| On The Road Again…Multiple Sclerosis And Traveling |
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As summer approaches, we all begin to hum along with Willie Nelson’s “On the Road Again”.
Vacations in the summer time are an American tradition. Often people living with
multiple sclerosis are hesitant or anxious about traveling because of the
increased time (and sometimes effort) it takes to travel. However, with a
little research and planning you can begin to allay those fears and anxiety.
In this day and age, it pays to plan ahead, particularly with airline travel,
due to tighter security regulations and airline restrictions, whether you
have MS or not! However, it is true that people with MS have to think about
other aspects such as traveling with medications and syringes.
When traveling with medications it is important to keep in mind a few things:
- Bring enough medication to last your entire trip plus a few days
- Pack your medications in a carry-on bag
- Keep all your medications in the original containers
- Carry a safe used-needle container
- Bring your insurance ID card
- Take your emergency contact information including your doctor’s name and phone number
- Make a list of the medications you take and pack it separately from your carry-on bag
- Many airlines require a doctor to certify that you are taking injectable medications and the original prescription label for the medication.
- It is safest to hand carry medications rather than putting them in checked baggage.
Betaseron should be stored at room temperature (77°F), but may be stored between
59 and 86°F.1 Rebif should be refrigerated (36°-46°F), but if a refrigerator is not
available, Rebif may be stored at or below 77° for up to 30 days and away from heat
and light.2 Avonex vials should be refrigerated (36°-46°F), but can be kept for up to 30
days at room temperature (77°F). Avonex in prefilled syringes must be stored in a
refrigerator at 36-46°F. Once removed from the refrigerator, they must be used
within 12 hours.3 Copaxone should be refrigerated (36°-46°F), but may be kept
at 59-86°F for up to one week.4 Rebif and Copaxone have little travel kits
but all it would take would be a little “blue ice” container in a soft refrigerated bag.
If you experience an increase in symptoms, you may feel it is an exacerbation.
The most important thing to ask yourself is “What is an exacerbation?”.
An exacerbation is a worsening of old symptoms or the appearance of new ones
that lasts at least 24 hours. It is important to remember this because temporary
worsening of symptoms can occur because of increased emotional stress, heat and/or
fatigue. If the symptoms persist, are there additional signs of infection?
If there is an infection, it needs to be treated. In the event of an exacerbation,
seek a medical evaluation, preferably by a neurologist. You can research physicians
in the area where you will be traveling through the Consortium of MS Centers website
www.mscare.org, an organization which is comprised of individuals and centers
in North America which treat people with MS, or the American Academy of Neurologists
www.aan.com In addition, you can ask your neurologist for any recommendations.
If you are traveling out of the country talk to your physician and do some research
about the healthcare system prior to taking your trip. In addition, discuss with
your physician the possibility of taking a week worth of antibiotics, in case you
get an infection or if you are familiar with the signs of an exacerbation,
a short course of oral steroids.
Other things you need to keep in mind in terms of traveling include the use of
wheelchairs, scooters or other mobility aids for purposes of mobility and fatigue
management. Individuals who rely upon these mobility aids often need to allow a
greater amount of time for traveling. Airport travel may require additional
security to examine the mobility aid as well as the process of checking the
wheelchair or scooter. For those who have difficulty with fatigue, utilizing
airport carts and airport personnel to help with transportation to and from gates
can be extremely beneficial. This can also be true for traveling by train.
Individuals who experience bladder dysfunction are often reluctant to travel.
However, there are medications and techniques which allow individuals to feel more
comfortable with travel without the fear of ‘accidents’. It may be appropriate to
adjust medication for bladder dysfunction prior to travel. In addition, intermittent
catheterization (IC) or foley catheters can be helpful in providing relief for
bladder dysfunction. If you are not familiar with techniques for IC, your trip
is not the place to learn. Inexperience in IC can set you up for infection.
Consult your physician to determine the best course of action for your situation.
When staying in hotels it is important to discuss your specific needs when making reservations.
Do you need a handicap accessible room? Do you require equipment to help with your
activities or to store your medications? Is the hotel located close to attractions you
are interested in visiting? Are there restaurants close by? Is the hotel restaurant
handicap accessible? Is there air conditioning? It is important to ask the
appropriate questions for your situation prior to making your reservation.
The bottom line is that traveling with MS may take additional up front time in
researching your trip. However, that additional time will make for a wonderful
experience and minimize potential problems. So get out there and enjoy your travels!
If “touring” with a group, find out about tour vehicles. Buses are difficult to access,
look into availability of wheelchairs/scooters at destinations to avoid having to take
your own. If on a cruise or other tour, the staff people should be able to do that.
Think of collapsible canes for use in areas that are uneven such as brick, cobblestones,
lawns or fields. Carry it everywhere for easy availability. If touring on a bus,
is there a bathroom? If not, read up on the area where you are going to find out
what to expect. Many foreign cities are not very accessible but many are, so do
your homework and avoid difficult places.
Work out schedules with your family PRIOR to leaving. Allow yourself “rest” time even
if it means they do things without you. That way, everyone’s needs get met and the
vacation will leave good memories for all. Try to be flexible for those days when
your energy has got up and went. MS is unpredictable, as you know, and these things happen.
Do remember, however, that if there is something you had your heart set on and you know
it will “zap” you, go ahead and do it anyway but realize you will have to make up for
it the next day. You cannot keep doing that without some recovery time or you will
be miserable later.
Vacations are important to spend time with your family. Proper planning and discussion
with your healthcare team will allow you to avoid or minimize headaches.
Barbara Giesser, MD
Patricia Kennedy, RN, CNP
Brian Hutchinson, PT
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| - reprinted with permision from- The Heuga Center. |
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