Spasticity question

[prosons]

Hi Everyone,

Sorry if this is a rudimentary question. My leg spasticity worsens the more I walk. For example, after sitting for a period of time and then walking, the first 20 steps are pretty good, thereafter, every step makes me more and more stiff.

This puzzles me because the "literature" says that exercise helps loosen you up. Can you please let me know how your muscles react to exercise?

Thank you,
Frank

 

[pearshoot]

you must listen to your body. if doing strength exercise try backing off on weigths and reducing reps. never strain do just enough to feel comfortable. do you use any creatine? i do 15 grams every day for almost four years, and potassium for many years (leg cramps) have never been bothered bothered with spasticity.

 

[Nighthawk]

Hi Everyone,

Sorry if this is a rudimentary question. My leg spasticity worsens the more I walk. For example, after sitting for a period of time and then walking, the first 20 steps are pretty good, thereafter, every step makes me more and more stiff.

This puzzles me because the "literature" says that exercise helps loosen you up. Can you please let me know how your muscles react to exercise?

Thank you,
Frank

Hi,

In my case, this is what I've noticed.
The less I walk (by staying in bed or a wheelchair most of the time), I notice that the more and more resistance my legs put up when I try to walk (more spasticity, I guess).

I was very active at home, going up and down the stairs (I live in a 3 stories home) everyday, also walking 20 minutes daily (at home, on the first floor) with the aid of my Rollator.
I've had spasticity since the whole thing began (ALS) as I have much UMN involvement (brisk reflexes still, also ankle clonus, etc.) but kept it under control by walking (never tried Baclofen or similar drugs).

However, my balance is very poor and because of this, I had a fall in my bedroom recently (at lest it happened on carpeted floor and I didn't have any fractures, just busted my glasses) even when holding my Rollator.
Afterwards, my caregivers insisted that I spend more time in bed or a wheelchair.
That translated in less exercise for my legs (no more short walks at home) and, this sedentary lifestyle of just sitting or being in bed has contributed to increase my legs spasticity.

I know I have more spasticity than before because when I try to stand up from bed or the wheelchair, the ankle clonus is more pronounced than it was before, when I was still walking.
Now, I get tired more easily if I attempt to walk with my Rollator (just a 3-5 minutes walk wears me out).

So, exercise is a good thing for your legs if you have spasticity, as long as it's SAFE for you to walk without falling. That's important to remember.

Now I deeply regret having stopped my shorts walks at home as a blame this for an increased spasticity in both legs.


NH

 

[prosons]

Hi Thank you for your replies.

NH,
I have been thinking about trying a treadmill for walking so that I could hold on to the railings. Have you thought about this? Also, d you have upper body spasticity?

Thank you
Frank

 

[AKmom]

I believe that because I was so active and pushed myself for years (20+ years) with pls, it kept me out of the wheel chair. The spasticity and cramping I just learned to live with. I did start taking baclofen in 2010 because the stiffness was getting worse and I was loosing ground on how far and long I could be up and walking. The baclofen has worked enough to keep me from looking like a zombie, but it hasn't helped increase my stamina. I still fatigue easily. I have to use a pwc when out of the house and within the past 6 months, I have had to use a stair lift because I kept falling down the stairs.

So, use the spasticity as much as you can to keep moving, but use the meds to keep moving only if you need them. Everyone is different on their progression and everyone can tolerate things differently too. The key is to learn where your comfort zone is and pick and choose the activities that will benefit you the most.

I have learned over the years, my sweet spot in energy level and spasticity. I pick and choose throughout the day, the activities that will be the most useful to others and myself to use up my "up" time. Everything else I sit through with the pwc or in a recliner.

 

[Nighthawk]

Hi Thank you for your replies.

NH,
I have been thinking about trying a treadmill for walking so that I could hold on to the railings. Have you thought about this? Also, d you have upper body spasticity?

Thank you
Frank

Nope, I hadn't thought about the treadmill but, it looks like a good idea to me.

About upper body spasticity, I haven't noticed that yet. I might have it but I don't really know how it would manifest in that part of the body.

My spasticity right now is mainly in both legs and, it gets worse when the weather is very cold. I don't even go outside in cold weather unless strictly necessary.


NH

 

[Nighthawk]

Oh, I forgot to add that stretching forms the basis of spasticity treatment. Stretching helps to maintain the full range of motion of a joint and helps prevent contracture.
Strengthening exercises are aimed at restoring the proper level of strength to affected muscles, so that as tone is reduced through other treatments, the affected limb can be used to its fullest potential.

Application of orthoses and braces allow a spastic limb to be maintained in a more normal position. For instance, an ankle-foot orthosis (also known as AFO) can help keep the foot flexed and reduce contracture of the calf muscles, in case you have foot drop. Proper limb positioning improves comfort and reduces spasticity.


Hope this helps.


NH

 

[Moonwolfy]

I have a ton of spasticity as well. I recently started swimming a bit which seems to help me and is easier than walking a lot plus is excellent stress relief. I also take zanaflex for spasticity which has helped my walking a bit more as well as helped my throat a bit so I can swallow and breathe a bit easier. I use a normal walker with no wheels but am thinking about trying forearm crutches in near future. I try to walk as much as I can with many breaks in between for rest as I'm trying to keep my strength and energy up. I'm only 35 and don't want to be wheelchair bound so early in life. I would ask your doctor if something like light swimming could help you or maybe baclofen or zanaflex as it has improved my walking which I'm grateful for.

 

[Nighthawk]

Baclofen, starting at very low dose usually helps with spasticity problems.
The thing with Baclofen is that as soon as your body develops tolerance to it, you necessarily have to increase the dose to achieve the same effects you felt with a low dose.
And, eventually, once the spasticity starts declining over time (less UMN problems) and weakness starts taking over (more manifesting LMN problems), Baclofen wouldn't be of much help.

NH

 

[johnnyliverpool1]

...i potter about and loosen up somewhat....but i then have to sit down which causes me to stiffn up so i gotter get up...then i gotta sit down and so on.....but, on the plus side without the spaz we probably wouldnt be walking at all.........i got clonus in me arms and stiffness so guess i got spaz there too....pain is the name of the game....you get to live with it in time.....johnny

 

[Nighthawk]

I get some occasional shaking in the arms too, like those suffered by Parkinson's patients.
It looks like MND somehow resembles some Parkinson's symptoms.

NH

 

[olly]

Frank i am the same as you as well as johnny with the stiffness.
Some days i feel like a yoyo......up and down,up and down.
But i do take less baclofen now as i have alot more weakness these days.

 

[johnnyliverpool1]

i have gone through four armchairs in 7 yrs.....you know, with a big dip in the middle from my dead weight....and i just broke my armrest heaving myself outer the chair....can anyone beat that....johnny

 

[pearshoot]

whats that old saying, if you didn't have any bad luck you would not have have any luck at all. are these lift chairs? i don't think you have to heave very hard to exit a lift chair

 

[Bad Balance]

My advice follows,the adage use it or loose it. I think that some mental toughness that draws on inner strength is required. For me, sitting for long periods weakens me and relying totally on a wheelchair forfeits some of my abilities.

You must have a,disciplined stretching program. Exercise? ....see how you recover. It should be comforting.