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Thursday, October 5, 2017

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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.

Autistic Adults

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.

—Terah Kuykendall

Converse, TX

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.

—Leslie Kassal

Baltimore, MD

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.

—Alicia Abell

Arcata, CA

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

Westbrook, ME

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.

Affordable Care

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.

—Susan McSwain

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.

Fall-Proof

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. 

—Gretchen Herbkersman

Oakland, CA

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.

—Richard Garneau

Roswell, GA

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.


Thursday, October 5, 2017

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In the October/November 2017 issue of Neurology Now, we profile Scott Badzik, who was diagnosed with epilepsy in 2005, and explore the latest information about epilepsy (bit.ly/NN-EpilepsyEvolution). In this online exclusive, we talk to Badzik about how he exercises safely. 

BY BARBARA BRONSON GRAY AND MARY BOLSTER

Twelve years ago, at age 33, Scott Badzik, a former airline pilot with Delta Airlines, was diagnosed with epilepsy. Forced to resign from his job and give up driving, he initially struggled to adjust to life with epilepsy. "I went from being completely independent and the head of the household to being at home [all the time]," says Badzik, who is also a father of two. "I went from flying a $60 million aircraft to having my son drive me to the grocery store."

Prior to his diagnosis, Badzik had been a devoted long-distance runner, an avid cyclist, and a regular gym-goer. In the months after his diagnosis, he felt stir-crazy sitting around all day. With permission from his neurologist and his wife, he resumed exercising—with the help of smartphone technology. Now, whenever he goes for a run, he wears a GPS watch and uses a combination of tracking apps (such as Garmin's LiveTrack) that allow his family to monitor his progress and receive notifications if he has a seizure or experiences a problem during his run.

"I map out my run, turn on the GPS, and my wife gets an email and can see where I am," explains Badzik. "If she sees a zigzag in the line, she knows I've had a seizure. If I stop moving for a certain amount of time, an alarm sounds and a text message is sent. Without all that, my wife wouldn't feel comfortable with me being out of the house." So far, she hasn't had to take action, he says. (For a more low-tech approach, some people use the buddy system and run with a friend.) 

When his wife sees that he's back on the route and picking up the pace, she knows the seizure is over. "I've never had a seizure longer than five minutes while running. I usually can feel one coming on, so I stop and wait until it's over," Badzik says.

At first, Badzik's neurologist was wary of his desire to resume exercising. "Once he started to see that the exercise was reducing the number of seizures I experienced, he wanted to work with me," says Badzik.

That work has paid off. Last spring, Badzik ran the Boston Marathon, while his wife cheered him on at every five-mile mark. "Boston was the first marathon since my diagnosis where I didn't have a seizure," he says.

For more about about epilepsy and Badzik's story, go to bit.ly/NN-EpilepsyEvolution.


Thursday, October 5, 2017

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BY BARBARA BRONSON GRAY

Epilepsy experts say that neurologists and primary care physicians should refer their patients to specialized epilepsy centers—especially those whose seizures are poorly controlled or for whom two different drugs have failed to prevent seizures. These centers are staffed by specialists with advanced expertise in the disease, says Michael D. Privitera, MD, professor of neurology and director of the Epilepsy Center at the University of Cincinnati. "Epilepsy centers understand the new medications and how to match people and their form of epilepsy to the right medication," he says. "And they're familiar with the latest imaging techniques and whether someone might be a candidate [for a new treatment or procedure]."

Specialists at epilepsy centers work with patients' neurologists to obtain the appropriate medical records and manage medications and other treatments, says Dr. Privitera. To find an Epilepsy Center of Excellence, which provides a comprehensive team approach to diagnosing and treating epilepsy, visit the National Association of Epilepsy Centers at naec-epilepsy.org..


Thursday, October 5, 2017

 

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BY BARBARA BRONSON GRAY AND MARY BOLSTER

In the October/November 2017 issue, we review the latest research on epilepsy. In this online exclusive, we look at how surgical techniques for epilepsy and seizure tracking devices have evolved. At this point, none of the tracking devices have been approved by the US Food and Drug Administration, according to the Epilepsy Foundation.

  1. Neuromodulation: This surgical procedure involves implanting a device in the brain to adjust the electrical activity in the nerve cells, says Joe Sirven, MD, FAAN, professor of neurology at the Mayo Clinic in Phoenix, and editor-in-chief of epilepsy.com. It is often called a pacemaker for the brain. The best known of these devices is the vagus nerve stimulator, which stimulates the brain every one to three minutes to keep it functioning normally. The new generation devices employ responsive neurostimulation, says Dr. Sirven. "With responsive neurostimulation, the device responds only when it detects an abnormal brain rhythm."
  1. Thermal ablation: This surgical procedure uses an MRI-directed probe and heat to remove tissue specifically identified by the neurosurgeon, explains Dr. Sirven. "This allows for very targeted surgery," he says. It's also less invasive than the traditional craniotomy; surgeons drill just one small hole in the skull. As a result, recovery is faster and patients need less anesthesia, says Dr. Sirven, who adds that the procedure is best for patients with drug-resistant focal-onset epilepsy with a small lesion that doctors have identified as causing the seizures.
  1. Seizure Trackers: In order to know if their medication is working, patients need to know how often they are having seizures. But some seizures are so subtle that patients may not realize they're having one, says Jacqueline French, MD, FAAN, professor of neurology at the New York University Comprehensive Epilepsy Center and chief scientific officer for the Epilepsy Foundation. Those patients may benefit from devices that detect small seizures by recording changes in electrical currents in the skin or in heart rate. Based on the data, a patient's diagnosis or treatment could be modified, Dr. French says.
  1. Seizure Alerts: These devices can notify patients and family members of a seizure through text alerts, alarms, or phone calls. Mattress and watch devices can also detect vibrations and seizure-like movements, and remote infrared cameras can record and disseminate video and audio information. Such technology can be installed in a child's bedroom to alert parents of a nighttime seizure.

Thursday, October 5, 2017

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By Richard Laliberte

In ​the October/November 2017 issue of Neurology Now, we write about boxing programs that can help manage symptoms of Parkinson's disease. In this web-only exclusive, we help you find a local program or start one of your own.

Classes at Rock Steady, PD Gladiators, Knock Out Parkinson's, and Punching Out Parkinson's may vary, but they typically combine boxing with activities such as stretching, calisthenics, and core strengthening to address difficulties with posture, balance, stiffness, and cognition. Here's how to get started with a boxing program.

Talk to your doctor. Neurologists increasingly recommend exercise for people with Parkinson's disease, barring conditions or symptoms that would make activity unfeasible or unsafe such as severe dementia, heart problems, musculoskeletal limitations, debilitating pain, or advanced disease. Check with your neurologist and primary care physician before beginning an exercise regimen.

Search online. To find Rock Steady affiliates, click "Find a Class" on the Rock Steady website at rocksteadyboxing.org. Affiliates are independently owned and set their own prices; contact locations for details. For information about Knock Out Parkinson's, PD Gladiators, and Punching Out Parkinson's, go to knockoutparkinsons.com ($70 a month; the first class is a free assessment), pdgladiators.org ($70 to $80 a month), and punchingoutparkinsons.org (classes are subsidized by fundraisers, so they are free or very low-cost), respectively. You'll also likely find local options by typing "Parkinson's boxing program" into a web browser. "If the exact club doesn't come up, local news outlets often have done stories and may have links," says Mark Royce, founder of Knock Out Parkinson's.

Check certification. Make sure the people running the program understand Parkinson's disease. If they haven't been certified by an organization like Rock Steady—certification indicates that they've been informed about aspects of working with people with Parkinson's disease, such as how symptoms can change abruptly and how to adapt exercises to level-based class formats—check the program's website for program directors, coaches, managers, advisors, board members, or supporting organizations with a background in neurology.

Observe before starting. Ask to watch a class before making any decisions. "I've seen two or three people decide it's not their cup of tea," says Lee Goderstad of Minneapolis, who joined Knock Out Parkinson's in March 2016.

Consider a commitment. Participants often say that the benefits become noticeable after about three months. "A year ago, I needed to grab a handle to propel myself out of a car," says Goderstad. "Now I just swing my legs out and start walking like anybody else, except a little slower."

The urge to return to the gym may be one of the most important benefits. "I hear good reports about boxing, even from patients who use assistive devices for gait and balance," says Lisa M. Shulman, MD, FAAN, professor of neurology and director of the University of Maryland Parkinson's Disease and Movement Disorders Center in Baltimore. "People are so enthusiastic that they stay motivated to show up at the gym. And showing up is more than half the battle."

Assess your medication. Work with your neurologist to optimize your medication regimen so that your function is highest while exercising, advises Adolfo Ramirez-Zamora, MD, associate professor of neurology at the University of Florida Center for Movement Disorders and Neurorestoration in Gainesville. Exercise may even help minimize side effects such as sleepiness, lack of motivation, and fatigue. "We need better research in this area," he says, "but many people report a beneficial effect on alertness and energy."

Stay safe. Work with a coach or fitness trainer on a plan that takes into account your individual symptoms and patterns. If you have trouble with balance or are otherwise at risk of falling, consider having a care partner accompany you to the gym.

Lobby for a program. If no program exists in your area, find a local health care or fitness organization that might be willing to send someone for training. "It's a great add-on program for boxing clubs that already have equipment and often sit empty at certain times of day," says Rock Steady executive director Joyce Johnson.