Mobility Question: Does this sound familiar?

Hi Guy's and Doll's,

I've got a question about mobility that i hope someone can answer, i'm not sure if this is as good as its going to get because its been this way for over 6months already and its not changing. I keep expecting normalcy and reality keeps hitting me up side my head!

Anyway, I can get away with looking normal (mobility wise, can't do much about the way I look normally though lol) for a few hours, if I dont do much, or walk much. I have to sit down a lot and I'm not talking about the way I get when fatigue hits, just have to rest to keep the tremors and wobbles at a lower rate. Still after about 4 hours of being awake, I still have to have a lay down, sometimes I'll sleep but i'm only doing a 'time out' because I know if I dont, I end up being a shaking, exhausted, mentally bumbling, toppling over mess by dinner time.

Now if i'm out, my window of normal is short, a lot of the time, from the car to the shop is enough. I can feel my leg starting to give out, knee not locking and i'm starting to sway and trip. It all goes down hill from there, I'm usually trying to focus of my walk, standing and not falling and when i reach for something its then I notice how much i'm shaking, the tremor is switched on and building. No joke, i'll start off walking down an isle and instead of going straight, i'm walking on a tilt to the left, wobbling and swaying and shaking as I go, A right sight that is lol.

My dh freaks at the idea of me going out alone, discourages or runs the errand for me, he doesn't want me driving and getting imobile and being alone. It'a another post about driving mishaps lol What i'm wanting to know is if this is normal, (lol you know what I mean) does anyone or everyone with mobilty issues get worse the longer they are awake, even if they havent really been using their feet much? And, does anyone or everyone with mobility issues get worse within a very short time if they are using their feet?

Cheers............JJ

[Lulu54]

JJ -
what you are describing makes perfect sense to me.  The ideal situation for all of us would be to stay asleep, where the body can use all its energy to repairing the damage.

If I understand correctly, regardless of where the damage is located in our bodies, we are constantly working to correct the deficiency.  That could be through this repairing,  or even more obvious, the compensating we do to stay upright and getting the signals to the right parts of the body.  

Our bodies are working so much harder than others just to communicate to our legs and arms and brain and so on and so on.  This hard work is just plain exhausting.

I'm able to go for hours if I can sit and work, like here on my laptop.  When I have to get up and move around I begin to feel the decline pretty fast.  The thinking is rather than give up and stop moving, we need to slowly work at using what we can in a physical way to maintain or even gain strength.

Its early morning here - I probably am making little sense because I haven't finished my first cup of tea.... sorry for the ramblings.  I hope something in here resonates with you.

be well, L

[supermum_ms]

Hey Lulu,

Yes unfortunately it all resignates with me, lol i was sort of hoping you'd say JJ thats the exact opposite of MS, silly women your nickers are too tight, buy a bigger size ROFL!

Cheers........JJ

[RedFlame]

Hi JJ,  Unfortunately, your experience is one that most of us have or will have.  I'm sorry this is the experience that you and many of us here have to go through.

I also agree with Lulu that part of our exhaustion is that our body is contantly in a place of healing.  That's what our bodies are supposed to do.  That makes us so tired, it's hard for others to understand.

take care,   Red

[MarksMS]

Hi supermum,

Your symptoms sound all too familiar to me. Since only some of my leg muscles receive the signal to move, only a few muscles are actually doing the work of moving and balancing.

These hard working muscles are easily tired, for a lot of us even a little bit of summer's heat weakens us tremendously.

Ampyra works for some MS'ers with walking problems, I'm one of those who benefit noticeably.

The longer I've been up the weaker my legs, especially if I've done too much.

These days, thanks to Ampyra I can walk from one end of my long ranch house to the other and stand while preparing breakfast.

A few years after my dx I started to use a cane or a shopping cart to stay upright. About 5 years in, I needed a scooter, a few years later I got a wheelchair for use at home.

It was very hard to start using the cane, then the scooter - I was afraid of the stigma. Turns out that I was very wrong - aside from young kids who are fascinated by the scooter, no one seems to care one way or the other. Mostly what I've noticed is the very nice way people open doors and try to aid me. Of course people are interested, it is part of being human.

I recommend you get the lightest three wheel scooter you can get your insurance company to pay for, if money is not an issue (don't we wish) there is an expensive one that weighs about 30 pounds with lithium batteries, more with batteries that can go aboard airplanes.

These scooters will fit in the trunks of Accords, Camrys, and just about every car except the real tiny ones, though I bet I could get mine into a Mini.

My scooter gives me access to the world, I've travelled to Seattle, St. Thomas, San Francisco, Portland, etc via planes, I go shopping, usually with reusable canvas totebags though you should see me pushing a shopping cart around, I go to the library, concerts, plays & museums. Not having to worry about running out of energy and falling is an enormous benefit.

Even in "big, bad" (not) NYC, people are extraordinarily helpful, the biggest problem being getting cabbies to stop for me and my scooter. I usually stand in front of it while hailing a cab, and take it in and out myself.

I hope this helps,

Mark

[Quixotic1]

Great post, Mark!

I would like to caution only that three-wheelers have a bad tipover risk (study done by AARP), so real care is needed on uneven ground.

JJ - maybe your problem is one my famous grandmother used to have:

"I'm miserable.  I'm wearing my stand up girdle and my sit down shoes."

No, what you and Lu and Mark describe is exactly what I experience.  Without a walker I list and reel sideways, then straighten up and take two steps backward.  But, with the walker I can go straight ahead.  Even so, I fatigue sooooo quickly.  I keep hoping that I will gain more stamina if I keep at it day after day.  The progress, if any, is infintessimal.

But, I usually can work for long periods seated.  I have actually become somewhat recliner-shaped.  

And that was before this disaster with my leg and ankle.  Now, I'm sure I have lost ground with stamina.  I have also lost a huge amount of muscle in that lower leg.

Good luck, but don't fight using a scooter if that is what you need.

quix

[supermum_ms]

Hey Guys,

Thanks for the responses, hmmm all good points being made, I do have a walking stick but keep forgetting to take it out with me, I start off fine so in my head i'm still expecting to be fine, I'M FINE is printed on my forehead lol DH seems to be more aware of me than I am!

I'm a bit confused about some stuff, It took me almost a year and constant reminding by my family that its not my left leg thats weird but my right, I still keep saying my left but it is my right thats still got the string puppet walk going on. Hmmmm apparently they are positive its always been my right, doh i've lost the ability to tell right from left, so i am getting dyslexic-ish lol.

Why i think i get confused is that the left will play up if I keep on going, but its more a tired plod and aching when the right is more cerebal palsy looking. My right lifts rubbery and shakes, then when i put it down for the step, and the knee doesn't lock so it makes me step to the left, or if the right knee cap locks up, i just walk in a circle whilst it hurts like a sledge hammer. I was sure it was the left that was causing the right to go weird but everyone keeps telling me its the other way around.

The left leg is what bothers me most grrrrr, buzz still daily on a spot below the knee, tight muscle calf and now i've got a tingly shivery spot on the inside of my thigh, its the left that zaps and zings all day then doesn't let me sleep at night, the right one is just silent and at its most calm. Some nights i'd cut the bloody left one off, it can drive me more nutty than usual.

I have it in my head that i should be over this by now (April 09) ive not had mobility issues happen for this long before, pssst go away already. I did think i should only have one leg playing up, well i sort of do but the left one isn't a happy chappy even if it isn't as weird as the right. But wait there's more (like buying steak knives) when I freeze, the delay is in both feet not one over the other, its like nothing is going from my brain to either of my feet, it doesn't last long but its freeky when it does happen.

Anyhoo, about the scooter idea, its not a bad one though Australia is spread out even in suburbia, so getting to the local shop is too far and hardly worth the bother, here you need transport to and from (15 to 30 minute drive) for anywhere worth going. I had to get a smaller car a few months after this rodeo started, just couldn't drive my 4WD, or get in or out of it. I bought a sporty convertible baby car, cute as a button though there isn't much room for a few bags of shopping let alone a scooter. I was going for the ooh ahhh and not the practical load em up type that i've always had lol

I am looking for something that will work for me, I'm getting four wall syndrome, I need to get out more lol

Cheers........JJ

Thanks for the ideas