Living
with a chronic disease is life-altering.
What was is no more. Nevertheless,
it isn't all doom and gloom, even if that disease is multiple sclerosis, MS. For the newly diagnosed,
you may worry after learning that the disease uses a person's own immune system
to attack nerve connections in the brain causing varying symptoms.
However,
if you have the relapsing-remitting form, which is the most common, there are
drugs that help keep the disease at bay for some time. In fact, many people have few symptoms until
the disease progresses. For some, that
progression never comes. For others –
like me – we are not quite so lucky and go directly into the progressive types
of the disease. This is my story.
In the
Beginning, There was a Chair
My
disease began with a bang. Severe nystagmus, dizziness, and difficulty
walking kept me tethered to a wheelchair for many years. Most of the time, even on my worst days, getting
around the house without assistance was not an issue. However, who wants to stay in the house when
there is so much of the world yet to be explored? This was my biggest challenge. I love
to travel. Still, it was not all doom and gloom. It is all about readjusting. Moreover, there is a nice happy ending coming
up soon. So, don't reach for the tissue
just yet.
Flying
with the Chair
Yes,
traveling with a wheelchair can be a major hurdle, so special arrangements were
always required. Calling well before our
scheduled flights and securing wheelchair assistance at airports ensured we
could get to the gates in plenty of time.
In addition, security was a breeze, even for my hubby. Storing the chair, however, was not a
breeze. These must be stored with
luggage. Arg. Chairs can be easily damaged, so it's best to
minimize the chances.
To
ensure I had a chair once I deplaned, I always requested to gate-check my chair,
so I could ride it right up to the door of the plane. Once here, I could remove the leg supports
and portable seat cushions to store in the overhead bins; these do not travel
well. After collapsing, I'd tie the arms
of my chair together, creating a tight and much smaller package. Even these precautions did not keep my chair
safe in all situations. So, I advise
including research of wheelchair rental shops to your travel-planning list.
Pluses
About the Chair
Rejoice! There are perks to being the person in the chair. The
Louvre, Eiffel
Tower, and even many local zoos are free or discounted for the chaired and
assistant. In fact, when we visited the
Louvre, others parted the way so I could see the Mona Lisa, which would have
otherwise been impossible. At my level,
all I saw were others' derrieres.
Today
As
I promised, there is a happy ending.
Because MS offers its victims reprieves now and then – even for the most
progressive forms – I have been chair-free for over 15 years. I cherish every moment of walking and riding
my three-wheeled cycle—still dizzy, so no bicycles. There's no way to know when my legs will
stiffen up again nudging me back into the chair. And this is how it is for most of us with MS. None of us know the how and when of the
progression and symptoms. Thus, it
forces us, or at least me, to live each day as if it were the last day of
freedom. It's rather liberating in a
way, rather ... joyful.
Please Read
Interview:
Why Write About Mobility Issues
Mobility
Issues: Paso Robles, CA
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