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The
Faces and Stories of MdDS
JENNIFER'S MdDS STORY
Two
years ago I took a three hour flight home from Las Vegas to Houston
after
throwing a bachelorette party for my best friend. Little did I know, a
short 12
hours after landing, that my life would be
forever changed. As I
woke up the next morning, the room was moving around and the
walls
were swaying back and forth. I had this immense pressure that
gave me
the sensation that my brain had become detached from the inside and was
bashing
back and forth in my head. I felt like my body was being
pushed
and pulled across the bed over and over again. Walking was nearly
impossible unless I was holding onto the walls or furniture.
I didn't know
what was happening to me, I was terrified, and I had no idea that it
might
never go away.
Being
a medical professional, I had resources to look up my symptoms, but
nothing fit.
Everything I read described a "spinning" sensation, and I definitely
did not have that. I felt like I was on a boat every second of
every day,
unless I got into my car to drive and then it "magically" went away.
Eventually (thankfully!) through my online research I came across
the MdDS
Balance Disorder Foundation Support Site and was in disbelief when I
read
the list of symptoms and had nearly ALL of them! RELIEF!! Or
so I
thought...until I read that MdDS was extremely rare, had no cure,
and
no silver bullet treatment. I was devastated, to say the
least.
Months
and months went by and the illness persisted. I felt mentally,
emotionally, and physically defeated all day every single day. I was
officially
diagnosed 9 months after the symptoms began, and trialed on a
medication but
unfortunately it made me feel even worse so I had to stop
taking it.
I have not taken any new medications since then in fear that it would
escalate
the rocking. The only option was learning to cope with
my
illness as best as I could, until hopefully a treatment was
found.
Very
slowly over the past two years the "rocky beast" has calmed down
to a mostly manageable level, but I don't know if I will ever feel
"normal" again. I am learning to cope with that, but I still
have some emotionally rocky days. And when I do, I feel
truly blessed
to be able to meet and talk to other
"rockers" that have the strength to push through
everyday living life with an impossible illness. They give me
invaluable
strength. I will continue to hold out hope that the research being
conducted will one day help all of us get off of this horrific boat
ride!
Jennifer
Nagel
30
years old, MdDS for 2 years and 3 months from a 3 hour flight
June 22, 2010
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Brochure |
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This
site is designed for those suffering from MdDS (Mal de Debarquement
Syndrome) and the health care professionals who treat them.
If
you have been diagnosed or suspect that you have MdDS or Disembarkment
Syndrome, sign up for a free membership at our support site
and review or search the
thousands of messages from those who suffer from MdDS. Here, you will
find caring people who understand what it is like to live with this
rare balance disorder; members are from all over the world. Please join
us to share and learn from others.
The
MdDS Balance Disorder Foundation is an all-volunteer 501(c)(3)
nonprofit PA foundation dedicated to promoting awareness of Mal de
Debarquement Syndrome and seeking treatments and a cure for people
suffering from this disorder.
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Copyright
© 2006-2010, MdDS Balance Disorder Foundation, Inc.
All
rights reserved. Unauthorized use prohibited. Copyright materials may
not be reproduced in whole or in part by persons, organizations, or
corporations without the prior written permission of the MdDS Balance
Disorder Foundation. The information contained in this web site is not
a substitute for medical advice or treatment.
Last
modified on June 21, 2010
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