I was doing P90X 6 days a week, an hour a day before my diagnosis in 2010. I went to PT for 4 months - last Sept thru Dec. Now I'm in PT again and OT since April. They are stopping my PT because I'm not progressing. My muscle strength in my legs, ankles, & hips is only 2-3 out of 5. I did the 6 min walk test and my time is about that of a 75 yr old.
When we walk from our house to the park and back (which is completely flat), my legs start fatiguing about 10-15 minutes in, where I start walking really slow. My legs feel so heavy and like they're lead (esp on my right side). If there's a hill involved, I'm done. Not sure if I could walk for 30 minutes...I don't think I can walk for that long at all.
The core temp thing is definately a factor, but I don't think it is the root cause. I have the same issue in the dead of winter. I have used all manor of cooling aids, including the $400 very stylish cooling vest I now use. If this weren't something I could put a clock to, measure, I would be tempted to pretend it wasn't happening :-)
Thunderbirds-R-US lol just call me Lady Penelope and i'll call you Brains :D
Hey just a thought.....whilst i'm freezing my little touchie over my side of the world, over your way hasn't your environment been heating up over the last 6 weeks or so? Could your core temp be more of an issue now it's warmer all the time, actually be higher than your aware of?
I'm a summer girl at heart and as soon as the weather starts warming, enforced hibernation is over and i want out out out lol I definitely run out of umpf faster and pay a bigger price in warmer temperatures, so worth thinking of cooling.
"I also have the fear that if don't push I will hasten the loss of mobility" er um well truth be told, you've got to get that thought right out of your head because it will not be helping, if what it's doing is driving you to push your self beyond your realistic limit!
Penelope.......
The marionette thing is perfect for the way my legs feel. They are herky jerky once fatigued. I'm waiting for the string to lift my foot, and it doesn't. I also have the fear that if don't push I will hasten the loss of mobility. But after 6 weeks, with little improvement, I think that fear will keep me pushing.
FInding the balance between too much and not enought, that's the tricky part :-)
I've been averaging a 30-45min physical activity window, ever since my big bang of 09 and i still feel weird including 'walking' in that. Pushing beyond and my communication buggers up, balance, puppet walking, hand control and tremor ramps up etc lol i'm basically forced to focus on trying to control my legs and just staying up right, oh and my recovery time over doubles once general fatigue kicks in too.
Everyone has their own activity window where they are their personal good, it's a balancing act before they reach their tipping point and like a row of domino's, pushing beyond sets them off into pseudo territory and enforced recovery. I think the hardest lesson i've had to learn, is that every thing to do with exercising, building muscle and strength that I know, just doesn't apply.
'Repetition' will always make me lose'em......the more you do, pushing your zone, work through the burn, one more rep, yadda yadda yadda is basically all BS for me and it's more about truly understanding my physical reality and being smart-er with my domino's :D
I've found that my various sand weights help, probably because i start off wearing my smallest, wearing them 24/7 until i'm no longer feel their weight at all as i go about my day and do my flexibility routine, then i move on to the slightly heavier ones etc I honestly don't think i'll get more out of me than what i've got, lol i've played around looking for my holy grail for years, i just know it gives me 'some' benefits when the goings good.
May be it's that little something that lets me hang on, keeping me mobile for a little longer....
Hugs..........JJ
I do not snap back the next day like I used to.
Alex
They basiclly stop listening. I can bare control picking my feet up and putting them down. It's sit or be sat :-)
What's the deficit with the legs? Are you having weakness in specific areas, or is it general fatigue?
I find that there is a direct relationship between level of exhaustion and time needed to recover. If I over do it it takes much longer to recover than if I stp just short of exhaustion
I had to go back to PT because my walking has gotten so much slower and less. Now I am doing exercises in an out door pool. My only problem with that is my legs buckling and smacking my backside on the cement. She told me not to push until I am tired. That does not make me happy.
Alex