Web Extras

Read web-exclusive content related to articles published in print.

Thursday, December 7, 2017

​In the December 2017/January 2018 issue of Neurology Now, we write about a nonprofit organization called Helping Hands that trains capuchin monkeys to help people with disabilities, including people like Connie Peters who has multiple sclerosis. In this online exclusive, we offer more information about how the monkeys are trained and what's involved in having one in your home.

BY SARAH WATTS

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Helping Hands, a nonprofit organization in Boston, trains capuchin monkeys as service animals to live with and help manage tasks for people with disabilities.

The monkeys spend up to five years in training before being placed with a new owner, a process that can take several months or even a year. "We refer to it euphemistically as dating," says Angela Lett, interim executive director of the organization. "Choosing a service monkey is very different from adopting a cat or dog, and we have a very comprehensive application process because we want our placements to be successful."

Part of the process involves setting the expectations of recipients to understand that the monkey isn't going to come in on day one and retrieve things for them the next, says Lett. "It's a process of learning to trust and be comfortable. But once they are and that relationship is established, the monkeys really anticipate their needs."

Placement Qualifiers

Monkeys can help people with a wide range of disabilities, says Erica Noyes, development and communication associate for Helping Hands. But someone needs to care for the monkey so if the recipient is unable to, he or she must have someone in the home who can, says Noyes.

Care involves child-proofing the home (to prevent the monkey from getting into medicine, for example), providing meals and snacks six times a day, and frequently cleaning the cage. The cage, about the size of a refrigerator box, is where the monkey eats, sleeps, and is toilet-trained.

Like many domesticated animals, capuchins thrive on routine—seeing the same people every day and having meals at the same time during the day, says Noyes. Anyone who can provide stability, routine, and a quiet space for the cage—and loves animals—is a good candidate for a capuchin.

Return Policy

The organization prides itself on its successful placements, but it doesn't always work out. "Sometimes people can't take on all the responsibility, and that's fine," says Lett. "In general, though, most monkeys are returned to us because the recipient goes to an assisted living facility or passes away." ​

Expanding Possibilities

Sometimes a placement ends early for a good reason, says Lett. "One paralyzed recipient got a capuchin and it expanded his world. He was more social, went out more, and ended up meeting a woman and moving in with her. The woman had a young child, so he decided it would be best to return the monkey," says Lett. "The monkey helped him move beyond his injury, and now he's in a relationship, which is something he never really thought was possible."


Thursday, December 7, 2017

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In the December 2017/January 2018 issue of Neurology Now, we feature letters in response to Dr. Avitzur's Editor's Letter (bit.ly/NN-ContingencyPlansin the October/November 2017 issue in which she encouraged readers to have a backup plan in case of a natural disaster or the death of a caregiver. Here, we include other letters we didn't have room to print.

Wish List

I wish the Ask the Expert question about bright lights impacting seizures (Ask the Expert, October/November 2017, bit.ly/NN-Light-Seizure) had included something about how bright lights affect migraine. I would like to see more information regarding migraine treatment, new or needed research, and anything else that helps the reader become more informed.

I was happy to see coverage of amyotrophic lateral sclerosis (ALS) ("The Power of Many," October/November 2017, bit.ly/NN-PowerOfMany) and Parkinson's ("Parkinson's on the Ropes," October/November 2017, bit.ly/NN-OnTheRopes). In For the Caregiver, I'd like to see a story about millennials taking care of Generation X parents with early-onset Alzheimer's, ALS, and other neurologic conditions.

—Jeannette Bradshaw

Portland, OR

THE EDITOR RESPONDS: Thank you for your letter. Please review our collection on migraine to learn more about treatments and research at bit.ly/NN-Migraine and bit.ly/NN-Migraine-Basics. To listen to a podcast with Teshamae Monteith, MD, a headache specialist and Neurology Now board member, go to bit.ly/NN-MigrainePodcast. For a story on young caregivers, go to bit.ly/NN-GrandCaregivers.

Neuropathy News

I realize there are many more serious diseases than neuropathy, but I have been reading this magazine for months and have not seen an article about it. It would be nice to know about any new breakthroughs. I have had it for years and the drugs do not help much anymore. Anything?

—Ron Perry

Santa Clarita, CA

THE EDITOR RESPONDS: Thank you for your letter. We strive to cover as many neurologic disorders as possible. In fact, a story about neuropathy is scheduled for early next year. In the meantime, please read our feature on Cedric the Entertainer, whose father has diabetic neuropathy, at bit.ly/NN-Cedric. Please also visit bit.ly/NN-Neuropathy to read our collection of articles on the topic.

Seizure Source

I am a survivor of herpes simplex encephalitis and a board member of Encephalitis Global, Inc.  I got so excited when I started reading Eye on Therapy ("Epilepsy Evolution," October/November 2017, bit.ly/NN-EpilepsyEvolution) and learned that Scott Badzik was found to have encephalitis. I was surprised that it was never mentioned again. Seizures are a common residual of many forms of encephalitis ().  In our online support group, many of our members have seizures (bit.ly/EG-Seizures). I hope a future issue will include an article about encephalitis. It is not as rare as people think. Encephalitis Global has more than 6,000 members worldwide.

Ingrid R, Guerci

White Plains, NY​


Friday, November 10, 2017

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BY BETHANY MELOCHE

I've read a lot of articles and heard a lot of podcasts about the "things you shouldn't ask me about my disability/disease/body." I get it. As a person who happens to have Charcot-Marie-Tooth (CMT) disease, a condition that affects the peripheral nerves that control muscles, causing muscle weakness and loss of function and sensation in the limbs—I too have been on the receiving end of many ill-timed or thoughtless questions. My thinning legs and wrists, curled fingers, and odd gait draw many stares and inappropriate comments.

But not all questions and conversations relating to CMT leave me feeling lousy. Some are even unexpectedly delightful. So, let's change the conversation: Here are seven things you can ask me about my disease. Some of them I even wish you would ask me!

1. What are your life goals? This is a positive way to transition into chatting about my disease. A lot of my goals have been influenced or inspired by my having CMT—my decision to change careers, my annual fundraiser, and my dream of running a marathon. I'd rather talk about my disease in that context than any other.

2. Can I help with that/Can I get you something? If you see me hopelessly reaching for something, or generally struggling, it's not inappropriate to offer a hand. In fact, it's typically greatly appreciated. (Shout-out to the nice man who offered to carry my latte to my table today!)

3. What preconceived or mistaken notions do people have about you because of your condition? Not only is the answer to this question likely to be enlightening, it should lead to some great potential follow-up questions. (Also, who doesn't love the chance to complain a little?)

4. What do you do to stay fit? Fitness is relative, and we each have our own version of what that means. Sure, I'm not nearly as strong as someone without CMT, but I still find ways to stay fit; exercise and nutrition are two of my favorite things to talk about! People are often surprised that despite wearing leg braces, I completed a 50-mile fundraising walk this year.

5. How are you feeling today? I've heard some people hesitate to ask variations of "How are you?" because they assume that for someone with a chronic health condition the answer is always "not great." But we all have good and bad days, and that's why the today qualifier is helpful. Asking this question shows that you not only care, but you recognize that we have good and bad days—same as anybody else.

6. Where can I find more information about your disease? I don't think I've ever been asked this question, but if I were, I would think, Wow, this person isn't just wanting to satisfy his curiosity; he is genuinely interested in learning about my disease! I always have lots of resources to share—starting with the CMT Association website, cmtausa.org.

7. Can you autograph your book for me? I recently published How Should a Body Be?, a memoir about my experiences growing up with CMT. I love being asked about my book. These are the best kind of conversation starters: asking about something I'm passionate about. Many people write blog posts, Facebook posts, books, or even host fundraisers around their diseases. These are great topics to engage around. It doesn't need to be a big thing either—if you see someone who took the time to put unusual decals on her wheelchair or leg braces, ask about them!

Listen and Learn

I wouldn't recommend your first question to anyone be about his or her disability/disease/body. Instead read the relationship. If it's in a place where you can bring up any potentially emotionally charged subject—think politics, religion, or dogs versus cats—you can probably ask about the disability.

In general, people love talking about their lives. So if you are a good listener and care about what I'm saying, you have the opportunity to connect with me in a meaningful way.

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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, November 10, 2017

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BY BETHANY MELOCHE​

"Anything else?" My neurologist looked up from her clipboard, pen still on paper. We were 30-plus minutes into a detailed family history and chronology of symptoms.

"Well, the fatigue has been pretty severe," I said.

"Have you talked to your occupational therapist about that?"

"No…"

"She might have some strategies to help you pace yourself."

I held in a groan. "I don't have a problem with pacing myself. My problem is being able to do anything at all."

She made what I think was supposed to be a sympathetic "mmmh" sound, but dropped eye contact and changed the subject.

Living with Chronic Fatigue

Even the most compassionate people have trouble understanding true chronic fatigue and why suggestions like "have you tried pacing yourself?" make me want me to bang my head against that doctor's clipboard. It's just one of those things that's hard to get unless you've lived it.

Even I only know what my fatigue is like. No one else's. And I'm still learning how to manage my own. I know some of the ways—a peaceful morning routine, scheduled work, daily walks, iron supplements—but what works for me may not work for the next chronically tired person.

But there is one thing I'm pretty confident of: managing fatigue takes energy. Physical, mental, emotional, energy.

This is really, really annoying. How do I find the energy to manage fatigue?

3 Steps to More Energy

Here are three strategies that have been helpful for me:

1.      Reduce anxiety

I've never considered myself to be an anxious person. But when my fatigue is at its worst and I don't accomplish all that I want to, I feel guilty, stressed, and anxious. These feelings then exacerbate my fatigue. It's an awful cycle. Getting out from under it requires an upfront commitment of energy, but a worthwhile one. See if these things make sense:

  • I aim to keep my physical and digital spaces—kitchen, email, computer desktop—tidy. I try to get a handle on anything that contributes to mental clutter.
  • I schedule work time. This means that when I'm working I'm working, and when I'm not, I'm not. This is especially critical if you work from home.
  • I make time to tackle the items that are most weighing on me, the ones nagging me as I'm trying to fall asleep.
  • I sometimes have to limit additional obligations for a stretch. Sometimes I have to put a pause on progress in order to recollect myself. 

2.      Boost emotional energy

Just as you want to avoid things that sap your emotional energy, you want to find activities that boost it. Preferably ones that don't take a lot of physical effort (so going to the theme park for a day may not be the best choice). Look for little things that bring you joy. It might be drinking your tea from a pink unicorn mug instead of a boring white one. Or a morning routine that includes cuddle time with your dog. Identify these activities or rituals and insert them deliberately throughout your day.
 

3.      Study your body

Managing your fatigue not only takes energy, it takes knowledge. You need to study your fatigue like a scientist. A few questions to investigate: Do you respond positively or negatively to exercise? Do naps refresh you? If you overdo it, are you back to baseline the next day—or are you still suffering from the day before? How many hours sleep is optimal for you?

Don't just hypothesize. Test and record your results! At the very least you should identify the best ways to structure your day, but you may also stumble upon other contributing factors.
 
These are just a few strategies that help me to not only have the energy to manage my fatigue, but to know where to focus that energy. And even though fatigue is a daily challenge, I've learned to understand mine, and I've become both happier and more productive because of it.

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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.


Thursday, November 9, 2017


​In the December 2017/January 2018 issue of Neurology Now, we profile actress Victoria Dillard, who was diagosed with young-onset Parkinson's disease in 2006 when she was 36. Although she had no family or friends with the disease, she became familiar with it while playing Janelle Cooper on Spin City with Michael J. Fox. She remembers when he sat the cast and crew down to tell them of his diagnosis and his decision to leave the show. In this online exclusive, we share resources and statistics on Parkinson's disease.

BY ANDREA KING

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​By the Numbers

All statistics are from the Parkinson's Foundation.

1 million—The number of Americans living with Parkinson's disease.

60,000—The number of Americans diagnosed with Parkinson's every day.

60—The average age at diagnosis.

1.5—The rate at which men are diagnosed compared to women.

4—The percentage of people with young-onset disease, defined as being diagnosed before the age of 50.

$25 billion—The combined cost of the disease, including treatment and lost income.

$2,500—The average cost of medication per person per year.

$100,000—The average cost of surgical treatment per person per year.

RESOURCES

American Academy of Neurology patient site: bit.ly/AAN-Parkinson

American Parkinson Disease Association: apdaparkinson.org; 800-223-2732

Michael J. Fox Foundation for Parkinson's Research: michaeljfox.org; 800-708-7644

Parkinson's Foundation: parkinson.org; 800-4PD-INFO (800-473-4636)

The Parkinson's Institute and Clinical Center: thepi.org; 800-655-2273; 403-734-2800

The Parkinson Alliance: parkinsonalliance.org; 800-579-8440