Questions about walking, specifically for PPMSers

[biowham]

Hi, all--

I used to post here quite a bit, so some folks might remember me. I'm still a "possible PPMS," having moved twice and encountering new neuros--and as we know, no two neurologists can seem to agree on anything.

Anyway ... my question(s) for those of you with PPMS (I'm going to put my answer later but am curious about the experiences of others):

When you have gait disturbance, when does it happen (ie, all the time, with rising from sitting or sleeping, worsens with walking a distance--if so, what distance?
Do you have it at all times, ie the same level of disturbance, no matter what?
Do you have some days that are better/worse than others?
How has your gait disturbance progressed over the years--ie, from 1 to 2 years, 1 versus 3, 1 versus 4, etc.?

Basically, any info you have about your experience with PPMS and gait. Full disclosure: I might summarize these experiences in something I'm writing about PPMS, but would not be specifically naming people.

Thanks for your time. *waddles off*

Bio

[biowham]

Thanks to Dennis for the update and to Kelly for the info. I have found that neuros just don't seem to get PPMS that well, and this is useful.

[anon07072023]

Q:When you have gait disturbance, when does it happen (ie, all the time, with rising from sitting or sleeping, worsens with walking a distance--if so, what distance?

A: My gait disturbances are worse with distance and the longer I'm on my feet. I'd say maybe 30-45 min at most, then my legs are really tired. I always have problems walking up stairs & walking up hills. My legs feel like lead (especially on my right side). It's like I'm dragging my body up the hill and it won't go.

Q:Do you have it at all times, ie the same level of disturbance, no matter what?
A: I have all of these problems all the time and it's worse when I'm more fatigued than usual.

Q: Do you have some days that are better/worse than others?
A: Yes, I think some days are better than others. But, still have symptoms noted above every time I'm in those situations.

Q: How has your gait disturbance progressed over the years--ie, from 1 to 2 years, 1 versus 3, 1 versus 4, etc.?  
A: It's just been a slow steady decline - nothing stands out as a severe change all of a sudden. My symptoms started around Jan 2009.

[Sailorsong]

I should have mentioned that like JJ the type of surface I am trying and I stress trying to walk on, also effects how quickly my legs give out on me.

Dennis

[biowham]

Wow. I canNOT believe you're still in the same situation as I, even though the numbers bear this out. Like you, I'm just livin'. Waddling around as long as I've got a waddle in me.

Thanks for the replies. These are very helpful.

Bio

[supermum_ms]

Hey Bio welcome back!!

Um not sure if you want my info, like you i'm still not official but then i'm not doing anything to change that................just livin blah blah blah :D

But if you do......i've now got wheels, I kind of had to acknowledge these little old legs were fine enough for around the house but i needed something a lot more reliable, for out in the real world. lol My mobility definitely gets worse with use, muscle fatigue kicks in way to fast for my liking, my window has been shrinking every year.

Q:When you have gait disturbance, when does it happen (ie, all the time, with rising from sitting or sleeping, worsens with walking a distance--if so, what distance?

A: Most of the time but worsens with distance, not sure how far because it worsen with fatigue, surface - flat, hilly, smooth, rough etc i'm ok with smooth and flat for about 10-15 minutes and then i start to struggle, wobbly, trip, leg goes out from under me, walking like a string puppet etc

Q:Do you have it at all times, ie the same level of disturbance, no matter what?
A: see above

Q: Do you have some days that are better/worse than others?
A: If i don't leave the house it's not 'as' noticeable, because i'm not really using my legs the same or for as long, basically my everyday is the same apart from i've totalled my self and it can take me several day's to get back to my normal again.

Q: How has your gait disturbance progressed over the years--ie, from 1 to 2 years, 1 versus 3, 1 versus 4, etc.?  
A: Gait issues first fit in April 09, so what's that....4 3/4 years to get to where I am now.

I'm not sure if your going to get many responses from PPMSers, we don't have many but we do have some that are active posters, so hopefully you'll get more responses. :D

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

[biowham]

Thanks, Dennis. All of this is very informative.

Bio

[Sailorsong]

Bio,

  OK I'm PPMS.

  The answer is yes to everything in your Q. It happens all of the time to some degree or another. Some times it gets worse after I have been sitting for a while, but other times it doesn't. Sometimes it gets worse even after just sitting for a minute as well. But it definitely get worse the longer I am on my feet. But even that seems to varies accord to my overall fatigue level. Just walking the 25 feet to my mail box will be my undoing, while other days I can almost make it though my shopping before my legs are shot (about 20 minutes).

I'm not sure what your last Q was. But I have MS for 25 years now. At times my gait problems seem very stable over many years, but at other times it has been a rapid decline within a single year.  I hope that is what you were asking about.

Dennis

[biowham]

Thanks for the response! My experiences are similar. I have trouble getting moving when I get up from sitting or sleeping and struggle with stairs. And when I walk--which I try to do every day--I start out OK (a hitch in my giddyup sometimes)--but after a few blocks, it starts to deteriorate. And then I deal with that the rest of the day/evening, especially if I try to walk more than a half hour or so.

One reason I ask is because I described this increased gait problem with walking to one neuro, and she said, "Oh, no. With PPMS, you have the gait problem all the time, not after you've walked for a while." And I was thinking I'd seen reports from people with PPMS and official literature, even, that actually, you can start out your walk doing pretty well but experience deterioration as you go along.

Bio

[kwarendorf]

Welcome back :-)

I can't meet the PPMS criteria, and am hoping that my SPMS designation might help.

My gait issue is my one 'major' MS issue. It seems to have gotten worse over time.

Where once I walked the NYC Marathon, my limit these days seems to be 40-45 minutes of uninterrupted walking outside. At that point I start to lose control of my left foot/leg. I can pick it up OK, but have no idea where it's going to land.

Lately, at the 45 minute mark, the left leg issues are joined by right leg weakness. I need to sit lest I fall down. After I sit for 10-15 minutes I seem be OK.

This happens whether it's hot or cold. It's pretty much a lock. At 45 minutes my legs abandon me...

Kyle