My
first and only child was born in June, 2006. Four to five
months later, out of nowhere, I started having a strange body sensation
comparable to being on a boat. I went to my GP, who put me on
meclizine,
but it did nothing. He then ordered a brain MRI, which ended up in a
referral
to a neurologist. The neurologist performed some tests on me. Unsure of
an
answer, he referred me to an ENT physician. After the ENT Dr. looked me
over,
and I described my symptom, he said he believed I had “the French
term for
disembarkment”. He suggested I look it up online and that
was my introduction to Mal De
Debarquement Syndrome.
He
also wanted to run further tests, but for a few reasons, I
didn’t follow up at that time. Frankly, I was just happy to know
I didn’t have
a brain tumor.
Over the next 3 years,
I experienced mild rocking and didn’t feel it was affecting my
life. Then in
late 2009, I started noticing that my concentration was lacking and I
had more
fatigue. I went online to the MdDS Foundation site and saw that my new
symptoms
were in fact part of having MdDS. At the beginning of 2010, I saw a
different
ENT doctor who specializes in dizziness. After all the tests were run,
I was
officially diagnosed with MdDS.
Early 2010 brought on
new symptoms such as the ground moving sensation, stronger fatigue, leg
weakness, visual sensitivity, and increased cognitive impairment. If it
wasn’t
for the support of the MdDS support group and a fellow MdDS sufferer,
my dear
friend Maria L., I would have been lost in anxiety wondering what was
going on
with my body. Since then, the levels of my symptoms have been up and
down. From
one day to the next, I don’t know what to expect.
The absolute hardest
part of having this disorder is not being the Mom I want to be for my
now 4 year
old son. He’s not old enough to understand why Mommy gets tired
and doesn’t
have the energy to play with him as he desires, or why Mommy
can’t run a lot
with him out of fear that she will get off balance and fall. Like most
of us
with this disorder, I didn’t think this would happen to me.
Health issues like
this aren’t supposed to happen until much later in life.
With all that said, I
do my best to focus on the positive and contribute to a solution.
There
are many others out there in the world with worse problems, and while
MdDS can
alter your world as you used to know it, it’s not terminal. I
have a new
perspective on life which sometimes only comes from going through an
experience
such as this. Compassion and Understanding have become even larger
words in my
vocabulary than they were before.
In August of 2010, I
participated in the MdDS research study with Dr. Cha at UCLA. Within
the limits
of being a stay at home busy Mom, I do what I can to contribute to the
cause
through donations, talking to others with MdDS, spreading awareness, or
backing
programs that help our cause. This disorder being so rare, it’s
vital that
everyone gets involved. We are all ready to step off the boat and feel
solid
ground.
Pamela
Kelley
