When you are living with multiple sclerosis (MS), the thought of travel can seem overwhelming. Don’t worry, here are the best tips for travel with MS and how to avoid the mistakes I have made.

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Introduction to traveling with Multiple Sclerosis

When I finally got my MS diagnosis, I realized I had been unknowingly living and traveling with MS for many decades. During those decades, I made a lot of travel mistakes. After my diagnosis, my first “official MS travel” was to Hawai’i. So I learned how to travel with injectable medication and hiking poles.

2022: Rewritten and updated with more and current information.

Covid-19 considerations

Now that we are a few years into the pandemic, and vaccinations and treatments are available, we all are ready to travel again. Still, make sure to check the CDC website for COVID-levels at your travel destinations and follow your doctor’s advice for masking / vaccinations and boosters.

Check up-to-date COVID-19 travel advisories on the CDC web site. In addition, the State Department has country specific info on Current Outbreak of Coronavirus Disease 2019

Ten Top Tips for MS travel

At this point I have traveled with MS numerous times, visiting more than twenty countries and even more states. Therefore I know what things to watch for and what to avoid. Here are my top tips.

1. Bring more than enough medicine

Before you go on vacation, calculate how many days you will be gone and how much medication you will need. After you get that number, add a week. You never know what will happen to delay or extend the trip.

For example, when we came back from that Hawai’i trip, there was a snow storm on the East Coast and we got stuck in San Francisco for four days. Luckily, I had packed an extra week of my Copaxone shots.

Lesson learned: bring more medicine than you think you need.

If you don’t have enough medication on hand for the trip, either get your refill at home, or arrange for a refill at your destination. For example, one time I had my refill mailed to California when I found out soon before departure that I didn’t have enough.

2. Keep medication in your carry-on

Because you never know whether your checked luggage will arrive with you, keep your medication in your carry-on. This enables you to control the temperature and to assure that they won’t get lost.

Especially at this point of the pandemic, checked luggage has been seriously messed up so it is even more important to keep your medication with you at all times.

If you have medication that needs to stay cool, get an insulated travel kit for them. For example Shared Solutions provides a free travel kit for Copaxone shots.

3. Know how TSA handles medications

Check out the TSA web site for Disabilities and Medical Conditions. They ask you to inform the TSA officer that you have medically necessary liquids and/or medications and separate them from other belongings before screening begins. Also declare accessories associated with your liquid medication such as freezer packs, IV bags, pumps and syringes. Labeling these items will help facilitate the screening process.

When I traveled with Copaxone for the first time, we arrived at the airport and I held my breath while going through the TSA checkpoint. When I took my Copaxone kit out and said this is medication, the TSA officer asked whether it had any needles. Yup, it did. After he opened it, looked at it, and closed it again, he put it on the surveyor belt and that was it. Unlike this first and positive TSA experience, on consequent trips nobody opened it again, they just accepted my medication explanation.

Because they ask you to clearly label your medication, I always keep it in their original containers. In addition I had a doctor’s letter confirming that I needed these liquids to treat MS. During all my travels, nobody at TSA ever asked to see that letter, but I was still glad I had it, just in case.

Lesson learned: TSA is very reasonable about medication as long as you follow their rules.

4. TSA and Mobility Aids for MS Travel

After I had been diagnosed with MS, I started physical therapy and she recommended occasional use of mobility aids, for balance and to decrease fatigue. When she mentioned it, she advised me to use hiking poles, since that makes me look sporty instead of disabled. Also, hiking poles encourage a more upright posture than a cane does.

All was good and well, until my first MS travel. The night before my trip, I found out my hiking poles didn’t fit in my suitcase. At that point I already knew that TSA does not allow hiking poles in carry on. Oops. After I read that, I had planned to put them in my checked luggage. My mistake! Desperate web surfing disclosed that I might be able to get them through TSA if they were needed as mobility aides. I decided to go for that, but still was worried.

So I had no idea what would happen. Turns out everything was just fine. After offering me a cane if I needed it while my poles went through the x-ray machine, they let me pass. Relieved, I went through the metal detector and picked up my hiking poles at the other side. A happy experience for my first MS travel.

Lesson learned: anticipate challenges sooner than the night right before the trip.

5. Get a Doctor’s Note for Mobility Issues

After that first trip, I successfully went through many TSA check points and stopped worrying about them. Until I ran into issues while leaving Costa Rica. Their security check point people, before getting to the boarding area, objected to my hiking poles. Of course, this was after we already had checked our bags, so we assumed we couldn’t check them now. So I was preparing myself to give up my poles and getting new ones at home.

Naturally, our conversation with the checkpoint authorities was hampered by the language barrier. Although we speak some Spanish, it was hard explaining why I needed the hiking poles. Though I did have my medication doctor’s note with me, stating I had multiple sclerosis and I hoped that that would be enough. My mistake!

Plan B: Check ONE hiking pole…

After lengthy deliberations, they decided that I could take one pole on board and would have to check the other one. Frankly, that didn’t make sense to me, if two are too dangerous, wouldn’t one still be dangerous? Anyway, one of the officers accompanied me back to the check in desk, where I was able to check one hiking pole. Thankfully, Alaska Airlines did not charge me anything for this last-minute checked luggage.

After all this, we cleared the security check and had an uneventful flight home. When we got to the baggage claim area, my pole was at the “too big or too weirdly shaped items” window where I retrieved it.

Lesson learned: get a doctor’s note documenting your mobility issues! Talking to the security officers in Costa Rica we learned that a simple note would have prevented all the stress. After that trip, I got a note stating I need my poles to prevent falls. Still, I wonder whether I should translate it into Spanish as an added insurance.

6. Request assistance if you need it

At the airport, it is easy to get wheel chair assistance. It is best to request it in advance, but I have had to request it while there and that worked. One time we had a short layover in Philadelphia (because the first flight had a delay) and we had to almost run to our connecting flight. I was miserable.

When we arrived at our plane in the nick of time, the fight attendant told me I could have requested assistance IN the first air plane and they would have been there waiting for me and helped us to our connecting flight.

Lesson learned: Ask for assistance.

7. Use preliminary boarding at the gate

When I started using hiking poles for mobility, the air lines almost always offer early boarding even before I ask. It is so much more relaxed to deal with all our stuff before the other passengers arrive and it is a zoo in the aisle.

8. Do NOT overdo it

If you are like me, your optimism about your capabilities might be greater than your reality. In my mind there is so much I can do. In reality I struggle and get too hot, too tired and I end up being miserable.

No, you won’t get to see every single attraction you had hoped for. Yes, you might have to plan in rest periods at the hotel. Accept it and roll with the punches! Celebrate what you can do, and plan to come back to do the things you couldn’t do this trip.

Take an Uber, Lyft or taxi when you can’t walk anymore. Accept help if it is offered. Be realistic in your own expectations.

Lesson learned: There have been so many times I simply could not do what I wanted to do. So many trips I overestimated my ability and ended up with “embarrassing” moments like after our tour of the Vatican where our guide exclaimed “La Signora non sta bene!” (the lady is not well). Or after my attempt to do the Singapore tree walk and I had to be rescued by someone in a golf cart.

Even with all these frustrations, I still love to travel and explore, I just need to get better at accepting my limitations.

9. Stay cool!

When I didn’t know yet about my MS, I noticed that I didn’t do well in the heat. Every time I overheated even a little bit, my body had trouble walking, seeing and thinking. I would sit down and be unable to get up. While weeding in the sun, even with a hat, I got super fatigued.

After my MS diagnosis, my heat intolerance suddenly made sense. The heat affects MS-warriors and other spoonies more severely than the average person. Thus the advice to stay cool!

If you can’t stay in the air conditioning, avoid long sun exposures, stay in the shade, drink cold drinks, carry a personal fan and consider a cooling vest. In a pinch I have wet my t-shirt on a hike, to create a make-shift cooling vest, which was amazingly effective.

Lesson learned: do anything you can to stay cool. Think wet t-shirt contest 🙂

10. Have fun on your MS travel

I consider this the most important tip of all. Enjoy every moment, even when things work out differently than you imagined. Take chances, make mistakes, get messy. My MS travel has included hiking Diamond Head on Oahu, bird watching in Costa Rica, surfing in Waikiki and more. I even got to touch a whale!!!

My Favorite Travel Bloggers in Wheelchairs

Since every person with MS is different, I can only speak for myself. Although I have mobility issues, I do not need a wheel chair. So I would like to introduce you to two of my favorite travel bloggers who travel the world in a wheel chair.

Spin the Globe – Wheelchair Accessible Travel

Sylvia at Spin the Globe is in her own words “One woman. Four wheels. No Limits.” After being diagnosed with multiple sclerosis in 2005, this Air Force veteran refused to let MS define her. She has also refused to let her wheelchair confine her. Sylvia has visited 57 countries, 48 of those as a wheelchair user and 34 of those by herself.

Go visit Spin the Globe, Sylvia’s award-winning wheelchair accessible travel blog for lots of MS travel tips and inspiration.

View this post on Instagram

A post shared by Spin the Globe ♿️🚢✈️🌎 (@sylvia_longmire)

Curb Free with Cory Lee

Cory Lee shares his experience as a disabled traveler and many travel tips as well. At the age of two he was diagnosed with Spinal Muscular Atrophy but that certainly never diminished his desire to explore the world. When he was four years old, he got his first powered wheelchair and took his first trip.

Now Cory’s goal is to show you how to travel, where to travel, and most importantly, why travel as a person with a disability. Go visit Curb Free with Cory Lee.

View this post on Instagram

A post shared by Cory Lee | Wheelchair Travel Expert (@curbfreecorylee)

Summary of MS Travel Tips

During that first MS travel to Hawai’i, we arrived at the Honolulu airport all tired and cranky after two days of travel. While hiking 5,000 miles to the Uber pickup spot, I saw a majestic egret fly over. Welcoming us to her island with her aloha. Telling me “You are OK” . Indeed I was. We were in Hawai’i!

• Do have all your medications in order and with you.
• Don’t forget your doctor’s notes.
• Ask for help
• Don’t overdo it.
• Stay cool!
• and Have fun! Every day is a new adventure.

Living with MS does not need to limit your travel opportunities 🙂 At least not once the current pandemic will be over. Carpe Diem!

The clock is running. Make the most of today. Time waits for no man. Yesterday is history. Tomorrow is a mystery. Today is a gift. That’s why it is called the present.

Alice Morse Earle

Tell us about your MS travel experiences. What was your favorite trip? What was your biggest challenge? Other spoonies please reply too, a lot of MS issues are similar to other chronic illnesses.

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