Category Archives: Mobility Equipment

Is it Time to Treat Your MS to a Scooter Ride?

To scoot or not to scoot? Is is better to drag your legs around for as long as you can or to give in and get yourself a set of electric wheels?

That decision prompted this vent on a multiple sclerosis Facebook group recently:

“I’m just wondering if anyone has this happen to them. Every time I go to the store I have someone roll up on me in their electric scooter and tell me I need to get one. Every time my response is the same “I refuse to use one until I absolutely have no other choice” and then they shake their head at me like I’m crazy. Granted I know how I look pushing my walker (which I refused to use for a long time and just clutched onto walls) and dragging my dead weight of a right leg behind me, red faced and sweating with the effort, but for now I am able to walk so I do, is that really such a bad thing?”

For many years I felt the same way as that writer. It took one tripping fall too many, however, to convince me to find some walking help. I began using a cane; first a fold-up, used only occasionally, then a nice looking wooden cane that I used all the time. That was in the late 1990s, close to twenty years after first being diagnosed with MS.

I started using a scooter in the summer of 2000, when a colleague suggested that I rent one to get around the large Staples Center in Los Angeles, and Philadelphia’s First Union Center (now the Wells Fargo Center), while covering the political conventions being held in those cities. Riding, rather than walking, gave me the mobility that I needed to do my job. I scooted whenever I was at those venues and at the the end of each long working day I parked, plugged the scooter into its charger and walked out of the convention center. Without using the scooter someone probably would have had to have carried me out.

Four years later, my wife convinced me to buy a scooter of my own. My Pride Sonic (now called a “Go-Go”) separated into 4 parts. The heaviest was about GoGo-Sport-3W-Red40 pounds so I could disassemble the scooter, throw it into the back of my SUV and take it to work with me. That gave me two benefits, I could move around our news bureau, which covered 3 large floors, faster than anyone else and I also saved a ton of personal energy.

That Sonic also came along on cruises to Alaska and the Mediterranean with my wife and I but, eventually, it became too heavy and cumbersome to travel with.  So, enter the TravelScoot. This is a 35 pound scooter that can be folded

Two scooters

With another cruise passenger in Dubrovnik

like a baby stroller. I can ride it right to an aircraft door where it’s stowed, folded in a coat closet or unfolded in the cargo bay, and it’s returned to me at the door when we arrive. I still use a larger scooter, now a Go-Go, around town and to walk our dog. (And when we go grocery shopping, my wife rides the Go-Go and I ride the TravelScoot). But the TravelScoot is, as the name suggests, primarily my travel scooter. It’s wheeled me around the ruins of Ephesus, Turkey and been “tendered” from a cruise ship onto the shore at Santorini, Greece. 

I’m not advocating for a particular brand of scooter. An on-line search will turn up dozens, at prices ranging from around $900 to $4,500 or so. And you’ll probably have to pay for it yourself. Unless your doctor will certify that you need an electric scooter to get around in your house it’s unlikely that Medicare, Medicaid or your insurance will pay for it in the U.S.

I am, however, advocating that you not allow pride, vanity or a strict “use it or lose it” philosophy to stand in the way of getting yourself some wheels. It really helped to make me more independent and it made a big difference in the qualify of my life.

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(This post first appeared as my column on http://www.multiplesclerosisnewstoday.com)

 

Some FAQs about the Bioness “L300 Go”

(This is a sightly updated version of a column of mine that first appeared on http://www.multiplesclerosisnewstoday.com)

Earlier this year Bioness announced that the U.S. Food and Drug Administration had cleared its new “L300 Go” functional electronic stimulator (FES). It’s an upgrade of the original “L300” that I’ve been using for more than five years. Without the “L300” strapped to my left leg it’s difficult for me to walk more than 25 or 30 steps, even with two canes.

The “L300” sends a low-intensity electrical pulse down a nerve that runs from my knee to my ankle each time I begin trying to lift my left leg to walk. That pulse forces my foot to flex upward from my ankle, so my toes don’t drag. (What the docs call “foot drop“). The electrical pulse replaces the signal from my brain to my ankle that’s blocked by my MS.

When Bioness recently announced the FDA clearance of the “L300 Go” a news article was published on the Multiple Sclerosis News Today web site. That story generated several questions from readers, who wanted a better understanding of the “L300 Go” and how it’s different from the “L300.” So, I’ve been in touch with the folks at Bioness and will try to answer some of the questions that I’ve seen posted.

What’s the difference between the “L300” and the “L300 Go?”

As I understand it, the “L300 Go” allows a therapist to use 3-D motion detection system to better adjust an “L300” to make it more responsive to a person’s gait. The 3-D motion detection seems to be the most important new feature. This motion detection system also allows “L300 Go” to be used without the sensor that the “L300” requires to be placed your shoe.  That means you’re able to change shoes without having to move a sensor, and even use the device barefoot! (A competitive device, called the “WalkAide,” has had this feature since it came on the market around the same time as the “L300”). The “L300 Go”also responds to motion somewhat faster than the “L300.”

I’ve been using the L300. Does FDA clearance mean that Medicare and insurance will now pay for it?

The FDA clearance was for a new product, the “L300 Go.” The “L300” was cleared by the FDA in the U.S., and received European Commission approval several years ago. The recent clearance doesn’t change the fact that, though Medicare has approved the L300 for use by spinal cord injury patients, and at least one nervous system disease, Medicare has never approved the “L300” for use by MS patients. As we all know, insurance companies aren’t likely to approve something that Medicare hasn’t approved.

Will Medicare pay for the “L300” for MS patients in the future?

A spokesperson for Bioness tells me that “veterans and their families already have access to our technology as a covered benefit through the Veteran’s Administration. We continue to work with the Centers for Medicare & Medicaid Services (CMS), as well as private/commercial insurance companies, to expand coverage criteria to include more of their beneficiaries.”

Will the price of the “L300” drop now?

I doubt it. I haven’t seen what the price will be for the “L300 Go,” (if that’s even been determined), but Bioness has said it will give a price break to current “L300” users who want to “upgrade.”

Why do you say the FDA “cleared” the “L300 Go,” rather than “approved” it?

It’s a technicality. The FDA “approves” new drugs but it “clears” the use of new medical equipment. Don’t ask me why.

 

“Bracing” Yourself for MS

(This post first appeared as one of my columns on http://www.multiplesclerosisnewstoday.com)

One of the MS blogs that I follow is written by Jen, who lives in England.  It’s called Tripping Through Treacle.  (Treacle is a thick, molassas-like, syrup). Doesn’t that neatly sum up the lives of many of us in just three, alliterative, words?  From MS newbies to old timers like me, we worry (or have worried) about tripping.  Many of us try to do something about that, however, and one of the options is to wear a brace.

AFOs

The formal name for these uncomfortable looking things is Ankle-Foot Orthosis, or AFOs.  Jamie, who writes the Multiple Experiences blog, is trying an AFO right now to help with her foot drop, which is what trips up many of us.  Well, she’s sort of using one. Jamie has told her blog followers that she “hates” the brace.  She finds it inconvenient to use, especially because you need to take off your shoe, slip the AFO into that shoe strap it onto your shin, and put your shoe back on when you want to walk with it.  This can be particularly cumbersome if you need it on your right leg, the leg that you use when you’re driving.  Jamie says she’d rather use her walker but she plans to give the AFO another try in a couple of weeks with help from a physical therapist.

Working with a PT or, better yet, an orthotist is important.  An orthotist is a specialist in making and fitting orthosis.  After getting a prescription the orthotist will measure your leg and foot and the AFO is then custom-made from those measurements.  Then the orthotist fits, tests and adjusts it before sending you back out into the world to walk with it.

afos

Cheryl’s AFO collection

An AFO is typically made from metal or plastic but some are made of strong, but lightweight, carbon fiber.  Cheryl Hille, an MS patient who runs marathons and about whom I wrote several weeks ago, has half a dozen custom-made AFOs to use in various situations.  I used an AFO a few years ago for a short period of time, (though I wasn’t running any marathons), until I “upgraded” to a Bioness L300 device.

FES Units

The Bioness L300 uses a cuff that straps to your leg under the knee cap.  A pad in the heal of your shoe senses when you begin to try to raise your foot.  It then sends a programmed, l300low-level electrical stimulation that activate the nerves and muscles that raise your toes and lift the foot. (The process is known as Functional Electrical Stimulation, or FES). You’ll need a prescription for the L300 and a Bioness approved therapist will need to fit you and adjust the unit.

I’ve used an L300 for about five years.  At first, it worked so well that I was able to walk a city block without tiring, something that I hadn’t been able to do previously.  With my cane I even walked up a grass covered hill, which was amazing.  Alas, I don’t walk as well, over all, as I did five years ago and I’m now using two canes.  I can’t do that hill anymore but without the Bioness strapped to my leg I wouldn’t be able to walk more than about 50 feet. I really depend upon it. The L300 can also be put into a “test” mode, which will trigger the stimulus while you’re sitting in a chair, so that you can exercise that leg muscle even when you’re not walking.

A similar unit is made by WalkAide.  Unlike the Bioness unit’s sensor the WalkAide cuff, itself, senses your movement, so you don’t have to wear a shoe.  I tried a WalkAide, briefly, when I was trying the L300 but I didn’t feel as stable with it as I did with the Bioness unit.  Remember, both with AFOs and these FES units, each MS patient is probably going to have a different user experience.  I’d recommend taking each device for a test walk, or two, before you buy.

Naturally, none of these devices are inexpensive.  I think my custom-made carbon AFO cost about $800, which included the services of the orthotist.  The L300 was selling for about $5,000 five or six years ago, but I was able to get a slightly used one for around $3,000.  Insurance covered most of my AFO but it didn’t cover any of my FES.  (That’s a rant for a future column).

If you’d like more information about all kinds of mobility devices, checkout the (U.S.) National MS Society’s web site.

 

MS Marathoner: 1 Continent Down, 6 to Go

(This is an update of my column posted last week on www.multiplesclerosisnewstoday.com)

Tripping, falling and bloody knees.

Been there. Done that. (Who with MS hasn’t)?  But this wasn’t me.  This was Cheryl Hile and it was happening to her as she was running a half marathon in Carlsbad, California.

Cheryl had been running marathons for half a dozen years when, in 2006, she was diagnosed with Multiple Sclerosis.  She says the diagnosis left her “devastated and very scared.”  She was also depressed.   Cheryl dealt with that depression by continuing to run.  But then, after that stumble in Carlsbad, Cheryl’s neurologist told her that it happened because she had foot drop…when her right foot should have been raising it was dragging.  And then the doctor tacked on a suggestion: lower your expectations, shafose warned.

“That p***ed me off,” Cheryl told www.sdnews.com.  But rather than lower her expectations, Cheryl raised them.  Cheryl worked with an orthotist who fit her with a light, durable carbon fiber brace, called an Ankle-Foot Orthotic (AFO), that held her dropped foot at an angle that would allow her to run.

Since then Cheryl has completed 30 half marathons, 31 full marathons and one 30 mile race with an AFO on her leg.

7 in 7 in 12

And is she’s doing more.  Cheryl has made it a goal to become the first person with MS to run icheryl-cape-town-2n seven marathons…on seven continents!  And, she plans to do all seven in just 12 months. Take that, “Doctor No”!!

Cheryl completed first of these seven marathons in Cape Town, South Africa  last Sunday, with a time of 4 hours, 51 minutes and 51 seconds.  Next comes Buenos Aires in October, Honolulu in December, Antarctica in January, Tokyo in February, Vienna in April and she plans to finish in Christchurch, New Zealand in June 2017.

 

Running Slower and Looking a Bit Strange

In addition to foot drop, Cheryl had four exacerbations in one year that left the right side of her body much weaker. At one point she could only lift her right leg an inch off the

cheryl

ground. She recovered a bit and can now lift it about 4-5 inches. She says her foot drop coupled with a weak thigh makes her a much slower runner. Cheryl pushes off with the left side of her body and, she says, the right side of her body is basically “along for the ride. I have a funny gait and my right leg swings out, so watch out if you are running next to me!”

It’s More Than a Marathon for Cheryl

“The primary reason I am doing this journey is to give back to the MS Society,” Cheryl wrote me in an email.  “They educated me about the disease and encouraged me to keep moving when I was first diagnosed and depressed. I want to be a role model for newly diagnosed to encourage them to do what they can and to never give up!”

So, on hercheryl-cape-town-1 CrowdRise web page, where she’s raising funds to cover this expensive journey, there’s a link for direct donations to the National MS Society.  Cheryl says that once she’s reached her travel-expense goal she hopes to raise at least another $10,000 for the Society.

It’s not an inexpensive journey.  Cheryl hopes to raise close to $60,000.  Her biggest expense will be the marathon in Antarctica – nearly $8,000 per person.  “I really do hope I make this fund raising goal,” Cheryl told me. “I am a frugal traveler and I am taking measures to cut costs.” When Cheryl and her husband landed in Cape Town at 9:45PM, for example, instead of going straight to a hotel for that first night, they saved money by staying at a cheapo motel across from the airport.  “As long as I have a teapot or kettle in my hotel room,” she says, “I know I can have oatmeal for breakfast and gnocchi for dinner!”

We’ll keep track of Cheryl Hile on The MS Wire and wish her the best as she consistently pushes toward the finish line.

MS bandana

Are You Ready to Enjoy Summer?

I love the summer.  I also live at the beach.  So, I’m just asking for trouble.

I can’t help it.  Being out in the sun is one of my greatest pleasures, followed by hanging around in the swimming pool at our condo.  Note that I said in the pool.  Staying in the cool water helps offset the problems that summertime temperatures create for those of us with MS.

Even if you don’t have a pool handy, there are still ways of staying cool in the heat.

The national MS Society has lots of good hot weather hints on its online magazine.

And there’s a great review of thirteen cooling vests on the web site www.activemsers.org.  Some of these vests, of course, can be expensive but the MS Society suggests that you try seeing if your insurance will cover the cost as an item of Durable Medical Equipment.  The insurancooling bandana 4-shotce code for that is E-1399.  If your claim is denied the Society also has instructions on their web site for filing a health insurance appeal.

For me, a simple and inexpensive neck bandana has worked well.  When I exercise in the heat I like to use it around my neck. It only costs a few bucks and it usually keeps its cool for a few hours.

Have you wanted to get onto the beach but walking though the sand is impossible? Most beaches are accessible, one way or another.   Ocean City, MD, where I live, has several beach wheelchairs which you can borrow.  Many other beaches have the same set-up. The beach patrol usually coordinates the chairs.  At some beaches you can reserve a chair while at others it’s first-come, first-served.  Of course, you need to have someone to push you. ed on beach buggy If you fly solo, or if you spend a lot of time on the beach, you might want to consider buying something similar to what I use.  (Obviously, this isn’t a summer picture but it’s all that I have).  This beach buggy was made by a fellow in California who’s a quad.  It was expensive, and it took him forever to build and ship it, but it gets me out on the sand, it’s loads of fun, and it’s fast!.  I don’t want to make a recommendation but you can find several folks who make these if you search on-line.  In San Diego, California you can reserve a power beach chair like mine, to use free of charge, at several beaches.  For more info, check with Accessible San Diego at: 619-325-7550.

Some beaches, like a few in New York City, even roll out a blue carpet to make your access easier.nyc beach ramp

Here’s a look at some accessible beaches, near and far.

At the beach I can walk into the water if a couple of people help me and the surf is light.  The undertow makes getting out more difficult.  But if you’re not that mobile Adam Lloyd, who writes the Gimp on the Go web site, has come up with a unique idea.

 So, one way or the other, there are ways to have fun in the sun while staying cool.
Have some ideas of your own?  Let us all know with a comment.

 

 

 

Are wearable robotics in the future for MS gimps?

You have MS but you have some mobility.  You need help to walk because your legs are weak or stiff, and your balance is off, but canes don’t give enough help and braces are too cumbersome or limiting.  How great would it be to have something that’s relatively lightweight that you could wear and would help your legs move? That’s what a group of roboticists, mechanical and biomechanical engineers, software engineers, physical therapists and even apparel designers (!) is trying to create.exosuit

It’s called exosuit technology; form-fitting, fabric-based designs that are lightweight and non-restrictive. They use flexible sensors on the knees, hips and ankles, and compact, powerful motors, packaged in a belt, to help a patient walk with greater ease and stability.

The Wyss Institute for Biologically Inspired Engineering at Harvard University has just teamed with ReWalk Robotics Ltd to accelerate development of the Institute’s exosuit technologies.  “There is a great need in the health care system for lightweight, lower-cost wearable exoskeleton designs to support stroke patients, individuals diagnosed with multiple sclerosis and senior citizens who require mechanical mobility assistance,” says ReWalk CEO Larry Jasinski. “This collaboration will help create the next generation of exoskeleton systems.” Continue reading

Segway + Wheelchair = Ogo

Why didn’t someone think of this long ago?

The “Ogo” is the coolest thing I’ve seen for getting around when your legs can’t do the job. And you don’t need your arms, either.  Just bend in the direction that you want to travel, just like riding on a Segway, and off you go.

ogo-features

You can even change tires and travel off-road…through the woods or down the beach. The prototype can travel more than 20 miles (40 km) on one charge of its lithium-ion batteries and its adjustable speed can hit 12 mph (20 kph).   I can tell you more but a video of this is worth a thousand words.

Continue reading