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ALS Registry

December 2012

In this issue . . .  

Ask the Doc

Tips for Coping with Holiday Stress

Charitable Flight Resources to Consider

This Month's Educational Web Calls  


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

Kasarskis
Dr. Kasarskis

Travel Considerations

Q: How do I know if it's OK for me to travel?

A: Excellent question, especially with the holiday season here. Traveling is great fun but requires detailed, advanced planning if you have ALS. To answer your particular question about whether you are fit for a trip, the first step is to talk with your neurologist about the trip you’re envisioning and get feedback.  Go to an ALS support group and ask other patients about their own experiences.

Many people with ALS take all sorts of trips -- from international journeys, to cruises, to car travel, and everything in between. Which type of trip might be right for you may depend on your individual strengths, challenges, and needs.  Discuss the trip thoroughly with your family and anyone who may be accompanying you to see how they feel about tackling the adventure.  Everything that challenges you on a day-to-day basis comes with you on a trip, but with a twist: everything is a little bit harder and will take longer.

For many people with ALS, almost any trip is do-able with the right preparations. Typically, air travel is more challenging than is a road trip -- even if you are an experienced air traveler.  Airports and managing assistive devices when navigating security, boarding, and the flight itself take special planning and consideration.

Any significant delay in a flight or a cancellation will be a huge problem.  So to put this into sharper focus, ask yourself, "What would I have done if I were flying into New York City when Sandy visited?"  That's how you need to plan:

  • Get airport maps and find out how to get to security, the location of accessible bathrooms, and the availability of wheelchairs or electric carts.
  • Plan out your arrival carefully: where to park, where to check in, etc. When you’re traveling with extra gear and with reduced mobility, every extra step really matters. 
  • When you’re planning travel, schedule flights early in the day; they’re less likely to be cancelled or delayed.  Even if they are, there are typically more flights in the daily line-up to get you where you need to be.
  • Having a little extra leg room might be very helpful.  Talk with an airline representative or travel agent about options before selecting a seat when you book your plane ticket.
  • Be sure to allow more than enough time to transfer from one plane to another if you don't have a direct flight.  Tight schedules can be difficult to meet if you have mobility issues.  Talk with a travel agent for special advice on flight arrangements that may better fit your needs.  Don't try to save money by booking flights on the Internet, talk to a human (a travel agent) face-to-face
  • Bring along a list of major hotels near the airports you’re going to in case of a delay.  Being able to phone in for a reservation quickly may help get you ahead of the line in case of a flight cancellation.  You don't even want to think about spending a night trying to sleep in the airport.
  • Know your respiratory status and whether you may need to bring oxygen on the plane. If you’re having trouble coughing, know that the plane is a frightening place for a medical emergency.
  • Carry on everything you might need for three days or so, just in case a travel delay or weather problem grounds you. That means all your medications, any special food (especially if you use a PEG tube), toiletries, a change of clothes, and something to read or to help entertain you.
  • Bring an empty water bottle with you to fill up when you get past security. It’s always smart to carry water on a plane.
  • Bring extra non-perishable food: nuts, dried fruit, and the like.

If you’re planning to go on a cruise, know that many cruise lines are now very attuned to disabled passengers.  But sometimes the doorways and bathrooms may not be set up for your particular mobility issues.  Be sure to talk with the cruise company and travel agent to ensure your needs can be met.

Plan carefully. Make a very detailed list of everything you need for your trip and start to pack early so you’re not rushed. 

Enjoy concerts and museums but, again, plan ahead to be sure you can easily find appropriate parking, elevators and bathrooms.  Check out the website or call ahead to understand what’s available to you. If you’re going to a resort, ask about the availability of pool lifts and beach wheelchairs. They can greatly increase your accessibility to fun and relaxing activities.

To sum it up:  when traveling with ALS, the best surprise is no surprise.  The time you invest in carefully planning will help ensure you have a good time!

To learn more about successfully navigating air travel, visit the Transportation Security Administration website. (http://www.tsa.gov/traveler-information/travelers-disabilities-and-medical-conditions)

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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Tips for Coping with Holiday Stress

Who doesn’t love the holidays? Yet they are frequently stressful, sometimes even depressing.

Holiday Stress Exchange December 2012

Expectations for joy and fun are high. The stores are decorated. Bright lights are blinking merrily.

But the realities and challenges of illness, financial stress, multiple demands on time and energy, and sometimes even strains in treasured relationships can all cast a long shadow on the festivities.

The holidays may heighten the tension between family and friends for all sorts of reasons. People who haven’t seen or talked with each other for months or even years may suddenly find themselves in a house together for several days.  Unresolved issues may come up, or people may suffer in silence.

Some people may be separated by conflict or distance from someone they love. Thinking back on the year or remembering previous holidays may cause sadness and a sense of nostalgia and loss.

Money can be another major source of stress. Expectations over the holidays – gifts, cards, entertaining, travel – may be tough to meet, especially at a time when other issues may be present, such as the loss of a job.

And then there are the physical demands, including shopping, cooking meals, wrapping and sending presents and mailing cards. It all adds up.

For those with ALS and their families who may already be experiencing fatigue and high demands for their energy, the holidays can be especially draining. 

But there are things you can to do minimize the stress and fatigue:

  • Plan for what matters most. Allow yourself to simplify the way you celebrate, holding on to what you most enjoy.
  • Get organized. Make lists and delegate as much as you can as early as possible.  People want to help but may need ideas about how they can participate.
  • Be realistic. Budget your time carefully. Build in time for rest and relaxation. Learn to say no; people will understand.
  • Simplify and modify traditions if that will reduce your stress.  Scale down your Christmas Eve dinner, or send e-cards instead of traditional cards, or agree to give fewer gifts.
  • Budget thoughtfully. Determine what you’re comfortable spending and don’t go beyond that self-imposed limit.
  • Don’t worry about being sad. It’s stressful to hide your feelings. Being open and frank about grief and loss -- or just how you feel about coming to the end of another year -- will help you and the people you’re with process your feelings. The people you love will want to hear what you’re going through.
  • Listen to others. The holidays are a time to show you care. Sometimes just listening is the greatest gift you can give.  

                                                                                              by Barbara Bronson Gray, RN, MN

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Charitable Flight Resources to Consider

Flying Exchange December 2012

It’s the high travel season, but for some, air travel is just too difficult. Others may need help flying to get a needed treatment or a consultation. Here are a few resources that may be helpful:

  • National Patient Travel Center: Provides information about all forms of charitable, long-distance medical air transportation and provides referrals to resources in the national medical air transportation network.

The National Patient Travel Center is committed to ensuring that no financially-needy patient is denied access to distant specialized medical evaluation, diagnosis or treatments for lack of a means of long-distance medical air transportation.  Visit: patienttravel.org  or phone 800.296.1217.

  • Air Compassion for Veterans: Helps ensure that no financially-stressed veteran or family member is denied access to distant, specialized medical evaluation, diagnosis, treatment, counseling, or other services.  Visit: aircompassionforveterans.org or phone 888.662.6794
  • Mercy Medical Airlift: Mercy Medical Airlift: Committed to providing medical flights for necessary medical evaluation and treatment. Visit mercymedical.org or phone 800.296.1217.
  • Patient Airlift Service (PALS): Serves the entire northeast United States, from Northeast Ohio to Virginia, providing free flights for those who are too weak or fragile to endure long airport lines, or who are part of a support system for someone who is far away and very ill. Visit palservices.org or phone 888.818.1231.

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Participate in these Educational Web Calls

Biomarkers in ALS: From Discovery to the Clinic
Tuesday, December 13, 2012 at 1:00 p.m. Pacific Time, 3:00 p.m. Central, 4:00 p.m. Eastern
Hosted and organized by The ALS Association’s Research Department
Speaker: Dr. Andreas Jeromin, Chief Scientific Officer from NextGen Sciences DX, in Boston, MA

Llink to the webinar: https://alsa.webex.com/alsa/j.php?ED=175403712&UID=1242977127&PW=NNjJlOTZhYjRi&RT=MiM3

Call-in toll-free number (US/Canada): 877.668.4490
Session number:   829 443 997

Using Technology to Create Family Keepsakes
Monday, December 17, 2012 at 11 a.m. Pacific Time, 1 p.m. Central, 2 p.m. Eastern
Speaker: Alisa Brownlee, ATP, The ALS Association Greater Philadelphia ChapterTime: 11:00 am, Pacific Standard Time
Call-in toll-free number (US/Canada):877.668.4490
Session number: 823 652 979
Session password: Attopiccall1
https://alsa.webex.com/alsa/k2/j.php?ED=173134802&UID=1235064087&HMAC=318f317e4c338e171d037fcd69468e40e2a805f6&RT=MiM0

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