Category Archives: Exercise for the sick

Exercise for the sick, family time, family vacation, MS, MS progression, MS travel, Multiple Sclerosis, Tysabri, Uncategorized, when kids won't sleep

Double Rainbow Days

On some days, a single rainbow just doesn't say enough. This day ordered a double.
On some days, a single rainbow just doesn’t say enough. This day ordered a double.

This past week, my family and I went to Jamaica, to FDR which is our favorite family resort (for what it worth, TripAdviser.com has had them as the top family destination in Jamaica for years). For a family with medically fragile children, this place is a life line. Their nannies take excellent care of the medical and non medical children, and the resort is the perfect size. It’s big enough the parents can do things without the kids and small enough parents and kids can find each other whenever needed. We went last year, and we could not wait to get back this year. It’s the land of double rainbows where the pots of gold are smiles and free moments with spouses.

We were a little worried when the passport request for K was denied 12 days before we were to leave. However, the Maryland Department Social Services (DSS) office in Baltimore city came through in spades. We called our worker when we got the package returned to us Saturday. Sunday she came to our house and picked up the package. Monday afternoon, she brought the package back to us with the requested paperwork signed by a judge and notarized and other paperwork approved by DSS lawyers to meet the requirements of the State Department’s letter refusing the first application. For all many rightly bemoan bureaucracy, Baltimore DSS did well by us to get the passport reapplication accomplished quickly.

When I look back, I cringe thinking how much K would have missed out. She had her own nanny on the trip, and she thrived. People were amazed after the first day whenever we said she had problems seeing. We all watched as the first day we had to tell her “step” whenever there was one upcoming, but she quickly memorized the place and took off. She loved the pools, the beach, and even the water-slide. Watching her go from scared of sand to crying whenever it was time to go back to the room was a joy. I have never seen her so happy.

As for the rest of us, we got what we wanted too. Whether it was A getting a group of adults (the nannies) to play Parcheesi, O getting to hunt hermit crabs and play Foosball, or J and I getting to have quiet dinners alone to reconnect, we all got a much needed break.

That’s not to say there weren’t bumps along the way. When are there not? I can not for the life of me explain why A loved the water slide on alternating days with fear being the dominant emotion every other day. I still have no idea from where our kids drew their limitless energy rejecting sleep half the nights there.

However, the good days were so good, and the ability to rest and relax let me enjoy physical activity levels I have not had in years. When a day can start pushing K on a 5k run through the hills followed by a longer bike ride after breakfast, then some thing is going well. To have both of those things not tire me out for the rest of the days activities is an awesome testament to the value of the workouts I do most days at work and the efficacy of Tysabri thus far in controlling the physical symptom progression of my MS.

I liked our date dinners on pier. J and I rarely get time to go out alone. Thank you FDR.
I liked our date dinners on pier. J and I rarely get time to go out alone. Thank you FDR.

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dog picture, Exercise for the sick, family picture, half marathon, MS, running, self confidence

Never Slow Down…Never Grow Old

There is a phrase I’ve heard many times when it comes to finding the ideal diet or workout, and I still find it true to the point where I chuckle every time I see an ad or commercial for a new miracle diet or exercise plan.  I believe the truth is in the quote, “The best diet/exercise plan is the one you will actually follow.”  It would seem to go without saying, but invariably there will be people who think the biggest loser lifestyle is for them…right up until lunch of the second or third day or even week.  It’s only the lifestyle changes which work.
Twenty months ago, I was 242 pounds on a work trip to Guam and CNMI.  During the first stop in Guam, I tried to run a mile despite all the hills surrounding our hotel.  With a lot of walking, I finished in just over fourteen and a half minutes, and I felt like death.  I was surprised because I have taken the stairs at work to the 6th floor where my desk is four or five times a day for years.  
Taking the stairs was my silent rebellion against the leg weakness I felt creeping in from my MS.  Having played 20 years of soccer, I had been able to leg press the stack of weights since college.  So I convinced myself if MS was to steal 3% of my strength, maybe climbing 120 stairs a day would slow the progression to 1% a year.  I was actually sprinting up them to the 8th floor every morning…and yet here I was trying to run a mile and having a lot of difficulty.
I’ve always thought my self an athlete, not a jock.  An athlete is one with enough physical ability and enough awareness to be able to learn to compete in any sport.  It was always a point of pride for me to be amongst the first chosen in any physical education event and still be the same guy who plays chess on days when there was no soccer or basketball.  As somebody who thinks themselves an athlete and has played soccer for 20 years, not being able to run a mile was unacceptable even with it being a mile of hills.  I know there will come a day when MS makes me accept it, but the day has not yet come.
So twenty months later, I ran two miles in 14 minutes 22 seconds.  This weekend, I will try to run a half marathon, a goal I had on my bucket list created during the process of being diagnosed with MS.  I had almost given up on the goal as the only cardio I could really do was row on my concept 2.  My balance was so bad I fell often, and I decided it was far better to fall 6 inches and get back on it rather than run and fall.  Alas, the rowing comes back to the first point of the best exercise plan is the one followed.  It became too much trouble to clear a spot, take out the rowing machine, work out, and then put everything back.  I just wasn’t doing it often enough.  Hence, between that and steroids for flares, my weight went from 202 when married to 242 lbs.   
Now as I prepare for this weekend, I’ve come to realize whether I accomplish my half marathon goal this weekend or a future one, the exercise plan of training for it has been the best one for me.  Twenty months later, I am back to 195 lbs.  I have far more energy, and I’ve found the running has helped with the spasticity in my legs and back.  I still fall some if I move my head quickly or go from standing to sitting too quickly once I am warmed up during my runs.  Most of the falling though is from fleeting blindness, and I’ve gotten pretty good at training myself not to trigger it.
 Succeed or fail this weekend, I’ve already won.  While I know my body image isn’t what determines my success, the me I see in the mirror is one I appreciate more.  While not quite a source of self confidence, at least I no longer feel as betrayed by the body I see in the mirror.  The images above and below show how I measure my success, but still I look at the pictures I took of myself in the mirror at the hotel in Guam after the run when I need to motivate myself to run.  It’s a plan I follow, and what I originally had as an end point will likely be just another milestone.

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