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Tips for Traveling and Multiple Sclerosis

July 27, 2008, 9:17 am

We’ve enjoyed a fair amount of family travel this Summer. Most trips were by plane, but the best was a road trip across the South. Now that this Summer of travel is nearly over, I’ll share some tips I’ve picked up along the way about traveling and Multiple Sclerosis.

1. Take your medications and pack them for easy access. For air travel, they must be in their original containers provided by your pharmacist. Don’t be surprised if the TSA uses a machine to test your pills to verify they are what the label says they are. It looked like an odd procedure in which a gloved TSA staff wipes a pill with a swap and inserts the swap with long tweezers into a machine. I can only imagine the TSA must believe one can pack enough explosives in an Aricept pill to take down a plane. That, or there’s concern that dope dealers are transporting illegal drugs in Provigil bottles. For whatever reason it is performed, the pill check process slowed passage just a bit through TSA check points.

2. The Transportation Security Administration TSA offers this information for travelers with disabilities and special needs: http://www.tsa.gov/travelers/airtravel/specialneeds/editorial_1567.shtm

3. Be prepared for heat. On road trips, take an ice chest with ice and bottled water. Heat exacerbates fatigue. If a fan belt breaks or you have a flat tire, you’ll want a way to keep cool. One of the best methods of cooling quickly is the use of cooling bandanas. For emergencies, we keep a pre-soaked cooling bandana and a freezer pack in a gallon zip-lock freezer bag in the top of the ice chest. It’s ready immediately if needed.

4. Consider using a national chain pharmacy to ease your acquisition of medications in case you forget your meds or require a prescription refill while traveling.

5. If walking is problematic, as soon as you can, visit your airline’s website and use the online interface or call the phone number provided to arrange for a wheelchair or other assistance between connecting flights. You can also request special seating with additional leg room for example.

6. If you use a cane, consider taking a folding cane with you on your travels. It’s much easier to stow when you’re seated.

7. Allow the people with whom you travel to assist you when they offer. You’ve got nothing to prove.

8. I believe the air traffic control folks in some airports must be having a contest to see how far they can make passengers run between connecting flights. If your schedule permits, allow a little extra time between connecting flights so you’re not rushed from one gate to the next.

9. Take advantage of the assistance offered at museums or other sites. The Martin Luther King Jr National Historic Site in Atlanta is maintained by the National Park Service. The park service staff will gladly offer you a choice of wheelchairs in exchange for your drivers license.

10. Enjoy your travel. Don’t let anyone talk you out of doing what you want to do or seeing what you want to see. I was happy to follow my wife slowly up and down the small, winding steps to the top of the lighthouse at Marblehead. And she walked down the 8 flights of steps of the Inside CNN tour in Atlanta.

Be careful that you don’t allow the symptoms of Multiple Sclerosis to prevent you from traveling when you have opportunity. Accommodations are available to make travel much easier than ever before.

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Tags: multiple sclerosis travel, travel with disabilities, TSA medications
Category: Living with MS | Comment

Multiple Sclerosis, Wheelchairs and Lifespan

June 8, 2008, 9:40 am

My wife made a comment last week that I’ve thought about a lot since she said it. It was said in passing in the middle of a conversation that I cannot remember (apparently, my wife’s not the only person in our family with poor memory). In this case, though, I think I fail to remember the rest of the conversation because her comment stunned me.

“I don’t think I’ll live a long life.”

I knew if I talked to her about it then I would become too assertive about how wrong I thought the statement was and that she had no right to think that way. (Actually, she has the right to think any way she wishes … and usually does … even if when I don’t like it!)

I knew, though, I wouldn’t be able to listen to what she was really saying. So, a week later, yesterday morning, I asked her about her comment.

“I imagine you said it because you have MS, but having MS doesn’t mean you’ll have a shorter life. Are you thinking you’ll have a shorter life because of something you’ve read? Or is it just a hunch?”

She’s a realist and a pragmatist. “I need the cane to walk around on and it’s getting worse. I’m headed for a wheelchair in my future and I don’t think people confined to wheelchairs live as long,” she explained simply.

I know her gait is worsening. And I won’t be surprised when she requires a wheelchair. But I’m not ready to believe it will shorten her life. I said, “Unless you’ve read some significant study, I wouldn’t assume being confined to a wheelchair automatically shortens one’s life.”

She countered, “people in wheelchairs get less exercise, hearts grow weak, muscles grow weak. I don’t think they live as long.”

Ever the optimist, I responded, “Yes, perhaps that could be true, but I know people confined to wheelchairs who are in great shape. They even make racing wheelchairs for athletes!”

Her eyes said, “but I’m not an athlete.” She looked at me like I wasn’t understanding her. The fact is, I didn’t want to understand. I didn’t want to think that being confined to a wheelchair will shorten her life.

It’s obvious neither of us knew the real impact a wheelchair has on lifespan. So it was time for a little online research.

I’ll share what I’ve found about life span and wheelchair confinement. Interestingly, I’ve not been able to find a single study of the impact of wheelchair confinement on lifespan for MS patients.

So I’m approaching it from a different angle. I’ll start with the basic question, “Is MS fatal?”

According to the National MS Society the answer is: “No, MS is not a fatal disease, except in rare cases. People who live with MS can be expected to have a normal or near-normal life expectancy.”

I like that answer except for the “except in rare cases” part. But from all I’ve read, those rare cases are indeed rare and consist primarily of MS patients in whom the neurological damage is done to areas of the brain and nervous system which control breathing or regulate heart beat.

A more complete answer seems to be available on the Medscape Today website in “Aging With Multiple Sclerosis“, an article published in the Journal of Neuroscience Nursing (J Neurosci Nurs 36(5):245-251,259, 2004. © 2004 American Association of Neuroscience Nurses)

The authors write, “The disease (Multiple Sclerosis) causes demyelination of the central nervous system and results in symptoms such as extreme fatigue, mobility impairment, optic neuritis, weakness or paralysis, abnormal/painful sensations, and loss of balance. Although these symptoms can result in considerable disability for the person with MS (Finlayson, Impey, Nicolle, & Edwards, 1998), overall life expectancy is not dramatically altered for these individuals (Weinshenker, 1995). Of those with MS, 85%-90% can expect to live as long as their age peers (Minden, Marder, Harrold, & Dor, 1993). Currently in the United States, life expectancy estimates range from 74 years for men to 79 years for women (Centers for Disease Control, 2001).”

The authors did not separate the MS patient population into two groups, Those in Wheelchairs vs. Those Without Wheelchairs. The statistics include all MS patients.

So I’ve found an answer to my wife’s statement that she’ll not live a long life. I think she will live long.

Here’s why: 85%-90% of MS patients can expect to live as long as their age peers. (I don’t think I’m doing any funny math here, but the following works for me). Statistically, the bulk of MS patients will be found toward the average (inside the bell of the bell-shaped curve for those of you who like statistics and graphs). The 10%-15% of MS patients who do not live as long as their age peers are in the population that are outliers, they are a standard deviation or two away from the norm.

Based on her symptoms to date I believe she is having an “average” experience of MS. So, to extrapolate that into the future, I think she’ll find herself well within the 85% to 90% who live as long as their age peers … with or without a wheelchair.

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