Tourette
Syndrome Life Stories
Story No.'s 11-15
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Stories
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Story
No. 11
Hi Craig,
My
name is Cindy and I have a 14 year old son named
Jonathan, who at the age of 8 was diagnosed with
Tourette's. Jon also has ADD,
Dyslexia (mild) OCD. He is also a very bright
boy. He has a very big heart. He is also scared
to let anyone know he has TS. If his peers ask
him why he does that with his mouth or makes a
noise etc... He just answers because I can. He
also has a mild case. His tics change a lot. He
may shake his head and clear his throat a lot to
twisting his mouth all out of shape to blinking
his eyes repeatedly, he has had trouble
swallowing his food before because he was having
a tic way in his throat that wouldn't let his
food go all the way down and he was throwing it
back up. And trying to keep his stress level
down to help his tics, this is a chore in
itself. School is a whole new ballgame. We live
in a small town in Texas and we moved here when
Jon was in the 4th. grade and I set up a meeting
to let all the teachers know of Jon's special
needs in school. And not one of the teachers had
even really heard of Tourette Syndrome. Jon is
now in the 8th. Grade and it has been a tuff
haul. But it has also helped Me in trying to
learn more about TS. We do not have a
support group near us. It is about a 2 hr. drive
away. And to my knowledge Jon has been the first
child in our town to come forth with TS. I'm
sure there may be others but I have not heard of
them and the schools have not. Jon has been the
first. Jon has also been an inspiration to a lot
of people that if you are determined you can do
anything.
Story
No. 12
Hi
Craig,
I
really don't know why I am writing this, but I
think my input to this disorder might help
someone. I was married to a man with
Tourette's for 11 years. I loved him with
all my heart we have 3 daughters, all together 6
children. I feel that due to his illness
he turned to drinking, being drunk and nasty at
least once a week really tore me apart.
When he got drunk it would release all the built
up pressures he felt all week. He refused
to take medication due to his paranoia of any
side affects the would have. More recently
and after many years of hell I realized he is
and has been using other illegal drugs. He
would get the drugs after he was drunk.
What
a life! Anyway its all over between
us. I will never go back to
him. Its just a shame that he never wanted
to get any help and take the chance of a side
affect. He will probably have liver
problems or OD on drugs anyway. I often
wondered if their were many others with
Tourette's that turned to drugs and drinking as
an escape. Thank you for listening.
Anna
Story
No. 13
Over
the past few weeks I have noticed that my son
has been blinking his eyes uncontrollably and I
was getting concerned with this. It
was not long before my husband noticed it and so
did my daycare provider. I
remembered I topic on 20/20 that I had seen
regarding Tourette and instantly made a
doctors appointment for my
son. The doctor thought that I was
crazy. I left the doctors office very
angry. I decided that I would go online
and see if there was any information regarding
this disease and I thankfully found your
site. I read heart warming stories of this
and to my realization my son was also
experiencing several other things that could
link him to this as well. I am determined
to find someone somewhere who will listen and
run some tests that may or may not confirm what
I think he may be going through. I will not give
up because my son is counting on me to help him
deal with whatever it is that is happening to
him. Thank you for your site. People need
more people like you who care enough to share
their experiences with people like me to better
understand that regardless of the situation
there is always someone out there going through
exactly what you are.
Best Regards,
Valonda
Story
No. 14
Dear
Tourette-Syndrome.com
I am
speech impaired due to botched up brain surgery
done twice during the summer of 1991 in New
Orleans, at a cost of almost 1/2 million
dollars, which forced me into bankruptcy.
This was to rid me of Tourette's
Syndrome or kill me. It left me speech
impaired, poor balance, loss of fine motor
skills and slowed my metabolism to the point I
gained all this weight and now have diabetes,
which I now have under control. Imagine
being where I was, 1500 miles from home with no
way to ask or write for help.
They
seemed to think me a vegetable and strapped me
into a wheel chair during the day, for 4 months,
but I learned how to free myself after only 3
weeks. Pretty good trick for a
vegetable. Tourette Syndrome is a
neurological disorder characterized by
involuntary tics, cursing and/ or noises, O.C.D,
A.D.H.D./A.D.D., sleep disorders, learning
disorders,
among other symptoms. It's nick name is the
"Waking nightmare" for it truly is
because you can never wake up others to the fact
"YOU are a person ,TOO!
I
had the surgery because I had the worst case of
Tourette Syndrome ever seen to that point, and
still suffer from it. I had already
blinded myself in the left eye among other
things due to SIB (Self Injurious
Behaviors). They said I'd never
drive again, or live alone nor care for
myself. Well I've not only done all 3 but
took and passed all 5 C.D.L. exams in record
time of just 2 hours. C.D.L. = (
Commercial Drivers License). And now
refuse to renew it even though it may be
"grand-fathered" in! And then
after turning a practice job interview with a
company called SCIRTS (South County Integrated
Rural Transit Service) into a REAL paying job
driving elderly and disabled all over the state
via a wheel chair equipped bus.
I
even used the radio with my own voice as we had
mobile radios in each bus. But I was
terminated for they wanted cheap summer
help. I am now glad they let me go for
I've become aware their standing with
disability groups in RI is extremely
low. I helped run a pizza
restaurant and also delivered for them
which was a MUCH better paying job than
bus driving. And I also had a part
time job with the YMCA in South County RI until
they discriminated against me. But I
just lost both jobs due to my new diagnosis
of Tussive Syncope (which was caused by my
botched up brain
abortion)..........so again I am unemployed and
broke!
But
as is my way , I don't know how to quit so
my Town will hire me this May to become a paid
"beach bum" and do all the data entry
for the town's beaches (as this is a beach
resort) :) .......... Plus on March 9,
1997 I passed my certification to drive the Red
Cross Emergency Response Vehicle
(which I've been a member since 1962) and an
active member of the Red Cross Disaster Team
since 1993 (all the time being physically
disabled!). But they suspended me for doing my
job with the RI Governor's Handicapped
Parking Commission and never followed through
with their investigation (even though I have a
letter stating they would).
I've
been misdiagnosed 33 times that I'm aware of,
until at age 29 ,six weeks after my wife walked
out on me due to my "strange
behaviors" I diagnosed myself. As I was
unpacking my things into my new apartment, I
heard strange noises on TV. I had the TV
show "Quincy, M.E." and he was doing a
show on the orphan drug bill and was using
Tourette's as an example. At that
moment as I watched the show, I saw and heard
myself. The boy on the show was Adam
Seligman who also suffered with Tourettes until
just this past February 1999, past away in
his sleep( and will be sadly missed by
all) and was married a nice
woman who also has Tourette Syndrome and they
have written many books on Tourette's.
When
I met with Adam for the first time in November
1996, at the National Tourette Syndrome
Association (TSA) conference in Burbank ,
California., he told me that while I was
testifying at the FDA, he was taping
the second episode of "Quincy,
M.E."(on TS and Myoclonis for the orphan
drug bill), they were keeping close tabs on our
progress at the hearings to legalize Pimozide (Orap)
for use with Tourette's, which slowed the taping
of that TV show right down!
Dr.
Oliver Sacks has written many books on
Tourette's and is an expert on this disorder
that plagues many people world wide. For
example he wrote the movie
"Awakenings" and the book "The
man who mistook his wife for a hat".
Dr. Sacks gave me an autographed copy of
"Awakenings" at the annual TSA meeting
in NYC in October of 1992. My diagnosis
was confirmed by Yale 6 months after my wife
left and I am proud to say that I've been a
guinea at Yale since August 1981.
To
lose your wife and then learn you suffer from a
disorder with no cure is to say the least,
devastating, but I've been actively fighting
this disorder since 1981.. I've had a few firsts
with Tourette's, such as helping to get Pimozide
(Orap) legalized for use with Tourette's by
being the first to take and try it in the USA
and then testify at the FDA in Rockville,
Maryland on November 1, 1983, participating in
the first Yale/Brown University's studies with
Fluxotine (Prozac) and even trying a drug at
Yale School of Med. that will never be submitted
to the FDA for further testing due to it's
extremely violent reaction. It stopped my
TS totally but made me extremely violent.
Now
being one of the few (if the ONLY male) to
survive the "Butcher of Tulane"
attempts to cure Tourettes' which still remains
incurable. This has lead to my being more
disabled and alone but more determined than ever
to help better the lives of ALL
disabled! On July 27, 1994 I
was invited to the South Lawn of the White House
in Washington, DC for the fourth
anniversary of the A.D.A. and met
President Bill Clinton and the First Lady plus
the Vice President Al Gore and his wife, Tipper.
I
had to be awake for both operations and remember
counting down from 100 and about 80
stopped being able to speak. As
there are no nerve endings in the skull, there
was no pain. They placed electronic probes
in my head, after opening up my skull and
stimulated my brain until I began to tic
violently, then "lesions" or wounds
were placed in my brain to stop the signals from
reaching the body and hoping it would correctly
interpret the messages ,but it failed. I
went through 2 neurological procedures
that stereotactically, placed lesions in
my brain. They were bilateral anterior
cingulotomies and bilateral infrathalamic
lesions in hopes of stopping the incorrect
messages from reaching my brain. The surgeon had
cut too deep in my brain and had left me more
disabled than before and then left for a month
vacation in Australia.
I've
allowed my Tourette's to rob me of employment,
friends family, children, housing, a wife or
some one to love me for myself.
Tourette's has also helped turn my family
against me for I recently noticed that ALL
photos of me have been
removed from my parents house as has my portrait
that has hung on their wall since I was a
child. I don't like to believe this is a
conscious act but rather a mistake,
But too much has happened for me to believe
otherwise, so I feel now it's their loss, and
unfortunately, mine too!
Before
my surgery my IQ was 119 and after an IQ of 123
and now due to being able to focus during the IQ
tests , I now have an IQ of 152. Average
IQ is about 100 and genius begins at 140, so
:0) I had 18 active years as a volunteer
firefighter/EMT and 20 years in the same
department. But per usual, my fire company was
no longer appreciated by the paid fire union so
the mayor caved into union pressure and closed
all 4 volunteer fire departments in our city,
thus helping to kill the tax base of Cranston,
RI. Since the Cranston Fire Union had the
mayor close us down, the mayor is out of office,
the fire union is very hostile to the canteen
truck personal owned by the Providence Fire
Dept. but manned by many of the former Cranston
Fire Dept. Volunteers, only proving what we as
firemen have long suspected, that the City of
Cranston is protected by impotent wimps!! :)
When he had to raise taxes to replace us (which
were free for over 100 years) many businesses
and people sold and move out of that city. And
all the new apparatus we bought is now owned by
the Jamestown RI Fire Dept. which really made
Cranston ill !!! :)
I
can't even get a date any more since all the
woman treat me as if I'm stupid due to my poor
attempts at speech. Now with little or no
contact with my family, I preserve and
survive! I've been retraining my brain to
write and speak. After 5 months of driving
to Spaulding Rehab Hospital in Boston, 2 days
per week, my speech remains barely intelligible
and due to my persistence, I am now able to
write a little by hand although at times it is
still hardy legible. After a tune up
in 1995 at Spaulding in Boston, they released me
due to the fact that I designed my own speech
therapy better than they. I
now speak on my amateur radio almost every night
for my speech therapy.
R.I.
Dept. of Voc. Rehab (O.R.S.) bought me an IBM
Thinkpad notebook computer (which has since
died) with speech (Dec Talk by Digital), with a
printer, fax modem, batteries and a case big
enough for all this. I was then asked to
serve on the state of RI Master Price Agreement
Committee to write the list for goods and
services for the disabled so NO one else will
ever need to wait 3 years for items
to help them get back into life as I did!
Plus I was told my small Poqet PC Plus computer
would not support speech so with the help of a
fellow ham radio operator, we put speech in it
and proved them wrong.
I
have since completed a computer training course,
which I also helped to teach. I have found a
fanny pack speech enhancer that helps restore my
speech ability and the state just
purchased of this device at a cost
of $5500! But
after the company the produces it, E.S.E., had
me return it for repair, they are holding it
hostage until the state pays even more for
repairs that they made that were not even
needed!
March
1,1995 I moved to Great Island off the port of
Galilee in Narragansett, R.I.. And
for a disabled person to move and restart their
life alone is really a challenge! But I'm
where I've always wanted to live, by the
ocean. The water is about 50 feet from my
door which opens up to a dock. But on
January 20, 1996 the North Cape Oil Spill took
place right near my place and for the next 7
days, I worked 14 hours per day helping the Red
Cross Disaster Team there. So on March 23,
1996 ( on my 44th birthday) I was awarded a
"Certificate of Special Congressional
Recognition" by the US Congress, without
the knowledge of any of my family( who still to
this day has NOT seen it!)
Due
to my landlady's? illegal termination of my
lease, I had to move. So on May 1,1996, I
again moved. But this time to a bigger and
nicer place than I've ever had. And I am
very happy here with a semi-secluded sun deck
which has an
ocean view! I served on the Board of
Directors for TECH acceess of RI, 1993 to 1998 (
we help the disabled learn to use
technology), the Human Rights Board for
Spurwink Schools in RI, The RI Tech Council (RICAT)
after the state asked me to help write the
RI Federal Tech Grant after they failed 4
times. Plus I did serve 2 years on the Board of
Directors of OSARG (Ocean State Amateur Radio
Group) of which I am still a member.
I
had a part time job at R.I. college helping
teach the state's first Personal Self Advocacy
program that I helped design, but it got nuked
by the "Newt" (as in Gingridge).
And I have been appointed to the R.I. Special
Senate Commission to
Study the Enforcement of the Handicapped Parking
Laws in R.I.. We just rewrote all of those
laws to make them easily enforceable by the
police! Plus I testified and they are now
holding up 2 of these laws due to politicking
(which is MORE important in RI than peoples
rights!) so watch out all you "literally
challenged illegal parker's" We
ARE going to get you! (someday). UPDATE: 2 of
these laws passed!!!!!!!!!!!!!!!!!!! and we now
have new colored placards that I helped
introduce.
And
now the RI Red Cross has suspended me for doing
my job of taking photos of illegal parker's. But
that's another nightmare. So MAYBE now
I'll be able to find a spot to park before I wet
my pants, again!
The Governor of RI , Lincoln Almond, on Sept. 4,
1996 appointed me to a 3 year term on the RI
Developmental Disabilities Council ( DDC)
changing my Associate member status to Full
membership! And on Sept. 18, 1998, I was
elected as
the Vice Chair of the State of Rhode Island
Developmental Disabilities Council and take
office as of Oct. 1, 1998 until October 1, 2001.
I was asked to serve on the town of Narragansett
School Committee's (where I now live) , A.D.A.-504
executive committee, which I gladly accepted for
in this way I can help children with the
knowledge I've learned. I also just
completed a life long dream of traveling cross
country via train. I went by double decker
train from RI to Burbank California to attend to
National Tourette Syndrome Association
Conference. This took 3 days each
way. Not bad for a "dummy" to do
this alone! And now traveled to Washington, D.C.
Oct. 15, 1998 to attend the National Tourette
Syndrome Conference as The State of RI
Rep.
As
with everything I've ever liked, my rescue
company was closed down on July 1, 1997. South
County Ambulance and Rescue Corps. = SCARC.
(which I was on for almost 2 years)
removed me from the riding crew, (for they
didn't practice what their own by-laws said
about equal rights for the disabled and told me
I was NOT even a member when I tried to run for
an office) and then many members began to
quit over the next year and the town of South
Kingstown closed them, down, so no more "SCARC".
By
the way, I am disabled but NOT handicapped for I
refuse to allow anyone to place a handicap on
me. The disabilities are physical and not
of my control but the handicaps come from the
ignorant who are afraid and refuse to allow
disabled people to contribute to life. And
those are the ones I gladly fight! My motto
which I live by "I refuse to listen to the
word NO for to me it means TRY HARDER" is
shown by what I've written above.
Bob
G
Narragansett,
RI
.
Story
No. 15
Dear
Craig,
This
is my speech I gave that helped me win the
election for the Vice Chair position on the
State of RI Developmental Disabilities Council
on which my term as Vice Chair starts October 1,
1998 and ends October 1, 2001.
I am not as pretty as most of you. I do not
speak (or write as the case may be) as
eloquently as some.but my true life experiences
in the world of disability and how I've
struggled and overcome, makes me very
qualified for the job as your Vice Chair As for
actual qualifications: I serve on the
Narragansett School Committee's ADA- 504
executive board, The RI Governor's Commission to
Study Handicapped Parking, The RI Master Price
Agreement Committee for Goods and Services for
the disabled, and helped design the
first Personal Self Advocacy course of study at
RI College for the UAP with Dr. Susa.
I
have also done ADA awareness
training at Bryant and CCRI. I helped
write the RI Tech Grant that was funded for 10
years and now serve on the board of The
Rhode Island Council of Assistive Technology (RICAT).
So much for my resume. Often people
mistake my agenda as being a "me
first" agenda but as my experiences are not
always universally applicable, I accept
and respect other points of view. I listen
to all points of view equally and only try
use my own experiences as an example as I
do not have ALL the answers.
Now
many of you know that I suffer from speech
impairment from botched brain surgery to rid
myself (or even kill me) to cure my Tourette
Syndrome for I mistakenly thought I had nothing
to offer others, while the truth is, the mere
fact that I've survived while others have failed
and died due to Tourette's, makes me an
exception .and the only male survivor (I am
told) of this type of neurosurgery!
My
Obsessive Compulsive Disorder (OCD) is Tourette-ic
in nature which means it is more pronounce than
most at times, but it is something I have
learned to suffer with and deal with on an
hourly basis. I try to use humor (if not a
warped sense of humor ) to defuse problems I may
cause due to my OCD. Inappropriate"
can be my middle name at times, which is why I
welcome help at these embarrassing moments by
asking others to make me aware that my OCD is
out of whack!
Just
yesterday, my friend who cooks at the restaurant
across the street, asked me that when I call to
order and "that service I use"
(the RI Relay for the TDD) to call early.
Then I got to thinking, why did he call the
relay "a service" and not the Relay?
Now it may be my own OCD in play OR it may be
that people still don't know that this service
is available to everyone. It is the job of
the DD Council to get the word out to ALL, that
people with disabilities are the
same as everyone and just need a little help to
live as everyone. But most important ,as is in
my own case with my poor speech, we the
disabled, need to be given time to speak and be
heard and to live life as everyone else.
With
your support and vote, you can show Rhode Island
that even a person like me with Tourette
Syndrome, may become a fine Vice Chair of
the DD Council and contribute to making life
better for all people with disabilities.
Bob
G.
Narragansett, RI
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