Tourette
Syndrome Life Stories
Story No.'s 6-10
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Stories
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- Tourette
Syndrome Tics Are Like Cheesecake
Cravings
6.
Tourette Syndrome Can Shape Beautiful
Personalities
By
Gary J. Marmer
The
wonderful letter was written by Gary J. Marmer,
a Physicist and former President of the Illinois
chapter of the Tourette Syndrome Association.
Gary paints a touching story of how he has
endured Tourette tics all his life, but more
importantly, how he has beaten all odds and
thanks Tourette Syndrome for blessing him with
the caring personality he has today.
My
first recollection of doing something out of the
ordinary was at age five. As I walked down the
street, I would twirl around and touch the
ground. This proved to be my most bizarre tic,
and one that soon disappeared, only to be
replaced by many others; I raised my eyebrows, I
twisted my neck, I jerked my shoulder. At this
age, I did not really keep track of my
peculiarities, and when asked why I did these
strange movements, I of course had no answer. At
some point in the next few years, my parents
asked our family physician what could possibly
be wrong, and he said that I just had some
nervous habits; and nervous habits they remained
throughout my childhood, grade school and high
school years.
I was teased somewhat by the children in the
neighborhood, and never had a lot of friends. As
I got older, I developed new tics, including a
throat clearing noise, while some of the older
tics disappeared. Somehow, in spite of it all, I
did quite well in school. I did belong to a high
school fraternity, had dates, was on the
football team, and in general survived these
trying years; but I never did find out why I was
different. I never observed another person with
tics, and believed that I was the only person in
the world with this problem. In fact, I
attributed these nervous habits to something
that had occurred in the past - something that I
did not want to remember because it must have
been bad.
This is not an unusual story for those who grew
up with TS before the 1980s. However, many kids
have had a much more difficult childhood than I
experienced, specifically due to the fact that
most physicians were ignorant of Tourette
Syndrome, despite the fact that it was first
described by Gilles de la Tourette in the late
1800s. Even today we hear horror stories from
parents that have sought out one physician after
another, trying to determine what was wrong with
their child. How many parents were told that
they were responsible for their child' s
behavior?
After learning that I had TS, I chose not to
take any medication since I had survived for
almost 40 years without drugs. However, I
developed high blood pressure at about 45, and
at that point decided, with the approval of my
physician, to begin taking clonidine, a drug
developed for hypertension but which has also
shown some benefits for decreasing tics. After
several years of using clonidine, I found no
improvement, and when it became necessary to
change my hypertension medication, I chose not
to continue with clonidine.
I have symptoms of both OCD and ADHD, although I
did not realize this until a number of years
after I was diagnosed with Tourette Syndrome.
Some of my OCD symptoms include checking,
touching, and counting. I touch almost
everything except people. One time at the
national art museum in Amsterdam I touched the
frame of a painting; sirens rang and the doors
to the room automatically shut. To say the
least, I was very embarrassed. I also set off a
fire alarm at the British Museum in London when
I pushed a little too hard on an emergency exit
door.
Some of my ADHD symptoms include:
- Difficulty
remaining seated for extended periods of
time. I would use any excuse at work to
get up from my desk and walk around. If
I needed to ask my secretary a question,
I would go to her office rather than
call her on the phone.
- Easily
distracted. Reading has always posed a
challenge for me, although my job
required extensive reading and I am a
voracious reader of novels. After
reading a few paragraphs, my mind starts
wandering, and I often have to reread
paragraphs or pages. Despite this
problem, I did well in school.
- Shift
from one incomplete activity to another.
I am usually reading three or four books
at a time. I have many projects going
simultaneously, but only spend a small
amount of time on each.
- Lose
or misplace important things. I am very
disorganized, as much as I try not to
be. I don't have the patience to keep
track of all the things I should.
In
spite of my TS+, I have lived a full, happy and
successful life. I earned a Ph. D. in physics
and worked for 28 years at Argonne National
Laboratory near Chicago; the past twenty years
in environmental analysis and assessment. I have
a wonderful wife and three successful children.
I was past president of the Illinois Chapter of
the Tourette Syndrome Association. I retired
last year and have moved to Phoenix.
I have grown so accustomed to my tics that they
have become a part of me. They helped develop my
personality - without TS I would have been an
entirely different person. I have met so many
wonderful people - those with TS, parents,
siblings, volunteers, medical researchers, and
staff of the Tourette Syndrome Association. I'm
not sure, if I had the chance to be cured,
whether I would actually choose this course.
Signed,
Gary J. Marmer
7.
The Whirlwind Learning Experience -- Dealing
With Tourette's
I
got this letter in December 1998 from a young
man who only finally discovered the truth about
his Tourette Syndrome when surfing the Internet
one day. Since then, he has thrown himself into
a whirlwind learning experience -- including a
trip to the Tourette Syndrome Association
national conference. He seems to have adapted to
Tourette Syndrome better than most and looks
forward the birth of the new child he and his
wife are expecting.
Ever
since I was a kid, I did stuff I didn't know why
I did. Sometimes I'd come up with reasons why,
or find ways to disguise what I was doing. But
inside I knew I couldn't stop them. Sometimes
this really bothered me, but most of the time I
really didn't care. Oh sure, I got teased in
school, but we ALL picked on each other, so I
never felt singled-out. And when I moved to the
East Coast for high school, I got teased more
for my Texas twang than for any of the strange
sounds or movements I'd do.
It wasn't until after I'd finished college, and
was working in a computer related job, that I
finally discovered the truth. I'd occasionally
surf the net when I had the computers running a
long process, and one time I came across a web
site that mentioned this
strange thing called Tourette Syndrome. "Oh
wow!" I thought, "Poor people! I
wonder what it's like?" So I started
reading, and reading, and reading some more.
"But this is all so normal!" I
thought.
Oh...
It turns out I had TS, ADHD, and OCD. Over the
next year I read as much as I could, learned as
fast as I could, and came to terms with a part
of me I'd never explored before. I found out one
of my co-workers also had the TS+ trifecta, so
we pooled our efforts, and learned a ton.
Going to the TSA National Conference was
fantastic. I got to meet a number of people I'd
only known online, and got to see and hear all
manner of tics I'd only seen written down in
books and online web sites. We had a blast, and
basically took over the conference hotel for the
duration. It was a wild place and a wild time,
and I'll never forget it. (I can't wait for the
next one!!)
And now that the whirlwind learning experience
is slowing down a little (slowing, but never
stopping), I can answer some questions for
myself:
- Do
I wish I didn't have TS? No. My vocals
aren't bad any more, and people don't
really notice my motor tics. Actually,
I'm having a lot of fun with it.
- Am
I medicating for it? No. None of my tics
are self-injurious, and they don't keep
me from functioning on a day-to-day
basis. So I don't really see the need.
- Do
I have any plans for the future? You
bet! My wife and I are expecting our
first child, and it's already a very
very active baby. (The OB-GYN asks if
we've felt the baby kick, and we just
about fall over laughing.)
Whether or not our
child inherits TS, I think we'll have our hands
full. And if our child does wind up having TS,
that's fine by me. Quite frankly, I'm looking
forward to it. My friend at work, the people I
met at the National Conference, and other people
I've known online are some of the finest people
I've ever met. If our children wind up
inheriting TS, then I know they'll be in
fantastically good company. I know I am.
Thanks,
A Happy Ticcer
8. Why None-Touretter's
Act The Way We Do
A
mother speaks of how she once dealt with an
adult that was afflicted by Tourette Syndrome,
only to discover 2 months later that her 5-year
old son was also afflicted with the disorder. It
is so easy for us to imagine ourselves in the
same situation she was faced with before we knew
and understood Tourette Syndrome.
I
would like to tell my story in hopes that people
with TS will have a better understanding as to
why those of us who don't have TS react the way
they do.
Last
summer I was working as a waitress in a local
restaurant when a family, mother, father and 2
sons came for an early afternoon dinner. I went
about my routine the way I always had and this
family had been seated in my section. I went out
to wait on them and while taking their order the
father kept making strange vocal noises, jerking
his neck jerking his arms and doing all kinds of
things that made me feel very uncomfortable. No,
actually I was afraid of what I didn't know. I
ended up not waiting on this table to the best
of my ability because of being afraid of
offending him by actions or anything I may or
may not do.
Then
2 months later my son, 5 1/2 years. old,
starting making these awful jerking movements of
his neck and arms and facial grimacing. To watch
at him when this was happening, we looked at
each other (my husband and I) and said "oh
my God his brain is shorting out," we were
so scared.
I
wanted to cry, I felt so bad for him I just
wanted to reach out to him and kiss it all
better. Two days later we had an appointment
with a pediatric-neurologist. Our son was
diagnosed with motor tics, and said that we
would have to wait for a dx of TS until this
progressed more. So, we absorbed and read and
learned from what we had been told. Then after
we had time to settle into the fact that there
was nothing wrong with him I suddenly for no
reason began thinking about that customer I had
waited on earlier that year.
Then
it suddenly struck me that that was what my
customer had had, he had Tourette's Syndrome. I
felt awful for not being a better person that
day. I hope that this story can help so many
others with TS that do not understand why those
of us without TS react the way we do. WE are
afraid of what we do not know. Thank You for
letting tell this story.
Signed,
A
Mother who does not have TS with child who does.
9.
From Dream to Nightmare in 3 Short Years
This
story was sent to Tourette Syndrome Online from
the parent of an 11-year old adopted son.
Adopted at the age of 5 1/2 months, young Kyle
started showing signs of Tourette Syndrome at
the age of 3 1/2 years. He has struggled more
than most kids with the tics and associated
disorders but seems to being doing better. The
ordeal has taken a toll on his parents, but they
have endured through love, determination and the
rewards that come from joining a TS support
group.
That
afternoon my phone rang at work and
instinctively I knew it was to tell our long
awaited son was ready to be picked up. We jumped
on a plane and within 24 hours we became parents
of a blonde haired blue-eyed 5 1/2 month old
boy. The first 48 months were wonderful. Every
Sunday we attended church and at the age of 3 we
placed him in a children's choir. Only the best
private schools would do, and of course I would
never put him in daycare and always be
consistent in church.
Then
3 1/2 came. He started climbing walls , biting,
temper tantrums, no sleeping, banging on doors
with hot wheels. I began calling doctors but was
told he was too young for them to determine
anything other than he sounded like a normal
active toddler boy. We started getting
escalating reports of violent behavior from
preschool and they were not happy at all that
potty training was such an issue with Kyle.
Age
5 came upon us with a fury. Kyle became violent
with rage attacks and mood swings of extreme
anger {when I would have to restrain him for 30
min to 1 hr} to complete blissful child we all
dream about leaving us battle worn and baffled
on what had we were we doing wrong. He would get
so angry when feeling frustrated he would pickup
anything, be it a knife or rock or whatever in
his reach, and throw at his target completely
oblivious of the danger.
Then
one day we took him to an amusement park ,it was
very crowded and highly stimulating . As we were
walking trying to get around the crowd we
noticed that Kyle was not behind us. When we
located him , we noticed what was making him so
slow, every third step he had to stop and push
down invisible socks. This was the first of
several motor tics we were going to see.
In
the next month the national Tourette Conference
was to be in our town. Because he was to enter
first grade and could not get into any private
school because he was so far behind in his
reading, we had him tested at the public school.
He was then sent to a psychiatrist who then
diagnosed him with Tourette's ,bipolar,and non
compliant disorder with ADHD. We decided to go
to the TS conference.
It
was frightening along with eye opening. It was
here we met our present psychiatrist and began
networking. We also found out we were not such
terrible parents. Since then Kyle has been
hospitalized twice and in and out of therapy
which I don't know if the therapy is for him or
us.
I
have met people in the TS group that are closer
to me than my own family. At this point Kyle
just turned 11 and is doing better with choices
and beginning to get friends not many. He has a
tendency to ride them to doing only what he
wants to do. Younger kids seem to do best he can
railroad them better. The most recent issue we
are dealing with at this point is an eating
disorder developed when he choked on a popcorn
kernel and had a panic attack because he thought
he was going to die.
Since
this incident, his phobias are popping up (no
elevators , any bad weather is terrifying etc)
We are trying to detect if the is a power play
or a real disorder he has lost close to 30
pounds in 3 month period. Our school district
has been much better than most. We have gone
from mainstream (that didn't last long) to
adaptive behavior (which was better but no
education ) to a school in separate building in
a therapeutic setting as close to a hospital
atmosphere w/o being one .
This
seems to have worked the best, but again he is
not learning. Next year the school system has
ARDED and recommended that he go into his new
public middle and leave his present school,
going into adaptive behavior classes. Again,
here is a 5th grader that cannot read a
billboard getting promoted right out with 90% in
reading on report card. The one thing that keeps
me going is the sweet innocent light in my sons
eyes when he comes to hug me for no reason or
sees that no matter what happens in his bumpy
life , I will be there. I believe Kyle will be a
productive person in our society and by God HE
HAS EARNED IT!
Signed,
Loving
Parent
10. Tourette Syndrome
Tics Are Like Cheesecake Cravings
Beautifully
written by a young 18-year old young lady with
Tourette Syndrome, this story highlights the
difficulties of living with Tourette Syndrome,
dealing with it in the classroom, and the hope
that comes from the love and support of those
around us. She also describes for those that do
not have Tourette's, why it is so hard to
control Tourette tics and what they feel like.
If you love cheesecake you'll understand and
love her analogy.
Hi,
I am 18 yr. old and I have TS. I was diagnosed
with TS when I was 3 yrs old. My parents were
perplexed over my strange behavior. I think that
at first they just thought that it was normal
"kid" stuff. However, as my tics got
worse, they started getting concerned. My mother
is a speech therapist and works with kids with
all kinds of disorders, but she had never heard
of TS. That is until a parent she knew stopped
her in the grocery store and told her that her
child was just diagnosed with it. Then my mom
realized that I could have TS. She took me to
the doctor and he confirmed it.
I
have vocal tics and rapid eye blinks. When I was
little I tended to contort my body in ways that
I swear God never intended for any normal human
being to do!!!! I had to try to touch my
shoulder blades together and other strange
things. My blinking was so bad, my parents were
afraid that I might never be able to drive
because I couldn't keep my eyes open long enough
to see the road!! (Thankfully, that never turned
out to be the case!!)
One
of the worst experiences of my life happened
because of TS. I was in 4th grade and the
teacher was talking. One of the students raised
her hand, looked straight at me, and said,"
Look, I'm not trying to embarrass you, but can
you PLEASE tell me why you always sing songs
under your breath?" I was horrified!!
Thankfully, my teacher came to the rescue and
started talking abut how he always used to bite
his nails and never realized he was doing it.
Most of what he said though, I can't remember
because I too busy trying to fight back tears of
embarrassment. And even though I know that the
kid truly didn't mean any harm by it, to a
9-year old who's just been embarrassed in front
of an entire class, that explanation doesn't
help much.
OK,
for all you people out there who are still
reading this, I am going to try to explain to
you what it is like to have TS. Everyone who
actually has it will probably laugh at this
REALLY WEIRD analogy, but that is alright. Now,
imagine that you are on a diet, and you see this
piece of cheesecake, or chocolate cake or
whatever. You're looking at this gooey,
delicious, wonderful dessert, and all that you
can think about is that you're not supposed to
eat it. Well, that only makes you want it more,
right? So you sit down and eat this incredibly
healthy, incredibly tasteless meal. And all you
want is that piece of cheesecake. It's calling
to you. It's beckoning to you. It's saying eat
me,eat me. And the more that you try to resist,
the more it calls to you. Believe me, we've all
been there. And that's sort of what TS is like.
Now,
obviously we don't feel the need to eat a
dessert every fifteen minutes (right??), but we
do feel the need to do SOMETHING. Whether
it be to blink our eyes or make noises or
whatever, we HAVE to do it. It just feels right.
It's always there, always in the back of our
minds. And the more we try to control it, the
worse it can get. In other words, the more that
we try not to eat the cheesecake, the more we
want to.
But
remember everyone, there is always hope. I'm one
of the lucky ones. My tics are mild, and I
learned to control them. No matter how bad
things get, I know I always have love and
support, and you do too. It does get easier.
Just remember that life is full of possibilities
and that the cup is always half full, not empty.
Signed,
Cheesecake
and Tics
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