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notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,605
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
City
Orlando
Hi Guys,

I'm having some problems with increased spasticity and cramps again, and with my other meds, don't really want to increase the baclofen.

For the last ten days or so, I've been taking daily walks with my daughter. It seems to help a bit, at least short term, but I was wondering if it's safe to walk like I am or if it will ultimately make my UMN issues worse?

I always use my rollater walker when we go, and, of course, my 02 tank.

I tried some strength training for my arms, as I can no longer lift my mug to my mouth, but even using resistance bands, I ended up tearing a muscle apparently, as i had a literally 5 inch across bruise and lump on my bicep by that night. It started smaller, but kept growing til it was huge.

What are some safe ways to maintain the little strength I have left in my arms? I felt no discomfort when I was using the bands. Trying to just work my hands and lower arms causes too severe of cramps and spasms.

I'm adapting to the new me, but I want to try to get otherwise healthy, so don't want to give up the walks if I don't have to. After a week, I'm not getting too short of breath if I go very slowly and use the 02, though my sats drop quite a bit if I try to lessen the 02.

I'm overweight, and I can't help but think I'd have less pain and cramps if I can exercise and get in shape.

One huge benefit has been I've lost a a pants size already.

Also, do any of you notice a complete loss of appetite if you exercise? I try to drink more water, but it makes me very nauseated.
 
You won't worsen your upper motor neurons by exercise. As you discovered with the arm exercises though, if you are capped out on what your nerves are giving your muscle, there can be stark mechanical difficulties and damage. Since you can't directly make the affected muscle groups stronger, you are somewhat limited to strengthening other muscles that can support them. Even one PT visit can be helpful to get a list of such exercises from them, but they need to have at least a little SCI experience.

My biggest regret was the amount of arthritis I foisted on myself. It just feels dumb being a full time wheel chair user who's in 24/7 hip and knee pain. So do be careful!

By the time I would have wanted gentle arm exercise, I got plenty from pushing my wheelchair and doing transfers, but I have seen on offer a table mounted handcycle thing - sort of a stationary bike, but for the arms of a disabled person. Perhaps one of those rigs would let you get some gentle arm exercise?
 
Thanks, Beky

I just decided I had to try something other than the shots the doctor keeps wanting to foist off on me. As long as it's safe, I'll keep doing what I am.

We put a used exercise bike on layaway, so in two months I'll get it. It's one with a real chair, as I can't sit up anymore on a bike seat. A real bike is out. My arms are too weak to control my walker safely.

Thanks again. I've even started taking vitamins, including some to build bone strength.

My daughter working with me is helping in the motivation range.

We went to WalMart for some groceries yesterday. An hour there darn near did me in, but I can walk around the block with little effort if I remember the o2.

My hazard is humidity, and my shortness of breath is very bad still. I'm hoping it improves.
 
Patty -

I don't know enough about anything to help - but when water causes nausea - I find that mineral water, for me, is tolerable. They sell carbonating machines on EBay - and they're easy to use and it's much cheaper to buy than Perrier or the like.

Wish I could do more to be of assistance- for me I can walk a long long time - but one trip to the mall - even a short one - just tires me out Big Time! Oppressive fatigue, the likes of which I never had, even after running a marathon! Must be the sauntering or crowds or stale air... but I avoid shopping malls and big box stores whenever I can. My PT told me on Monday, that "job 1" is energy conservation and she absolutely said no strength training (weight lifting etc) whatsoever. She showed me a lot of stretching and range of motion exercises instead.
 
Just popped in to add this - morale matters! Psychology matters a lot to our day to day feeling (though not progression). Doing things outdoors, in the sun, is good for most people's mental health. You may be getting a lot more out of that walk than just the exercise. I even find that sometimes doing something I know is not the best idea for my joints is necessary for winning the morale war, and that enables me to stay in the fight. (I similarly cheat my gastroparesis sometimes and eat a tasty vegetable based dish, sometimes the psychological boost lets me eat more tommorow than I would have otherwise. My friend made the most sublime ratatouille.)
 
Beky what do you do for gastroparesis? They won't let me take reglan anymore for it. Doc said I'd been on it too many years and that it had too many side effects.

I do think my walks are helping, if only mentally. I feel better and my blood pressure is a bit lower.

My arms are getting bad, though. My right arm is getting a lot worse very quickly and I'm not sure why. I couldn't lift a jug of water today to fill my water bottle, which upset me.

Im down to only being able to use the iPad almost exclusively now, which sucks for a writer. I can't write a novel on it. I'm going to try to use the netbook. I've burned my leg trying to use the laptop.
 
I'm not really sure I "do" anything for gastroparesis these days except stare at that minimum calorie count like the end of a marathon every day. Between the swallowing problems and the gastro, what I can eat and exactly what form I can eat it in is pretty restricted, and obviously with gastro it's not like I'm hungry. I just have to force 1200 calories, day in, day out. I make home made stocks to put in food to help with the malnutrition aspect, and take an adult's chewable multivitamin. Things on the other end are important, too, keeping my bowel program religiously, though I don't think that would be true for someone without spastic bowel.

I have a vitamix, so the question isn't "will it blend?" so much as "how nauseating will it be after I blend it?" I start each day with a knockoff of Ensure Plus (though, ironically, it's actually better textured than Ensure plus).

Overall it's just kind of a gruelling fight - much worse for me than HSP/PLS ever was. I can adapt to being disabled, I'm pretty much a pro at that by now, but it's hard to look at and endless future of this. I hope it wanes again (it did last summer) and gives me a vacation, because otherwise my morale is going to be worn down again.
 
becky...aftr my recent blood check my doc has booked me in to see a rheumatlogist....how come thats in the frame after all this time.....does it relate , in your experience, to umn stuff....hopes u dont mind me picking your brains ...johnny
 
Beky, what did they say caused your gastroparesis? They have always assumed mine was from diabetes. The main issues it's caused me is severe nausea when I eat and intentional garbage I wont bother detailing. Is it really part of this whole whatever is going on with me? I never considered they could be connected.

Now, I'm taking phenegran to combat the nausea part.
 
Johnny - PLS, becuase it progresses so slowly, spends a lot of time in any one phase. Whereas someone with ALS burns through a limb quickly, we have weak but not paralyzed combined with various levels of spastic muscle groups for years at a time. The rest of the mechanics around that - ESPECIALLY the connective tissue and bone joints are what catch up for the weakness. It's like having a weak guy on your tug of war line, your strong guys make up for him, but doing it for years wears them down. And that same thing that makes us not feel weak also fails to remind us we're doing it! So until there's an external sign, falling or dropping all of our glasses, we tend to ignore it. Our joints catch the pain for it, and this can turn into arthritis. If you're really, really persistent (and I was!), you can make it look like you were born congenitally deformed in the joint. ;)

Notme - The one thing my docs are sure of is that mine is not diabetic in origin. My A1C's were so good for the year leading up to it that my PCP at the time had to take my word for it that I was a diabetic at all. Also, it doesn't get better and worse with my blood sugar. That leaves me technically at "idiopathic". The motility specialist that diagnosed me was sure it was related to my UMND, but I'm not so sure. I do have arguably both HSP and PLS, and HSP causes collateral damage, but the vagus nerve isn't usually on spg7's hit list. SPG7 is mitochondrial in nature as well, and I've never read about that in regards to gastro. So I'd guess that if they are related it all, it's just that having your nervous system under one kind of pressure makes it bad at resisting other things.
 
Notme

Would the IPad keyboard be any help to you? Another writer, John Scalzi, did a piece on it recently and seemed pleased with it. The downside is that it isn't cheap!
 
Thanks, Beky. I guess I've just assumed it was diabetes, though my diabetes has been great for years and not at all high in ages. I've had it since I was 16, though. Well over 30 years.

Grateful, I do have a keyboard for my iPad. Back when I bought my iPad 1, I had my own business and was making pretty good money, so got all the goodies with it. I haven't used it much, though. My fingers just don't listen to me very well anymore. I'm mostly a two finger typed now, which is difficult from ome that used to type nearly 80 WPM.

The darn auto correct feature drives me batty, too, lol. I end up having to edit and correct every post that doesn't get sent to moderation.

I'd use one of my speech apps if I spoke more clearly, but I've always had some difficulty with some words, and that seems to be worsening for some reason.

oh, and Beky, you may be right about the morale. I know my walks make me feel better mentally. I'd begun to feel like a shut-in since I was only leaving the house for my monthly doctor appt.

My daughter took me out for my birthday yesterday. We stopped at the lab for my bloodwork only to find the doctors spelled my name wrong, so they wouldn't do it. Did get my glasses fixed for two bucks! I can see to read again, lol.

I'm hoping doing some weightless stuff won't affect UMN stuff, because I just can't breathe at my weight. I've gotta get healthier beforemim too darn old format to matter anymore.

Thanks again, all, oh, and Elaine, I can't stand water at all, unless it's flavored with fruit punch or something, even thing, it makes me sick to my stomach, but I'm forcing 8 glasses a day as part of my new "me" . I am on day 10 and counting.

Noticing I was losing 3-5 lbs a month when I went to the doc is what started me off. I figured with a little work, I could improve on that.
 
Happy birthday, Patty! So glad to hear that you're getting out. It really does improve morale! Keep up the good work
 
thanks for your answere becky....just one more if i may.....i understand what you say and i do know i have ostioarthrits ....but the surprise to me was sigs of rheumatoid stuff...or should i not be surprised...loves johnny
 
As in rheumatoid arthritis instead of osteo? Maybe you have a predisposition, and the overcompensating stuff set it off young?
 
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