Martin M. Shenkman
Traveling with MS can be a challenge. Even without a walking aid, carrying medication that should be refrigerated through airport security checks, dealing with severe fatigue— which, in accordance with Murphy’s Law, comes at the most inconvenient times--can all be pretty tough.
I have a vivid memory of the last flight
with my wife, Patti, who has MS. You know the
feeling when you and masses of people are waiting at the gate for your flight
and it is delayed 20 minutes, and another 20 minutes, and another …? Most folks
just get annoyed and buy another mocha cappuccino. But when MS fatigue hit
Pattie with a vengeance, what could I do? I could make Patti a bed using my
coat, sweatshirt and whatever. The only location for this poor excuse for a bed
was the terminal floor. So I stood over her while she rested, trying to prevent
passengers running for planes from stepping on her. A better mode of travel had
to be found.
On a drive one day the idea popped up: Let’s buy an RV. Just for perspective, we had about as much experience with an RV as Robin Williams did at the beginning of his comedy RV. While it was more of a joke than a serious plan, we went exploring. The main idea was that, if fatigue kicked in, we would have a bed available; if travel prevented obtaining food compliant with the Swank diet we follow, we would have our own kitchen on wheels. And there would be no more hassles looking for ice to keep Patti’s medicine cool, as we would have a fridge in tow. RV sales during the heart of the recession led to a deal we couldn’t refuse. The next thing we knew, we owned an RV. Next we had to figure out what to do with it!
Reading blogs, articles and more, it has become apparent to me that people living with MS and their caregivers often find solace, meaning and a means of coping by doing something proactive to help others facing similar challenges.
Heading off on our new RV journey, Patti and I wanted to make something more of our travels than just a vacation. Thus was born our private charity, RV4TheCause. As we travel, we lecture to consumers and professional advisers on estate, financial, tax and legal planning for those living with MS and other chronic illnesses. We’re assisted in this effort by a distinctive and beloved wingman, our Norfolk Terrier, Elvis, a licensed therapy dog. No one can get a group smiling like Elvis.
We opted not to limit our efforts to MS, since the challenges people with MS face are similar to those faced by people with many different chronic illnesses. Most importantly, financial planning for life with a chronic illness entails many similar modifications no matter what a person’s particular situation might be, although obviously tweaks must be made for every particular illness. To date, we’ve logged in about 15,000 miles and 35+ presentations. This spring we just logged our longest trip 6,200 miles and a month of time away from home and work from New Jersey to Las Vegas.
While not everyone can solve their travel difficulties buy purchasing an RV, you don’t have to give up the things you enjoy because MS has gotten in the way. There are little (and big) modifications you can make to your previous travel routines. In fact, I’m sure many of you have found creative solutions to your travel challenges. What tricks have you found to make traveling with a disability more enjoyable?