Wednesday, June 6, 2012

Traveling with MS – A Surprising Turn

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?


  1. I tried earlier to respond to this, but I lost it in "internet space." I wanted to tell you how much I enjoyed reading about your solutions to making travel more enjoyable. Unfortunately, we are not at a point where we can afford to buy an RV. It would be perfect, I think, to have one of those and take along our Goldendoodle (Alfred) on trips. We usually go during Mem. Day week for a scheduled timeshare, but opted to skip it this year; oldest child completing elementary school and moving on to middle school next year. Couldn't see exchanging his 5th grade trip and Activities Day for a family trip.
    I would love to hear more about your financial advising. We are currently living in a split level (unfortunately has kept me from obtaining a power chair via insurance). We need to find a one-level home in the same school district or a lot to build on. However, we are at that awkward stage where we are still mostly paying interest on our mortgage. Hoping to schedule a trip with extended family to India in Dec. 2013, but not sure how to manage the heat and/or getting around.
    Thanks for sharing how you turned travel to your advantage AND to the advantage of others. :-)

    1. Yes Will Robinson I'm well familiar with the episode of “Lost in internet Space.”

      Glad some of our travel solutions were helpful. For non-RV travel (which we try to avoid) we so far have stuck with car travel as airplane traveling was just too unpleasant. We recently stayed at a Comfort Inn which was totally accessible and had a number of well designed accessible rooms on the first floor. The hotel staff was pleasant an accommodating. They provided a refrigerator in the room at no charge for food and medicine. Even their hotel breakfast (included) had some SWANK diet friendly offerings. And yes, the Comfort Inn was pooch friendly and Elvis had a great time.

      As for buying an RV, you can start with a used one, and even a pop-up camper you can tow with almost any family car. They are generally very reasonable, but with the tough economy for so many years, I suspect you could find an incredible deal on a used one. That is how many people first get their toe into the RV world. The kids will love it and in contrast to any other form of travel you can control most of your environment to have what you need (well, everything but the weather). We found it a challenge at first. But after a few trips we were able to figure out most of what we needed and how to work most of the stuff. Once we reached that point it was incredibly relaxing. It was and is great to know that anything you’re likely to need you have with you.

      As to financial advising I’m really an estate planner. The Financial Services Professionals (“FSP”) has an incredible program for the National MS Society where they provide free financial counseling for those that cannot afford an adviser. If you can afford an adviser they are a great place to start. 19 Campus Blvd, Suite 100, Newtown Square, PA 19073-3239. Their phone number is (800) 927-2427 or you can check their website to find an adviser near you.

      I cannot really give any type of professional advice on line and it would be pretty useless without real background.

      We have posted a lot of materials to our free planning website (or If there are things we should add let us know. We are in the process of completely rebuilding the site and will have much more to offer soon.

      Good luck.

      Martin M. Shenkman