Monthly Archives: January 2016

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.

Bracing Myself – Using an AFO part 1

As mentioned in recent posts, my disability has progressed to where I often have a noticeable limp.  After a fair amount of research online, I have settled on two potential aids  to help with my gait; an AFO and FES (functional electrical stimulation).

AFO stands for Ankle Foot Orthosis.  Most AFOs are L shaped braces that have a plate underneath the foot attached to some type of post secured to the lower leg.  This provides some support for the ankle.  There is also a KAFO that extends to the knee as well.

Many people with MS develop a condition known as foot drop.  With foot drop, weakness in the lower leg makes it difficult to lift the toe while walking.  This can cause a plopping down of the sole once any weight gets put on the heal.  Worse yet, it can cause tripping over one’s toes making normal walking difficult.  The AFO keeps the ankle more rigid which in turn helps lift the toes while stepping.

AFOs can range from a few hundred dollars or less, all the way up to ten’s of thousands.  The majority of top AFOs seem to run between $200 to $700.  If it would help me walk more normal, it would be well worth it.  To boot, insurance will often cover the cost of an AFO.

A quick search on Amazon found that I could buy one for only $25, no prescription needed.  As an added plus, I was able to find a black one that would enable me to wear it conspicuously at work while wearing a dark suit.  I ordered one just to try it out.

It actually helps.

My leg is more solid and stable with the AFO.  Interestingly, it helps my knee the most.  I have some weakness in my left knee.  Standing up, it now hyperextends a little.  After standing for a while, it starts to hurt.  Because of the angle of the “L” of the AFO, my knee does not hyperextend while wearing it.  This helps with my gait and really helps with my endurance while standing.

I would like to invest in a better quality AFO; one that is custom made to fit me and optimally provide the right support in the right places.  My physical therapist has recommended that I see a local orthotist.

All of this having been said, there is one thing that bothers me.  If I am wearing the AFO most of the time, will I begin to rely on it, causing further atrophy and weakening?  I’ve been told no by someone.  Granted, he was looking to sell me a $7k one.  I’m skeptical.

The other solution under consideration should take care of this concern.  That will be the subject of my next post.

Is the end of my secret in sight?

When does one come out of a closet?

My walking and balance are deteriorating. Unfortunately, at a fairly quick pace. While my MS is still a secret to all but my closest family, the end of that is starting to be in sight. My walking has a limp that varies from slight to crippling. To date, I have gotten away with telling lies when I am asked by coworkers why I am limping. However, I can’t claim to have hurt my knee exercising the night before etc. forever.

I am still strongly of the opinion that public knowledge of my disease will negatively impact my job, career and earnings. So my task then is to try and walk as normal as possible, for as long as possible.

That having been said, my wife has presented me with another perspective. I am not going to be able to hide this forever; maybe not even for much longer. She felt that I should focus on functionality as much as possible, not necessarily on hiding it as long as possible. It was hard to argue with her. While income is important, so are things like going on cub scout hikes with my son and playing in the park with my daughter.

So how do I improve my walking and have a more natural gait with greater endurance?  I have thought of a few things.  First, I tried ampyra.  But it didn’t work for me.  Secondly, I signed up for physical therapy.  Working with a physical therapist, we will focus specifically on trying to maintain as normal of a gait as possible.  Lastly, regrettably, I have decided that the time has come to consider some type of assistive device.

Luckily, there are a variety of options available for me to try.  In the upcoming posts I will be telling about my experiences with a brace and with electrical stimulation.  Stay tuned!