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ALS Registry

August 2012

Inside this Month's Exchange eNewsletter . . .


Ask the Doc: Q & A with Edward Kasarskis, MD, PhD

How to Avoid the Risks of Dehydration

Dr Kasarskis

Dr. Kasarskis

Q: It’s been a hot summer, and I realize that I’m sometimes getting dehydrated. Do you have any advice?

A: A timely question! It’s been a hot summer here in Kentucky and I know almost the entire country has been sizzling.

For people with ALS, preventing dehydration is important for a number of reasons. As we age --and most people with ALS are middle aged or older -- the risk of dehydration increases. For those with ALS, some of the physical issues you face make it even harder to take in the fluids you need.  The stakes are higher for you than for most other people, since thicker secretions caused by dehydration can make your life miserable and negatively affect your health.  Thick, string-like secretions in the throat are uncomfortable and can be very difficult to swallow for ALS patients with dysphagia, or to cough them out if you have a weak cough.  The problem is only made worse if you can't hold your mouth closed due to weakness and are a "mouth breather." All this can be minimized with enough water.

Athletes and hikers know that a good way to measure dehydration is to look at the color of their urine, and while this may sound odd, it’s true. Your kidneys keep as much fluid as they need to safely function and only send the excess to the bladder for “processing.” So dark yellow, concentrated urine is a sign you’re dehydrated. Light, straw-colored urine says you’re getting enough fluids. Good advice for ALS patients, too.

Because many people with ALS have difficulty swallowing or managing fluids – such as trouble sucking fluids or getting their lips securely around a straw – they’re likely to take in less than they need. Those with PEG stomach tubes are also at risk, as you may assume you’re getting what’s necessary through your regular feeding process, but you may not be getting enough fluids with just your liquid nutrition from a can.

Some patients even tell me that they deliberately cut down on their fluid intake just to avoid trips to the bathroom.  Do not do this!

Here are some tips that should help reduce your chances of getting dehydrated:

  • If you have trouble managing and swallowing liquid, try Thick-It®. It’s a powder additive to water that turns the fluid into a honey consistency, which is easier to convey to the back of your mouth to swallow. It’s also helpful for those with lip closure weakness.
  • For those with feeding tubes, please realize that you should take in plain water through your tube just as you would sip a glass of water or ice tea throughout the day.  The cans of liquid nutrition do not have enough fluid in them to get you through the day.  On a hot day, take in extra fluid in addition to your normal intake of liquid nutrition.  When your spouse, caregiver, or friend takes a drink of water, join them, via your tube.  It’s actually a good way to realize how much fluid you need since you’re sharing the same environment.

A side note about alcohol.  As a disclaimer, I actually like beer and wine and, of course, Kentucky bourbon.  But this is not the kind of extra fluid I am referring to.  Alcohol is a "diuretic" which means, it actually stimulates urination and fluid loss from the body.  So if you do consume alcohol, be sure to take in additional plain water on top of the beverage.

  • In addition to extra fluid, be sure you’re getting enough fiber to help prevent constipation.  You can use Metamucil® powder, a bulk producing fiber supplement.  Just add water to 1 heaping teaspoon of powder (not the other way around), mix, and add to the tube each day.  It will take about a week to bulk up and soften the stool.  You can also opt for a product called Jevity® that is calorically-dense, balanced formulation with fiber.  Talk to your dietician about these nutritional tube feedings.
  • If your swallowing ability allows it, keep ice chips or a glass of water close at hand and remind yourself to sip them regularly throughout the day.  Also consider cold favorites like ice cream and popsicles.  They offer triple benefit: they may help cool you down, they’re extra fluid, and they’re fun to eat. I could give you some ice cream recommendations (from Babcock Hall, University of Wisconsin, Madison where I ate one quart a day when I was a student).  But many of them would probably not be appropriate for ALS patients since most of my favorites contain nuts or fruit, and might be harder to eat than plain vanilla or chocolate or coffee.
  • Don’t worry about having to go to the bathroom. The extra trips are worth it, so plan the extra time to do this. Dehydration can be very serious.

Finally, don't forget that our bodies are about 60% water. You know how people sometimes refer to their spouse as their "better half?"  Well, water is your "better 60%." Keep your tanks full.  Keep drinking and enjoy your summer.

Edward Kasarskis, M.D., Ph.D. is Director of the University of Kentucky ALS Multidisciplinary Clinic in Lexington, Kentucky, professor in the Department of Neurology at the University of Kentucky, and Chief of Neurology at the VA Medical Center in Lexington KY.

If you would like to submit questions for a future Q & A, please send your questions to theexchange@alsa-national.org.  Please understand that we won’t be able to address all questions and we won’t be able to respond to individuals personally. 

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Owl August 2012 ExchangeTry Online Access to Entertainment and Education: Swift, Simple and Fun

With the stresses and strains of living with ALS, it’s important to have some relaxation and diversion every day. It can be difficult to get out and about, and hard to know what you can easily access at no or low cost. But there are some terrific resources you should know about that will give you quick access online or by mail.

Books: Sure, there are neighborhood libraries. But you’ve got to drive there to get the books, spend time and effort looking for something you’d like, and remember to return the books on time. Now there are online book rental services that mail you the book you want and provide a free return mailer. Most offer hundreds of thousands of books and thousands of audio books, too.

  • Booksfree.com: Offers paperbacks and MP3-CD audio books. Prices vary but range from $10.99 a month to $30.49 a month depending on whether you want paperbacks, audio books, or a combination.
  • Bookswim.com: Plans vary; for three books a month it’s $23.95, with free return shipping.
  • Audible.com: A digital version of books on tape. Offers 60,000 book titles for use with an iPod or more than 500 other devices. One book a month for $14.95 a month (with a trial offer of $7.49/month for the first three months).

Music, News, Sports and Commentary: You can listen to a wide range of audio content at no cost through your computer     Music August 2012 Exchange

  • Tunein.com: Listen to the world free through live local and global radio stations: classical, music, talk radio, commentary, sports: everything. Wonder what radio sounds like in Hong Kong? Try it. Want to hear live Olympic commentary from London? Go for it. Also available in apps for smart phones and iPads.
  • music.aol.com/#/1: Provides free Internet radio, with 350 stations that range from music to news, sports and talk.
  • pandora.com: Free Internet radio that’s designed to help you find new music based on what you say are your past and current favorites.
  • listen.grooveshark.com: Songs and favorites.
  • napster.com: Dozens of categories. Free for 14 days, then $9.99 a month.

Education/Courses: Interested in learning about something you’ve never pursued? Or want to dive deeper into an area you know well? Either way, there are a wide range of courses available at no cost.

  • keepingscore.org: Produced by the San Francisco Symphony, the Keeping Score website is designed to give people of all musical backgrounds an opportunity to explore the music and life of the composers featured in the Keeping Score television series in depth, and at their own pace. Audio, video, and interactive material explores each composer’s scores and pertinent musical techniques as well as the personal and historical stories behind them in a user-friendly way.
  • Free-ed.net: Offers courses in many topics, from creative and performing arts to science, electronics, nuclear power and nanotechnology. The site includes some video lectures, like “Journey to the Edge of the Universe” by the University of California, Berkeley.
  • ocw.mit.edu: The program is designed to help you explore ideas and enhance your personal knowledge. They publish MIT course content online, complete with lecture notes, exams, reading lists and some video. Topics include everything from “Animal Behavior” to “How to Stage a Revolution,” “Downtown,” “The Royal Family,” “Reading Fiction,” “Learning from the Past: Drama, Science, Performance,” and many courses in science, anthropology, history and writing and more.
  • Study.com See links to free education online in a wide range of topics.
  • Livemocha.com: Free language education online. They offer courses in 30 languages, including Spanish, English, French, Japanese, Swedish, Mandarin Chinese, and much more. You can chat with native speakers and get feedback, too.

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Telehealth: A Potentially Useful Tool for You

Telemedicine is clinical care at a distance, using telecommunications, high-speed data lines and other modern technology.

To many, the concept seems quite impersonal: having a healthcare professional you have never met study your pathology slides, take a long-distance look at your rash or ask you a long series of questions. 

But if you’re seeking care you can’t get in your geographical area or you need an expert to weigh in on a health issue, telehealth can be a valuable tool.

Telemedicine Exchange August 2012Telehealth often involves physicians and patients talking face-to-face, via a web camera. You can see each other and discuss the situation almost as if you were in person. When needed, a specialized scope or an everyday camera can even project live images of your problem – a rash, a strange growth on your back, a sudden change in your gait -- for the health provider to assess. In other cases, data may be sent to specialists to review.

Telehealth is also increasingly used in home health care to monitor vital signs and check on data such as how much oxygen is circulating in your blood, pacemaker functioning, and much more.

When you’re traveling, telehealth can be helpful if find yourself needing advice from physicians back home or from specialists who speak your own language. Telehealth may also be harnessed to get a second or third opinion from a top specialist beyond your geographical reach.

Telehealth isn’t a substitute for your primary care physician, whom you need to manage your regular care. It’s typically your physician or a specialist you see regularly who would be most likely to suggest seeking advice or a second opinion from a telemedicine resource.

What about reimbursement for telehealth? It’s increasingly considered reimbursable, but that depends on a wide range of factors. If you have questions or concerns, be sure to ask about cost and reimbursement from the start.

Medicare may restrict reimbursement based on your geographic location, the billing codes used, and your state. Medicaid coverage also varies by state. And while several major health insurance companies cover telemedicine, you’ll need to check your own coverage. 

If you’re in a situation in which telemedicine could be helpful, it will typically be your physician, emergency room doctor or home health agency that suggests it.  But if you think a long-distance review by a specialist or real-time health monitoring for someone at home might be useful, ask your physician about the possibility.

Learn more about telehealth from the American Telemedicine Association.

By Barbara Bronson Gray, RN, MN

 

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Participate in these Educational Web Calls


Don’t Miss This August Call

Wheelchair Modifications to Improve Quality of Life

August 20 (Monday) at 11 am PDT (2:00 pm EDT)
Meeting number: 821 676 711
Meeting password: ATtopiccall1
https://alsa.webex.com/alsa/k2/j.php?ED=170237177&UID=1225856022&HMAC=a5d9d1ec101643864c0e4d6ebd455209021a9830&RT=MiM0

Upcoming Research Calls

Be Sure to Put this September Research Call on Your Calendar Now:

 

Targeting of monomer/misfolded SOD1 to treat ALS

September 17, Monday, 1 p.m. PDT (4 p.m. EDT)

Speaker: Janice Robertson PhD, University of Toronto

 

 

You should know:

You can read summaries of research calls you’ve missed by going to: http://www.alsa.org/research/research-webinars.html.  

 


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