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The Tourette blog

I have been a surfer for all my life, I mean a real surfer. But seven years ago all that was over. I got the diagnos Tourette. I always knew I had a neurological disease, but I got worse. Ever since I have been fighting to get of the horrible brain killling medication and try some thing else. This is my story.

Uppdaterad: 2012-03-25

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I´m a robot, searching for Deep Brain Stimulation

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Empty, that’s how I feel… A Dutch reporter from a major newspaper asked me how I felt, this ofcourse for his article he was writing about me.

I gave him the
standard answers, you know, tired, upset, holding on, things like that. Now, after some time I realized that I am feeling none of that, the truth is that all of my feelings are gone. I think I am operating in some sort of robotic mode for the last 2 years.

Dont get me wrong, I am still fully in the fight and never give up untill I will get my so neaded Deep Brain Stimulation – but just know, two weeks after the reporter asked me how I felt, it struck me, I dont feel anything anymore.

I am just a robot, in “getting my Deep Brain Stimulation” modus……

For that matter, the latest update described in the Dutch newspaper article is that my new health insurer also refused to finance the surgery, although they held the conversation open, and gave me the right to a so called second opinion… I tried to explain to the healtinsurer that a second opinion is kind of hard to get at a point where you have been seen by literally every neurology Professor in the Netherlands who matters… In real numbers it would then also become a 27 th opinion… but hey, do they care, and hey, do I care?

An American neurologist gave his opinion, an Australian neurologist gave his opinion, 27 Dutch docters gave their opinion, and even an old Japanes friend spend his weekend driving up and down to a Japanese neurologist / neurosurgeon, to ask for his opinion. ( Thanks so much Hiroshi, you are a
great friend).

But never the less, my health Insurance claims for a second opinion, so I will provide them with a second opion.

And every one thinking the European problem is caused by Greece...

Kategorier:

Psykiatri

Uppdaterad: 2011-11-10

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I stop eating to get my surgery

Dearest friends,
 
after eleven years of non stop fighting against a disease, non stop searching for a medical solution, non stop batteling with a health insurance company , non stop arguing with doctors with ego's that appareantly are too big for them to handle, my body is giving me more and more signals it cant keep up anymore.
 
All of this above made me decide that it is time to put
the situation to a climax.
 
Starting right now I stop eating - I will remain drinking water and thee - this brings me to the two most likely scenario's;
 
Scenario 1 = I ll receive a date for surgery - that will get my smile back on my face again - and will enable me to work on a somewhat descent future
Scenario 2 =  Guess what happens when a person doesnt eat anymore..
 

Uppdaterad: 2011-05-18

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Do you guys think I maybe can become swedish?

So I was just thinking myself, writing this blog on a Swedish
website..and also reading about the Swedish neurosurgeon and his
thoughts on deep brain stimulation.
 
Just a thought....since I am searching hard to make a future for myself and my girlfriend.
We are both hardworking :), more then positive towards life, last
years of sicknes I spend aquiring my bachelors degree and now at masters
level ( trading forex, indices, commodities)..
 
Both fluent in English, an certain of a near fluency to be reached in the Swedish language.
Allready practiced Swedish language some years ago :))
Love Sweden, found it a very beautiful country! Totally wish to settle if Iwe got a change to do so.
 
So hereby the question to all Swedish people outthere, Swedish people, Swedish businesowners:
 
If anyone would have a joboffer for me, financies is what i studied
for and love to do, even though working hard with my both hands also
love to do that!!!  As a new Swedish citizen I could get my DBS...then I
would be healthy, and me and my soon to be wife Gina would make two
hard working and more then positive new Swedish ciitizens :)
 
The only thing between being positive all day, working hard, doing nice things, is that...DBS surgery....
 
So someone, give me a change to work hard again!
 

Uppdaterad: 2011-05-13

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Should I just shut up and be sick for the rest of my life?

So, just looking at this letter again. Letter that says I should be sick for the rest of my life..
 
Looking at the name of the medical advisor that turned my request
down  (I dont believe in companies but in people, a company is only
another name for lots of people), so thinking what this medical advisor has to gain by turning my
request down, would he get a new car out of it, would he get an extra
christmas bonus, or worst of all, wont he even care and just turn it
down and care less???
 
Wondering how it all works downthere at the CZ groep!
 
Wondering if this medical advisor realized he just finished all future expectancies of mine?

Uppdaterad: 2011-05-12

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Do the want to kill me? They say no!

Today I just recieved a letter from my healthinsurance company, the letter I was waiting for...
Waiting for the good news for them financing my DBS surgery..
 
And guess what happened, after all these years I got a dry letter, with two sentences.
The first saying they recognize I have an untreatable disease. The other sentence saying they wont finance anything, in other words, they are not gonna pay a single penny....
 
Hmmm, I am reading this letter again, and they : recognize I have
an untreatable disease" ,but they also wont help me, dont come up with
any other ideas, they basically tell me to rott away....haha, and they
also wish me a very good day at the end of the letter...
 
So, CZ group ( part of the Delta Loyd group ), thanks for screwing up my life!
 
To pissed right now to be finishing this blog, right now facing 20
years to life, and for what crime....having Tourettes and being
sick!!!!!

Uppdaterad: 2011-05-11

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I want to start my life with my new family, but first surgery

After first written a complete page in this blog about again.....how
sad I was, how unfair it all was...I decided to press the delete button,
and now start over at the beginning of this blog, and tell you how my
life is gonna look like after getting my healt back again, ofcourse
after a good surgery...

Here it comes...:) :) ( and I just cant wait to get started with it all)

First of all I will move to Peru, to be together with my so wonderful girlfriend!

Like they phrase goes..., after every great man goes a great
woman...well...I cant call myself a great man, :)) however that my
girlfriend is a great woman, thats a fact!!

She has been supporting me so much, loving me, and most of all, she
believed in me, all the way! So we decided to live together in Peru,
also we are planning a weddingdate :))

Further we are gonna raise a family and be very happy together!

What do I wanna do more; well first of all there are so many great
and super interesting books i wanna be reading! It is kind of funny, all
of my friends continuously asking if I am looking out to go surfing
again...

Looking forward the most is reading ( since I havent been able to sit
still for more then 5 minutes lenght the last 9 years) and then
ofcourse, have great conversations with friends and new family! Surfing
was great, but lots of other great things in life.....

Haha, and well, I guess I still have some genes of my fathers in me,
so I guess that after my first goal of wanna walk lots of Inka trails,
slowly wanna start running again, slowly wanna run a marathon, slowly
wanna run two marathons, slowly wanna run a marathon starting first with
a little 3,8 kom swim......well, we will see where that goes :)) :))

The mainthing however is that me and Gina, just want to be happy, lead a normal and nice and love filled life! Thats all :))

Uppdaterad: 2011-03-16

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I decided to find the best cure for my tourettes - for my life

Fakta om Haldol

Haldol är ett neuroleptikum som bland annat används vid schizofreni, psykos och i vissa fall mot tourettes syndrom.

Varning för: Avbryt inte behandlingen med Haldol själv, utan att samråda med...

Today I am traveling to accept the keys for my new house, in a new town,
starting out new!

Its has been a year ago, exactly by the day, that I
left my previous house on a somewhat weird way. Living in a small
backward town, situated on an little Island in the northsea, my life
had been coming to a dead stop ever since my tourettes and epilepsy became worse!

Local doctors feeding me the brainkilling poison called Haldol. Most of
the population looking as if I was a lune, and my family left,
trying the hardest to cool the other way! One time even giving me a ten
rudes ticket to the local sunbed saloon, if i would get a new tan, the
tourette would get better ivernigjt she told me!  It was clear to me,
this town and people werent ready to hear and accept the word
tourettes.

Meanwhile getting sicker and sicker and knowing I wasnt get
any help I decided it was time for action!

I wrote a letter to my
tendant to give my two weeks notice for my house rent, I ordered a big
dump truck and dumped all of my inventory at the locale dumpyard. I
packed my most personal stuff, limiteren to the size of two big
traveling bags, and off I went, of to travel to go seek and find a cure
for my tourettes. I didnt have a clue where to go but in the back if my
mind i knew this was necesserry if i ever wanted my life back.

Now Ive started that journey.

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