FULL CREDIT TO CBS PLEASE! But based on the searches / hits, a lot of people are interested in Tim Howard, Tourette’s and his life.See /read the actual interview at: http://www.cbsnews.com/stories/2005/01/13/60minutes/main666797.shtml

For those who don’t want to take them time to watch it, I am going to paste the text of the article by Rebecca Leung. It’s worth reading!

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(CBS)  Chances are you have never heard of Tim Howard, and if you don’t follow a sport Americans call soccer, there is no reason you should know the name.

But to the rest of the world, which calls the sport football, Howard is the American goalkeeper for the most famous team in the world — Manchester United of England.

So how did Howard become one of the best known Americans in international sports, while escaping the attention of his fellow countrymen?

The story has an almost fairy-tale quality to it, especially since Howard fights a daily battle with a neurological disorder called Tourette’s Syndrome. Despite his talent and his confidence, and everything he’s overcome – he, too, still wonders how it all happened. Correspondent Steve Kroft reports. (Watch the video!)

“Look, Manchester United, again, one of the biggest soccer clubs in the world, needed a goalkeeper. and they went out and got me,” says Howard.

“You know, I think there’s some other guys that, if you gave me the decision to make, I might have got some other guys.”

But Manchester’s fans don’t want any other guy. In his first season, Howard was voted best goalkeeper in the Premier League, allowing just 47 goals in 44 matches, with 14 shutouts — and helping the team to its first football association cup in five years.

“It’s incredible. When I first got there, I told people it was like traveling with a band of a rock stars. You go to a hotel in the middle of nowhere and there are people there,” says Howard. “The city lives and sleeps for the team. It’s incredible.”

And it’s never bigger than on Saturday afternoons, which is game day all over Europe.

“It’s intense,” says Howard. “You pull up to the stadium three hours beforehand, and you come inside and you can just hear it. You know, all the rustling. And it sounds like a thunderstorm.”

As Howard and his teammates begin their pre-match warm-ups, the Manchester faithful warm up their vocal chords between pints at the pub, with a song for every player, including their American goalie.

“People here work all week just to come here on Saturday. They don’t work all week for something else,” says Howard. “They work hard, so they can come here for 90 minutes, and give everything they have.”

Game day in Manchester is a tribal experience, a sea of red jerseys flowing towards the old Trafford Stadium on a river of beer. And, as Tim Howard is finding out, keeping the goal for Manchester United is not a job for the faint of heart. He is protecting the dreams of an entire football nation.

Is he becoming a star? “No, I think for me that is unhealthy,” says Howard. “Right when you start to think that you’re somebody, that is when you get a transfer, when you start playing bad.”

It is heady stuff for a 25-year-old “Yank” who spent the off-season living in total obscurity in Memphis, Tenn., with his wife Laura and their dog, Clayton. They are still able to walk down Beale Street totally unaccosted.

“It’s great. It’s quiet, it’s easy living, which is important,” he says. “[Not getting recognized] is always a good thing for me. … I don’t feel the need to be seen, to be glorified in any way.”

But like it or not, he gets all the glory anyone needs in Manchester. It’s England’s second largest city, with 7.5 million people in a metropolitan area that makes up the industrial heartland.

But the team’s following is global. With fans in more than 125 countries, United is widely considered to be the most successful sports franchise in the world, valued by Forbes magazine at a billion dollars.

Its Scottish manager, Sir Alex Ferguson, was even knighted by the queen after bringing home a European championship, one more sign of just how seriously all of this is taken.

“There was another famous Scotsman called Bill Shankley who said, ‘Football is not a matter of life and death. It’s more important than that,’” says football journalist Peter Fitton, who has been covering Manchester United for the last 20 years. “That has been the ethos that’s driven Alex Ferguson throughout his time at Manchester United.”

Fitton says the one thing that the team had not been able to do was to find someone who could fill the shoes of retired goalkeeper Peter Schmeikel, the great Dane who played a huge role in championship seasons during the 1990s. He left in 1999.

“Then Alex tried a lot to get it right. An Italian, a Spaniard, an Australian, an Irishman,” says Fitton. “There were six people he tried before he landed on Tim Howard.”

At the time, Howard was the third-string goalie for the U.S. national team, and making $30,000 a year playing for the New Jersey Metro Stars in front of 20,000 people. But his size, quickness, and athleticism caught the eye of Manchester United.

A few months later, after watching Howard play for the U.S. team in a game against Mexico, Manchester United called back and offered him a contract.

Did he know what he was getting into? “I thought I did,” says Howard, laughing. “After a year, I was sadly mistaken. It was bigger than I could have ever expected in every way. The magnitude of each game, the pressure in every training session, the responsibility that’s put on you by the club, by yourself, by the players. It’s bigger than you can expect in any aspect.”

But acceptance has not come easily, because Howard suffers from something called Tourette’s syndrome, a neurological disorder of the central nervous system that affects 1 in 2,500 people, causing involuntary tics, spasms and muscle twitches.

Howard says Manchester United knew he had Tourette’s syndrome. “And the wonderful papers over in England dug some stuff up and wrote some stupid headlines,” he says. “‘Manchester United wants to sign retarded goalkeeper … swearing savior, because, you know, they thought everybody with Tourette’s syndrome must curse or something ridiculous.”

In rare cases, Tourette’s syndrome can cause sudden verbal outbursts and swearing, but Howard doesn’t have those symptoms. He was diagnosed with Tourette’s when he was 9 years old. His mom first noticed symptoms associated with obsessive-compulsive behavior, repeatedly counting and touching and straightening things. But early on, he refused to let the affliction over shadow his ambition — and he has become an activist, trying to dispel the ignorance and myths about the disease.

Did it create problems in school? “Fortunately, I was a big kid. I was a pretty popular kid, and I participated in every sport,” says Howard. “So, it was kind of, like, the only thing they could do was whisper it behind my back.”

“I used to have a game I would play. I’d be ticking, or twitching, or doing something, and I could hear someone whisper, ‘Watch Tim,’” adds Howard, who explains how he controlled his outbursts. “So right then, I’d turn it on and I’d make sure I didn’t tic. And now, they were thinking the other person was crazy, because Tim looked, he was normal, you know?”

Was he controlling it now, during the interview? “I’m comfortable now. I’m OK. I think you’ll see sometimes that I blink too much and I clear my throat,” says Howard. “But you know, right now, I’m OK. It’s at bay. It’s being nice to me today.”

He says it’s difficult to control when he’s nervous, stressed or anxious. So how does he control it while being a goalie for Manchester United? “Go figure,” he says. “I know. That’s the catch.”

His job is the most stressful on the field, protecting a goal that is 24 foot wide and 8 feet high from curving 65-mile-an-hour shots by the best players in the world. He may touch the ball only four or five times during a 90-minute game. And when he does, his teammates and the fans are all holding their breaths.

“There are 11 guys on the field. When 10 of them gets beat, there’s always someone else to help them out,” says Howard. “When you get beat, there’s not. It’s just, that’s it. You’re the last line of defense.”

“I think Manchester United had their concerns. I think they liked me as a player. They wanted to see me as a person. And they certainly wanted to see how much the syndrome affected me,” says Howard. “They’re making a multi-million-dollar investment. They wanted to see how it affected me, and yes, would that one goal cost them?”

How long did it take for him to win their confidence? “I don’t know,” he says, laughing. “I don’t know if I won it yet. I don’t know.”

When 60 Minutes talked to him a few months later in Manchester, on the eve of United’s home opener, his Tourette’s symptoms were more pronounced. He has always refused to take medication for fear it might dull his senses and reflexes.

“It’s just a battle of the will, your willpower versus what your mind is telling your body to do,” says Howard. “And so it’s about suppressing those physical movements, those vocalizations. It’s tough to explain, I suppose.”

But he says he can do it.

“If you told me to sit in a room, and you had a million dollars cash stacked right there and said, ‘Don’t move, don’t twitch, don’t do anything,’ without a doubt, the million dollars would be mine,” says Howard.

But what if somebody is coming toward him, preparing to fire a shot on goal?

“It just doesn’t happen. They could be out there by midfield somewhere and I may have a twitch, a tic of the eyes, of the head, of the arm,” he says.

“But when they get in there and it’s time to go to work, it just doesn’t happen. And maybe one day, it will. and maybe I’ll get fired for that. I don’t know. But I can deal with that, too. I’ll just say something was in my eye.”

But right now, there is no need to make excuses. Howard has the support of everyone in Manchester, and most importantly Ferguson, his manager.

“Not one inkling of trouble from him. His behavior patterns have been great. He never misses a training session,” says Ferguson. “He wants to do well and I think people who really want to do well generally do well. And that’s a great attribute he’s got.”

Has he come along faster than Ferguson thought he would?

“Oh yeah, he did. He’s had his first season. The glamour part is over,” says Ferguson. “What he did last season was showed his natural abilities. He now has to add to that, which, obviously, we’re working on. And if he has all these things, he’ll be a top goalkeeper.”

Howard admits he’s been playing pretty well, but says, “I think we can do better. There’s no question about that. And certainly, I can do better. But I’d say for the most part, OK.”

He hasn’t been giving up a lot of goals. “One goal is too many here,” he says, laughing. “I want a shut out.”

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See more Tourette’s postings at: http://layrenewal.wordpress.com/category/tourettes-syndrome/

Last night, Drew read aloud from a book. While this may not seem like a big deal and he has done this many, many times, it is the first time in quite a while that I can remember him doing that without any hesitation and enjoying it! (It was one of the Diary of a Wimpy Kid books by Jeff Kinney. If you haven’t heard of them, they are definitely a bit irreverent but very funny for pre-teens.)

After an incredibly heavy and hard week three weeks ago, the doctors are doing a bit of medication alteration with several reductions. It has been an adjustment, but I’m seeing more and more of the ‘regular’ Drew. His tics may be a bit worse, but I would rather see those than some of the other stuff.

(The question I want to ask is: “Why didn’t they do this sooner” but there is no point in focusing on the past…)

Thanks for your continuing prayers. Life still isn’t easy, but God never promised that it would be. We continue to rely on His strength each day!

Yours in Christ,
Marty

See previous Tourette’s Postings by clicking on the sidebar or http://layrenewal.wordpress.com/category/tourettes-syndrome/.

Un libro a un tempo tremendo e meravigliosamente pieno di speranza. I misteriosi abissi che legano il nostro corpo alla nostra mente esplorati tramite una serie di casi clinici,a volte inverosimili, vengono raccontati da un Sacks che ha profonda empatia per i suoi pazienti, rimanendo sempre stupito davanti alla forza d’animo che mostrano davanti alle incredibili malattie che sconvolgono le loro vite.

• TV-Tipp: Dokumentation im SWR zum Thema “Hirnschrittmacher” am Mittwoch,  25. 11. , 20.15 Uhr (45 Minuten).
• Alter Geheimdiensttrick, aber immer noch perfide: Psychose-Vorwurf – stellv. Chef der Securitate in Rumänien eklärt Literaturnobelpreisträgerin Herta Müller für verrückt.
• Norwegische Studie: Depression so gefährlich wie Rauchen.
• Na dann, prost! Täglicher Alkoholkonsum senkt angeblich Herzinfarktgefahr.
• Diagnose Depression per Telefon? Software einer MIT-Ausgründung ermittelt Stimmungslage einer Person.

The Pediatric Insider

© 2009 Roy Benaroch, MD

Mark’s frustrated. His son has gone through several months when he seems to blink a lot—then it goes away, then it comes back later. It doesn’t seem to bother the boy. One doctor said it was allergies, and prescribed an eye drop; another one says it’s a compulsion, and that dad should ignore it. What’s going on here?

Most likely, he’s got a tic. Not a tick—that’s a blood sucking beetle-looking thing—but a tic, which is a quick, short involuntary muscle movement. The most common tics seen in kids are blinking, followed by throat clearing; sometimes kids have a little quick facial grimace or a neck-turn.

You’ve got the wiring for a tic, too. Let’s watch yours. Go ahead, stop blinking. I’ll wait here. Dum dee dah dum. Still not blinking, right? It’s getting hard….hard to not blink…have to concentrate…so, do any fishing lately? no? ….wait …no blinky….wait….arrrgh blink blink blink blink blink blink. Aaaaaaa. That’s better.

What happened? Believe me, your eyes didn’t dry out that quickly. So why did you feel an urge to blink?

That’s basically what a tic is. It’s an involuntary movement—you can’t put it off, you’ve just got to do it. If you don’t, it gets harder and harder to stop it…until…blink blink blink! Blinking, in all of us, is like a helpful tic, an automatic mechanism to keep your eyes healthy. But sometimes that mechanism causes excessive blinking, or other sorts of quick involuntary movements that can’t be suppressed.

About 1 in 20 of us has a tic, and tics usually start to develop in early childhood. Usually, the individual tic goes away after a few months. But children who’ve had a tic in the past are quite likely, even after several months or years, to once again develop a tic, often a different one.

Do not tell a person with a tic to stop it. If he tries, the tic will become harder and harder to resist, until it returns in a more exaggerated fashion. The best therapy? Don’t talk about it.

Tics do get worse with emotional upset, anxiety, or tiredness. They stop completely when you fall asleep. Many people blame incessant throat clearing on “allergies”—but oddly enough, when they sleep, there’s no need for throat clearing at all. You’d think lying down would just encourage a nice pool of mucus, wouldn’t you? So why is there no need to clear the throat during sleep? Most throat clearers aren’t allergic—they’ve got a tic. But their minds “invent” the feeling of phlegm and the allergy story. Amazing, the mind, what it will come up with.

Most children with tics have only one, and it goes away on its own after a few months. No treatment is needed. Rarely, children develop multiple complex motor and vocal tics, often associated with difficulty concentrating at school. This is Tourette’s Syndrome—more serious, but far more rare than an ordinary tic. If your child has multiple tics and especially if school is becoming a problem, see a pediatric neurologist. Medicines are almost never necessary for simple, non-bothersome tics, but for the rare child with more serious tic issues medication can be very helpful.

Neusten Erkenntnissen zufolge sind nicht die bisher dafür verantwortlichen Protein Ablagerungen im Gehirn Erkrankungsgrund bei Alzheimer, sondern durch den Abbau der Myelinschicht.

Hirnschrittmacher, die vor allem Einsatz bei Parkinsonpatienten finden, helfen durch Tiefenhirnstimulationen auch Touretteerkrankten. Sie erleiden nur noch halb so viele Tics, wie vor dem Eingriff.

Wer beobachten kann, wohin sehr dominante, maskuline Personen schauen, richtet ebenfalls die Blicke auf die jeweilige Situation. Der zwingende Blick.

Wenn der Stress einem über den Kopf wächst … Bitte Zeit mitbringen, ist ein längerer Artikel

Durch genetische Manipulation werden Neurone dazu veranlasst bei Lichtimpulsen elektrische Impulse zu generieren. Durch dieses neue Verfahren soll vor allem geklärt werden, wie im Gehirn Erinnerung oder Suchtverhalten abläuft. Mehr zu diesem Experiment auf dem Gebiet der Optogenetik.

Gehirndoping. Aktueller Artikel über Ritalin.

Wer zu lange am Schnuller hängt, erhöht das Risiko einer möglichen Sprachstörung.

Against Medical Advice is written from the son’s ( Cory Friedman’s) first person perspective. a good choice for the story since it revolves around him and his medical conditions. Wildly popular and successful author James Patterson co writes with an old friend Hal Friedman (about whose family the story is based).

The journey through awful circumstances and near unbearable turmoil is made possible only by  the unquenchable hope of Cory’s parents and his own tenacity. struggle along with him through medical and psychological problems. along the way you will visit many interesting places and situations.

I laughed, I cried, I loved it. Thank you Friedman’s for sharing your story. Thanks James for helping make the story so compelling and tangible. I hope to imbue our tale with the same kind of grit and reality.

Imorgon åker jag och Roofer en sväng till Gällivare. Det är typ 25 mil enkel resa. Det blir å bo över på vandrarhemmet där man kan bo med hund. Vi ska å träffa lite andra änpeäffare och snacka lite om våra attänschånpråbblems in da hood åff lovikka :-) Mäjbi vi snackar om kånnsenträjschånpråbblems åkk. Å har ja tur får ja kaffe. Skoja ba, är det nåt man får här i norr så är det kääääf.

Norrbottningar överlag dricker kaffe dygnet runt om ni inte visste det. Kaffet har, sedan det kom hit, blivit vår käraste dryck om man nu räknar i liter, för visserligen går det en och annan dunk hembränt per nordkallotting per livstid, men INTE att det går åt så många supar som kaffekoppar inte.

De flesta tror nog att vi här uppe använder kaffe som en hälsningsfras. Men så är icke fallet. Det är en norrbottnisk normal-test. ”Hej, vill du ha kaffe?” frågar vi främmandet som dyker upp – och utan att vänta på svar trollar vi fram ett par koppar med nykokat rykande hett kaffe och säger “här”. Efter det vet man - tvärvägrar folk att dricka kaffe det första de gör när de kommer så är det med all säkerhet nåt fel på dem.

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På lördag ska jag träffa några tjejer som vill smyga igång nåt slags adhdkafé i Gällivare/Malmberget. Vi bestämde ingen tid tror jag.. det blir mot em nån gång. Sen får det bli en lugn vandrarhemskväll för mig och Roofer.

På på söndag klockan 13:00 i ABF-lokalen ska jag träffa ett gäng med föräldrar som nu vill starta en stödgrupp för föräldrar till barn med adhd, add, asperger, tourettes etc. och berätta lite om Attention. Sen blir det att åka hem och hoppas att dubbdäcken funkar som de ska.

AAAAAhahhahaaaaaa, war das geil!!

I like to move it, move it! 

I like to move it, move it!

I like to move it, move it!

We like to – MOVE IT!!!

Mein ertses mal seit langem wieder im Kupferdächle mit One Side Smile Am liebsten würd ich die vier Jungs mit heim nehmen und ins Wohnzimmer stellen

Hab aber schon einen Lieblingsschatz und dem würd es gar net gefallen… Würd ich auch nie tun, bin ja ne Liebe und klau keine unschuldigen Musiker

Natürlich haben die Jungs die Bühne gerockt, aber es ist ganz schön schwer die auf ein einigermaßen erkennbares Bild zu kriegen, da sie sich IMMER und SCHNELL bewegen (sogar der Schlagzeuger^^)

Als Vorbands waren dabei:

Tourette (WAAAAAHNSINN!!! Drei Jungs und ein Mädel am Schlagzeug, genial wie die draufgedroschen hat!!)

Van Bruel (gesprochen: “Van Bril”), net viel davon mitbekommen, hat aber gefallen. Kein Schlagzeug am Start, aber Beats ohne Ende

Und ein paar Bilders hab ich natürlich auch geschossen, leider von Tourette nicht :-/ Ich doofi… Sorry Jungs und Mädel!!!

Jetzt bin ich heiser, muss ja morgen und übermorgen nur tanzen, net reden^^

Nachm Kupferdächle gings dann noch zu McDoof und dann nach Hause, die traditionelle Heimfahrt *hihi*

So und nun noch was: Die Herren von One Side Smile mögen doch bitte in Zukunft zwei ihrer so genannten “alten” Lieder wieder übernehmen: Wenn schon nicht “Falling”, dann aber wenigstens “Own world” und “Maybe”. So. Punkt.Aus.Ende.GuteNacht.

Reading time: 10 mins (Contains no offensive material)

An Ideal Background?

Over the years I’ve changed alot.  People who have only known me since my children were born are often amazed when they find out that I used to be shy and unselfconfident.  Little did they know…

I was brought up in a very loving, secure, devout Christian household.  If you were to describe an ‘ideal’ upbringing, other than material wealth, we had it!  I was always well looked after and didn’t want for anything.  So what happened?

Nature or Nuture?

Well I think it’s called ‘life’, ‘the human race’, ‘teenage years’, ‘the world’, whatever you label it as it’s that something that my parents may have felt like they had very little control over.  Once I was out there in ‘the big wide world’, on my own, with all the influences pressing in on me that they didn’t want, I think that was wear the nasty bits began to creep in.  All those things that at the time may not seem to be a huge deal in their own right – the snide comments at school, the ‘catiness’ of peers, the pressure to look/dress/act a certain way from the media on all sides, all these things slowly but surely dragged me down.

I didn’t talk to my parents about that sort of stuff really but I’m pretty sure it wasn’t anything to do with how they brought me up as I consider them to have done a great job.

How did I feel?

At the time I wouldn’t have known how to voice what I was feeling inside.  I can only really do that on looking back.  I had no self esteem or self confidence.  I felt that I was insignificant, unworthy, unlovely.  That no bloke was ever going to love me just the way I was.  I thought that if they ever got near enough to know the real me they’d find out how boring, dull and uninteresting I was.

Comfortably Hidden

Even though I was clever I wasn’t ever near the top of the class, so I never spoke up as I was never going to get the answer right.  So I retreated into my little shell, that was comfortable, as long as only trustworthy friends ever got to see the real me.  As long as I didn’t have to speak up infront of anyone.  As long as I didn’t have to express my opinion.  As long as no one made me do anything that I might not be able to do or might look silly doing.

School Backfired

School could be torture.  I dreaded it some of the time.  Marks being read out in class -  I’d never be high up the list.  Having to read out loud in English lessons -  everyone hearing my voice and looking at me.  Walking down corridors -  I might bump into a bully.  Going into the toilets – prime place for being picked on.  PE – everyone would see I wasn’t very good at lots of it.  Gym class – I was terrible at all of it as I had no confidence in my body.  Getting changed after PE – we were forced to shower in front of each other “you’re all girls, you’ve all seen it before” we were told – I hadn’t, no one had ever seen me under my clothes and I’d certainly never seen other girls since I was very young!

Making a Mask

So I came out the other end of school, a gothic (emo), and soon after became a biker.  If you look like a biker you don’t get picked on so much out of school.  If you hang around biker pubs you meet guys who are seriously tough.  They really know how to look after themselves.  Kind of handy to know.  I didn’t consciously think this way at the time but looking back it was definitely a form of self defence.  And it worked.  But these days I can see through the masks.  I can see the pain behind them.  It’s not in everyone’s eyes but all too many times.  Often it can be well merited, that respect you give someone who looks ‘hard’ but sometimes it’s a well groomed front to hide the hurting little child inside.

The Warning Signs

I realised very young that if you get hurt then you get a loving person come and give you lots of cuddles and you soon feel better again.  I think out of this I started to use opportunities to my advantage.  I can distinctly remember having accidently cut my hand whilst playing in the garden and deliberately making it worse with a sharp stone – so that it bled – so that I got a plaster – so that I got more cuddles.

Attention seeking?

I wanted to describe ‘more cuddles’ as ‘attention’ just then, but the word ‘attention’ conjurs up images of someone enjoying the attention, of being the life and soul of the party, and that’s a million miles from what it was about for me.  That was the last thing I ever wanted.  At parties I’d ‘people watch’ from a ’safe’ place, some quiet corner.  Anything that caused people to look at me sent me running for cover, like a beetle when you pick up a stone.

Self  Harming

I started to deliberately injure myself when I was in my mid teens.  The odd accident here and there got me the reputation of being a bit clumsy.  If I had a genuine accident I often took the chance to exaggerate it.  One thing I have noticed is that lots of children love to show off their ‘wounds’ when they’ve had a genuine accident, you know the dozens of cut knees and banged heads, however as I got older probably into my teens this attitude changed in me to one more of shame as I knew I was lying about it and even though I ‘needed’ the sympathy that I got when ’showing off’ my wound it tore me up inside at the same time as I felt racked with guilt.

How often?

This varied during my growing up.  During most of my teens it wasn’t often maybe only once every few months, didn’t want to raise suspicions!  When it came to my last year of Uni it really reared it’s ugly head as an addiction, one that came with an almost unbearable amount of emotion.  I was so stressed out because of the pressure of my studies that I was thinking up ways to harm myself, but I couldn’t face the thought of someone else finding out that I had actually done this to myself.

I was the only one

A huge factor to bear in mind at this point is that I’d never heard the term ’self harm’ or ’self injury’ ever before.  I thought I was the only person in the world holding up this front of a nice, hard working, Christian student, who was diligent, kind and caring, meanwhile behind the scenes there was a whole other side to me that was heavily addicted to self harm and lying to hide it, out of control (on the inside), on the edge of coping with life a lot of the time and not a soul on the planet knew except me – I didn’t for one moment think there was anyone else in the whole world who was like me.  In one sense, obviously that is true – we’re all unique and have different experiences and different ways of dealing with things, but equally I now know there are probably thousands of others out there raging a war with themselves and others on the inside.  Screaming internally, silent externally.

So how did this begin to change?

After I graduated much of the pressure was immediately lifted and I didn’t feel the need to harm so much, but it was still very much there as a part of me.

I was still going to church every week but hadn’t felt ‘into it’ for years.  I knew it was the way to go long term – most grown ups I knew at church seemed very stable, down to earth sort of people, enjoying life, knowing where they were going with life – unlike me.

One day in church whilst the singing was going on I felt myself begin to well up.  How embarrassing!  I didn’t even know what I was feeling upset about!  Unable to control this annoying flow of tears I legged it out to the kitchen and let go.  I cried and cried…still not knowing what I was sad about.  At this point I still hadn’t been able to understand what was going on inside me let alone realise that I needed help with sorting it out.

An Arm

Suddenly I realised there was someone next to me and a gentle arm was round my shoulders.  It was a friend who I didn’t know too well.  She’d come out to see if I was ok.  I knew right there and then what I was crying about.  I knew that I had to tell her.  I knew it was time to get this skeleton out of my closet.  But to explain?  She’d have thought I was a loon! But gradually over a period of 20 maybe 30 minutes I began to say words that I never dreamed of saying before.  I found myself able to describe a tiny bit of what I’d been doing.  Once I’d described a tiny bit, that was all I could bear her knowing at the time, so that I could see her reaction, she said gently “oh like self harming?” WHAT??!!  There was a name for what I was doing?!  Other people did the same sort of thing?!  I wasn’t the only one?!  This was like an atom bomb in my life.  How was I the only one to not have heard about this before?!

Nuclear Fall Out

Having done the hardest thing EVER in my life to that point – speak honestly about harming myself – I found that I felt like a 10 tonne weight had been lifted from my heart.  I cried buckets more over several days as I told my long suffering boyfriend (we’ve now been together 15 years, and married for 7 of them).  Having given me a chance to say my part, he said “oh that’s ok you are human after all!” – up until that point he had thought I was an all round nice person – he was relieved that I was perfect – I laughed and then cried (again) but this time with relief – it SO wasn’t the reaction I’d expected, I had wondered if he’d run a mile.

The Parents

But then….hardest of all telling my parents….

What can I say – that had to be the most painful bit of all – all the lying, all the shame.  At first they thought they were to blame – that hurt like stink – no it was just all messed up me’s fault – I’d so hurt them in process of everything.  Mercifully my parent are awesome and love me unconditionally, something I am forever grateful for.  And they’ve given me an inheritence so much more eternally valuable than anything money could buy.

They’ve shown me the way to the foot of a cross where my Lord died for me to take away all my wrongs, and will never stop loving me. He’s picked me up in His strong arms, washed away all the bad stuff, given me a new start, has held my hand all the way and will never let go.

A Bright Future

Since that day I can honestly say that I’m free.  Not once have I been tempted to hurt myself again.  I have found that talking is great fun!  Now you can’t shut me up!  I say that I’m making up for lost time – 15 years of hardly talking to anyone (except mates about boys of course ) is a long time to bottle things up!

I’ve changed dramatically since that evening in the kitchen.  I’m rejecting my tomboy’ish looks, realising that it was part of the same package (but that’s another post!).  I rarely wear biker gear much any more.  I wear bright colours now.  I’ve had my colours done.  I now wear makeup.  I’m embracing the femine side of me – didn’t think there was mcuh of one before!  I’ve had a perm – most shocking of all to those who know me well – as I considered curls as being ‘girly’, now I love my curls

There’s a change going on still deep inside, it’s a cool one.  It’s been a very painful ride in the past, but ‘the old has gone and the new has come’.  The new is confident, brave, genuine, honest, hard working, diligent, trusts God in everything and for everything, has her feet firmly on The Rock where life and everything it throws at you can’t shake you.

To be continued…one day…

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What Now?

This has been my hardest ever post to write to date, I certainly needed the tissues, but I wrote it hoping that it would bring some kind of hope or meaning to someone out there reading it.

If it’s touched you in anyway I would appreciate you commenting below but if you don’t want to ‘go public’ feel free to email me instead on Sarah@SarahsFleeces.co.uk.

Read the follow on post about one man’s struggle with Tourette’s Syndrome titled ” You can get used to anything, so watch your habits carefully” by my guest blogger Josh Hanagarne of  The World’s Strongest Librarian.

If you’re believing the lie that someone who self harms can’t ever get anywhere in life then check out my web site – I now run my own successful on line business

Thanks for reading.

Aspergerföretaget Andet www.andet.se och Torbjörn Andersson kommer och håller utbildningar på olika orter i Norrbotten om Asperger 28/9-9/10. (Se utbildningar nedanför, och/eller följ länkar)
Företagets verksamhet är utbildning om Aspergers syndrom och högfungerande autism (AS/HFA) och närliggande ämnen. Speciellt med inriktning på vuxenlivet och med fokus på positiva saker som personlig utveckling, förebilder och arbete. 

Vad finns det för positiva aspekter av Aspergers syndrom (AS) / högfungerande autism (HFA)?
Hur tar man vara på styrkor hos personerna så att de kan utvecklas och personal kan göra mer nytta?

Målgrupp
Främst personal kommer i kontakt med vuxna och gymnasieungdomar med AS/HFA.
Aspergare, anhöriga och andra intresserade är självklart välkomna.

Besök www.andet.se för mer information.

Heldagsutbildning + bok:
Aspergers syndrom (vuxenliv)
En annorlunda utbildning om Aspergers syndrom (vuxenliv). Vi vill inte bara ge grunderna, utan även bidra med: nya sätt att se “problem”, positiva värderingar, djupare förståelse och aspergerpsykologi. **************************************************************
Halvdagsutbildning + bok:
Asperger, ADHD och arbete
Tvådelad utbildning. Dels om ADHD och Tourette i vuxenlivet, med viss tonvikt på arbetsliv. Dels om bra arbete för personer med Aspergers syndrom och liknande autismtillstånd. Vad kan personal (inom LSS, Arbetsförmedling, FK, utbildning m.m.) göra för att förbättra situationen för vuxna med NPF?
**************************************************************
Här finns för övrigt en samling länkar med asperger-relaterade ämnen som kan vara intressant för personer som bor i Norrbotten. www.asperger-norrbotten.se

Edward Norton has had a busy filming schedule this past year, with the scheduled release of three movies: Iron Man 2, Stone, and Motherless Brooklyn. These three films will showcase completely different artistic styles of Norton, and all of which I am extremely excited about.

The first to be released will be Iron Man 2 on May 7th, 2010. In this film he will be continuing his role as Bruce Banner (The Hulk) as he joins co-stars Robert Downey Jr. (Tony Stark/Iron Man) and Scarlett Johansson (Natasha Ramanoff / Black Widow). This film will be the most publicized role of Norton’s this summer, even though it will be the only film in which he is not the lead.

Stone, Norton’s second film of the summer, will be released around the same time as Iron Man 2 and will be co-starring the one-and-only Robert De Niro.  After watching the trailer for this, I am worried about the lack of a solid plot. I hope that the sheer brilliant acting these two can produce will make this film worthwhile to see. Judge for yourself, the trailer is over at The Movie Blog.

The third film of Norton in 2010 is  Motherless Brooklyn. Norton co-wrote, directed, and starred in this film about is about a New York detective with Tourette’s Syndrome whose mentor is murdered. In which he then feels compelled to go and find the killer. I am excited that Norton has finally branched out once again into the directors chair, and I cannot wait to see this film. It is expected to have an early fall release.

Holla die Waldfee, war das n cooler Gig! Dazu beigetragen haben zwei Dinge! 1.: Wir kannten alle Bands die an diesem Abend gespielt haben und dementsprechend war es eigentlich eher ne art Familientreffen mit cooler Mucke! Was die ganze Sache aber zu nem geilen Festival gemacht hat, waren 2.: Die ganzen Fans, die trotz verdammt niedriger Temperaturen, für Anfang September, tapfer vor der Bühne standen und mit den Bands gefeiert haben! Wir waren dann um 23 Uhr dran als die Temperatur gefühlte -3 grad angenommen hat und die Bühne noch etwas schräger aussah als sie eigentlich war. Ja die Bühne war schräg! D.h. Simon musste zu Chrisse bergauf laufen!:D Trotzdem haben wir alles gegeben und die Schräglage konnte Chrisse auch nicht davon abhalten die Bühne auf ihre Standfestigkeit zu prüfen, indem er am Ende vom Gig ne Tarzanreife Show am Deckengerüst abgezogen hat. Alles in Allem ne super Veranstaltung mit tollem Publikum! Wir hoffen das geht so weiter! Uns hats sau Spaß gemacht!

Schöne Grüße!

Eure Jerks

…die gehören restlos aus dem Kalender gestrichen. Heute ist so einer.

(TV-Tip: 07.09.09 19:30 auf N-TV: Leben mit dem Tourette-Syndrom)

Кожата й настръхва от топлата вода. Става на дребни настръхнали пори. На малки изящни кратери. На малки лунни експедиции. На дребни чувствителни фрагменти. Става на теории на конспирацията. И после се изпарява като мъгла.

Tem dois comerciais de TV que meio que tratam do tema, de uma forma ou de outra.

Um é tão recente que só vi uma vez até agora e não encontrei o vídeo online, ainda. Na verdade, tá tão difícil de encontrar que começo a duvidar até se eu vi mesmo ou se alucinei.

Se vi mesmo, é da Petrobras e mostra, por um micronésimo de segundo, um frentista cadeirante. Na pesquisa que fiz, só apareceu esse vídeo. Não é o que eu quero, o que eu procuro e que acho que vi mostra um frentista com o uniforme da bandeira BR, cadeirante, a atender um cliente.

O segundo comercial já é bem antigo, mas ainda passa na TV e eu sorrio toda vez que vejo: aquele do chocolate Twix em que três caras com Síndrome de Tourette se unem e ganham dinheiro inventando a barra de “biscoito! caramelo! chocolaaate!”.

Link http://www.youtube.com/watch?v=z7S2qs5I73A

A propósito, o goleiro da seleção dos USA tem Tourette e levou a taça de melhor goleiro da Copda das Confederações da África do Sul. Esse é campeão.

Here’s an old CBS interview w/soccer star, Tim Howardon life with Tourette’s. Encouraging to show to your children who may struggle with TS!

Tim Howard was a star w/Manchester United, Everton, Metro Stars and the United States National Team.

http://www.cbsnews.com/stories/2005/01/13/60minutes/main666797.shtml

(See previous posts on TS at http://layrenewal.wordpress.com/category/tourettes-syndrome/.)

Vous savez, c’est pas facile être Touretteux. C’est comme être un stylo défectueux : des jours, l’encre coule pas, d’autres jours, si. Là, je ne parle pas de mes… heum, “écoulements”, s’il en est, mais plutôt du contrôle que j’ai sur moi même, ou encore sur mon bonheur. En effet, j’ai comme des gros-gros highs suivis de des gros-gros downs. Un jour ou deux, je suis super heureux, je contrôle mes tics et je parle au monde avec facilité et humour, tandis que plusieurs autres, je ne peux pas dessiner, je parle avec une attitude coincée au monde, je tique à m’épuiser et j’ai pas trop la mine. En fait, c’est tiquer qui me down mon humeur, généralement. Puis pour tiquer, sans pouvoir le contrôler, je veux dire, j’ai pas besoin d’un stress extérieur quelconque. Comme ça, je viens nerveux à max pour un rien. Très impatient, même. Et je ne peux pas dessiner, ni dormir, sans faire de trou dans un mur, en tout cas. (Je vous le dis, la tension monte tellement vite, dans ces temps !)

Enfin, bref, tout ça pour introduire le suivant dessin qui témoigne de mes “downs”. Un dessin témoignant de mes “highs” suivra certainement.

Petit jeu intégré au passage : Trouvez le deuxième bonhomme. Ouaip, y’en a deux. Bonne chance.

Il est où, hein ?

The mind does not allow itself to absorb sensations and experiences. Instead, it panics and reacts with a violent spasmodic motion; a horribly destructive and illegitimate defense mechanism. This behavior repeats itself countless times, resulting in an acute traumatization of the Nervous System.

In order to reverse the damage caused by this behavior, this behavior must stop. However, it can be stopped only when it is felt.

The way to feel these reactions is by first calming your mind. This is done by visualizing a word displayed inside your head. When your mind is no longer able to hold the whole word, you will shed a part of it. Most probably, you will have to continue to shed more and more  parts from the word, until you are left with a infinitesimal dot. Eventually your mind will become calm.

Once your mind is calm you can tune in with your mind, listen in and feel the tic motions that take place in the brain.

When the reaction is felt at its onset, you have the ability and control to choose not to indulge in this clamping and constricting behavior. Despite a feeling of intense fear, you would let your mind deal with the stimuli. This conditioning of the mind, to react properly, would gradually relax the accumulated tension as well.
 

Although my son was diagnosed three years ago with Tourette’s Syndrome, my wife and I did not start attending a local support group until this past September. (See previous TS blog postings by clicking on the “Tourette’s Syndrome” under the categories heading on the sidebar.)

Last night, I went to my first local TS board meeting (simply as a parent). It was an interesting discussion and encouraging to see how much is being done behind the scenes. I admitted my own ignorance, but I presumed much more was handled by the national office.

THANK YOU TO THE LOCAL FOLKS!

Let me encourage you. If you have a child with TS, get connected.

Maybe you can’t fill any official roles or give your time, but at least go to the local meetings. It’s a blessing to know that others are going through the same things. It’s a blessing to know you are not alone.

If you don’t know where a local group is, contact the national office. You might have one just around the corner or they may know others who want to start one.

You are NOT alone.

Yours in Christ,
Marty

Kuinka Yohai Golan-Gild siirtyi psykedeelisten bileiden järjestämisestä lääkekannabiksen tuottajaksi Israelissa? Ja vielä terveysministeriön täydellä tuella?

“90-luvu oli kemikaalien kultaista aikaa”, Golan-Gild sanoo. “Jokaisella metsän aukiolla oli ihmisiä nauttimassa ekstaasia ja LSD:tä, tanssien kuin viimeistä päivää. Ihmiset eivät menneet naimisiin ellei vieraille olisi voitu luvata pillereitä. Tuhannet protestoivat Rabinin aukiolla vaatien meitä kaikkia antamaan transsille mahdollisuus.

Yleinen tunnelma oli odottava, aivan kuin jotain tulisi muuttumaan. Israelissa ihmiset pitivät juhlimisesta, mutta eivät niinkään siitä maksamisesta. Menetin miljoonia, romahdin taloudellisesti, ja tässä tilanteesta löysin sitten itseni Kaliforniasta. Nopeasti omistinkin jo kolme kasvatustilaa lääkekannabikselle, kunnes yllättäen kuusi kuukautta sitten sain puhelinsoiton amerikkalaiselta  ystävältäni Rick Doblinilta.

Golan-Gildin valitsema polku edustaa hiljaista, mutta kiehtovaa vallankumousta, jonka Israelin yhteiskunta on kokenut viimeisen vuosikymmenen aikana. Vuonna 1999 terveysministeriö laillisti kannabiksen käytön potilaille, jotka kärsivät vakavista oireista kuten esimerkiksi kivuista, pahoinvoinnista ja ruokahalun katoamisesta.

Kun kannabiksen kasvatuksesta tuli laillista, lääkekannabiksen käyttäjien määrä nousi vuoden 2000 kahdesta yli 700:aan tänä päivänä. Luvun oletetaan nousevan 1200:aan kolmen kuukauden sisällä.

Kannabiksen kasvatus on lähellä läpimurtoa taloudelliseksi kultakaivokseksi, ja potentiaalista kiinnostuneet yrittäjät parveilevat toiminnasta innostuneena sen ympärillä. Kannabistuotteiden käyttö, joka oli siis täysin kiellettyä kymmenen vuotta sitten, on tulossa säännellyksi ja voi loppujen lopuksi saavuttaa jopa lääkkeen määritelmän.

“Määrään neljäkymmentä uutta reseptiä kuukausittain keskimääräisen reseptin ollessa 100 g per potilas kuukautta kohden”, tohtori Yehuda Baruch, Bat Yamissa sijaitsevan psykiatrisen hoitolaitoksen Abarbanelin omistaja, kertoo. Baruch on myös terveysviraston nokkamies lääkekannabisresepteissä.

Aiemmin mainittu vallankumous ei ole vielä tullut tiensä päähän ja lääkekannabiksen käyttö on parhaillaan harmaalla alueella. Terveysministeriön luvalla käyttö on täysin laillista, mutta siihen suhtaudutaan väheksyvästi. Baruch, ainoa reseptien toimittaja, on virastossa vain osa-aikaisena työntekijänä ja monet potilaat joutuvatkin odottamaan, että Baruch siivoaa kalenteriaan uusiakseen potilaidensa reseptit.

“Baruch ruuhkautuu jo nyt reippaasti. Mitä oikein tapahtuu syyskuussa, kun saavutamme 1200 lääkekannabiksen käyttäjän rajan?” kysyy Tel-Avivin asukas Liat Benny (37), joka sairastaa harvinaista geneettistä poikkeamaa, ja jolle on määrätty kannabista kipujen lievitykseen. Hän on hiljattain perustanut voittoa tuottamattoman yhdistyksen, jonka tarkoituksena on kiinnittää huomio kannabiksen lääkekäyttöön. Aivan samalla tavoin kuin mihin tahansa muuhun lääkkeeseen.

“Taistelumme on ennakkoluuloissa lilluvaa virastoa vastaan”, hän sanoi. “Stigma on lyöty kun ajatellaan, että lääkekäyttäjät ovat sekaisin tai pilvessä. Mutta me emme ole sellaisia. Minulle kannabis korvaa muita lääkkeitä, ja se tuo takaisin toimintakykyni. Älä vertaa minua terveeseen ihmiseen, joka käyttää”. Hän lisäsi, että oli monesti törmännyt lääkäreihin sekä hoitajiin erilaisissa tapahtumissa vetäessään puhetta. He olivat reagoineet asiaan kikattamalla, ja pyysivät, että ottaisin itsestäni valokuvan kasvin vieressä.

Selvyyden vuoksi sanottakoon, että Bennyn valitukset eivät kohdistu Baruchiin. Päinvastoin, potilaat hurraavat terveysministeriölle, ja nimenomaan Baruchille heidän rikkoessaan perinteistä tietämättömyyden verhoa lääkekannabiksen kohdalla. Lääkäri Itay Gur-Arieyh, Sheban sairaalan kipupoliklinikan johtaja sekä Israelin kipuyhdistyksen jäsen, sanoo, että Baruch on oikeilla jäljillä, mutta asia täytyy pystyä säännöstelemään täydellisesti.

Jopa kymmenen kasvia

Lääkekannabiksen ongelmallinen luonne ilmenee parhaiten sen tuottamisessa. Terveysministeriön komitea, joka päätti lääkekannabiksen sallimisesta vuonna 1999, sopi, että lääkettä annettaisiin vain potilaille, joilla on äärimmäisiä oireita ja/tai oireiluista johtuvien kipujen hoitoon. Komitealla oli kuitenkin vaikeuksia määrittää, kuinka potilaat saisivat lääkkeensä. Lääkettä ei vielä tuolloin kasvatettu laillisesti Israelissa.

Kuitenkin vuonna 2005 kymmenelle ihmiselle kirjoitettiin resepti lääkekannabikseen, ja Benny oli yksi heistä. Ministeriö antoi heidän vapaasti kasvattaa kymmentä kannabiskasvia ja pitää hallussaan 200 g jalostettua tuotetta. (Ajatelkaapa mitä tapahtuisi, jos lääkärisi kirjoittaisi sinulle reseptin lääkkeeseen, joka sinun pitäisi itse tuottaa).

Tämä ei ollut kuitenkaan ainoa ongelma. Kannabiksen tuottaminen vaatii jonkin verran fyysistä suoritetta ja myös aikaa. Ensimmäiset reseptin saaneet olivat kaikki kuolemansairaita, joten tämä aiheutti kieron käänteen, vaikkakin tahattomasti. Aiempi vastaava tapaus ei ole kaukaa. Yossi Bozaglo oli yksi ensimmäisiä lääkereseptin saaneita. Hänet sittemmin tuomittiin vuonna 2001, koska hän oli yrittänyt ostaa kannabista diileriltä. Kyseinen tapaus teki hyvin selväksi sen, että ministeriön täytyy ottaa vastuulleen lääkkeen tuotanto.

Sitten “hymynaama” saapui. Tällä nimellä potilaat kutsuivat miestä, joka haluaa pysyä tänäkin päivänä tuntemattomana. Hän oli ottanut yhteyttä ministeriöön ja kertonut voivansa tuottaa kannabista potilaille. Jossain pohjoisessa hän ja hänen perheensä ovat tuottaneet kannabista luvallisesti jo neljä vuotta. Koska lääkettä oli tarjolla, kiitos hymynaaman, tuloksena oli potilaiden dramaattinen lisääntyminen. Kasvatustilassaan hänellä on tusinoittain kasveja, jotka on kaikki nimetty potilaiden mukaan. Potilaiden, joita lääkittiin kannabiksella ja jotka ovat sittemmin menehtyneet.

Potilaat käyvät miltei päivittäin pienessä telavivilaisessa asunnossa hakemassa lääkkeensä hymynaamalta ja hänen yhdistyksensä (“Tikkun Olam”) muilta vapaaehtoisilta. Näiden savukkeiden jakelu, edistyneemmällä klinikalla ja yhteiskunnan siunauksella, on ehkäpä kaikkein epätodellisin ja sydäntä lämmittävin näky, johon voi törmätä. Se on valovuosien päässä sairaaloiden syöpäosastoilta.

Hymynaama jakaa helpotusta pyörätuolissa liikkuville Parkinson-potilaille, Crohnin tautia poteville ja syöpäpotilaille. He kaikki polttavat yhdessä ulkona. Yli 70-vuotiaat potilaat nousevat yht’äkkiä tuoliltaan ja alkavat liikkua ympäriinsä. Eräs lapsi, joka sairasti Touretten oireyhtymää ja joutui lopettamaan koulunsa muiden kiusaamisen takia, lopetti kiroilun, meni takaisin kouluun, ja on nyt elämänsä ensimmäisessä parisuhteessa. Kaikki tämä lääkkeen ansiosta. Kaikilla on hymy naamallaan. Kannabis, jota he saavat, on paljon laadukkaampaa kuin kadulla myytävä laiton tuote.

Luvan saaminen kannabiksen jakeluun todistaa hiljaista vallankumousta. Aluksi vain hymynaama oli oikeutettu käsittelemään lääkettä ja tekemään siitä jointteja. Sittemmin suosion kasvaessa, Baruch myönsi luvat useille yhdistyksen jäsenille. Loppujen lopuksi nämä ihmiset saivat luvan jaella lääkettä ympäri maata.

Hymynaama ei saa mitään korvausta yhteiskunnalta kannabiksen tuottamisesta, eivätkä potilaatkaan maksa siitä mitään. On kuitenkin kaikille selvää, ettei tilanne kysynnän kasvaessa ja tuotantoon uppoavien rahamäärien noustessa voisi jatkua tällaisena.  Tohtori Gur-Arieyh sanoi, että “maksu on oltava”. “Se, kuka tämän kaiken kuitenkin maksaa, olkoon se vaikka yhteiskunta, terveysjärjestöt tai potilaat, on toinen kysymys”. Baruch terveysjärjestön edustajana on samaa mieltä Gur Arieyhin kanssa ja onkin jo alkanut suunnitella rahoitusjärjestelmää.

Lääkekannabis, yhdistelmä avuttomia potilaita ja uuden tuulahduksen tuova lääke alkoi kiinnostaa monia yrittäjiä. Puhelinsoitto, jonka Yohai Golan-Gild sai vuosi sitten, oli hänen amerikkalaiselta ystävältään Rick Doblinilta. Rick on MAPS:in (Multidisciplinary Association for Psychedelic Studies) perustaja. Yhdistys suosii näiden aineiden käyttöä lääketieteessä ja tutkimuksessa. Kun Doblin kuuli käynnissä olevasta vallankumouksesta Israelissa, hän otti äkkiä yhteyttä ystäväänsä Golan-Gildiin, joka oli tapahtumahetkellä Kaliforniassa.

Viime viikolla Baruch ja muita ministeriön edustajia vierailivat Golan-Gildin ja kahden hänen avustajansa rakentamissa kasvatustiloissa. Alkuinvestointi olisi miljoona shekeliä (1 shekel = 0,256 dollaria). Kasvatustilojen sijainti pyydettiin pitämään varkautta silmällä pitäen salassa. He ovat nyt toinen lääkekannabiksen tuottaja. Terveysministeriö, joka pitää mahdottomana tukeutua vain yhteen kasvattajaan, aikoo lisätä laillistettujen lääkekannabiksen tuottajien määrää viiteen tai kuuteen. Baruchin mukaan nämä luvut tulevat nousemaan niin, että ne riittävät kaikkeen lääketuotantoon.

Ensimmäisellä kerralla potilaat saisivat lääkkeensä ilmaiseksi, mutta heiltä alettaisiin periä maksua hetken kuluttua. “Maailmassa on yli 160 eri variaatiota kannabiksesta ja jokaisella niistä on omat sivuvaikutuksensa”, sanoo Golan-Gild ja lisää mielissään: “Pystyn valitsemaan juuri oikean lääkkeen tietylle potilaalle, vaikkapa uupumusta aiheuttavan, yhden piristävän aamuksi ja yhden joka tuo kunnon erektion”.

Baruch näkee Israelin markkinoiden potentiaalin kurottuvan kymmeniin tuhansiin lääkekannabiksen käyttäjiin. Heistä jokainen maksaisi 5-10 NIS (1 NIS eli shekel = 0.256 dollaria) grammalta tai 5000–10000 NIS per henkilö / vuosi. Joka tapauksessa Golan-Gild väittää, että gramman kasvattaminen maksaisi 15 NIS (1 shekel = 0.256 $). Siis enemmän, mitä Baruch olettaa hänen potilaidensa maksavan. Erotus täytyisi hänen mukaansa kustantaa terveysministeriön varoista. Vähän samaan tapaan kuin julkisen terveydenhuollon lääkkeet.

Kannabiksen rahoittaminen julkisista varoista vaikuttaa kaukaa haetulta. Ottaen huomioon, että monet  terveysvirastot  ovat parhaillaan kehittelemässä täydentäviä vakuutuksia, jotka tuottaisivat tuloja, ja jotka tarjoisivat vaihtoehtoisia terapioita, näin ei kuitenkaan välttämättä ole.

Tällä välin Golan-Gild aikoo avata kolme “armolaitosta”, kuten hän niitä kutsuu, Jerusalemiin, Tel Aviviin ja Ra’ananaan. Potilaat eivät ainoastaan pystyisi polttamaan jointteja, vaan voisivat sen lisäksi osallistua lisämaksua vastaan jooga/pilates -kursseille, sekä saamaan koulutusta kannabiksen oikeanlaisesta käytöstä.

Valovuosien päässä kaikista näistä aloitteista pienessä yksinkertaisessa Tel Avivilaisessa asunnossa “Tikkun Olam” -ryhmä jatkaa kannabiksen jakamista ilmaiseksi, ja vaatii, että potilaat eivät maksaisi sitä omista rahoistaan.

Mässyt

Kun kannabis hyväksyttiin lääkekäyttöön vuonna 1999, se tarkoitettiin alunperin AIDS- ja syöpäpotilaille. Tänä päivänä sitä käytetään osana hoitoa aikaisemmin kuin ennen, ja moniin sairauksiin kuten Parkinsoniin, Touretten syndroomaan, multippeliskleroosiin, kipukroonikoille ja PTSD-oireista kärsiville. Lääkemarkkinat ovat myös allekirjoittamassa kannabiksen vaikutukset lääkekäytössä.

Hadassah Ein Keremin sairaalassa luuydinsiirto-osastolla potilaat, mukaan lukien lapset ja vauvat,  hoidetaan öljytipoilla, jotka on jalostettu kannabiksesta. “Sillä ei ole sivuvaikutuksia ja se on hyvin tehokas potilaita hoidettaessa”, sanoi osaston johtaja professori Reuven Or. “Sanoisin, että se on toimiva 80 % tapauksista, mikä on paljon.”

Professori Or jatkaa: “Se kiihottaa ruokahalua sekä vähentää pahoinvointia ja oksentamista. Tällä on suuri merkitys syöpäosastolla. Sillä on myös tulehdusta lievittäviä ominaisuuksia, jotka auttavat infektioissa tai säteilyn aiheuttamissa tulehduksissa iholla. Kaiken tämän ohella kannabis helpottaa potilaiden kestämistä hoidoissa. Se parantaa heidän mielialaansa ja vähentää depressiota. Nämä ovat tärkeitä ominaisuuksia taistelussa potilaan sairautta vastaan.”

Kannabiksella hoidettavista potilaista noin puolet ovat syöpäpotilaita ja neljännes kärsii kroonisista kivuista.

Monikäyttöinen lääke

Kuusivuotiaana Liat Benny alkoi kärsiä kivuista, jotka vuosien myötä kovenisivat ja leviäisivät. Lopulta lääkärit diagnosoivat hänellä harvinaisen autoimmuunihäiriön, joka vahingoittaa verisuonia, silmiä ja niveliä.

Benny kuvailee päivän joka tunti tulevia kipuja “järkyttäviksi puukotuksen tunteiksi”. Kolme vuotta sitten Bennyn oikea silmä poistettiin kirurgisesti ja vaikka hänellä on vielä näkö tallella vasemmassa silmässä, hän kertoo näön olevan rajoittunut ja utuinen. Hän on läpikäynyt useita operaatioita, hoitoja ja laitoshoitoja morfiinipohjaisten hoitojen lisäksi, mutta hänen sairautensa on pahentunut siihen pisteeseen, että työnteolle tuli laittaa stoppi.

Kymmenen vuotta sitten Bennyn isä kertoi hänelle lääkekannabiksesta ja kolme vuotta sitten hän törmäsi yhteisöön “Tikkun Olam”. Tänään hän on yksi terveysministeriön luvan saaneista lääkekannabiksen käyttäjistä. Benny myös luennoi aiheesta. Hän koittaa houkutella itsepäisiä lääkäreitä unohtamaan väärät käsityksensä ja jakaa sanomaa lääkekannabiksesta muille potilaille.

“Elän loppumattoman kivun kanssa, joka saavuttaa luvut kahdeksasta yhdeksään kymmenen ollessa korkein mahdollinen kivun määrä”, kertoo Benny.

“Kannabiksen polttaminen antaa minulle mahdollisuuden puhua kanssasi ja kuulostaa johdonmukaiselta, vaikken olisi nukkunut silmäystäkään viime yönä”, hän sanoo ja jatkaa: “Kannabis on monikäyttöinen lääke, jonka pitäisi kuulua yleisen terveydenhuollon piiriin. Sen käyttö vähentää huomattavasti muiden lääkkeiden käyttöä, mikä tuo säästöjä yhteiskunnalle. Kannabis parantaa kaikkien potilaiden toimivuutta, ja me emme puhu nyt ainoastaan oireiden helpotuksesta vaan myöskin eräänlaisesta terapiamuodosta.”

Muutama viikko sitten Benny perusti järjestön lisäämään lääkekannabiksen käyttöä. “Näen tämän tehtävänäni”, hän kertoo.

Lähde: http://www.haaretz.com/hasen/spages/1094284.html?

Pediatric persons with disabilities have similar needs as adults for daily activities including dressing, eating, toileting and leisure.   Difficulty with any of these activities may be especially acute for persons with Multiple Sclerosis, Cerebral Palsy, Down’s Syndrome. Epilepsy or Tourette Syndrome.

Fortunately many products for adults are suitable for use by smaller hands and arms that are not quite as strong.  While eating utensils  and drinking items may need to be specifically sized for children, specialty plates and bowls can be used universally and there are many to choose from, available from many sources including local medical supplies stores, pharmacies and online suppliers. 

Dressing aids including dressing sticks or button aids may only need to be cut down for a shorter reach and smaller hands.

Bathroom safety can be improved by installing lower grab bars and of course using correspondingly smaller sized and dedicated child bath and toilet seats.

This link will bring you to a web site Care4U.com, offering a number of these types of pediatric products.  http://www.care4u.com/care4uforkids.html      When searching the internet for additional specific products, be sure to include the word “pediatric” in your search terms.

A search of the internet found a number of specialized books devoted to guiding caregivers helping children, the following links should lead you to a few of these books, there are certainly many more

http://books.google.com/books?id=hBxyPpBm0ygC&printsec=frontcover&source=gbs_navlinks_s

http://books.google.com/books?id=yKX6Kipdgm0C&printsec=frontcover&dq=pediatric+aids+for+daily+living&source=gbs_similarbooks_r&cad=2

http://books.google.com/books?id=1-CvZFkPk9IC&dq=pediatric+aids+for+daily+living&source=gbs_navlinks_s

Caregivers for children face many challenges helping a child learn, grow and develop, we hope that these sources help guide you to additional resources.

Couvent de la Tourette. Eveux (69)

Du 9 au 11 avril 2010

Week end de session sur le Messie de G.F. Haendel

Hélène Décis-Lartigau propose, le temps d’un week-end au Couvent de La Tourette, une session consacrée à l’écoute du fameux oratorio de Georg Friedrich Haendel, Le Messie. Comme ses contemporains baroques, Haendel est un prédicateur et l’oeuvre est ainsi un véritable portrait du Christ en musique.

Drame sacré en trois actes, composé en 1741 sur un livret de Charles Jennens, cet oratorio fut d’abord accueilli triomphalement en Irlande lors de sa création, mais dans un second temps, il déclencha le plus vif scandale en Angleterre. Il faudra quelques années pour que Londres se libère de la cabale dévote qui compromettait le succès du Messie et reconnaisse l’ampleur de la créativité d’Haendel qui avait ainsi profondément rénové le genre de l’oratorio. Le Messie mêle avec génie le théâtre et la liturgie, offrant à l’auditeur une succession de scènes ponctuées par les chœurs les plus grandioses.

Des trois grandes étapes de la vie du Christ, Haendel propose une vaste fresque pour méditer sur la vie humaine, de la naissance à la mort, de l’épreuve à l’espérance.

La session propose de prendre le temps d’une écoute attentive et curieuse, en particulier pour retisser le lien entre les textes et le discours musical.

Session du samedi 10 avril 10h au dimanche 11 avril 16 h

Inscriptions à partir de novembre 2009