play hockey, lacrosse, football, and baseball—so head injuries are always a concern. After reading "A New Game Plan for Concussion" (February/March 2011), I was speechless. Head trauma virtually turned my life upside down. I thought this article was filled with great information for parents and players. In Minnesota, it is a rule that all coaches wear helmets if they coach in the youth association, but not at the varsity or high school level.

Although my husband will return to coaching this winter, he will not skate for a year to allow his brain to completely heal. When he does return to the ice, he will never skate without a helmet. He is currently working with Mayo Clinic on a study of concussion. He has been given another chance at life, and hopefully a chance to save another life.  - Lynn Buck Kochevar,  Lakeville, MN

THE EDITOR RESPONDS: Thank you, Lynn, for reminding everyone about of the importance of wearing helmets. The American Academy of Neurology is donating 1,000 children's bike helmets to the North Minneapolis Bike Fest, which runs through June.

Can Antibiotics Cause Neuropathy?

I would like to thank you for using my question regarding fluoroquinolone antibiotics and neuropathy, which I posted on the Neurology Now Facebook page, in "Ask the Experts" (April/May 2011). I wholeheartedly agree with your experts that these issues are underreported and under-acknowledged by the medical community.

However, their suggestion that the symptoms generally resolve in a couple of weeks, once the antibiotic is discontinued, may be misleading. I was a perfectly healthy wife and mother of two until I received one intravenous dose of levofloxacin (Levaquin) in an emergency clinic. I felt like my body was being burned by acid for eight days straight. It was the most excruciating pain I have ever experienced. Two weeks later, a nerve conduction test showed complete conduction block of my right peroneal nerve, which is a branch of the sciatic nerve. I have been diagnosed with peripheral neuropathy. I just had another nerve conduction test, now 9 months later, and I am showing no improvement.

Please visit our group to see more stories like mine. - Lori McCandlish

Early Diagnosis

I just finished reading "An Ounce of Early Intervention," by Debra Gordon, in the April/May 2011 issue, and I couldn't agree more with her. As a matter of fact, I am walking proof that early intervention is important.

At 37 years old, I was diagnosed with multiple sclerosis (MS). My doctor immediately said, "I want you to start on a therapy." I was to deploy on a U.S. Navy ship five days later and felt I had to take action. My doctor explained the positives and negatives of the three approved therapies at the time. I made my choice and started therapy that day. I remember asking him, "How long am I going to have to be on this therapy?" He responded, "The rest of your life." I said, "That's a long time." He answered, "Let's hope so."

I took seven months' worth of medication with me on my ship and maintained my therapy as best as I could while deployed. I continued therapy, and in 2007 I finished a 21-year naval career—the last six with MS. In November I will have been living with MS for 10 years. Debra Gordon is right: Take control of MS before it takes control of you. - David L. Hostetler, El Cajon, CA

First, I want to thank Neurology Now for keeping me up to date with the informative articles you publish. I am a caregiver and partner of a wonderful man who has Lewy body disease (LBD).

Your article "An Ounce of Early Intervention" discusses the importance of early diagnosis and treatment. Well, I am here to tell you that in many cases the early symptoms of neurologic disease are put off as the symptoms of normal aging. Now that we know what the symptoms of LBD are, we can go back about four more years and find them. But there were no tremors initially, and we never thought the symptoms that did show up could be associated with an incurable disease. We never thought that the stiffness was from LBD—we assumed it was arthritis creeping in. And we figured the cognitive problems were due to a traumatic brain injury some 10 years before.  - Penny Adams

Going Mobile

I found your article "Going Mobile" (April/May 2011) very interesting. I have multiple sclerosis (MS) and am on dalfampridine (Ampyra), which must be taken on a strict 12-hour schedule. I use my mobile phone alarm to remind me. As soon as it goes off, I reset it for the next time. I also use the mobile application called Memo Pad to keep a list of all my meds, dosages, and frequency, as well as questions for my neurologist. The nursing staff love the fact that I am so prepared for my visits, but without the help of my phone, there would be no way I could remember it all. - Elsie Keaton

You, Me, and ADHD

I wish to comment on the article from your February/March 2011 issue, "You, Me, and ADHD." I cannot possibly put into words the tremendous respect and admiration I have for Curt and Shonda Schilling. Four of their children have ADHD, one also has Asperger's syndrome, and Curt has ADHD as well. They show how seeking treatment with love and patience made their family as strong as it is today. It is truly inspirational!!

My husband and I have two daughters. Our seven-year-old has ADHD, ODD (oppositional defiance disorder), and a form of epilepsy. She is seeing a pediatric neurologist, a psychiatrist, and a therapist for behavior management. My husband and I are attending coaching sessions with a therapist on how to manage our daughter's impulsivity, anger, and mood swings.

At times it's frustrating, but like Shonda Schilling says, "Take a deep breath, it's going to be okay." Hearing her words of wisdom brings us back to the very core of what family is all about: love, patience, and doing whatever is necessary to make sure one's child is not treated as a "condition" but an actual person. All children deserve that. - Barbara Peck, Prospect, CT