Walking: Walking has been very difficult... - My MSAA Community

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Walking

Sandydemop profile image

Walking has been very difficult for me. Anybody relate? Yesterday i felt extremely weak. stiff and weak. I ate something out of the ordinary (pistachios) and somehow i must be allergic to it. But this month I have been experiencing more walking difficulty in general and June and September are usually my best months in terms of weather! So is it an exacerbation? progression? something else? Yesterday I used a wheel chair to get to a doc appt. It made things easier but i want to stay upright!

thanks for reading.

34 Replies

I definitely can relate.

I use canes, rollators, my husband, and a wheelchair to get around. Whatever works to keep moving.

I plan for the activity and the weather. The weather has a big effect on my energy level.

Yesterday was hot & humid which always makes it worse for me .....and my hair🤣

Today, I will use the chair as I am going to tour a garden and there'll be a lot of walking required.It's cooler too so that is a good thing.

As for diet, things like dairy and sugar aren't so good for me.

Hopefully, things will improve for you soon!

thanks!

The heat 🥵 here is doing me in…even with cooling vest, bioness and rollator.I’m finishing 10 weeks of intense PT and have seen improvements 👍😊

Maybe a PT eval to identify where deficits and where u can work to improve 🤷‍♀️

Sandydemop profile image
Sandydemop in reply to erash

thanks!

Uthoff's season came early this year where I live. I can relate to heat issues. Do you have a cooling vest? Before I had one, I use to ice myself down in the car on the way to whatever I was doing.

Sandydemop profile image
Sandydemop in reply to kdali

thanks!

CalfeeChick profile image
CalfeeChickCommunityAmbassador in reply to kdali

My balance is getting worse and I have had a couple of falls. Balance is always worst in the afternoon. I joke that it’s good this old house has narrow hallways, just have to be careful not to run into doorframes 😊

MSAA has a program that might supply you with a cooling vest. I am in an area where we have temps over 100 degrees for days in a row. Already a day at 105! I wear my vest if I have to go out in the heat to garden although I try to do it early morning or cooler part of afternoon.

Walking and weakness/balance in general have been more difficult to deal with this last month for me also. Not sure what is going on, progression I assume. Add heat and it definitely gets worse. Use a walker almost all the time. Sadly I think it is time to look into a wheelchair so I can have someone push me to where I'm going, so I'm not exhausted by the time I get there with the walker.

agree. thanks!

Sorry Sandy, I cannot relate to an exacerbation, I have never experienced one with having PPMS. I relate to the heat, I may as well be wearing a straw for something to suck the energy right out of me which makes walking more tedious. Sorry I can’t be any more help, but big hug 🤗 blessings Jimeka

Sandydemop profile image
Sandydemop in reply to jimeka

thanks jimeka for the hug. You are a big help just by being you.

Sandydemop , of course you want to stay upright! Using a wheelchair or other mobility aid from time to time doesn't mean you're on a rapid downhill course and will end up immobilized. I've used a manual wheelchair since 1984 but I can still walk around on most days, say 99.9% of them. I don't do much walking around any more, and when I'm outside my small apartment I've been using a rollator in the last couple of years, but I still rack up about 1,600 steps/day. I find that sitting in the wheelchair helps me to get over fatigue faster than sitting anywhere else.

However, going places with a manual wheelchair can be a physical challenge. You have to propel the wheels with your arms, often over surfaces that aren't easy (carpets, for instance), and coping with doors can be a tiring nuisance but those wheels are mighty good to have.

Sandydemop profile image
Sandydemop in reply to agate

thanks agate for addressing that fear that it must be a one way trip down hill. It makes me more motivated to exercise and strengthen my legs so that the rollator does not have to get the best of me. :)

I hope you find some good answers to your dilemma. It is so important to keep moving, but using a wheelchair sometimes can be a very good idea for reducing some fatigue, as agate suggested.

Sandydemop profile image
Sandydemop in reply to Amore55

thanks Kelly

Weakness, Balance, all typical issues for me. And lately they're all worse here too. But, you have to grin and bear it, but never give up, keep pushing. I couldn't do a block without literally pushing myself forward with a cane. I wore out many. My last is mounted like a trophy fish. I've used canes for a years, still use a power walker every week to do the lawn (lawnmower with power drive). Although every day recently has been a struggle. Why? The heat and humidity I'm sure. But even walking before the heat builds, weakness and balance are an issue. Yesterday was cooler and dryer. Went for the big one, a paved trail along a river not too far from home. From the train station to the boat launch, and back, 16,000 steps! Saw almost a dozen fishermen wading the river fishing, another bunch kayaking. Took in the wildlife along the trail, and loved the various bikers, joggers, and just faster walkers with their polite "good mornings or just the on your left" letting you know they were coming up behind you passing on your left. Keep in mind, 16,000 steps is years of never stopping pushing myself. Can I jog or run? Nope, but if you push, and never stop pushing, I started a half a block a day, YOU CAN DO IT TOO. My list of M.S. symptoms is longer than any trail I can imagine. BUT, really push yourself nonstop over time. Enjoy nature, be it simply the out your front door, but remember to keep on pushing yourself. AND EAT HEALTHY, avoid all processed foods. A salad can be a masterpiece. I normally skip dressings, but if you do, make them yourself.

Hi Mark, thanks for the encouragement. So glad your efforts are paying off for you and i appreciate the example. i think i'll go exercise now:)

There you go! Wobbly, I did the neighborhood again today. Hotter, will do more later when it cools down?

sounds good. It's very cool here now. and windy. feels like March was supposed to feel. I went out on the porch and did some heel raises, calf strengthening and stretches.

Humidity gets to me. It's going to hot again next week but hopefully the humidity won't be bad.

MarkUpnorth profile image
MarkUpnorth in reply to mrsmike9

I'm dreading my power walker session tomorrow. Grass needs cutting. May have to vest up with ice packs, and a sweat band. But I know it's going to be hxxx!

mrsmike9 profile image
mrsmike9 in reply to MarkUpnorth

I'm waiting for my neuro to send me what I need to apply for a cooling vest. I don't have one yet.

thanks MarkUpnorth I hope you stay cool and not over do.

Sandydemop profile image
Sandydemop in reply to mrsmike9

thanks mrsmike9

It's summer heat is always a problem. Talk to your neurologist about the walking

Sandydemop profile image
Sandydemop in reply to Tazmanian

thanks Taz. Next appt.is not until July.

Tazmanian profile image
Tazmanian in reply to Sandydemop

You can always call him

Hi Sandy I have days where my walking is very clumsy & I'm staggering those are days when I just don't do much that is unnecessary, why they happen I don't know but I do have a wheelchair & a walker that spend most of the time in the attic, when I need them they are there.Hope you feel better soon Mary

Sandydemop profile image
Sandydemop in reply to kycmary

thanks Mary. Glad you can store those things away. And i like that you are realistic about when you need rest.

At 69 yrs & 28 of them with MS I have finally learned to listen to my body & pay attention sort of when it speaks lolol I guess one is never to old to learn something different! Take care of you. Mary

Sandydemop profile image
Sandydemop in reply to kycmary

Hi Mary, I over did it again today. When will i learn?? I felt good after 10 minutes on the stationery bike. By 12 mins I was in severe pain. Ugh. Anyway try try again. Next time.

Ok 'Silly girl' 10 min. is great STOP! take a break then do more later, that way you don't keep causing unneeded pain! Then you can be Sandy instead of 'Sill girl'. If we lol at ourself it's ok cause everyone else is. Hang in there there's hope yet. love ya Mary

Sandydemop profile image
Sandydemop in reply to kycmary

thanks Mary. i also learned from another of our peers to take a break half way through. Duh. never thought of that. i usually push through. I am learning to slow down.

You will make it same as I did after a few unscheduled naps on the bathroom floor.lololol

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