I want to share a success story that hopefully others can benefit from. I was previously very active/athletic. I played sports and loved competing. I haven't been able to run/walk/bike meaningfully for last 15 years since MS. Cardio was not feasible due to fatigue, heat, and balance. My MS is progressive and I was diagnosed 18 years ago. I still lift weights regularly and practice yoga, but no cardio.... Until a few months ago.
Our gym has ellipticals and has a rope resistance machine with a seat. I chose them because both involved large muscle groups, didn't require balance and the rope machine had a seat. I figured I could do some amount so started with 5 minutes on each one. Then I built up gradually to 5-6 sets of each per session. I rested 3-4 minutes between each set to manage temp and fatigue. I also brought ice water to drink, took 2 aspirin ahead of workout, and wet my shirt in cold water to promote cooling/evaporation since I don't really sweat anymore. I also eat 1/2 peanut butter sandwich before leaving for the gym. This was all very helpful. If my shirt dries out, I go back to the bathroom and re-soak it. Each week I tried to increase another 15 seconds(so, 5min, 5:15, 5:30, ...). Yesterday I did 6 9-minute sets of each (rope and elliptical). I keep my heart rate at 60-85% of max ( at 52 years old, that's 100-140 beats/min). It's a strenuous workout and I'd recommend that you plan for it. I usually take it pretty easy afterwards on days that I exercise. I'd also recommend that you start slowly and increase gradually, even if you feel good. Building cardio takes time. Of course, I still also do my daily shots. I'm committed to training like an athlete because I can't bear to lose anymore.
I've lost 10-15 pounds of fat and my legs and core have gained strength and muscle. I am working out 3-4 times per week allowing at least one rest day and stretching/yoga/golf practice on off days. This is a very challenging workout and now takes me 3 hours at the gym including breaks. However, I have noticed numerous other benefits. My bladder function and sexual function are improved. My sleep is better. I'm hopeful and excited to see where this leads. It's so rare with MS that anything physical actually improves.
I'd love to hear if others have similar stories or feedback if you try something like this.
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I thought it might be instructive to give a clearer picture of my initial and current states so you could extrapolate to your situation. Clearly, MS symptoms and progression are individual, but I'd want to know this info. You're never going to meet me so I'm going to be descriptive.
Initial State
52 yr old male, 5'10", 205 lbs, diagnosed in 2000, otherwise good health
Bladder - Go through 6 Depends/day. 3 at night and 3 during day. Use cranberry pills to mostly fight off UTIs.
Sexual function - Need multiple Viagra and grapefruit juice with mixed results. No random erections.
Mobility - Can walk maybe 1/4 mile at a time, but avoid stairs. Always use railings. Random toe drop. Spasticity. Balance issues. If I walk 1/4 mile, am subject to tripping/falling.
Heat - No longer sweat except for feet. Fatigue if I overheat. Sensitive to sun.
Cognitive - Was a technology and finance person until layoff this year. Good at puzzles(crossword, sudoko, kenken), intermediate Bridge player, learning French, good at Jeopardy/trivia.
Exercise - Weightlifting, Yoga stretching, Golf with cart
Sleep - Wake up 2-3x / night to use bathroom. Typically 7-8 hours.
Diet - Mostly fruits and vegetables. 0-3 servings of fish, eggs, rarely meat per week. Wine or a Manhattan 2-5/week. Low cholesterol/trigs.
Attitude - Pretty good. Good social network. Bit of no job stress, but considering retirement.
Current state after 3 months - 192 lbs
Bladder - Go through 3-5 Depends/day. 1-2 at night and 2-3 during day. Use cranberry pills to mostly fight off UTIs.
Sexual function - Random erections. 2-3x/week.
Mobility - Better on stairs. Haven't tried to go farther yet.
Heat - Not aware of a change yet. Planning to lose more body fat to mitigate heat impact.
Cognitive - Not aware of a change.
Exercise - Routine above 3x/week, Weightlifting 1x/week, Yoga stretching, Golf with cart
Sleep - Wake up 1x / night to use bathroom. Typically 8-9 hours.
Diet - No change.
Attitude - More optimistic/hopeful. Jazzed about progress. Still no job.
Our gym has ellipticals and has a rope resistance machine with a seat. I chose them because both involved large muscle groups, didn't require balance and the rope machine had a seat. I figured I could do some amount so started with 5 minutes on each one. Then I built up gradually to 5-6 sets of each per session. I rested 3-4 minutes between each set to manage temp and fatigue. I also brought ice water to drink, took 2 aspirin ahead of workout, and wet my shirt in cold water to promote cooling/evaporation since I don't really sweat anymore. I also eat 1/2 peanut butter sandwich before leaving for the gym. This was all very helpful. If my shirt dries out, I go back to the bathroom and re-soak it. Each week I tried to increase another 15 seconds(so, 5min, 5:15, 5:30, ...). Yesterday I did 6 9-minute sets of each (rope and elliptical). I keep my heart rate at 60-85% of max ( at 52 years old, that's 100-140 beats/min). It's a strenuous workout and I'd recommend that you plan for it. I usually take it pretty easy afterwards on days that I exercise. I'd also recommend that you start slowly and increase gradually, even if you feel good. Building cardio takes time. Of course, I still also do my daily shots. I'm committed to training like an athlete because I can't bear to lose anymore.
I've lost 10-15 pounds of fat and my legs and core have gained strength and muscle. I am working out 3-4 times per week allowing at least one rest day and stretching/yoga/golf practice on off days. This is a very challenging workout and now takes me 3 hours at the gym including breaks. However, I have noticed numerous other benefits. My bladder function and sexual function are improved. My sleep is better. I'm hopeful and excited to see where this leads. It's so rare with MS that anything physical actually improves.
I'd love to hear if others have similar stories or feedback if you try something like this.
****
I thought it might be instructive to give a clearer picture of my initial and current states so you could extrapolate to your situation. Clearly, MS symptoms and progression are individual, but I'd want to know this info. You're never going to meet me so I'm going to be descriptive.
Initial State
52 yr old male, 5'10", 205 lbs, diagnosed in 2000, otherwise good health
Bladder - Go through 6 Depends/day. 3 at night and 3 during day. Use cranberry pills to mostly fight off UTIs.
Sexual function - Need multiple Viagra and grapefruit juice with mixed results. No random erections.
Mobility - Can walk maybe 1/4 mile at a time, but avoid stairs. Always use railings. Random toe drop. Spasticity. Balance issues. If I walk 1/4 mile, am subject to tripping/falling.
Heat - No longer sweat except for feet. Fatigue if I overheat. Sensitive to sun.
Cognitive - Was a technology and finance person until layoff this year. Good at puzzles(crossword, sudoko, kenken), intermediate Bridge player, learning French, good at Jeopardy/trivia.
Exercise - Weightlifting, Yoga stretching, Golf with cart
Sleep - Wake up 2-3x / night to use bathroom. Typically 7-8 hours.
Diet - Mostly fruits and vegetables. 0-3 servings of fish, eggs, rarely meat per week. Wine or a Manhattan 2-5/week. Low cholesterol/trigs.
Attitude - Pretty good. Good social network. Bit of no job stress, but considering retirement.
Current state after 3 months - 192 lbs
Bladder - Go through 3-5 Depends/day. 1-2 at night and 2-3 during day. Use cranberry pills to mostly fight off UTIs.
Sexual function - Random erections. 2-3x/week.
Mobility - Better on stairs. Haven't tried to go farther yet.
Heat - Not aware of a change yet. Planning to lose more body fat to mitigate heat impact.
Cognitive - Not aware of a change.
Exercise - Routine above 3x/week, Weightlifting 1x/week, Yoga stretching, Golf with cart
Sleep - Wake up 1x / night to use bathroom. Typically 8-9 hours.
Diet - No change.
Attitude - More optimistic/hopeful. Jazzed about progress. Still no job.
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