Tag Archives: Physical Therapy

Coming out of the closet with my MS, just a little bit. Sort of.

If you have read my posts, you know that keeping my MS a secret has been a critical goal of mine.  Unfortunately, my walking has deteriorated to where I can no longer hide it.

The first colleagues to notice were told that I hurt my knee or ankle.  That bought me a little time, but could only be used as a temporary excuse.  This evolved into saying that I have a bad leg and it’s acting up.  That’s true.

When it wasn’t getting better, I got more questions of what was wrong with it.  I tell people something along the lines of not being sure what caused it, but that it appears to be nerve damage.  This is also true.  It has the added benefit that while nerve damage can heal, it takes a long time typically.  I don’t know how much extra this bought me.  Maybe a year or two?

People have also noticed the antenna attached to my shoe for my Bioness unit.  It’s prompted a number of funny inquiries like “what is that? are you under house arrest?”  “are you a child molester or something?”  At that point I explain the bad leg, nerve damage and the therapy device that I am wearing to exercise it.  The typical reaction is to tell me about their father who had drop foot, their brother who had a spinal cord injury and uses a similar device or the story of how they used to go to physical therapy for their “fill in the blank”.

In a way, it’s a little bit of a relief not to have to completely hide it.  So why not just come clean and tell everybody that I have MS?

Two reasons.  The much less significant reason is that I still want people thinking of me as me, and not that guy with MS.  Being known as the guy with the limp isn’t great either, but maybe it’s a little better.

But the biggest reason is to protect my job and income for as long as I can.  As I’ve mentioned in other posts, I work in a very competitive shark tank.  MS can cause cognitive issues in some people.  Someone will eventually look it up online and read that.  The truth is that I have been lucky and haven’t suffered that particular symptom at all.  In fact the MRIs of my brain look very healthy and I still consistently rank well in any mental measure that I can track.  But eventually I am bound to say something in a meeting that may not be exactly sharp, and I am worried that someone will jump to the conclusion that it’s my MS, when they wouldn’t think anything of it otherwise.

So for now, I have a bad leg with some nerve damage.

Bioness L300 Plus Review – Walking a straight line again!

My bionic leg, part 3……

Six weeks into my four week trial, I have decided to purchase the Bioness L300 Plus.  Is it a magic pill that cured my MS?  No.  But possibly second only to finding a great MS doctor, it’s the best thing that I have ever done to treat my MS.

First, the $$.  My insurance denied it.  This was no surprise.  They will approve it for spinal cord injuries but not MS.  Since I am getting the thigh unit as well, it will cost approximately $11k out of my pocket.  They offer 0% interest for 18 months, but that is still a lot.

For me at least, it is totally worth it.

With the device on, I can walk close to normal again.  For some period of time each day, I can walk completely normal.  Eventually the fatigue catches up and overpowers the benefit.  I expect that over time it will take longer to hit that point as my endurance and strength continue to come back.

It is critical to work with a physical therapist who is familiar with the unit.  We tweaked and made fine tuning adjustments to the unit each of eight sessions in my trial month.  Each time made my walking a little bit more natural and easier.  The one month mark was a dramatic improvement over day one.

It has turned back the clock at least a few years on my disability.  It has also added back considerably to my quality of life in that it actually feels good to walk again.  Two months ago I dreaded just walking from my house to the street as it had gotten so uncomfortable and awkward.  Now I love going out for longer walks again.  I avoided taking my kids to the park.  Now I can’t wait to go with them.  Cub Scout hikes were something that I feared.  Now I am excited to go on them with my son.  I intentionally park my car farther away in parking lots from my destination so that I can get a little exercise now.

I was favoring my good leg so much that it was causing pain in my hip.  Also, my bad leg was hyperextending at the knee causing pain there as well, and who knows how much damage.  Both pains are completely gone.

It has truly turned back the clock for me.

When my disability started to progress, the first thing to go was my ability to walk heel to toe and eventually to walk in a straight line at all.  I dealt with my compromised balance by gradually adopting the wide stance walk.  A few days ago, I was excited to yell to my wife to check it out! as I walked down a thin line on our floor with hardly a wobble.  I can even do the heel toe thing again.  It’s the first time that I have been able to do this in a couple of years.

I know that it’s not a cure.  My disease will continue to progress.  But at least for some period of time, I feel like my old self again.

A pain in the neck

The mysterious tingling leg, part2…

While I was waiting the six weeks for my nerve induction test (EMG), I developed a sore neck.  It was like a stiff neck that you might get from sleeping in a bad position except that it didn’t get any better after a few days of a heating pad like it should have.  The likely culprit was my baby daughter and the way that I was holding her to feed her a bottle.  In the end, this little culprit turned out to be a savior.

My doctor prescribed physical therapy for me.  I have mixed feelings about the PT.  Learning a few exercises primarily for my traps was not a bad thing.  However, it wasn’t much more than going to a personal trainer for a few exercises and getting a massage.  The massage of my neck felt good, but I question the long term benefit of the treatment.  After a few weeks of repeating the same exercises that I could easily do at home, I did just that and stopped going.

Then one day while I was holding my daughter and feeding her a bottle I noticed something very peculiar.  When I turned my head down and to the left to look at her, I felt the tingle in my thigh.  Every time that I moved in that direction the same thing occurred.  I mentioned it to my wife who mentioned it to our doctor.  “Have him come back in to see me immediately”.

I thought that I had solved the mystery.  It must be that I have a pinched nerve in my neck.  That might explain both the perpetual stiff neck and the tingling leg.  My doctor disagreed.  He explained how it was unlikely because the nerve fibers going down to the leg would be buried well inside of the spinal cord at the neck.  A sensation in my arm or a pinched nerve in my lower back might make my idea more plausible, but not a neck-thigh combo.

I had no other symptoms at all and was basically very healthy.  My doctor suggested sticking with the PT and watching it closely to see if it gets any better or worse.  Then, as I was walking out of his office, he called me back.  “Let’s not wait.  Let’s get an MRI done and see what’s going on in there”.

Good call Doc.