Tourette
Syndrome Life Stories
Story No.'s 39-45
 This
section of our site contains the true
life stories (see below) of
people with Tourette Syndrome and/or their loved
ones. We have placed several stories on each
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story pages in the left-side menu bar.
Tourette-Syndrome.com encourages you to write
and send us your personal story -- reflecting
the ups and downs of you or a loved one's life
with Tourette Syndrome. If
you want to share your personal story
about Tourette Syndrome, ADD, ADHD or OCD, or
the story of someone you love who has one or
more of these disorders, please
fill out this form.
Stories
on this Page
Story
No. 39
Sometimes
I Worry About My Children
Hello, My name is Martin,
and although I have not been diagnosed with TS,
my mom has been. Throughout her diagnosis she
recognized that I showed many of the classic
symptoms since childhood.
I am now 28 and have been
able to see the TS symptoms gradually change
from one thing to another. I have felt, and
sometimes still do feel, many of the
frustrations that can accompany TS. Although I
feel that my case is a very mild one, I still
experience the tics and the "under the skin
itches". Fortunately, even though I have
shown signs of ADD I do not suffer from the
problematic hyperactivity that often accompanies
it.
Sometimes I worry about my
children. I have three and the oldest that is a
5-year old girl does things that we feel could
be rooted in TS. I recognize some of the
medications as being modern miracles for some of
those who suffer from TS. However, I would like
to avoid using them for my children, as I have
never used them. I realize that a parents
understanding and unconditional love for them
will be the most important
"treatment". It was for me.
I am curious though if you
are aware of any natural treatments that could
help reduce the symptoms of TS. I have heard
that eating less sugar can help. I have also
heard that sometimes wearing natural fabrics can
help. I would be very grateful for any feedback
you could give me. I think your WEB page is
great. TS needs to be more widely understood. I
hope to be able to do my part here at home
(Colorado). Good luck in your efforts as
well.
Thanks,
Martin
Story
No. 39
"Toastmasters
has helped me rise above Tourette Syndrome"
I was born on October
11th, 1954 in Fullerton California. Tourette
Syndrome wasn’t very well known in those
years. In fact, I didn't find out that I even
had Tourette Syndrome until after my 40th
birthday. Even long before I found out I had T.S.,
I was often dumped on, made fun of, and
ridiculed by my teenage peers.
I was also told a number
of times; I couldn't do a lot of things normal
people could do. I set out to prove them wrong.
I was told I couldn’t make it in College by my
high school advisors. I went to college and
graduated in August of 1979. I sang for the
Orange County Master Chorale from 1984-1987. I
later became a co-author of three children's
activity books: Old Testament Bible Puzzles, New
Testament Bible Puzzles, and Life of Jesus Bible
Puzzles.
Later I joined
Toastmasters International. I have been in
Toastmasters now for eight years and during that
time I have won first or second Place in
seventeen major speech contests. I was Orange
County (California) Champion of Tall Tale Speech
in 1994. I earned Toastmasters’ highest
achievement-- The Distinguished Toastmaster
Award (DTM) in February of 1996. Toastmasters
has really helped me to rise above T.S.
Today, I am a File Clerk
for Occupational Medicine at St. Jude's Heritage
Medical Center in La Mirada, Calif. This all
proves that people with Tourette syndrome can
live normal, productive lives like anybody else.
The somewhat popular view that people with TS
can't live normal productive lives in 100%myth!
Thanks
for letting me share this Craig,
Bill
Story
No. 40
"My
Son Drake -- Handling Tourette's The Right
Way"
My
son Drake will be 17 years old on May 15 of this
year. He is a wonderful, outstanding human being
who has Tourette syndrome. He was recently
inducted into the honor society at his high
school, Eastern Wayne High School of Goldsboro,
North Carolina.
There
are many students who shun him because all they
can see are the facial, head and arm tics. He
has a few close friends who have looked beyond
the tics and discovered what a fine person he
is. No matter how many times he is questioned at
school as to what he is doing and why, he never
feels sorry for himself and very patiently
explains about Tourette’s.
He
has such an analytical and sharp mind that he
has become a chess expert, and teaches chess to
children of all ages at our youth center on
Seymour Johnson Air Force Base where we live. He
is a positive influence on many children
(including his three younger siblings) and also
to his peers. Tourette's has never affected his
behavior and he has always been respectful
towards everyone.
He
has never been in any kind of trouble or given
in to bad influences or peer pressure. At home
he is helpful, kind and watches his severely
autistic brother without even being asked. He
has a lot of compassion and understanding for
those who have handicaps. In his senior year he
will be part of a program called Jumpstart,
where he will be taking a few coursed from our
community college in Goldsboro to give him a
head start in college. I may be biased, but I
wish I had half the courage that Drake has, and
if anyone is deserving of a scholarship, I think
he is. Thank you for reading my story.
Yours,
Kimberly
Story
No. 41
Meds
Didn't Work For Me
I
was diagnosed with Tourette's when I was ten.
Actually it was sort of a miracle the way it
happened. My fifth grade teacher has a son who
was diagnosed with it and she saw it in me. At
that time I displayed not only my speech
impediment and other facial tics, but I also
made animal noises; barking, growling, hissing,
purring, hooting, howling, etc.
When
I went to the neurologist he put me on clonidine
then took me off of it when it gave me high
blood pressure in High School. I tried not being
on medication with the doctor’s supervision.
That was until my second Assault charge in less
that year. Then he put me on desprimine until it
made me suicidal I took myself off of it.
Now
I have learned to control it without any
medication. I graduated from high school in five
years, because my grandparents died so I took
some off, I now work as a security officer tying
to earn enough for the police academy.
Sincerely,
Mike
Story
No. 42
"Don't
Let TS Get You Down"
Hello, My name is
Greg. I'm 26yrs old and live with TS. I live
with it very well. I started having tics when I
was 5 years old .My parents were really good
with me. They knew something was wrong but
didn't know what. They took me to hundreds of
doctors. They didn't know what was wrong with me
till finally my mom saw a program on PBS about
Tourette’s .
I had a normal
childhood. I didn't let Tourette's bother me
.and still don't today . When I was in high
school I was teased a lot -- I mean a lot ..I
was called Retarded Special ...Anything, you
name it! But I thought "you know, if they
don't like me for who I am -- it's their
loss." And that's how I still feel today.
If they can't
understand I have TS.I don't need to associate
with them. For you teenagers out there with TS
-- don't let it bother you -- if people tease
you and make fun of you – "Forget about
it."
I know it's hard
I've been there...You need to stay in school and
study your butt off. Because it is harder for a
TS patient in school. You have to deal with the
teasing and stares. But you know what...SO WHAT
...That's my motto..."you can do anything
anyone else can ...DON"T LET TS GET YOU
DOWN."
I have a
wonderful life. .I'm in college, I have a really
nice girlfriend, I have a good job. What more
could anyone ask for? You are just as normal as
the next guy, so go get out there and get what
you want.
Thanks T-S
.com for giving me the chance to write you,
Greg
Story
No. 43
United We Stand
Thanks so much
for being here! Today, my 11 year old son's
principle dropped the bomb on us. She suspects
T.S. -- and I guess I can understand why. We've
gone this route before: A.D.H.D. and my older
son has A.D.D. and is dyslexic as well. I know
that I'll have to go through what I call
"the mourning" phase, once
again.
I only wish my
son's life were carefree and easy, and that he
(and I) didn't have to deal with all this. He's
got so much potential, and yet the behaviors get
in the way of him utilizing what he's got. I
wish there was a way to help him understand that
he doesn't have to protect himself from the
world, the way he does.
His self-esteem
is low, and his social skills can go from
awesome to appalling at any given moment. I'm
not expecting much help form the school, as this
principal is on a career boosting mission ,and
my child's needs have to fit with her ultimate
goals. Bottom line is, she won't permit him to
possibly make her "look" bad. So, I'll
be his advocate, I always have been, and always
will be.
Thank you for
supporting us all
United we
stand, right?
Caring Mother
Zee
Story
No. 44
"I
have kept my Tourette's a Secret for 35
Years"
Mr. Whitley,
I am a 40 year-old woman
with TS and OCD. I have had it since the age of
5. Because I have had this condition virtually
my whole life, I have learned to live with it
and, believe it or not, no one even knows I have
it. I am able to control it in public, but in
private it's a different story. You name the
tic; I've had it.
Growing up, my parents
went crazy trying to figure out what was wrong
with me. They tried everything from reasoning
with me to punishing me. But back then no one
knew anything about this disorder. How can you
possibly explain it to someone who doesn't have
it?
Like your son John, I
always excelled in academics and sports. I am
very outgoing, gregarious, and creative. I even
got married, and my ex-husband didn’t even
know about it. But once he caught me in a tic
and mimicked me. You can imagine my humiliation.
I thought I would pass out. It was always a huge
secret of mine, and to this day I've told no one
but my psychiatrist (also a psycho-pharmacologist)
and you. I've never been to a support group
because I fear it will upset me more.
It wasn't until I saw a
show on OCD on Oprah and a show on Tourette's on
Donahue that I finally mustered the courage to
see a doctor. I contacted the Tourette’s
Association and OCD Association to get the names
of specialists in the field. I was 32. I can't
tell you what it was like to admit my problem to
someone after 27 years of hiding it.
For all those years, my
tics were like a monkey on my back. I've been
taking Prozac and Klonopin for eight (8) years,
and I really feel it has helped me control the
tics and OCD. I pray for a cure.
I believe your son’s
case is similar to mine in severity. I think he
will do okay. I don't want anyone to know who I
am. I am still ashamed; I hope you understand.
You are more than welcome to write to me. It
took me a lot of courage to write to you.
Thank you,
Becky
Story
No. 45
"Two
Different Doctors -- Two Different
Outcomes"
My name is irrelevant, but
I will say, I am 17 years old. I was 9 years old
when I was diagnosed. The truth is I was
actually recognized at age 9 and a half, that I
actually had tourette syndrome. My doctor said I
was making it all up, that I wanted attention. I
said "sure I like going into involuntary
spasms. Really the pain isn't bad it only leaves
me sore for days."
I was taken from that
hospital and on to Children’s in Oakland.
There I met a wonderful man. He talked to
me, which as a child, I ate up like candy. Dr.
Brad Berman was his name. He is a
developmental pediatrician. I really didn’t
care all I knew was he listened and he believed
me. That was by far the best part. By that time
I was on Ritalin for 2 years previously, and
since my previous doctor didn't recognize the
problem, I was still on the medication that
provoked my dormant gene.
As far as I understand it,
I was on the wrong medication for a prolonged
amount of time, so as a result I suffered ill
effects of the medication. The medication roller
coaster I suffered after that, although a hard
path, I do encourage, since such a rigorous path
to tailor the medication for your needs is
definitely worth it.
My life has been hard, but
I came out all right and I encourage others to
share their personal stories. My influence from
my doctor at children’s, combined with my mom,
has encouraged me to become a teacher. It's a
hard path, but keep the faith and good luck.
Signed,
"Keep the Faith"
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