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  1. #1
    Distinguished Community Member Sunshine's Avatar
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    Default Keep Moving check in

    This is s place to document your efforts at moving around and its challenges.

    Today I swam 20 minutes 600 Yards.

    Itís a challenge. I wear neoprene booties to keep feet elevated which lowers chance of foot and leg spasms. In the winter I wear a full neoprene suit for warmth. Getting it off while wet can trigger midriff and foot and shins spasms. The walk to and from the car to pool to locker room is a real challenge.

    On swim day, canít do much of anything else and lay low to recover at home.

    I used to swim an hour a day. That ship sailed.

    Canít walk for aerobic. Only the water is tolerable for aerobic exercise.

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    Distinguished Community Member Sunshine's Avatar
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    Today was an ocean day for surfing, well SPS has made surfing pretty beginnerish. It’s an exercise in tamping down fear of spasms in the ocean, fear of locking up in a wipeout, fear of fear.

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    Distinguished Community Member Sunshine's Avatar
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    It was a chilly 65į out with a 22 mph wind today. This stiff person syndrome makes it hard for me to tolerate being wet and cold, so it took determination to decide I was going to try to swim when I heard the pool was 80į.

    I break each swim into steps and then coach myself and praise myself for bravery in light of the fact that I could spasm and at any minute in the pool

    So, when I started to put on my swim clothes at home I praised myself for having the courage to even think about going even if I didnít get in the pool. When I showed up at the pool I praised myself for getting out of the car and taking a look at the conditions.

    When I slid into the water a praise myself for having the courage of doing that knowing I could spasm in the water. And so I continued in that fashion of coaching.

    With stiff person syndrome itís a fine balance of noticing when the muscles are starting to tense and when one should stop and rest so that they will not go into a spasm as opposed to continue on with the hunch that they will tense up but not spasm. Certainly it was that way when I swim.

    So I reached 700 yards in the pool which took 20 minutes. Stiff person syndrome has resulted in being deconditioned so I value being able to swim.
    Last edited by Sunshine; 01-15-2018 at 11:26 AM.

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    Distinguished Community Member Sunshine's Avatar
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    Today I reached 1/2 mile in the pool swimming freestyle. I could feel the thigh muscle stiffening, and finally stopped at 1/2 mile when the leg began to have rubbery feelings. Also having MS means the arms weaken out after 1/8 mile,

    Today was the first day I began to worry my leg would lock up walking to the locker room. But it didnt. Thankfully!

    While there i spoke to the mgr about how to make the locker room better for handicapped swimmers who do not use a wheelchair. And the parking lot.

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    Today I swam 1/2 mile again in an 80F pool, air twas mo 68f.

    As I was sitting under the shower, trying to take off the wetsuit, got that familiar feeling in the right lower leg that it was thinking of spasm.

    Oh dear, that would not do. I was 20 steps from my emergency med and cell. Really didn’t want to have to scream. So I skipped the shower, walked to the bench, sat down and told myself to stop shivering as it was tensing up the leg.

    Was able to pull off the wetsuit over the leg without triggering a spasm.

    Gotta figure out this wetsuit problem, it’s the sticking point in winter swimming.

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    Too cold to swim today as it’s @40F outside. Might just lift weights with arms. Doc said it might help with infusions to keep veins healthy.

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    I lifted weights today. And tried to not lie down. Did pretty well on both.

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    Yesterday I went to the ocean with my support crew.usually I use the wheelchair to get down the boardwalk and dunes.

    I walked with my surf board under arm the whole way:@ a 3 minute walk. Since it was just too darn cold to get wet, I had extra muscle performance available and was able to walk unassisted the 3 minutes back. It felt like a victory. Usually the only exercise I can tolerate is in a pool or ocean. Walking more than a minute typically is not going to work.

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    Today I swam in th pool only 550 Yards, 14 minutes. I had left something in the car and thus had to walk an extra minute befor swimming. At 525 Yards, my thigh muscle started to stiffen, so I stopped to avoid a Stiff Person Syndrome crisis.

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    I swam 700 Yards today in 22 minutes. I stopped when the thigh muscle started to clench. I worry it will suddenly quit and I will fall during the day.

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