Web Extras

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Friday, March 2, 2018

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Participants in tomorrow's Oso Fit 5K Fun Run in Mission Viego, CA, are in for a treat. Actor RJ Mitte, who played Walter White's son in the AMC series, Breaking Bad, will be the guest of honor at the run.

Mitte, who appeared on the February/March 2015 cover of Neurology Now, is there to support a special "run within a run," sponsored by Children's Cerebral Palsy Movement, a nonprofit group in Orange County, CA, that promotes exercise for children with cerebral palsy (CP), according to founding director Debbie Fragner whose 11-year-old daughter Maddie has CP.

"RJ and his mother Dyna are absolute fireballs when it comes to CP advocacy," says Fragner. "RJ is so passionate about this whole thing." Mitte was born with CP but has a less severe form than that of his character on Breaking Bad.

In the CP Children's Fun Run, participants can enter either the quarter mile or half mile run/walk. All runners/walkers are eligible for run/walk buddies, able-bodied children from the Capistrano High School track team who will accompany them for the duration of the event.

Post-race, participants are welcome to a reception where Mitte and several other actors, including Aaron Schwartz (Guardians of the Galaxy), Kate Tomlinson (Speechless, Stuck in the Middle), Niko Pepaj (How to Get Away with Murder), and Mitte's sister, Lacianne Carriere (It's Always Sunny in Philadelphia), will greet runners and their families, sign autographs, and pose for photos.

The community has really rallied for the event, says Fragner. Food for the reception is provided by two local restaurants and a professional children's photography studio has donated its services to take pictures of participants. In addition, there will be a caregiver support station where caregivers can get free massages.

In what's billed as an Invitation to Freedom exercise, caregivers can release negative emotions and embrace positive ones by interacting with hand-painted blocks labeled with different emotions. "Caregivers carry emotions like disappointment, fear, and anger around with them, which is so tiring," says Fragner. The Invitation to Freedom exercise encourages caregivers to interact with the blocks, 20 of which are painted with words like hopelessness and discouragement and 20 with words like promise, faith, hope, and courage. "The exercise gives caregivers the opportunity to lay down fear and pick up hope or lay down discouragement and pick up promise," says Fragner. "It's a chance to symbolically release certain negative emotions and embrace more positive ones."

As a continuation of that symbolic gesture, the event will end with a release of hundreds of live butterflies.

To learn more about the Fun Run or sign up, visit bit.ly/CP-FunRun. For more information about Children's Cerebral Palsy Movement, visit childrenscerebralpalsymovement.org. To join the organization's Facebook page, visit bit.ly/CPMovement-FB. To read more about Maddie Fragner and her experience with CP, visit bit.ly/NN-FittingIn

Tuesday, February 13, 2018

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With Valentine's Day around the corner, it seems like a good time to think about how and when to let potential suitors know about your progressive neurologic disease. Here's how it went for me.

I was 18 when I decided it was time to find the one. Even though my detailed life plan didn't include marriage until many years later, I figured it could take a while and that I had better get started.

I typed in www.okcupid.com on my dorm room computer. I'd heard it was like eHarmony but more "hip." Also cheaper. Since it was free.

I filled out many boxes of information…

Body type: Average build

Height: 5'3"

Smokes: No

Kids: Might want kids

Diet: Vegetarian

Education: Working on University degree

But there was no box for "Diseases." I happen to have Charcot-Marie-Tooth disease, a neurologic disorder that affects the nerves outside the brain and spinal cord and causes muscles to atrophy.

When, I wondered, is the best time to tell a potential mate that you have a condition like that? Directly in your dating profile? In your intro message? On the first date? Wedding night?

Some of these options are clearly better than others. I knew I wanted to filter out anyone for whom my wheelchair would be an immediate deal breaker. If I were going to be rejected for my muscle weakness, I would rather it be before I was invested and not in person. I also didn't want to waste anyone's time (especially my own).

This meant putting the disclaimer up front on my profile—two carefully crafted sentences that indicated I had a neurologic disease and used a motorized wheelchair to get around my college campus. I included a trite comment about "loving life!!" and a smiley face at the end to show that I'm still, like, super fun.

I started messaging potential suitors.

Many of them didn't message back. Maybe it was the wheelchair, but—I told myself—it could also be that they didn't like brunettes or biology majors. I learned that any energy spent wondering "Why?" was wasted. They weren't interested, and that's okay. Someone will be, and maybe I'll be interested in him, too, and that is the only kind of person I need to worry about attracting.

It helped that online dating is anonymous. It felt safer, less personal. Online I wasn't Bethany Meloche; I was PansyLife, 18, Huntingdon, Pennsylvania.

Besides, I was only looking for one totally amazing person. Is that so much to ask for? I didn't think so.

Enter sinclair44, 20, Pittsburgh, Pennsylvania.

He'd appeared on my homepage, one of three suggested matches, but the only one I clicked on. He was wearing a top hat made out of foam and cardboard stapled together.

I messaged him right away.

The disclosure on my profile didn't stop sinclair44 (whose real name was Josh) from messaging me back. It also didn't stop him from taking the four-hour train ride out to meet me for our first date two months later, or from proposing to me with a diamond ring four years after that.

When it came to telling potential dates about my disease, I chose the method that was most comfortable for me—and that was to state it up front. It served as an early filter for the kind of person that I needed and wanted. In the end I found someone who is my true teammate—someone who makes me laugh, challenges me to be my best self, and who will push me up steep hills in a wheelchair.

For more about navigating dating waters when you have a neurologic condition, read Dating Game, our feature story on the subject.

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Bethany Meloche is the author of How Should a Body Be?, a coming-of-age story about growing up in Michigan, falling in love, and learning to live with Charcot-Marie-Tooth disease. Her story has been featured in the Daily Cal, The Mercury News, Mountain View Voice, and Lower Extremity Review.

Friday, February 9, 2018

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"No." This simple, one-syllable word is a crucial component of managing a chronic neurologic condition, but many of us don't know how or when to say it.

When I was diagnosed with Charcot-Marie-Tooth disease, the neurologist told me it causes peripheral neuropathy and would lead to muscle wasting. What we didn't discuss was that I would have limited reserves of energy, not sleep well, and expend far more effort to do the same tasks as someone without a neurologic condition.

Being able to say "no" helps me conserve energy, set priorities, and take better care of myself. I know how important it is so why is it so hard to say sometimes?

I recently had someone ask me to spend what would easily have been 100 hours of my time to support his business. For free. This was an acquaintance, someone I'd spoken to briefly on two occasions. It was a ridiculous, presumptuous request that I knew I would not and could not accept. But when it came down to responding to his email, I couldn't figure out what to say. I called my father for advice.

"How do I turn him down?" I asked.

"You say, 'No, I'm not going to do that.'"

"That's too rude. I don't want to be rude."

I could hear my dad exhale. "It's not rude."

"What about, 'Sorry, but I don't have the bandwidth to do that'?"

"You're not sorry. And don't make a fake excuse. You are just opening yourself up to getting a counter-proposal that solves your fake problem. Just. Say. NO."

In the end I probably wasted half an hour belaboring how to turn that guy down. And that was one of the easy situations! If you are like me and struggle with saying no—even though you recognize that it's one of the best ways to take care of yourself—here are three things to remember:

1. Set the Rules

You are responsible for your health and well-being. The people around you will take your time, your energy, and your resources if you put them up for grabs. It's not malicious; they don't know your other commitments and limitations, and that isn't their job.

Set your own rules and priorities. Don't let every random person who walks into your life and asks for something set them for you.

2. Consider All Priorities

When you say "yes" to one thing, you have just implicitly said no to 10 other things. Ten other things that may be higher priority and make your life better—like going to the gym, spending time with your kids, or just watching Netflix to recharge. If you hesitate to say "no," remind yourself of all the things that you can now say "yes" to once you turn down this request.

3. Don't Be Afraid to Disappoint Someone

Your time is valuable and your time is yours. Your time is also finite. It's okay to disappoint someone by not taking on additional commitments. Plus, it's much better to say "no" right away than to have to bail later because you overcommitted yourself.

You also may be pleasantly surprised with how easily most people understand this and move on. The guy from my story? The one with the crazy request of my time? His response: "Totally get it, no problem! :)"​

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Bethany Meloche is the author of How Should a Body Be?, a coming-of-age story about growing up in Michigan, falling in love, and learning to live with Charcot-Marie-Tooth disease. Her story has been featured in the Daily Cal, The Mercury News, Mountain View Voice, and Lower Extremity Review.

Friday, January 19, 2018


In our Living Well department in the February/March 2018 issue, we describe how the concept of self-efficacy helps people with neurologic diseases manage their condition (bit.ly/NN-TakeControl). In this online exclusive, we talked to Lisa M. Shulman, MD, FAAN, professor of neurology at the University of Maryland, editor-in-chief of the American Academy of Neurology's Neurology Now Books™ series, and a member of the Neurology Now editorial board, about why self-efficacy is so important for people with chronic progressive disorders.

What is self-efficacy?

It's a personal belief that you can accomplish the tasks necessary to manage your health. It implies a sense of confidence and a sense of control.

Why is self-efficacy so important?

Research shows that it's the single most important component of managing a chronic disease, even more important than education and self-management skills such as knowing how and when to take your medication.

That sounds counterintuitive. How does it work?

Let's envision some scenarios. You have one person who has a terrific sense of knowledge and understands everything about his disease, but feels completely overwhelmed and out of control. He feels like his diagnosis is something he cannot manage. And it ends up limiting his life. On the other end, you have someone who feels totally confident but doesn't actually know anything about his disease or how to manage it and gets himself into all sorts of trouble. He may not take his medication at the right time or on the right schedule, or he may ignore symptoms. Then you have a third person who has a good measure of knowledge, skills, and self-efficacy. She has a realistic perspective on what she can and cannot manage.

In what other ways does self-efficacy help?

A person who believes in her ability to manage her disease can make good judgments about symptoms, such as when they require a trip to the emergency department, a call to the doctor, holding off on another dose, or no special action. She also understands the kinds of situations that make her vulnerable. Not only can she control her disease, she wants to control it.

You've been the editor the AAN's Neurology Now Books series for more than a decade. Has self-efficacy always been a part of the series?

Yes. Self-efficacy has always been an important part of my own clinical practice, so it was something I brought to the table from the start. Each book presents material and patient anecdotes that reinforce the concept of self-efficacy.

What are some examples of self-efficacy in the series?

Every chapter of each book addresses some aspect of managing a chronic disease and provides the tools to do so. This allows readers to practice self-efficacy on different levels and in different ways. So, for example, we explain how to communicate better with your health team, how to disclose your diagnosis to others, how to negotiate social situations, how to travel more easily, how to incorporate exercise into your routine, and how to manage your symptoms and medications. We provide many different opportunities to improve your self-efficacy skills.

The books also include patient anecdotes. How do these help reinforce self-efficacy?

A story is always a more effective way to make a point than a list or a table. So, for example, instead of creating a table of symptoms for a particular disease, we tell a story of one patient's experience with a specific symptom. That immediately personalizes it and makes it relatable. Readers who are experiencing similar symptoms feel validated and are more likely to discuss the symptom with their doctor, knowing that they aren't the only ones to experience it.

How else do the patient anecdotes help?

Often, they help readers identify symptoms they didn't know were part of the disorder or a legitimate thing to report. They may also give readers the courage to discuss an embarrassing problem with their doctor. The ability to relate to the patient's story in the book gives readers the confidence to address their own symptoms.

Confidence is a big part of self-efficacy. How does that help in managing a chronic disease?

Confidence and self-acceptance are two of the most important components of managing a chronic condition, and they are often connected. The more accepting we are of ourselves with all of our imperfections, the more confidence we'll have in managing those imperfections. And we can do amazing things. For instance, when symptoms flare up in public, confident people don't get embarrassed or apologetic. They may say to others, "Don't get flustered. This is just my Parkinson's or my multiple sclerosis (MS), or whatever the disease is."

A great example of this was the late U.S. Attorney General Janet Reno, who had Parkinson's disease. She developed a really big tremor, and when she would testify in Congress it often exacerbated her tremor. Invariably, some member of Congress would ask if she needed to take a break. She would explain that the tremor was bothering them more than it was bothering her. The ability to say that with such ease put everyone else at ease.

Self-efficacy also confers a sense of control. How does that help in managing chronic conditions?

If you don't feel like you have a sufficient sense of control, you're far less likely to try anything. Everything feels like a crap shoot, which can be paralyzing. If you feel in control and believe in yourself, you understand more clearly what you're capable of and can make decisions accordingly, and the likelihood of a successful outcome is that much greater.

It sounds as though self-efficacy builds on itself. Is that true?

Absolutely. Each time you succeed, you have a stronger sense of yourself and your abilities. Every time you try something new, you are reinventing yourself. You may initially think an activity is too strenuous, or you may worry that it's not safe or that people with your disease don't do those things. After determining that it's safe, you try it and you're able to do it. And that redefines what a person who has had a stroke or MS or epilepsy can do.

To check out the titles available in the AAN's Neurology Now Books™ series or order a book, visit aan.com/view/NeurologyNowBooks.

Friday, January 12, 2018

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In the February/March 2018 issue of Neurology Now, we explain why prescription drugs are so staggeringly expensive and what patients and doctors can do about it. In this online extra, we offer three ways to get help paying for high-priced prescription drugs.

If your insurance company denies coverage for a high-cost specialty medication, reach out to one or all of these groups.

  1. Contact your disease advocacy group—such as parentprojectmd.org, curesma.org, or nationalmssociety.org—for information on the most effective way to appeal denials.
  1. Ask the specialty pharmacy that dispenses your medication for help. They often have financial counselors who are familiar with the many forms of patient assistance available from drug manufacturers, foundations like The Assistance Fund, and other programs.
  1. Contact groups like the Partnership for Prescription Assistance (pparx.org) or NeedyMeds (needymeds.org), which should be able to provide you with information on a variety of financial assistance programs.