Me, Multiple Sclerosis, and My Mystery Machine
“Look, Grandma, there he goes”, exclaimed a young
girl as she and her grandmother were getting out of
their car as I went whizzing up their street on a
usual ‘fun run’. Later, my four year old grandson
captured several peoples attention at our recent yard
sale, as I was leaving the driveway on the Segway to
begin another outing, when he began to shout “Go
grandpa, go grandpa!” over and over. These reactions
seem to typify many others as they first see me zip by
on the Segway. Positive reactions such as these fuel
my enthusiasm for my newly found sense of mobility and
self assuredness. The acquisition of a Segway HT has
literally changed the way I look at things and added
immensely to the way I cope with having such a
debilitating disease.
I am a 57 year old male who was diagnosed with
Progressive Multiple Sclerosis 7 years ago, although
the symptoms had been evident for many years. My
disability has progressively affected the right side
of my body , leaving parts of it extremely weak. My
right arm is almost useless and my right leg becomes
weaker as it is used throughout the day. Usually I
walk short to moderate distances with the assistance
of a cane, but recently even the cane hasn’t kept me
from stumbling. My condition had progressed to the
point that my wife and I had begun to look at
acquiring a power scooter. I faced this decision with
much consternation and duress. I wanted to avoid this
as long as possible. It seemed like a winless
situation. First, we were looking not only at the
initial cost of the scooter, but further, at the
additional expense of a hydraulic lift device for my
SUV in order to be able to transport the power chair.
My insurance would not cover the cost of a scooter and
lift so I knew that I would be covering any expense
from my own accounts. The decision to use any mobility
device is not one that happily awaits anyone with a
debilitating illness, but for me it was particularly
disheartening. I felt like I would been giving up and
I was not about to do that. In prior visits to both my
general practitioner and my neurologist, I always
asked them the question “How long do you think it
might be before I will need a wheelchair?”. I saw in
their answers an attempt to be encouraging as they
responded with statements such as “Many years”, “Long
way off”. etc. During visits in the past couple of
years, as my condition was obviously declining, their
answers became more like “Maybe three to five years”,
with my general practitioner saying to me in the past
year “Well, you probably could use one right now, but
your determination to stay out of one could be a real
asset.”
Over the past several years my deteriorating
mobility began to limit my travels. The majority of my
ventures outside the house consisted of going to local
stores, an occasional trip to a movie theater, or a
visit to the mall with my wife. Even when I was in a
public place, I was very self conscious of others
reactions to me or their looks when they saw me
stumble while using a cane. This only served to
reinforce my declining feelings of self worth. I
tried, to no avail, to reason with myself that people
were just being nice when they went out of their way
to accommodate me and my disability. Even though I
tried hard to see the best in people in these
situations, it didn’t make me feel any better thinking
I was the reason for them making accommodations for
me. I was rapidly becoming a textbook ‘basket case’
and not liking one minute of it. Then along came the
Segway.
I first became interested in the Segway as I
heard news reports discussing a new invention that
might change the world. The new invention was shrouded
in a cloak of secrecy. Like much of the nation, my
curiosity was piqued by what “IT” may be. Early one
morning my daughter phoned to tell me that “IT” was
going to be unveiled on ‘Good Morning America’. I
anxiously watched as Diane Sawyer and Charles Gibson
appeared along with inventor Dean Kaymen to
demonstrate to the world what all the hype had been
about. I was intrigued as I saw both Diane Sawyer and
Charles Gibson glide effortlessly around a small oval
track. I thought that this machine might have some
relevance for me sometime further down the road but I
didn’t feel any sense of urgency to seek a source for
one at the time. That was to come later.
My physical condition declined to the point that
some decisions had to be made. I was searching on the
Internet for sources for power scooters, lifts, etc.
when, on a whim, I decided to do a ‘Segway’ search and
see what turned up. I found the Segway home page,
www.Segway.com, and looked for dealers in my area. I
found the nearest one at the time, just outside of
Cincinnati, Ohio. I live in Georgetown, Kentucky,
approximately 10 miles north of Lexington. After a
call expressing interest and requesting an appointment
to test ride one, my wife and I traveled to
Cincinnati. The representative was very patient and
encouraging in explaining how to operate the machine.
Then came time to actually get on board. I was
nervous. After securing my helmet, I reached for the
handlebars and stepped very gingerly onto the
platform. After some further encouragement I leaned
slightly forward and the machine actually moved. I’m
sure I was stiff as a board as I experienced the
strange feeling of standing on a moving platform. It
was hard to believe that I was actually riding a
Segway and all of my body parts were still intact. I
was elated at being able to move about without fear of
stumbling and falling down. I wasn’t even using a
cane. I traveled about 50 feet forward and then
stopped and turned around and returned. I was hooked.
We returned home and began to make plans to
actually purchase the machine. First, I checked with
my insurance provider. After getting a slight run
around and each time trying to carefully explain what
the Segway actually was, I finally got an answer. No,
they didn’t cover scooters of any type. My wife and I
had already decided to purchase the machine on our own
if the insurance policy didn’t cover it or any portion
thereof. The purchase price would come out of our own
accounts. Not a pleasing decision, but one with which
we were ready to proceed. The next step was to call
the company and arrange to have it shipped.
I called and made arrangements to have the Segway
sent to my home via UPS. It arrived on a Tuesday
evening in a large carton. My son-in-law helped get it
out of the shipping crate and put it together. A
simple process consisting of connecting the electrical
cables and securing the shaft to the base of the
machine. I had been told to charge the Segway up for
12 hours prior to its first use. I was also told that
I should receive training before I commenced to ride
on my own. The training consisted of: 1) Reading the
owners manual, 2) watching the training video and 3)
receiving instruction from an authorized agent. I had
arranged for the training to take place on Thursday in
Cincinnati.
I had a hard time sleeping that night as the
machine was receiving its initial charge. I kept
anticipating what it would feel like to be able to
ride it any time I wanted. Finally the next morning
arrived and the initial 12 hour charge period was
over. I reasoned that I had at least completed
two-thirds of the training process by watching the
video and reading the book. That should, at the very
least, qualify me to become at least a ‘Rookie Rider’.
I quickly got out of bed, clad only in my underwear,
and hurried to the study where it was still plugged
up. I powered the Segway on and stepped up on the
platform, got a firm grip on the handlebars, leaned
slightly forward and began to move very slowly. My
wife was in our study at the time using the computer
and she admonished me for my lack of attire by saying
“Gary, the drapes are open. What in the world will the
neighbors think if the see you?” I calmly replied
“Well, I guess they’ll see the Segway Streaker”, and
continued my ride. I moved slowly from room to room
thoroughly enjoying my new found sense of mobility. I
was having fun. As I continued to ride through the
house and was navigating a small entryway between the
study and entrance hall, my left wheel caught the
closet door facing which caused the machine to turn.
This sudden surprise caused me to lose balance and
lean backwards, which in turn directed the Segway to
go in reverse. This further created a whole new set of
problems when the Segway struck a small bench causing
it to go into the wall and put two holes in the
drywall. In addition, the wooden bench ended up in
several pieces. Oops! My first thoughts were “I bet my
wife is going to be really upset about this.” However,
she didn’t say anything, which I figured was probably
was some form of female punishment, which made me feel
somewhat worse. Later that morning we traveled to
Cincinnati for the introductory training session. The
training was abbreviated as it became evident that I
had already been riding the Segway.
After riding around the neighborhood streets and
on the sidewalks in town several times, I felt it was
time to test my skills in a more crowded environment.
We chose the Lexington Farmers Market as the site for
our first venture. I had acquired two portable
motorcycle ramps from a local shop and loaded it into
the rear of my SUV. Later I began using two 4 foot
metal wire shelves obtained very cheaply from a local
building supply store. They are much lighter and
easier to manage. We arrived at the downtown market
area, parked the SUV and unloaded the Segway. We
entered the Farmers Market area and began to mingle
with the crowd. I was a little nervous being in a
crowd for the first time, but the feeling soon
dissipated. The reactions of surrounding people were
very warm and friendly. Many wanted to talk about this
marvel and wanted to know things like “How do you stay
balanced on it?”, “How fast will it go?”, and “How do
you control it?”. It (and I guess I too) performed
admirably in tight spaces. I found it interesting to
just be quiet and listen to people around me as I
effortlessly moved among the crowd. Comments like
“That’s so cool”, “I saw one of those on TV” and “Wow,
that’s neat”. were frequently heard. We toured the
market area, stayed a couple of hours, and then left
to return home feeling very satisfied with the first
results at being in a crowd. The trip gave me and my
wife only a small taste of things to come, as a whole
world had been reopened to us because of the Segway.
Since that first day a few months ago, we have
been able to do much more traveling. My wife is
retired also, therefore giving us the luxury of time
together. This past fall we attended numerous
festivals, art fairs, and even the Kentucky State Fair
with the Segway. My wife says that I was about to wear
her out. We traveled to Maine last fall, staying in
some excellent New England Inns and dined on a
sufficient number of lobsters. In early December we
traveled to Europe, visiting Salzburg, Linz, and
Vienna, as well as Prague in the Czech Republic. We
went with a tour group and experienced the Christmas
Markets of these cities as well as visiting many other
local sights. The Segway traveled easily over the many
cobblestone streets. The unevenness of the streets
would have made walking for me very difficult, if not
impossible, even with a cane. The Segway is easily
transported on airlines. I ride it into the terminal,
check baggage and then use it to get to the designated
gate. When it’s time to board, I ride it though the
tunnel to the plane, get off and use my cane to assist
me in getting to my seat. Airline personnel load the
Segway in the plane and upon arrival, have it waiting
for me as I exit the plane cabin. On our Maine trip I
packed the two 4 foot ramps, which I use for loading
in and out of a SUV, in a canvas snow board bag. They
fit perfectly and I checked the bag in with our
luggage in the terminal. At our destination, we rented
a SUV and was able to load and transport the Segway
with the same ease that we did at home. I use small
pieces of Velcro on one end of the shelf/ramps and
place three other small pieces with sticky backs, on
the bumper of the vehicle. These strips are easily
removed when they are no longer needed. The Velcro
strips also serve to help align the ramps in the
correct position corresponding to the width of the
Segway wheelbase. It takes less than 2 minutes to load
or unload the Segway from the rear of a SUV. I use the
‘power walk’ feature of the Segway to get it to go up
the ramps. The only effort that is required from me is
to guide the Segway as it climbs the ramps and goes in
the rear of the vehicle.
The only physical effort that using the Segway
requires of me, is that I be able to step on the
platform after it is powered up (an 8 inch step) and
to hold on to the handlebars and lean slightly to make
it move. After the introductory ride I realized that
it would make movement for me easier, but I didn’t
foresee how much I would ride nor how much fun I would
have in doing so. Now (on warm days) instead of
staying in all day, I am getting out once again and
enjoying the outdoors even more that I did prior to my
declining condition. I relish the days I can get out
on it and zip around the neighborhood or travel to
town. A couple of hours on the Segway and I’m a happy
camper. I have even been able to navigate my way
through town and travel to a park on the north side of
town and sit by Elkhorn Creek and reflect on life. I
do stay off main roads and ride on sidewalks where
necessary. Neither did we realize what reaction others
might have when seeing the Segway. Rare is the time
that I’m out on it that I don’t get stopped by someone
wanting to talk. Several times, people have even
followed me and stopped me to inquire about this
strange looking machine. When we go to a mall, the
Segway goes with me. I am again able to travel
throughout the mall, whereas before my acquisition of
the Segway, I might just go and sit and wait while my
wife shopped. I did place two small handicapped
stickers on both the front and rear of the Segway.
These are highly visible and serve to let people know
that I do need the machine to effectively get around.
My favorite place to ride is the local cemetery. There
it is so beautiful, peaceful and tranquil. The
residents don’t seem to mind either.
My experiences in using the Segway as a mobility
device have been many and varied. All of them have
been fun. Using the Segway has in some way reopened a
world to me that, due to my illness, had been lost. I
say that when I’m riding the Segway, I’m not
handicapped anymore, and for me that is one feeling
that I thoroughly enjoy.
posted by Gary Pruitt @ 3:36 PM
