Planning a Vacation with Multiple Sclerosis

Patient Expert

When living with a disease that is unpredictable and so variable, planning in general can be very difficult. Some of us who are living with MS experience a consistency and predictability that allows them to feel comfortable with decision make-ing, ticket buy-ing, non-refundable deposit-ing, and all the other commitments that come with planning a vacation. Others, not so much.

For many of us, the mere act of planning in advance is frightening and full of high expectations that can lead to serious disappointment. For most, repeated disappointment does not a seasoned traveler make, especially when the context is that of increasing limitations, constant re-thinking and advanced levels of doubt. For me, just leaving the house can be a dramatic cautionary tale.

All of these elements were sitting on my front porch when I was given an offer I couldn’t refuse: a place to stay in London, Paris and Berlin. With caution thrown to the wind, I knew what I needed to do. Hello, GoogleTraversing the Atlantic (and the unknown)

The first stop on my “better-safe-than-sorry-palooza” was booking the flight. A level of forethought can make the airport experience less terminal. First step is all about the seat assignment. When booking the flight tell them that you are a person with “above average challenges.” (Nice spin, right?!)  It’s amazing what an airline representative will do to help a person, once they know there is a good reason to do so.  After telling the agent those details, request the bulkhead--not for the legroom, which is a perk--but also for the ability to get in the first seat and avoid the stumbling that incurs when moving down the narrow aisle - even when it’s before all the other sheep. (With all due respect for the everyday traveler, of course!)  Be sure to mention that you will be bringing (insert mobility device here) and that you want an escort to the gate. Which brings me to the next VID (very important decision).

To chair or not to chair - That is not a question.

Even when you have no choice but to take an escort to the airport gate, it can be an emotional process. So when people with MS are capable of walking, it can be an indignant statement to refuse the chair in spite of the fact it could make their life a lot easier.  Being at the airport is a stressful time for most, so grappling with emotional decisions is a good thing to set in motion (as it were) in advance of your arrival.

For me, a person with very limited walking ability, it’s not a choice, but that doesn’t always prevent me from the little-engine-that-could approach. Being that Newark Liberty is my airport of choice (maybe choice isn’t the word…) it is no exaggeration to say that the miles from terminal to gate are completely undoable for me, even without anything else in tow.  In spite of this, I still have to kick myself in the tuchus (no easy accomplishment with all of these balance issues!) to remind me that it’s well worth it every single time I fly.

By planning this default in advance, I can use my emotional energy for the other challenges of air travel that are no doubt imminent. And as the rolling pack mule, I can play a helpful role in carrying the cumbersome stuff that no one seems to have the extra hands to carry. (And that never happens!) Of course a more obvious plus when traveling with me is when we bypass the line for security and exchange “ha-ha, ha-ha-ha” glances with those waiting impatiently for their adventures in sheepherding that have only just begun.

Clearing the path

Starting your travel adventures with these considerations in mind not only makes it easier to cope with challenges, but also gives others around you an opportunity to take pause and treat you with the respect that anyone (even those who move more easily) deserve. If that fails, I always have my back-up walking stick as an excellent way to “clear the path” for all those who don’t fall in to the considerate category. And by planning in advance, I can use my emotional energy to tackle other challenges of travel that are no doubt imminent.

Tune in next time for more on my European destinations with all that they have, or don’t have, to make life easier for peeps like us.  ;)


Transparency: I'm not planning my trip. I'm in London going over our family tree with my cousins. But it looks like a great planning pic, doesn't it?

Check out my other summer travel posts here:


Summer Vacationing with MS- Pt 1

And the ever knowledgable Lisa Emrich's post about MS in the Summer.