Cruise for a Cause - Days 1 - 3

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Day One: Old Friends, New Friends, and Of Course, Food

After months of anticipation, another MSF Cruise for Cause is at sea again! We’re heading for our first port of call, San Juan, PR aboard Royal Caribbean’s largest ship, the Freedom of the Seas, but for our group, the real reason we’re at sea is already under way.

After a “muster drill” to make sure everyone aboard knows where to go in the “unlikely event of an actual emergency,” i.e. a quick trip to the lifeboats, we got down to one of cruising’s primary attractions: the food. Seated together on the main floor of the ship’s dining room, MSF cruisers hugged, waved and exchanged greetings during an exquisite meal. Some of our cruisers and speakers have sailed together before. Others were new, and excited to just to be aboard.

After dinner, our MSF group had more time to chat, at a registration event rocked by island music. Cruisers picked up their name badges, bags filled with MSF goodies and their program guides for the trip. Then it was off to see more of what the Freedom of the Seas had in store. She is a massive ship, with food and entertainment at every turn.

Those who have never cruised before may have heard a lot of talk about rooms aboard the ship being small. Some are. Others are light-filled and beautifully appointed. Handicapped accessible rooms, even those on the ship’s interior, are quite roomy - about the size of an offering at a mid-range, landlocked, hotel. The accessible bathrooms are spacious, with grab bars near the toilet and roll-in shower. Room service is available at breakfast for those who order the night before, and around the clock for those who didn’t find enough food elsewhere on the ship (something that is hard to believe).

Once as much of the ship’s 10 floors of action had been explored Sunday night, it was time to settle down to sleep. Rocked by the gentle motion of the ship and tired by a day full of excitement, most people found that easy to do!



Day Two: Fighting Fatigue, Fighting the Disease

It’s a rocky day at sea today. Even with the ship’s massive stabilizers, we swayed our way through the day. That didn’t bother some of our MS cruisers, who joked that now the rest of us know what their world is like.

This morning kicked off our week of speakers. I think our cruisers would agree we didn’t hold back. Our inaugural speaker for this event was MSF Senior Medical Advisor Ben Thrower, who provided a through overview of drugs in the pipeline for MS. As we were chatting before the day got started, Dr. Thrower told me that he can still remember a time when any positive results from the study of a potential MS therapy was a remarkable thing. Now, suddenly, those studies are everywhere. And not just for early-stage or relapsing-remitting MS. In fact, one of the therapies Dr. Thrower mentioned works BETTER the more active the case of MS. Among the offerings is Dirucotide, now in late stages of testing in SPMS. Also reviewed were multiple oral therapies, including two that look promising to be submitted for FDA approval - Cladribine and Fingolimod. Vaccines and experimental infusions were also explored.

So many promising therapies seem to be ahead, but as Dr. Thrower reminded the group, just because something is new doesn’t mean it is right for you. If you have an MS therapy that is working well, it’s important to consider a new therapy’s risks, as well as benefits, before making a switch.

After a short break, we were on to another hot topic - fatigue. Melinda Hodgson, an occupational therapist who is part of the team from Atlanta’s Shepherd Center on board with us this year, offered common sense solutions to common problems - the kind of things that make you say, “Now why didn’t I think of that?” Standing takes a lot of energy, more than most people realize, she reminded the group. Instead of standing while doing tasks in the kitchen, lean against a bar stool, she suggested. No need for an expensive chair in the shower. Melinda said she has a client that uses a white plastic lawn chair.

It all fits in to her 5 S’s for Saving Energy:

■ Sit Down to do as much as possible.
■ Simplify and eliminate unnecessary tasks from your day.
■ Send Someone Else to do it. Delegate responsibilities at home and at work.
■ Sanity -- save yours and try to organize as much of your life and necessary tasks ahead of time.
■ Stay Cool -- Don’t forget about how simply staying cool can help you fight fatigue! (In fact, you can apply now for cooling products through the MSF at our website, www.msfocus.org.)

Our final presenter of the day, Keith McBride from BioNess, talked about another way some people can save energy. Their products for foot drop, while not covered under most insurance plans, have helped many improve their walking skills. Check out one of BioNess’s most successful patients -- as well as one of the MSF’s core group of cruisers, Jonna Spears, in this clip from the Today show: http://today.msnbc.msn.com/id/26184891/vp/28872531#28872531

When we wake up tomorrow, we’ll be just hours from San Juan, PR, but before we get off the ship, we’ll be checking in with personal trainer Jeff Segal and Shepherd Physical Therapist Candy Tefertiller!



Day Three: Day Three: Getting Physical

You’ve worked like a dog, but have you ever slept like one? Shepherd Center Physical Therapist Candy Tefertiller told cruisers this morning that when it comes to expending energy, canines have the right idea. They play, then they sleep. Play again, then sleep again.

With MS, taking frequent breaks is important, but so is staying active, she said. Whereas years ago doctors advised people with MS to conserve their energy, now we know the importance of staying active. When muscles aren’t used, they weaken. It’s not necessary to push yourself to the point of no return, though. Candy recommends keeping your physical activity at a five or six on a scale from 1 to 10, with 10 meaning that you are completely exhausted afterward. Know and recognize your own limits. Exercise doesn’t have to be running or jumping, she said. For example, the Wii Fit, developed by Nintendo as a wireless gaming system, is actually a fantastic tool for improving balance, she said. Make exercise enjoyable, do it in a group and be accountable to yourself. Fit being active into your day, and your body will reward you!

Cruisers got a chance to put that advice into action immediately after Candy’s presentation, as personal trainer Jeff Segal took the stage. As someone who has been living with MS for many years, Jeff knows what activities MS can limit -- and which ones it doesn’t. Push-ups are one the best forms of strengthening exercise, he said, and you don’t even have to get on the floor to do them. If you can stand, place your hands against the wall and push off from there, he said. Even if you must remain sitting, you can push against a wall from a seated position.

Jeff also stressed the importance of stretching and warming up a muscle ahead of exercise. Movement is the best way to warm a muscle, but did you know that placing a warm towel on a muscle can limber it up as well? Cruisers will be seeing a lot of Jeff over the next few days, and getting some personal attention, as well. He’ll be leading exercise routines in the ship’s Fitness Center Wednesday and Thursday and has volunteered to meet with other cruisers one-on-one to talk about their fitness needs. A personal trainer who really understands MS with an entire week to spend talking to you -- where else but the MSF Cruise for a Cause can you find a deal as good as that. Stay tuned. Tonight we’ll be checking out San Juan and tomorrow, on to St. Thomas!