My father
was diagnosed with the disease in the early 1980s after our
family immigrated to the Seattle area from war-torn Cambodia.
He spent his life in America struggling with his condition.
He became extremely symptomatic in his late-thirties (when I
was a toddler) and, in time, became wheelchair-bound. In the
latter years of his life, he was bed-ridden and confined to
his room with just the television as his outlet. He passed away
due to respiratory difficulties related to SCA3 in the year
2000 at 62 years of age.
Only a
year after my father's death, I began noticing that I was
off-balance in walking and would often trip, but my friends
and I attributed it to clumsiness and dismissed it. It wasn't
until I noticed muscle tension in my face that I began to
worry. I wasn't sure that it was related to my father's illness.
After all, it wasn't a symptom that my father had exhibited.
The tension began with just my eyes and forehead area.
The discomfort quickly became unbearable, which sent me on
a wild goose chase from doctor to doctor seeking some sort
of relief.
I was 21 y/o at the time and a junior at the University of Washington. Although only one year shy of graduation, my life became too chaotic and academics could no longer be my primary focus. With the drastic physical change came the issues of self-esteem and I began to retreat and withdraw socially. My face felt painfully contorted and my ability to concentrate on anything but the discomfort felt impossible. I was absolutely falling deep into depression. Needless to say, I didn't do very well in my courses. I would have to take time off of school--a difficult, but neccessary decision nonetheless.
I eventually
ended up at the UW Medical Center and, at that point, I realized
that I could run no longer. SCA3 was right in my face—literally
and figuratively. I was diagnosed with
Meige's Syndrome related to SCA3 (a combination of
oromandibular
dystonia and blepharospasms).
To
treat the dystonia, I began receiving botox injections. It
started out with 12 or 13 shots…today I am up to somewhere
around 30-35 in my face and neck to treat the muscle spasms.
For me,
it was the emotional journey that was most difficult to deal
with. At first, I felt cheated and angry. It was a time in
my life that required a lot of internal self-reflection. This,
I could not do alone. I sought therapy to help me understand
my inner turmoil and to get some perspective on my life and
the disease. I say this with pride because I know that there
is still a stigma that is attached to the notion of therapy,
but I can honestly say that without the support I doubt that
I could be content with the person I am today. I also had
wonderful friends and cousins who stood by me when my immediate
family was rooted in denial and wasn’t there to support
me through my hardest days…and, to them, I am eternally
grateful.
It has
taken me a while to cope with my situation and, even now,
I still have good days and bad days, but over these past
years of having SCA3, I have certainly grown to understand
the illness...and to know that I am certainly not defined
by it.
At 25 y/o,
my gait was somewhat rigid and I was able to walk without any assistive devices.
At this time, I am using a cane as I often lose my balance resulting in scrapes and bruises.
For safety's sake, I also use a walker when traveling alone and for longer distances.
I still try to go to physical therapy twice a week and my schedule is very much dedicated to various
doctor's appointments to maintain my health.
Creating
and publishing this web site has been therapeutic for me.
It has allowed me to broaden the scope of my own understanding
of the disease as well as to provide a service for others.
Simply to know that I have created something that will allow
access to information on SCA3 in a manner that was never available
to me is very fulfilling.
Thank
you for reading this and I hope you find this web site informative!
Sunaro
sunny820@gmail.com
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