My Mobility Scooter

Multiple Sclerosis can cause mobility problems for some people. Unfortunately I am one of those people. I started having problems with my gait in 2004. My issues started off slow, but have progressed to the point where I can no longer walk long distances.

I started using a mobility scooter in 2011. I had been using a transport wheelchair in situations where a lot of walking was required (see The Wheelchair and Me). Although it allowed me to participate in activities I previously had to decline, I still felt limited. The transport wheelchair required a companion. I couldn’t go places by myself.

I had reached a breaking point. My limited mobility was impacting my quality of life. Something had to change. I headed to see my neurologist and obtained a prescription for a mobility scooter along with a referral to a medical supply company. After the company called to ask me a few questions about my condition, a rep arrived at my door with a scooter. It was compact and easy to navigate. I told him I’d take it and he said that was good because this scooter was mine.

I went to the library on my first trip out on my own with my scooter. Oddly, I didn’t have any anxiety about the excursion. I didn’t care how I looked gliding by on my new ride. Maybe it was the practice I’d had with my wheelchair. But I think what happened, why it was so easy to accept, was that it gave me back something I’d been living without: independence.

I’ve had to make some modifications to my home and my vehicle to accommodate my scooter. Although the particular scooter I use is designed for easy travel and can be disassembled into four parts, we had a lift installed in our minivan. I am not able to lift the separate parts on my own. Of course this was not cheap and my insurance wouldn’t cover modifications to our vehicle for accessibility. I purchased a used lift, which provided some significant savings. I was also able to get assistance from our van manufacturer. Most all vehicle companies provide assistance in the form of a rebate for accessibility modifications. Anyone interested in this assistance should check with their automaker to find out the eligibility criteria. Often cars must be new and there are time restrictions as to when the modifications must take place.

Loading the scooter into my van using the lift.

Loading the scooter into my van using the lift.

The other obstacle I had to address was how I would get the scooter in and out of the house. We have a single story home constructed at grade, so the main concern was doorway thresholds. I purchased two threshold ramps. One allows me to take my scooter in the backyard. The other allows me to go out into the attached garage. These ramps are inexpensive and easy to install. I purchased one at a medical supply store and the other online.

My scooter has changed everything for me. I can go anywhere on my own. With my scooter I can go shopping by myself, I don’t have to decline social activities that involve a lot of walking, and I even use it in the house when my legs just stop working. While I’d prefer to have the mobility that MS has taken from me, I don’t view using a scooter as a negative in my life. Missing out on activities and having limited independence was much worse. For me, the benefits of my scooter outweigh any hang-ups I ever had about using one.

Of course, there are downsides to using a scooter. I can’t always navigate everywhere I want with it, although I do pretty good in most situations. But the real bummer comes from the unwanted attention I receive from others. People are curious, I get it. I don’t mind a polite inquiry. Unfortunately, I encounter far too many people that say really stupid things. I’m still learning how to cope, but I don’t let it stop me. I’ve got places to go.

Using my scooter to explore Death Valley National Park.

Using my scooter to explore Death Valley National Park.

Comments About My Disability Test My Tolerance

For some people multiple sclerosis is an invisible disease, but not for me. I can’t hide it, because I have physical disability. I use several mobility aids including a cane, a device for foot drop, and a mobility scooter. I’m fairly noticeable I suppose. And I get a lot of unwanted attention in the form of comments, stares, and pointing fingers to remind me all the time.

I know that human beings are visual creatures. We are obsessed with appearances. So when people see me they first see features like my hair (because I’ve got so much of it), my face, and my disability, before my other attributes. But what empowers complete strangers to comment on my disability escapes me. I’m really not shocked by it anymore. I expect it. Lately though, I’m losing my tolerance. I don’t think a week goes by when I’m not accosted by some idiot who thinks they are clever.

I attended a work seminar last week. I used my scooter since it took place in a large building surrounded by a large parking lot. Inside, the seminar was held in a big open room with rows of chairs. I parked my scooter at the end of a row and sat down in a chair. Some guy squeezed by my scooter and me, sat down, and asked, “How did you get that chair out of Wal-Mart?”

“Huh?” I replied uncertain if I had heard him right. And then he repeated himself. I then pointed to my scooter and asked him if that was what he was referring to.

“Yes,” he replied. “Not that funny I guess.” I told him I’d add that one to my list. And he responded, “I’m sure you hear a lot.”

So why then? Why does this man, a stranger, make this comment while in the back of his mind he knows it’s off-color? He knows I field far too many comments just like this one.

Notice how the use of a camel in this photo draws attention away from my cane.  Unfortunately, not a viable solution for every day.

Notice how the use of a camel in this photo draws attention away from my cane. Unfortunately, not a viable solution for every day.

A couple months ago I had a work meeting away from my office. Again, I was using my scooter. In attendance were some people I have worked with before, and some were new faces. After the meeting, I said goodbye to the other attendees and exchanged a couple business cards. Then after I said goodbye to a person I had never met before he said, “Nice scoot-scoot.”

“Yeah,” I mumbled, now uncomfortable feeling my disability had been trivialized.

I know this comment wasn’t meant to cause harm, but it did. While it perhaps was meant to be playful, it was demeaning. And this is what I deal with all the time. I have had experiences like this for nearly 10 years now. It started well before the scooter when I first began having gait issues and I was asked if I had a “hitch in my giddy up” or if my feet hurt because of the appearance of my stride. It continued when I started using a cane, when instead of the cane being a visual explanation, I was asked if I was “gimpy”.

If all the people who’ve said things to me over the years could just live in my skin for a bit. See just how thick it has to be to live my life. See what I put up with. See how it feels. I struggle to not let these experiences have a negative impact on my life. I try to find humor and laugh at the audacity of these people, but it gets old. Plain and simple. People have to think about what they are saying to me. They have to be accountable and think about what is coming out of their mouths. Most of the time I don’t respond to the things people say. But am I doing them, or myself, any justice by letting their words go unchallenged?

I hope for a day when these insensitive comments end. Based on my experiences, it can be difficult for me to believe it will ever stop. But I had an encounter that does give me some hope. It took place recently when a four-year old girl engaged me in conversation, examined my cane, and said, “I like your stick.” What a brilliant little girl.

How I Manage Foot Drop

Foot drop is a condition that makes it difficult for a person to move their foot upward. When walking, instead of the foot flexing up, the toes and front of the foot can drag on the ground instead. Foot drop can be caused by a variety of conditions and is a common problem for people with multiple sclerosis. I began having problems with my gait in 2004. Several years later, part of the problem was identified as foot drop on my right side.

I was treated by a physical therapist who determined that I was a candidate for an ankle-foot orthotic (AFO). I was referred to an orthotist and was fitted for an AFO. At this point I was beyond excited to get some help with my foot drop. I wasn’t bothered by the idea of using an AFO. I was already using a cane and was pleased that something existed that could potentially help me get around easier.

When I went to pick up my AFO all that changed. The orthodoic barely fit into my sneaker. It was evident that I would need to wear special shoes to accommodate this contraption. The foot on my foot drop side already a half size larger than my other foot, I wasn’t pleased. What was most bothersome was that the AFO actually made it more difficult for me to walk. I sort of waddled from side to side as it was difficult for me to lift my new foreign appendage. I never used the AFO in public. I tried it around the house, but it only made walking more difficult. My balance was worse and I couldn’t feel any benefit using the orthodoic.

Soon after I saw a news story about a new device used to help people with problems like foot drop. It was a functional electrical simulation (FES) device worn on the leg just under the knee. The device stimulated the nerves sending a signal to the muscles to lift up the foot. I’d seen the ads in the MS Momentum magazine for these devices including the Bioness L300 and the WalkAide, but I didn’t really think of looking at using one to treat my foot drop. Since the AFO wasn’t working for me, this alternative now sparked my interest.

The news story led me to one of the hospitals near where I was living at the time for an evaluation. I was fitted with a Bioness L300 and experienced what was not a miracle but a huge improvement in my gait. I still needed my cane, but I moved along with significant improvement.

The evaluation determined that I was a candidate for the device. All I needed was a prescription from my doctor. And $6,200. I left that appointment and cried because I wanted that device more than I had wanted anything else in a long time. Although functional electronic stimulation devices such as the Bioness L300 are approved by the FDA, my insurance wouldn’t cover it. Luckily I was able to get financing and pay for the device with the help of several family members and my own savings.

I personally love my L300. It significantly helps my condition. Now I affectionately refer to it simply as “my leg”. I would highly recommend this device for people with foot drop.

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The Bioness L300

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Sassy and wearing “my leg”

The price tag of medical equipment can be an obstacle for many people. Here are some things to consider when trying to pay for costly medical equipment:

  • Don’t give up entirely on health insurance. Some companies will provide coverage or pay a portion of the cost. Submit the claim even if they say no at first. If they deny it, appeal it. Get a statement from your doctor and physical therapist.
  • Special credit cards like CareCredit offer financing plans with no interest for a period of time.
  • Contact your local chapter of the National Multiple Sclerosis Society. They may have small grants available or should know about other assistance programs in your area.

For a good overview on functional electrical stimulation devices for foot drop, check out the information on National Multiple Sclerosis Society’s website.

The Wheelchair and Me

Will I be in a wheelchair? That might be the ultimate question that someone who is diagnosed with Multiple Sclerosis wants answered. Gait problems are common in people with MS and as the disease progresses physical disability is possible.

When I was first diagnosed, I went through a phase of fear. I was certain that I’d end up in a wheelchair and couldn’t see any real future for myself. This bleak outlook contributed to the two years I spent battling depression after my diagnosis. After I started to move forward with my life, I refused the idea that I’d ever need to use a wheelchair. Then I started to have problems walking long distances.

A couple of people had suggested using a wheelchair when I declined social activities that involved walking longer distances. The thought was horrifying to me. I wasn’t using any type of assistive device at the time so the idea of hopping into a chair was inconceivable.

After I got married my mother-in-law gave me a transport wheelchair that she had used in her house after breaking her foot. At this point I was a bit more open to the idea, but not completely ready. Then one day my husband had planned a surprise. He wouldn’t tell me where we were going but said we would need to use the wheelchair. I was reluctant but curious, so we loaded up the fashionable red and black chair and headed out. We lived near Detroit, Michigan at the time and when we arrived downtown I saw the signs directing people to the dog show. Long a lover of dogs, I was thrilled with the surprise activity.

At the show my husband pushed me around in what we came to affectionately refer to as “hot wheels”. I didn’t have to worry about getting tired, or my legs just giving out. I took notice of other people in wheelchairs both young and old. I realized I didn’t care how I might appear to other people as I rolled by. It meant more to me that I could enjoy the event without worry. In fact, I was ecstatic when breeders plopped puppies into my lap who were therapy dogs in training.

After that day I welcomed using “hot wheels” when needed. We’ve done some cool things together including going to a baseball game, a vacation to Mexico, and to National Parks. I’ve also used it to participate in three National Multiple Sclerosis Society Walk MS events in two different cities.

“Hot Wheels” and me. Look close!

There have been times when I’ve dealt with insensitive comments from others while using a wheelchair. I’ve also encountered social situations where I’ve felt embarrassed and left out. I’ve also had my fair share of cries in that wheelchair, faced with the limitations imposed by the chair itself. Despite these things, I know that I’ve been able to experience more of life with it than I could without it.

Using Mobility Aids for Multiple Sclerosis: How I started using a cane

Some people with Multiple Sclerosis need to use assistive devices due to difficulty walking or balance problems. I am one of those people. And I wish I could say that when I started having trouble walking, I promptly went out and purchased the appropriate assistive devices and off I went. This of course was not the case. Today I use multiple mobility aids to keep moving, but it has been an emotional journey to get to where I am now.

I started using a cane regularly when I moved to another state. That’s what it took to gather the courage to use a cane at 29 years old. I had first purchased a travel cane when I was 28. It wasn’t too hard to use it around friends although I was entirely still self-conscious. When I went on a vacation, I happily used it to get about by myself. I tried it out at work one day after I injured my ankle when I had a fall. Everyone asked me what happened. Many people at my job at the time didn’t know I had MS, so I happily blamed it on the ankle. I decided I wasn’t ready to make the cane a part of daily life. My ankle would heal, the MS would remain, and I couldn’t bring myself to explain the cane any further.

With my move to another state, it was like I started a new life. I wasn’t subjected to questions about why I one day showed up to work using a cane. In this new place, I had always used it. Sure, people wondered but they didn’t ask. They didn’t know me well enough. Wait, that wasn’t it. I’ve encountered plenty of strangers who have had no reservations about blurting out whatever popped into their heads. “You’re too young to use a cane!” a flight attendant once proclaimed as I boarded a plane. She was right. I am. As most of the world has shown me, it can be very difficult for people to comprehend a young, healthy looking person as having a physical disability.

Perhaps why no one asked had something to do with my confidence with my new appendage. I felt steady and safer than I had for too long without it. I felt independent and unafraid. Eventually the people in my new home asked me why I used the cane. Depending on their approach, I gave them the full explanation of my disability. Some others, I admit to offering less commendable responses.

I now have three canes; two for daily use, although I favor one over the other, and a folding one for travel. Sometimes I think I want a fourth cane. I now eye them in stores or in the hands of others. I evaluate their qualities and consider them as I do a pair of shoes. It took a new start in a different place for me to finally be able to own up to the fact that I needed to use a cane on a daily basis. Now I think I was silly to wait so long, but I’m a different woman now. I’m more comfortable with myself and my MS. Still, I wish that I would have accepted it sooner. It might have prevented a few falls along the way.