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ALS Registry

June 2011

June 2011

This Month In . . .

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

Edward Kasarskis, M.D., Ph.D. is Director of the multidisciplinary ALS Center at the University of Kentucky Neuroscience Center 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. 

Dr Kasarskis

Dr. Kasarskis

Q:  I’d like to travel this summer but am unsure about whether I’m up to it and worried about whether it would be too difficult for my family and for me to manage. I have a PEG and I make all of my own food at home. What commercial product should I use when I am on the road? What should I know? What do you tell your patients about travel?

A: Generally I encourage my patients to travel but to plan more carefully than they did before they had ALS. Before you start thinking about your trip, talk with your physician about your particular situation. Generally, if your breathing status is not compromised, you’re likely to get the OK.

The biggest issue -- whether you travel by plane, train, a cruise ship, or automobile -- is to make a detailed list of what you need to bring, scope out a trip that is truly do-able, create a detailed itinerary and route, and plan for the inevitable delays. Pack as if you were going backpacking in the wilderness and have your needed supplies with you at all times. Call me compulsive if you wish but when you are backpacking, you won't have it available if you haven’t carried it. Ask yourself the necessary “What if?” questions, such as: “What if my plane is delayed several hours?” “What if the plane is canceled and we are stranded in the airport without our luggage?” “What if we hit heavy traffic or get stranded on the Interstate for several hours behind an accident?” Be sure to have what you would need to be comfortable in these situations, including food, water, medications, toilet paper, and whatever you typically need to manage your ALS effectively under the circumstances. If you’re flying, be sure to check with the airline about how to bring your "stuff" onboard (a wheelchair, walker, or BiPAP device). As for getting through security, you can check the TSA web page (http://www.tsa.gov/travelers/airtravel/specialneeds/index.shtm). They are currently allowing walkers, CPAP/BiPAP machines, oxygen concentrators, and many other assistive technologies.

Make sure you don’t get dehydrated. Research suggests people with ALS typically are 10-15% short of the recommended fluid intake. Travel tends to be dehydrating. So do what marathon runners are encouraged to do: pre-hydrate. And aim for straw-colored (very light yellow) urine; it’s a sign you are getting enough fluids. This is particularly important in hot and humid climates. Travel can also be associated with diarrhea (another source of dehydration), so pack Immodium®, just in case. If you’re going out of the country, you may want to ask your physician for Cipro®, a broad spectrum antibiotic.

And as for your question about food for people with a PEG when you can’t prepare it at home, I presume that you mean you can't puree your table food for PEG feedings. This would be very difficult to do on the road. However, there are many commercially available products in cans that don't require refrigeration, are ready to use, and provide complete nutrition. They will meet your needs while away from home.

Happy travels! As Bill Bryson wisely says, “To my mind, the greatest reward and luxury of travel is to be able to experience everyday things as if for the first time, to be in a position in which almost nothing is so familiar it is taken for granted.”

If you would like to submit questions for a future Q & A, please send your questions to Amber Walters at awalters@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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Tips for Summer Traveling

By Barbara Bronson Gray, RN, MN

Heading into the summer months, the urge to travel seems like it’s in everyone’s DNA. But for people with ALS and their families, it’s especially important to plan ahead to ensure your needs will be met every step of the trip.

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First, there is one big caveat: manage your expectations. Vacation and travel are absolutely more difficult when you’re dealing with ALS, and if you’re not anticipating some of the challenges, you and the people with whom you’re traveling could be frustrated and disappointed. Focus on the benefits, the new experiences, the chance to see family and friends, getting out of your day-to-day routine, and just having fun. Try not to compare traveling with ALS to trips you took in previous years.

Be sure to build in extra time to account for the challenges you may deal with on a daily basis. It may be harder to be dressed and ready early in the day, and it will probably take longer to get in and out of cars, vans, buses, trains and planes.  Also plan time every day for rest and relaxation. You’ll appreciate the break.

Pack items to make your travel, rest and sleep more comfortable. There are a wide range of inflatable pillows, portable feather beds, disposable items, compression socks,  and much more available through travel catalogs and some medical supply stores.

It’s also more important than ever to be prepared and do your homework. Call the hotel directly to ask about the facilities and to communicate your needs for wheelchair access, grab bars in the shower or shower seats, a room near the elevator, etc. If you stay in a hotel, make sure your room is on the first floor so you can get out without using the elevator (frequently shut down during emergencies) or a stairway.  If you’re driving, plan out the route carefully and note rest stops and places to refuel and have a meal or a snack.

Try to visit museums, parks, botanical gardens and event concerts on quieter days. Avoid weekends and peak periods and ask about extended hours. Many venues are open late one or two days a week and are far less crowded during those times. Also call the airline to be sure it can accommodate any Bi-PAP or respiratory aids, a wheelchair, walker or other support you rely on. Some large airports, museums, theme parks, sports stadiums and shopping centers have wheelchairs and scooters available for loan, and you may be able to reserve one in advance of your visit. Even if you don’t routinely use a wheelchair or scooter, you may find you want one just to cover more ground or conserve your energy.

Speaking of being prepared, be sure to think ahead carefully about your potential medical needs. Wear a medical alert tag and bring a detailed letter from your physician explaining your medical condition, medications, and any recent test results or procedures that could help quickly bring another physician up to date. The letter will also verify for the airlines what special accommodation you may need. If you bring prescription medications on a flight, be sure the pharmacy labels are attached and the medications are packed in your carry-on luggage.

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Before you leave, it’s wise to research the areas where you’ll be traveling and identify the nearest hospital, just in case you should need it. For more information you can check with the International Association for Medical Assistance to Travelers (www.iamat.org). Also be sure to bring the names and phone numbers of your key physicians and pharmacists and complete insurance information.

If you’re traveling out of the country, you should be aware that Medicare does not provide coverage outside the United States. Some Medigap (Medicare supplement) plans provide partial coverage. Be sure to check with your insurance provider and visit the State Department’s website to find out more information about health insurance abroad: http://travel.state.gov/travel/cis_pa_tw/cis/cis_1470.html.

And the end of each day, and when you come home from your trip, you may feel that you may not have covered as much territory as you would have in the past. It’s possible you didn’t see or do everything you had planned. But that’s OK. The purpose of travel is to see, and to enjoy, and to do what you can, and that you will have surely done!

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New Technology, More Options for Diagnosis and Monitoring

By Barbara Bronson Gray, RN, MN

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If you thought the symbol of medicine would always be a stethoscope, think again. New technology promises to fundamentally upgrade the tools of diagnosis and monitoring, and some of the changes will forever change health care. Since people with ALS can also have other health issues and conditions, the new technology may have a positive impact in reducing the number of healthcare visits necessary and improving the quantity and quality of information available.

For example, the stethoscope is on its way out. The new technology will be an ultrasound visualization device that looks like a large cell phone with an attached scanning probe. GE Healthcare makes the Vscan, and Mobisante just got clearance for a similar system that runs on a Windows-based Toshiba smartphone. The scans are designed to give a quick inspection of the heart, abdominal organs and bladder and can detect pleural (lung) fluid.

Instead of a Holter monitor, a somewhat clumsy device used to identify abnormal heart rhythms, you’ll see the “smart bandage,” an adhesive patch that measures vital signs through a wireless transmitter. Readings can go directly to a smartphone, and in some cases may prevent hospitalization for those who require close monitoring.

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Some software developers are using the iPhone and the Android operating systems to create apps that can turn smartphones into mini, affordable medical devices for both ongoing chronic disease monitoring and in-the-field diagnosis. For example, the Electrical and Computer Engineering in Medicine (ECEM) research group at the University of British Columbia has developed a mobile solution to measuring key vital signs called the “Phone Oximeter” to analyze oxygen saturation in the blood.  It uses a traditional FDA approved pulse oximetry sensor, but it has been modified to interface with an iPhone, Android, and other mobile operating systems.

DiabetesManager by WellDoc has been approved by the FDA to market a blood glucose measuring system that links to a cell phone app to help manage diabetes. WaveSense, an iPhone app by AgaMatrix, has premarket approval, and can analyze and send data directly from a glucose monitor.

Thought a childproof cap on a medication container was modern? Imagine “smart” pill bottles that light and beep when it’s time to take a pill, sending an alert or automated text message to caregivers or family members if you skip a dose. Vitality makes a GlowCap wireless Internet-connected medication cap.

If you’d like to read more about new and emerging technologies, visit http://www.imedicalapps.com/, an independent online blog written by a team of physicians and medical students who provide reviews of mobile medical diagnostics and monitoring applications.

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Get in the Swim this Summer

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If you love the water but have difficulty getting into the pool or managing the sandy beach, don’t despair. More and more pools and beaches have assistive devices that can help. Public and membership pools increasingly have comfortable lifts available, and some beaches have beach buggy wheelchairs and lounge chairs for rent. Call the beach or pool to learn more about what is available or do a Google search to find out more about the products.

 

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Participate in these Educational Web Calls

Research Update

The Role of TDP43 in ALS
June 14 (Tuesday), at 1 p.m. PDT (4 p.m. EDT)
Speaker: Tom Maniatis, Ph.D., Columbia Medical School, New York, N.Y.

Identification of mutations in TDP43 linked to familial ALS has opened up new avenues for research.  Using novel technologies, Dr. Maniatis is researching how TDP43 causes ALS, enabling the identification of new approaches to treat ALS.  For information about how to join this call, please visit http://www.alsa.org/research/research-webinars.html


Assistive Technology Educational Series

Dealing with Anger Regarding the Loss of Communication Abilities 
June 21 (Tuesday) at 11:00 a.m. PDT (2:00 p.m. EDT)
Guest Speaker: Jennifer Klapper, RN, CNS, Mental Health Nurse, ALS Association, Greater Philadelphia Chapter

Call-in toll-free number (US/Canada): 866-699-3239
Meeting Number: 829 930 037
Meeting Password: TopicCall2011
https://alsa.webex.com/alsa/j.php?ED=150010882&UID=1161479117&PW=NZWExMDg4YWYz&RT=MiM0

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Patient Involvement in Clinical Trials Critical to Finding New Treatments for ALS

An article published in Nature Biotechnology reports that data gathered on an online patient social media site, “PatientsLikeMe,” supports information discovered during a clinical trial investigating the use of lithium as a treatment for ALS.

"We all have a responsibility to encourage patients to understand the value of enrolling in clinical trials so we can advance our understanding of the disease” said Director of Research and Development at PatientsLikeMe Paul Wicks, co-author of the article.  “PatientsLikeMe is not a replacement for these pivotal trials, but research done collaboratively with patients using our system supplements and complements the great work that is being done every day by clinical trial networks such as those supported by The ALS Association.”

Click here to read the full article.

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Tune in to Speak Out Against ALS

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Visit www.speakoutagainstals.org to get involved!

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