Cognitive component of spasticity?

[dkcarl62]

Greetings my fellow afflicted friends,

I believe my PLS spasticity has a cognitive component that I haven’t seen discussed in the forum and I’d like to get your input on it.

I’ll try to keep my story succinct. Back in spring of 2012, I started having lumbar back problems. Jumped on the circuit of chiropractors, PT, prednisone, etc. But I also started to notice that at times of emotional stress, my right leg would stiffen up, and I would walk with a limp. I remember this phenomena occurring on two occasions in fall of 2012, once when I was told I was laid off from my job, and the second time was during a job interview.

I had an MRI that fall which indicated I had a slipped vertebra and spinal stenosis. I needed a spinal fusion. I chalked up my stiff leg to a pinched nerve somewhere and had the fusion of L3-4 surgery in 12/2012.

The stiff leg syndrome seemed to disappear after surgery; however other symptoms did appear, like curly toes and loss of balance. In general, my recovery from the surgery wasn’t on track.

Getting back to the cognitive component, however, I returned to my gym visits when I went back to work after surgery. As summer 2013 wore on, I began to notice that when I crossed the parking lot to use the gym, my leg would stiffen up again. I felt vulnerable crossing that parking lot, as I couldn’t scoot out of the way if a car was coming. So I bought my first 3 wheeled walker and that gave me the confidence I needed to get across the parking lot and my leg stiffness went away.

Series of other similar events. Physical reaction to a perception. Stiff leg is now starting to become a total body state of “frozenness”. I was at the gym, using my walker, when without reason, I suddenly froze and couldn’t move. It might have been because I caught the movement of folks on elliptical machines? Walked into the bathroom, and the floor had just been washed, so it was wet, but certainly not dangerous. Again, another Freeze-Up. Just lately, something is going on with me and our kitchen floor. All the flooring is carpet except for the kitchen, which is laminate. Now, whenever I walk into the kitchen, I have to fight like crazy not to freeze. I can walker around the carpet just fine, and have been able to walker in the kitchen until just recently. No clue on that one.

Any thoughts? Experiences? Any treatment?

Deb

 

[Suzannah]

Hi Deb,

I have been experiencing similar things. Here's my take on why it happens to me:

One major reason, I think, is that I have lost a most of my kinesthetic/positional sense. That is, I have no idea where my limbs are in space at any given time. Since I can't really tell if my feet are pointing up, or down, or sideways, my brain gets very confused and won't move as a safety precaution. It happens a lot at night because I have very poor night vision to begin with, and my brain can't figure out the landscape. And my body is all, "No, thank you".

Also, I think because I have lost the automatic component of walking, I have to think so hard with each step that there isn't room to attend to other factors cognitively. So, I just don't have the brainpower to deal with all the mental processes needed to walk AND the environment. My brain gets overwhelmed and just shuts down.

Also also, it just feels like the signals aren't getting through. I can "sense" them stopping before they get all the way through my legs to my feet.

I find this happens a lot during my physical therapy sessions. The PT will tell me to shift my weight to my right leg (which is also worse) to do something, and I just.can't.move. At all. So they will tell me louder. And I"m like, "Um, I heard you. I just can't move right now!"

Very weird. Curious about others' experiences.
Suzannah

 

[billbell52]

I haven't had this experience with walking but I have experienced this with my voice. In the early years of this disease when I would get real anxious I felt like my brain was disconnected from my mouth.

 

[ShiftKicker]

Yes. I'm the same. My spasticity ramps up during stressful times. Or when I'm excited (watching sports). Or when I'm feeling any sort of high emotion, including happiness. I actually thought it meant I didn't really have motor neuron disease and presented my theory at my last appt at the ALS clinic. Like, see? It changes when I'm stressed. it CAN'T be MND, right? And they told me, no, actually, that's very normal. Dang.

 

[Green Queen]

When I feel all eyes on me my walking is terrible. I will put that down to stress. Not sure if people feel sorry for me, or are waiting for a fall!

Thanks Deb for bringing it up. I thought it might just be me.

God bless, Janelle x

 

[dkcarl62]

Thanks for sharing your experiences! I don't feel so alone in this now! I agree, Janelle, I hate it when ppl watch me! I had exactly the same thought, Shiftkicker - surely this can't be a MND. I experience the same thing as you, Billbell - especially trying to talk on the phone. I hate it. Suzannah, I think you are right on with your assessment of the loss of the automatic component of walking. I am aware of every foot placement I make. No wonder I'm so exhausted at night!

So this is what I've come up to help with walking on my kitchen floor. Don't laugh. When I cross the floor, I chant "I think I can, I think I can.....". That does two things for me. My thoughts are consumed, so there is no room for negative thoughts to enter, and the cadence of the chant gives me a rhythm with which to move my feet. So far, it seems to be working! Any cognitive behavioral therapists in the room who would like to comment?

Deb

 

[Suzannah]

Hi Deb,

Not a CBT therapist (though almost - I spent three years in grad school in clinical psychology before switching to public health). You're right on both accounts - it gives you something to focus on, and it keeps you from focusing on the negatives.

I talk to my legs all the time when they get tired. I say, "C'mon legs, c'mon legs, you're doing great, you're doing great, etc etc". Sometimes I count in sets of 4 and time it with my legs. 1 2 3 4. 1 2 3 4.

Also, when part of your body freezes, try very gently touching it. Like lay your hand, palm side down, on your quad muscles or near your knee. This trick helps me all the time. I think my brain needs the cuing to feel where my limbs are. It's weird, but effective.

Suzannah

 

[ShiftKicker]

Suzannah, this is very good advice. My psychologist actually recommended something similar while discussing issues with relaxation breathing. I was experiencing diaphragm/abdominal spasms and cramps while doing relaxation breathing because I was focusing on those muscles and trying to make them work. He asked I try placing my hand on my abdomen and concentrating on the rise and fall of my hand instead. Works like a charm.

 

[dkcarl62]

Great advise, Suzannah! The power of touch.........which reminds me to ask if anyone get a "medical massage" and how that works with insurance. But - separate forum question.

Deb

 

[affected]

I'm going to jump in on this even tho I don't have the disease.

When I was a teenager I fell walking down a mountain path and broke my leg in 3 places.

Still to this day if I am walking down a hill of any size on ground, rather than solid path, my legs react as though in memory. I have to 'talk myself through it'. The fact that my legs start to reacting by tightening means I am less steady! I usually start shaking too which is most unnerving and it becomes a bit of a cycle.

I love the 'I think I can, I think I can'. I am going to try that chant next time. I know I have to watch where I'm walking but try to think of something else to distract myself a bit, or start reminding myself that thousands of other people have walked this same place without incident and that it is perfectly safe, and I do calming breathing.

So I would say that definitely there is a cognitive component - even though my situation is so different I could understand what you meant. I've even been known to 'freeze' partway down a slope.

When Chris's symptoms first started he had a lot of trouble walking up a slope. We used to laugh at each other if we went for a walk around the property as he would stride past me going downhill and then I would quickly overtake him going up the other side.

Now I have my quad bike so I go all over the property every day and my legs don't mind at all ...

 

[dkcarl62]

Thanks for your input Tillie. It was very validating. Actually, it was in my kitchen that I first experience "freeze" with a drug reaction that caused it (learned the hard way I can't take Neudexta), so it makes perfect sense that its in the kitchen that I struggle. I'm getting better walking in the room, but I still need "The Chant" on occasion.

Deb

 

[olly]

I am in my 16th/17th yr with PLS now,the early years I have to say were the hardest which I think is when you are overcoming all the changes to your disabilities.
I have always noticed i'm worse when stressed or nervous and I do have to concentrate when walking... its not an auto pilot thing like able bodied people. Just concentrating on walking is in itself exhausting .
I do freeze if I get sudden spasms in my legs but also if someone walks in front of my path but I think that is the startle reflex kicking in.

 

[LifeEnthusiast]

Wow! So it's not just me. When people come rushing toward me in a shopping centre etc., I now just freeze. I don't how it started. It just seemed to sort of happen. I thought I was an oddity.

 

[olly]

No lifeenthusiast ,its not just you...well it is but "your" not odd... just pls odd

 

[Nuts]

Does anyone know if this freezing is the same that people with Parkinson's experience? Mom hasn't done this yet, but I've read that it's a common problem with Parkinson's.