neuros are really pushing for us to get alot of exercise

[emily06]

no salsa dancing

My ride to the salsa class didn't show up. That's how my life is. I don't get to do much of anything I want to because I can't get out on my own. I have to rely on other people. And I'm always disappointed.
I was really nervous about taking the class since I have a hard time staying standing to just walk so I was afraid it wouldn't have gone well anyway. Oh well. That's that.

[lorib]

I'm sorry, Emily! That is disappointing. Other people don't understand what it's like to be in your position. They don't know what it's like to not be able to jump in the car and go where ever they need to.

If you have a computer at home you can always watch beginner salsa moves or zumba exercises on your computer (youtube). Granted, it's kind of weird to use your computer like a TV when you're exercising but sometimes we have to do what we have to do! I've used my laptop to play some of my workout dvds when I was away from home over the summer!

Plus, this will let you try the exercises to see how your stamina is in the comfort of your own home! I personally love workout dvds that I can do at home. Probably because I look silly doing them but that's okay if no one is there to watch!

[palmtree]

I'm sorry your ride didn't show up. You didn't get to even find out whether you like it or not. I used to love Salsa dancing. Then I gave it up because I was falling over when the guys turned me and they laughed at me. I kept practicing harder so I could turn like everyone else. I had no idea I had MS.

Then, after my dx, the first thing of on my bucket list was to go dancing again before I couldn't anymore. I signed up for a beginning b class with the university. The guys who were just learning bored me. Then I found a pre med student who was really good. I told him I had MS but not to hold back. He was turning me in all directions and I was falling and we were laughing. But then, I collapsed on the floor from the heat. It was January but it was inside. Normal room temperature is TOO hot for me to exercise. The guy was really scared and got me water which I poured over me.

I accomplished my bucket list and never returned.

The fatigue has been an insurmountable barrier for me to exercise. I regret that I didn't try harder because, now, I think I've reach appoint of no return. I'm having trouble standing straight because the muscles in my torso are too weak. When I try to do some sit ups I get winded after three.

I still go swimming once in awhile. It's an exercise where you don't get hot and I just tell myself I'm getting in the water with no goals of accomplishing anything. Then, I'm able to swim a few laps,rest, then swim a few more. It's better than nothing. But to brave the grocery store after that ouch

[MSW1963]

Neuro's are disconnected from the reality and experiences of their patients with fatigue, cognitive and mobility issues and the degree to which the limitations affect their patients.

The effort it takes just to prepare for, travel to and show up for the doc appointment is exhausting, or getting through the suppermarket when the cubbards are bare, that diminish the possibility of any kind of activity for the remainder of the day.

Hearing my doc say 'exercise', I drawn a complete blank as to just how I'm going to do that when overwhelmed with fatigue and mobility limitations. I'm sure there are known techniques, but are those only available to elite athletes, or those with access to MS specialist PTs? The non-ms PTs I've seen were clueless and at a loss as to the extent of all my 'issues' or how to address them.

On the other hand, I'm accutely aware of the toll the lack of physical activity is having on my over all health and wellbeing, to the extent that I'm concerned.

I do think doc's should do much better for patients by providing info to patients, such as recommendations for exercises and physical activity, web sites with MS exercise routines, even printed instructions and illustration for recommended exercise in the form of a RX, 10 repititions, 3x daily, increase/decrease as needed.

I'd love a referral to a MS PT specialist, but they're in high demand, not easily accessed and minimally covered by my insurance plan.