Tag Archives: Bioness

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.

My Bionic Leg, Part 2

The first step in getting a Bioness functional electrical stimulation (FES) unit is to go through a free assessment with one of their reps.  It lasts about an hour and is performed at a nearby physical therapy facility.  The purpose of the assessment is for you to try it out, get your questions answered and see if it might work for you.  That last point is very important.  As I mentioned in my last post, insurance doesn’t typically cover FES for MS and it is quite pricey.

I first tried the unit with just the lower cuff that is worn beneath the knee.  I then added the thigh band with the contacts set up to stimulate my hamstring.  One very important item to note:  If you have difficulty walking because of weak hip flexor, this is not going to help you.  My left hip flexor is a little weaker than my right, but only slightly.

I went to the assessment with hopeful optimism.  A review of Bioness’ website and youtube showed numerous before and after videos that are downright miraculous.  They show  people struggling to crawl along with a walker or stand unassisted, that can then amazingly walk normally with the Bioness.  Several of the transformations are so dramatic that it is hard to believe they are not fake.

As a refresher, the Bioness L300 Plus has four components:  A sensor in the heal of your shoe that triggers the cycle, a cuff worn just beneath the knee which delivers an electrical shock to your shin causing you ankle to flex upward, a band on your thigh which sends a shock to either your quadricep or hamstring, causing contraction and a remote control to turn the unit on and off and adjust the intensity.  All four communicate wirelessly.  I wore the thigh unit on my hamstring as I have a problem with reduced control at the end of knee extension, sometimes even resulting in hyperextension.

What was the verdict?  Mixed with a tilt toward positive.  It wasn’t magical.  I didn’t instantly go from limping to running.  However, there were some real positives.  First off, walking was much easier.  Before MS, I didn’t have to think about walking.  Over the last year, I’ve increasingly had to consciously think about each movement in a step.  Push off, lift leg, lift toe, put heel down, roll to toe etc.  Mentally, it is very tiring.  I was thrilled that with the Bioness taking over some of the steps, I could go back to walking without having to think about it so much.  This helped tremendously with my endurance.  Also helping was that the Bioness made it easier to walk in a more even gait.  It was eye opening to me just how much I was favoring my good leg.  This caused the limp along with some hip pain.  With the Bioness on, I was placing the weight much more evenly between my two legs.  My walking wasn’t normal, but it was more even, less painful and overall easier.

The bottom line….  I’m still not sure that it is worth $10k yet, but the assessment was positive enough to warrant spending $1k for a month to see.

My Bionic Leg, Part 1

Would you intentionally subject yourself to electrical shocks if it helped you walk better?

My internet search for an aid that can help me walk better and continue to hide my disability led me to something called functional electrical stimulation, or FES.  These are devices that you wear on your leg which provide shocks to your leg muscles, causing them to contract at the appropriate point of your gait.

With my MS, the signals to and from my leg muscles are disrupted at a point in my spinal cord where demyelination has occurred.  Since the signals are not coming through normally, the muscles are not triggering normally, resulting in weakness and reduced coordination.

There are two leading devices on the market; Bioness and WalkAid.  Both work similarly.  Both have their loyal advocates and critics.  I will attempt to describe their differences, as I see them.

The first difference is with the Bioness L300 Plus.  Both devices have a cuff which is worn just below the knee and induces dorsiflexion, preventing “foot drop”.  However, the Bioness Plus also has a band that goes around the thigh assisting with control of the knee joint.  Oddly, it can only be worn to stimulate the quadriceps OR the hamstring, but not both.  I would have thought that they would have made it to stimulate both at the appropriate stage but they didn’t, at least not yet.  Both devices are expensive and insurance typically doesn’t cover them for MS.  So you are looking at ~$6k to start plus ongoing supply costs.  Adding on the Plus thigh unit for the Bioness bumps you up to almost $11k.  That’s a lot, but is it worth it?

Bioness has a heel sensor that is worn inside your shoe that tells the computer when you are starting your step and when you are putting your foot back down.  The walkaid has a motion sensor in the unit that measures the angle of the lower leg to determine the point where you are at in your stride.  What is the significance?  One fewer piece to the walkaid and the ability to go barefoot.  However, the Bioness may work a little better if you are not walking forward, i.e. stepping sideways, or if your walking speed varies a lot.

The Bioness is more attractive in my opinion.  It just looks like a more advanced modern product with the notched cuff and low profile electronic unit.  The walkaid looks a little less finished and has an ugly pack strapped on it.

The battery pack, while not attractive, does have a functional advantage.  The Bioness has rechargeable batteries that must be charged every night (they last approximately 12 hours).  The walkaid just uses a single disposable AA; much more convenient.

The Bioness has a small remote control that can fit in your pocket to turn it on/off and make intensity adjustments.  The Walkaid requires lifting up your pants leg to turn the unit on and off directly.

Summarizing:  The WalkAid is one unit which can be worn barefoot, no remote, has disposable batteries and is triggered by the lower leg angle.  The Bioness has a heel sensor and remote that work wirelessly, must be recharged every night and has an optional thigh unit.

Bioness will let you try it for a month for $500, $1000 if you need the thigh band as well.  Some distributors of WalkAid will let you try it for two weeks for free.

For me, the choice was easy. My knee control is compromised and the addition of a thigh unit made a big difference and thus, the other factors irrelevant.  Bioness wins round 1.