Updates and question about stride progression

[dancergymnast]

Good morning! (or Good night, depending on where in the world you are )

I feel like I am finally getting somewhere in my diagnostic journey. I have "changed" my health care to a different region of Spain and after an appointment in general neurology, have been derived to the neuromuscular team. I am waiting for the appointment date, so I'm hoping in January/February I'll be able to go back there to finally see a team who MAYBE has seen UMND before. I've prepared a list of US doctors that I have found through this forum who have diagnosed your cases of PLS, in case I continue having trouble. Trying to be as proactive as possible so they will stop trying to say it's psychological (I now have THREE opinions from three different psychiatrists that say I don't have any psychological problem, and according to the last one I saw, it seems I'm not the only one locally to have been sent there by an incompetent neurology team...).

I do have another question about symptoms. As I currently go months without contact with a neurologist (or any other pertinent doctor for that matter), I'm not sure what to do about symptom progression. In the last few weeks, I have been falling every time I get out of bed in the morning. Once my legs "find themselves" I'm able to get around slowly unassisted. But the first few hours in the morning are slow and difficult, especially the mornings when I walk to work (I have a rotating class schedule and some weeks I don't have to work in the AM). My( gait has also altered just in the last week; I was already shuffling my feet since my ankles don't move either up or down, but now my stride is also very short. It's like I can't extend my legs out to walk with a longer stride. Also, my left knee doesn't completely straighten out, adding another little hitch in my stride. My legs tire out much faster than they used to walking in this way.

So, my question is, at what point did you start using assistive devices, such as leg braces (AFOs?) and canes? Or has anyone had the same stride progression and found anything to help with it, like some new way to walk or anything really? Did you learn anything interesting in physical therapy sessions that helped you compensate with your stride and not tire you out so much? Call me vain, but I'd rather not call any more attention to myself in the street with a cane or the like- I already stick out like a sore thumb with my blinding white Irish-American skin. I'd rather not be the ghostly looking foreigner with obvious weird leg problems.

 

[traveler1]

Hi Dancer,

I can totally relate. (I'm sure we all can.) It's no fun to begin using assistive devices! On the other hand, it's awesome to be able to maintain some independence, and if a device can help with that, I say go for it with gusto!

I don't remember when in my progression I bought my hiking stick (it's a "stick" not a "cane"...Ha!), but I'd guess about five years after my first symptoms. (I'm ten years in now.) I purchased a Leki hiking stick at a sporting goods store; one reason I like it is that it's kind of outdoorsy looking. I didn't need it at home, but I often took it shopping or to appointments. Sometimes I'd need it (curbs are hazardous without it!) and sometimes I'd just carry. It's really no big deal. It's like an insurance policy that keeps you safe and mobile. I also have a pair of actual hiking sticks and they're even better! No matter what situation I find myself in, using two sticks will always help me to get moving. I usually only use two sticks when I go hiking/park walking, and I usually just carry them, but they're very helpful if I want to stop suddenly and not lose my balance, if it gets cold and my legs tighten up, or if I need to step over obstacles. I'd recommend getting a pair.

My stride is also a little limited. I practice trying to extend mine by emphasizing proper mechanics....in my mind that's stepping down heal first and following through to the toe. Balance gets a bit more challenging this way so if need be, I'll use my hiking sticks for added security. I also practice whenever I'm at the grocery store and have the security of a cart. (My physical therapist once suggested I walk backward with a grocery cart; it's works different muscles.)

I also exercise and walk regularly. Even little things like going up and down on your toes when you're standing in a line can be helpful, at least it is for me. When I slack off, there's a noticeable effect in my walking. I find that the more active I am, the better able I am to cope with both the physical and emotional challenges of PLS.

Lastly, a year ago I had a baclofen pump implanted and that's been a great help. I love mine!

Good luck!
Traveler (Lauren)

 

[dancergymnast]

Thanks Lauren! Your post was really helpful. Having a walking stick wouldn't be as bad as a cane, so maybe I'll look into that.

I have problems with walking mechanics as neither of my ankles moves. So I can't really force a heel-toe mechanic, nor can I rock back on my heels or go up on my toes. It's quite frustrating because, as you can probably guess from my username, I dance. So not being able to go on my toes is really frustrating. I don't know if there really is any way for me to change my walking mechanic, but I haven't been sent to PT by any of the neurologists I've seen yet, since they are either clueless and send me elsewhere or claim it's psychological (even though three psychiatrists have said it's not).

I do keep active in general by walking (I live in a small city without a car, so I walk everywhere I have to go) and by working out on an elliptical I have in my house. I've always been a very active person, so until it's physically impossible, I will stay as active as I can.

Thanks again!
Dancer (Liz)

 

[hopeagainsthope]

Hi Liz
So sorry you are having such a tough time.
You say;"but I haven't been sent to PT by any of the neurologists I've seen yet". I was really shocked by that!
I think this is essential. I suppose once a diagnosis is certain, then these things will get sorted. Next year for you seems a long wait though.
I see 2 PT's on the NHS, one specifically for Neuro rehab and they have been brilliant. In many ways they have been the ones to tell me the best devices to use, I don't think I could clearly judge that on my own.

They have also helped me understand my walking gait and where I need to stretch and try and prevent the good muscles from getting stressed. I had developed very bad walking habits.

The walking poles are often mentioned by my PT,s as a great aid. I use crutches and a rollator, interchangeably. People take more notice of me with crutches, than the rollator strangely!
I have a wheelchair in the garage ready for the future/and or if I get too tired on a day out.
I find out and about I need to be more careful not to fall,as there are so many distractions. Also the cold sets my leg off like a board, making walking unpredicatable.

The falling you are having in the morning can be so dangerous. I take a while to warm up, but am very, very careful on waking to take it slowly to prevent falling.
Walking in this way is terribly tiring, as you have found, one uses so much energy. I have to just pace myself, can't do 1/4 of what I did 2 years ago

 

[Suzannah]

I second the hiking sticks. I bought some good ones for a trip to New Mexico this summer. We went on what turned out to be a pretty strenuous hike, and I was able to drag myself through it by using my arm strength.

I recently used them again on Halloween when I went trick or treating with my friend and her young son. I knew I couldn't keep up (I got left behind last year) so I dressed as a "hiker" and used my walking sticks. Ha. It worked really well.

Sorry you are falling so much. I fell getting out of bed a few weeks ago and it really scared me. Get yourself that PT referral!!

Suzannah

 

[ShiftKicker]

Yep. PT is important. A good one can analyse your gait and provide help with exercises for balance, ways of mitigating fatigue and recommendations for walking assistance. I credit my original physio with extending my balance and providing me with way to work around my physical deficits- allowing me to be as mobile as possible for much longer. I support the use of hiking poles.

 

[Bulldog29]

In my case, I went from occasional little trips (not falling, just catching my toe) about 3 years ago to more of a shuffle like you mentioned about 2 years ago. Over that time, my balance has gotten worse, and the falls more substantial. I currently only have the issue on my left side as the right is still unaffected. I was able to shake most of the falls off with just some big bruises to my body and ego. I got an AFO about a year ago, big custom job, but it would only fit inside a pair of Nikes that were too big for me. Otherwise it did me no good. I'm working with the UTSW orthotics clinic to find a smaller carbon fiber model that will fit in my shoe.

The big change for me was this last July, being hardheaded, I refused to take the elevator to go down one floor at our church and insisted on taking the stairs. I got all the way down to the very last step and tripped. Somehow, the entire weight of my body landed on my outstretched thumb. After putting off a doctor visit for a few weeks, I finally broke down and went to see an ortho surgeon who told me that I tore the ulnar collateral ligament completely off of the bone and had to have surgery the following day. A few days after that I got my first cane (from Fashionable Canes) and picked up a beautiful hand-carved rosewood cane in Honduras that I use daily. I still have spills, most the time from trying to carry too much or not using my cane for "short trips" but if I had known how painful the thumb surgery and subsequent recovery would be I would have started using the cane and elevators a long time ago. It's nice, people hold doors and give you a wide berth when they see the cane.

 

[ShiftKicker]

Hindsight is 20/20, eh? Oh dearie me. I hope your hand is healed up now.

 

[dancergymnast]

Wow, you guys are great. Thank you so much for all of your help!

It sounds like checking out some hiking sticks might be a good start for me. I do occasionally stay in contact via email with the first neurologist I saw (from way back when it was thought to be just a peripheral nerve problem from my previously broken tibia), and she wanted to see me anyway in January. I suppose I could ask her for a PT referral. Once things got more complicated with my other symptoms (and other things like my small herniated cervical discs were ruled out as causes), she told me that she wasn't prepared to handle a case like mine. I was frustrated back then because she had been so great, but I appreciate her honesty.

Bulldog, that thumb injury sounds so painful! So sorry you had to go through that. The "good thing" about my falls in the morning is that I had 15 years of training in how to fall properly to avoid arm and hand injuries, when I was a gymnast. Unfortunately we're not all like Simone Biles, and gymnasts usually spend more time falling than actually landing our skills hahaha. And I'm trying to avoid a cane or crutch as long as possible; on top of being a foreigner with blinding white skin, I'm also only 28 years old. While seeing someone around the city with hiking sticks in business casual clothes would be a little out of the norm, at least seeing young people with hiking sticks is common. I live on the northern route of the Way of St. James, so we get tons of pilgrims with hiking sticks passing through year-round.

 

[Bulldog29]

Haha, I hear you. I was a hockey player (goalie), it was my job to fall down a lot.

I was very self-conscious at first, I searched and searched for a cane that didn't look like I bought it at the corner drugstore. The one I found in Honduras is beautiful, hand-carved but understated-I get lot's of compliments on it.

I find it very interesting the amount of folks with MND that had it crop up after some kind of neck/back surgery or injury. I, myself, had fusion surgery on C5-C6 before my symptoms started becoming apparent. I've only found one study online that sought to uncover a connection. I still wonder if some yet to be found lesion caused by one of the various procedures I've had done is really the culprit. I know it's highly unlikely but I can still hope.

 

[traveler1]

Suzannah, I too dressed as a hiker for a Halloween party a few years ago. It allowed me to "blend", at a time when I was still very self conscious about my condition. I don't worry about it quite so much now. Being safe and mobile is preferable to being home and missing out on possible fun. (It's my manta!)

Liz, If you opt for hiking sticks you probably will get a few comments from strangers. Most people are just curious about them. I've had a few people joke, "Where's the snow?" (I'm in Southern California), but they're just being friendly. No worries. And a knight at the Renaissance Faire asked if I was an French invader with lances hidden in my sticks. (It was funny when he said it.) My favorite comment, however, came this summer when I was sitting in a Starbucks in Mammoth (a mountain resort town) and a group of backpackers asked me if I was doing the PCT (Pacific Crest Trail) or the JMT (John Muir Trail). I WISH I could hike those trails! But just being mistaken for someone who could, made my day! I went out and hiked about nine miles that day!

Lastly,I wanted to mention that I sometimes wear ankle weights around the house. They strengthen my legs without too much strain, and when I take them off, walking is a breeze. Disclaimer: I haven't mentioned to my doctor, but I can't imagine him objecting. He'd probably say, "If it works, go for it!"

 

[Bulldog29]

Hindsight is 20/20, eh? Oh dearie me. I hope your hand is healed up now.

You know, it hasn't and I'm starting to think that there is some correlation between surgery and MND symptoms. This is just my observation but it seems that a large number of folks with diagnosed MND started off having some kind of surgery that, ultimately exacerbated their symptoms. Even though I know that my fusion surgery did not "cause" my MND, I can't help but think it put it on a faster rail. I've read a study done abroad (I think) that tried to draw a correlation between spinal surgeries and MND diagnoses.

What makes me wonder is my thumb. I tore a ligament in my hand that connects to the thumb. My thumb itself was not injured. When I got my cast off, it was obvious that the surgeon cut through a nerve that goes to my thumb because it was numb (and still is). He suggested we do some rehab and see how it does since I was unable to pull my thumb straight and make the thumb's up sign. A month later I went back and same issue, my thumb does not flex up or down. Surgeon was perplexed and ordered MRI, nothing there. Then he said we could do exploratory surgery-I politely declined.

All of this to say: I wonder if the MND caused the nerves in my thumb to just die instead of growing back and if the fusion in my neck caused my symptoms to hasten their progression. Just a theory, I'm sure it's not that simple.