What is walking like for you?

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IhavePLS

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279
Reason
DX UMND/PLS
Diagnosis
12/2010
Country
US
State
Pennsylvania
City
SW
Hi all,

In the thread started by ShiftKicker, some of us mentioned the strangeness of this disease, and how oddly unfamiliar the symptoms can be. Along these lines, are you able to describe what walking is really like for you? How does it feel? Can you describe the feeling/ sensations you have when walking? Do you have a "scissors-like" gait? Does spasticity increase the longer you walk?

I do not have a scissors-like gait, but I do walk at times as if I'm very slightly drunk. It's not a staggering ("Wow...that guy drank way too much, man!...it's a wonder he can even walk!") kind of gait, but it's one that I feel. I'm usually OK when I first starting walking, but after I've walked a block or two, my pace slows, my steps become shorter, and each step doesn't feel the same as it used to feel in the "good ol' days"-- rather, I have the feeling that I'm "balancing" on my legs. Sometimes subtle, and at other times not, my legs feel like they're not wanting to move straight forward, but they seem to want to flop to the left or to the right (***) I suppose that when people say they have "bad balance," they must be referring to this sensation (?).

I was really taken aback by this bad balance "sensation" -- it feels really strange. Add to the tendency of the legs to "wander," the spasticity, pain, and leg heaviness, and presto: You have just described the plight of a walking PLSer!

My mother-in-law has "balance" issues - but she never really complains about them. I suppose I've taken her balance issues for granted over the years, but now I wonder: Is this the same sensation that she has felt every day for so many years? If so, it goes to show that you never really "get it" until you've actually "got it" (bad balance, that is).

Thanks! Mike

*** I hope this is not a descriptor of a "scissors-like gait" -- or the beginnings of one! :)
 
Mike, it sounds like you still mostly walk unassisted--if that's true, lucky you.

I can manage to stumble around the house on my own but I do it at great risk of going down. The balance problem is fairly recent, within the past 7 or 8 months and it has made walking unassisted very dangerous. Even a walking pole no longer seems enough so I often hang onto a sturdy elbow and actually do much better with just an elbow than a stick, but of course elbows aren't always at my beck and call. However, my balance problem is not just with ambulating but even with just standing--I often lose balance getting up and plop right back down in my chair.

The other component is the spastic gait. My stride has diminished to very short, slow steps with my left leg swinging out to the side, my left foot turning in, and my knees buckling backwards to full hyperextension with each step--it is insanely frustrating and impossible to cover much ground! I often want to take bigger steps or move more quickly but it can't happen. If I'm feeling extra spastic with cold or anxiety both toes drag along and feet turn inward, but this is only when I use a walker in the house and it gets me going too fast. For any distance, even a couple blocks, I bought a simple transport chair that looks like a lawn chair on wheels (but it's very sturdy), and I have to be pushed.

How it 'feels' is a hard one...like walking in quick sand maybe? Like my legs are stuck together with toothpicks and rubber bands? It's probably a little different for everyone. For me it should suffice to say that my legs feel horrible whenever I'm on them--tight, weak-ish, rubbery, stringy muscles, pulling tendons.....as if their life as useful limbs is timing out. One reason I bought an expensive recumbent 'trike' is because the motion of pedaling feels (and even looks) somewhat normal and it is very stable and easy to pedal. I can't go fast but I can glide past scenery using my own leg power. I even managed 11 miles on Pine Creek trail the other week (is that in your neck of the woods in PA?).

Hope this helps. Take care!

Kathy
 
I've been described as having a spastic gait. I am definitely mobile, but am aware and careful for every step. There is never a time where I forget I have a movement issue.
How it feels:
I used to have dreams where I needed to get somewhere quickly, or I was being chased, and my legs were too heavy or just too slow-like moving through deep water. This is what it feels like in reality. I'm getting used to it, but sometimes forget my legs will not respond as quickly as I expect them to- which causes falling up stairs, or big flail-y trips and staggers on flat ground. As Mike has experienced, I slow down after a block as the fatigue kicks in- mostly in my quads and hamstrings, which causes cramps and spasms, with the feeling my achilles tendons are going to snap. I don't walk so much as rock from side to side, like "walking" a bookshelf snug up to a wall. For some reason, my arms pull up like a tyrranosaurus rex unless I consciously bring them down to swing by my side. I think, essentially, if I want to walk, I have to plot every small movement of every step. If walls or anything above the hip is reachable, I immediately grab on and brace myself like a toddler learning to wall walk. Permanent drunk stagger, with a side of desperate fatigue and toe catching. I will hand walk up stairs if no one is watching, otherwise I will pull myself up via the bannister. I hate having people walk behind me for fear of the pressure of having to hurry up, and insist people precede me down stairs because I fear the pressure will cause me to fall if I am not watching every step. I do not have a scissor gait- my leg swings out to the side to prevent it from dragging, and I feel as though both my knees will hyper extend backwards unless I am consciously making sure they do not. Trippy has described exactly how I feel when it comes to gait. My doctors probably think I am much more impaired than I am due to stress causing a boost to my spasticity because of white coat syndrome. I have described myself as a "glump" as I sort of clomp along flat footed with zero spring in my step and no rebound in posture.
With regards to balance- no issues side to side or standing still, but feel that if I don't pay strict attention with forward motion, I will fall forward with zero ability to catch myself with my arms.
Having said all that, my gait today was exemplary due to a recent boost of mmj- an additional dose in the morning (usually I take it just before sleep) and the addition of lamotrigine (25mg- prescribed as an anti-convulsant by my gp as a "maybe this'll work?"). Though still seriously fatigued, I was able to walk without catching my toes with every step. I was heartened, and spent a very happy morning just walking to Starbucks with my son. Baclofen and Tizanidine have actually worked against me and caused too much wobbliness to be effective- I'm a convert to cannabis, but feel slightly shady admitting so. Try hiding THAT from your 16yr old kid!
I deeply deeply fear the day I am no longer mobile. Every morning I wake up and take stock of all my muscles to see if they still respond. I've been told to foster my energy by getting a scooter, or to maintain safety by using a rollerator. I fear both because my arm strength is not up to maneuvering a rollator and my arm/hand spasticity makes me fear the controls of a moving vehicle. I reject both because it would be admitting I am handicapped. A year ago I was playing a high performance full contact sport on rollerskates 15 to 18 hours weekly and now I am counting every step and wondering if tomorrow is the day I remain seated for the rest of my life. I am so sick of non-activity that I am willing to bust through the fatigue wall, and have found a recumbent bike to bring a little speed into my life.
Not in any way like the fast moving horror of ALS, but frightening and wearying nonetheless.
 
Post went to mod. I haven't learned the trigger words yet. Curses.
 
Hi Kathy, actually, Pine Creek Trail is in the Appalachian Mountains (that is a lovely area of the state, I might add). I live in SW-PA.

Kathy and SK, thanks to you both for your response as well -- they are greatly appreciated, and I'm certain that certain parts of your response will benefit others in some way or another.

SK, I am going to get a stationary bike, because I need to exercise -- calories just aren't being consumed by the slooooowwwness of my walking these days. I wouldn't worry too much about cannabis usage (although I do understand the issue with your son) -- we've been conditioned by the FDA to think of cannabis as a "bad" drug with no medicinal benefit, when that is clearly NOT the case. Opiates are synthetic and they are also very deadly, cannabis is neither of these.

Thank you again!

Mike
 
When all This first happened, and I dunno...every doctor in Perth asked me to describe how I thought my walking 'looked', I would very hesitantly reply "spastic,". It wasn't until a few months later, my OT told me it wasn't a discriminatory word, but a word related totally to my new world.

I still have that view of my walk most of the time. Mainly though I feel like a Mummy or zombie, as I don't really lift my foot once tired, just drag it.

Plus now I find if I don't wear my wretched AFO, I stumble a lot because of foot drop. I always land on the side of my foot not flat on my foot.

I don't go far because of my terrible walking, and prefer to ride my scooter to town, than be driven and have to walk the shops.

Not that I want This, but it's here so putting a name to it will be good. 46 days to go until I see the Neuro in Sydney. TRYING not to pin my hopes on an official diagnosis...we all know how hard it can be to not get one.

Mike I'm hearing you about the exercise. I've just ordered a rocker recliner. I didn't want a granny's knitting chair, but a nice comfy lounge chair. They are good for passive exercise. Because my right hand doesn't work, the company are specially making mine with the lever for the recliner part on the left. As it's a special order, I could pick my colour. Any guesses...yep. Green.

Sometimes I just wish they could give me a date when I won't be able to walk, that's the most frustrating bit. Waiting for the 12th of never...

God bless, Janelle x
 
Mike, my inability to walk progressed quite rapidly (in my opinion). Within about 16 months, I went from walking normal to a foot-dragging limp, to using a cane, to a rollator to a PWC.

With me, it started to become an issue about 3 years ago. While out working in my garage, especially while carrying something (like a full gas can), I would trip over my own feet and fall. It began as either getting one foot behind the other (while walking) or stepping on the sole of my other shoe. It was like my feet were not "aiming" correctly. I never consciously thought about "foot aim" in the past. However, when I would accidentally step on my foot, my feet and legs would no longer react (as if recovering from a little tripping hazard), and down I went.

As time went on, my gait became progressively abnormal with stiff legs and minimal knee bending. My balance evaporated completely. I mean NO balance; zero, zilch, nah-tah! What did it feel like? Like trying to walk in wet cement. Still does... I look like Herman Munster using a rollator.

And the achey sensation in my legs and hips was unbearable. I'm not sure if that's spasticity or not, but it was literally pushing me toward suicide. My neuro prescribed Baclofen, and within 15 minutes of my first dose, that terrible achey feeling went away. Like a miracle!

I do NOT like taking meds if I don't have to. I've tried backing off on Baclofen, but that terrible feeling always resurfaces. As mentioned by several fellow PLSers, Baclofen does not agree with a lot of you. However, for me, it is (literally) a life saver.

Best, TB
 
TB 16 months does, unfortunately, seem very quick.

I first had foot issues January 2013. I have a stick I use occasionally (mainly on the kids!) but that increases my hip pain. Can't win!

God bless, Janelle x
 
Hi TB,

Other than bilateral leg pain, one of my first symptoms was the sensation of "walking in quicksand" and difficulty walking uphill (and up steps). For people who've never experienced this kind of leg involvement, the feeling in the legs is akin to walking in very heavy sand on a beach, or even to walking in water (not on water, but in water.... :)) -- and both of these only after having had run a really fast 10-K or a slow marathon. I've actually run the 26.2 mile distance before, and believe me, that's exactly how it feels in the legs, most of the time.

Kathy, an afterthought to my response to you: I am grateful that I can still walk -- I'm incredibly fortunate. But somehow, that gets clouded by the physical symptoms that I experience every day - back, neck, rib, spasms. And that awful feeling in the legs -- as described so well by TB above -- is a killer. I'm back up to 70 mg of baclofen daily, but only hot water really works to relieve that dreadful feeling of spasticity (that's only a temporary fix -- but it's certainly one that I'm appreciative of!).

Mike
 
hey mike, good thread! at first doc said you need braces, i said i do not! he said your using to much energy to walk especially w/ toe drop. so i said ok i'll use braces. they have help greatly. now i can't walk w/out them and i really am shakey w/them so now my PWC is my mobility of choice especially at the end of the day. i still do act as if i can walk and find out quickly that i can't and my cals wishes i'd stop this but dam i want to move. i hate being stationary. my journey from a regular walk in 1-1-15 to pwc half time/braces half time 8-10-15 has been a mere 8 mos. i am hoping it all slows down some but IIWII. later chally
 
My walking is hard to describe, but I will try.

I think it is best stated as absence of bending my knees. I don't have adequate strength in my legs to support myself with my knees bent. I do relatively OK with straight legs. So, I guess I would say I waddle along like a duck. This has been slowly progressing for about 3 years that I can tell.

My walking is quite limited. I can walk 100 feet if I do it occasionally in a day. I think if my life depended on it, I could walk 100 to 200 yards. But really, if I am doing anything more than walking across a room, I use my trusty PWC.

Walking wears me out, without me even knowing it. If I don't use my PWC enough, I pay for it the next day or two!

Steve
 
Walking wears me out, without me even knowing it. If I don't use my PWC enough, I pay for it the next day or two!

Steve

I think I'm there too, Steve. I only have one bad leg, but walking is still very difficult. My back and hips are affected by the uneven gait.
When we were in Sydney in April, my brother, kids and I walked just about the whole CBD looking for somewhere for tea. It was Easter Monday, which was a public holiday. Everything turned out to be shut.
After what seemed like an eternity of walking, we ended up at Hungry Jacks (Burger King) which was right next door to the hotel!

God bless, Janelle x
 
Everything shift kicker says is exactly how I experience it---the dreams!omg!that really bothers me that I've always had the dream that I wasnt able to move and I'm worried it's coming true! Another thing is, I have an inability to stand still. When I'm forced to I can feel my leg muscles seizing up. So I rock back and forth side to side like someone rocking a baby! Every time I see someone who struggles to walk and clearly exhibits pain, I want to run away from them(fat chance!) because I know what I must look like and I'm afraid my kids will be too embarrassed to be seen with me soon! They're always alone.......it's getting to the point where I want to live my life completely out of the public eye.
 
....it's getting to the point where I want to live my life completely out of the public eye.

Completely! I have started doing a lot of my shopping online. I get really over people watching me trying to navigate the trolley! Some people make my day and help, but that's not really a long term answer.
I shop online so much now, I'm very appreciative of that side of technology!

God bless, Janelle x
 
Hey Janelle,

Do you guys have Amazon in the land way down under? I basically use it for everything but refrigerated groceries. And I love the product reviews .... TB
 
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