Keratoconus patients are more likely to have psychiatric dis

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Louise Pembroke
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Postby Louise Pembroke » Tue 08 May 2007 2:02 pm

Nicola, you're wise to not take antipsychotic drugs, they are indeed the drugs prescribed for people deemed to be Schizophrenic and I wouldn't wish them on my worst enemy. They cause more harm than good, and I reckon the world should accept your differences rather than you trying to suppress them.
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nicola jayne
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Postby nicola jayne » Tue 08 May 2007 3:59 pm

Louise, thanks for that it means a lot lol. when you have family telling you that you should take these meds to calm your tics down. I would be asleep all the time !! and I do think that most of the time they go on about me taking the meds to ease their own uncomfortable feelings they get when im swearing and shouting when im with them !! oh and when I first had them we were reading the side affects MAY CAUSE SUDDEN DEATH well im sorry id rather shout yarrgh on top of my voice swear at everything that i shouldnt and move my arms like a monkey :oops: than take those lol.
I am me I have rare KC and I have rare tourettes but all these things add up to a unique me and your quite right the world should accept me as I am
(steps off her soap box)
:D

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Louise Pembroke
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Postby Louise Pembroke » Tue 08 May 2007 4:18 pm

**Joins Nicola on soap box**

I agree, and I wouldn't have a problem with you swearing or moving differently because as long as know what the difference is what's the problem?!

I know someone with Parkinsons and he cannot keep still at all. I know someone with Tardive Dyskinesia [permanent neurological damage which can result from taking antipsychotics], and he cannot stop moving/shaking. Controlling/suppressing your tics is indeed about making others feel better and you don't have to do that. Feeling half asleep, impaired higher brain function and the risks of weight gain, diabetes, neurological damage and agranulocytosis [this is the drop dead side effect as a result of white blood cells being wiped out] is hardly worth suppressing your differences!
You stay unique!
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Pat A
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Postby Pat A » Tue 08 May 2007 4:22 pm

Louise
You deserve considerable applause for your post - I wish I could express the situation as well as you have! (But I might pinch a few of your phrases when I meet with my manager tomorrow!) The only thing I would add is that us "older birds" find it difficult too albeit in a different way to the teenagers, as old habits die hard as they say!!

It is hardly surprising that many of us with KC have suffered some kind of "mental" impairment at some stage as we can be treated so badly. Only this morning I was at my GP who is finding it difficult to help treat me through the bouts of depression I keep getting which is not due to my KC - but the actions taken by others (and we know who they are!) at a time when coming to terms with sight impairment needs support and understanding - not "beating with stick whilst down".

I too am disappointed that the conference won't be taking place - but if I can help produce content - or in any other way - for a leaflet at all - count me in please.
Pat

We do not stop playing because we grow old;
We grow old because we stop playing.

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Pat A
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Postby Pat A » Tue 08 May 2007 4:25 pm

...and can I add that I looked after my Dad who had Parkinsons disease for 20 odd years and got fed up with people treating him like an idiot sometimes - his body was malfunctioning at times, he couldn't keep still and he couldn't get his words out at times but his brain was as sharp as ever! It was tragic seeing a very clever, intelligent & active man affected like that. He got depressed too!
Pat

We do not stop playing because we grow old;
We grow old because we stop playing.

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Louise Pembroke
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Postby Louise Pembroke » Tue 08 May 2007 4:29 pm

hey I'm sorry Pat, and people reacting stupidly doesn't help
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rosemary johnson
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Postby rosemary johnson » Wed 09 May 2007 7:13 pm

Naybe the people producing that paper should try living with the things we do...
Like the people who say 2Why don't you just wear gllasses?"
Or the personnel department who've been told umpteen times what's needed is talking computer equipment and still get someone to order dragon dictate rather than Jaws or Hal.
Or put the CV straight to the back of the ppile as soon as they see the eyes at the job faiir. And aren't even honest enough to say "no thhanks" when photocopyng CVs is 5p a sheeet.
Or the time you wait 45 mintes for a 58 bus, stop half a doozen 69s and 97s cos you can't rread the numbers till too late noot to, and thenn the 58 sails straight past cos you were sure it said 158 on the front.
Or the Moorfields ""appointment"" sytem, and Pharmacy, for those who know about thoose!

et them try coping with all that and not getting depressed, frustrated and having episodes of "angeer"!

Good grief.

Rosemary

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Eddie S
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Postby Eddie S » Wed 09 May 2007 7:32 pm

Rosemary

Laughed out loud at "Why don't you just wear glasses?"

And also at the bus saga - teeeheee - been there!

I think we should add cruetly inflicted by optometrists though, who fit you with lenses and go "ooo, wow, those lenses are a great fit" while you're screaming out in pain.

Or the people who say to you daily "hmmm, your eyes look red, are you ok?"
Eddie
Somebody complimented me on my driving yesterday - they left a note on my windscreen "Parking Fine" which was nice.
KC managed with softperm lens in left eye, Intacs (2/11/07) in right eye

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Louise Pembroke
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Postby Louise Pembroke » Wed 09 May 2007 9:26 pm

Or people who assume that we wear lenses because we're vain. I go into pastry cutter/pastry type of explanations of transplant surgery, usually shuts them up
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timmytim7
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Postby timmytim7 » Thu 10 May 2007 9:50 pm

hello,

well the results didnt look that convincing to me, and the sample too small and not geographically spread out enough.

anyway, having c**p eyes probably makes a lot of ppl depressed! it does me anyway. if you asked any group of ppl with any illness about their mental health, and compared it to healthy ppl, then the results would be pretty obvious i reckon!

aside from all that though... i have got other mental health problems. so have millions of people though, and only a tiny percentage in the uk have KC.

everyone at works asks me if i have glasses i can wear which drives me mental. like i wouldnt wear them if i could!!! lol. i just make my eyes blood shot for fun or coz i'm vain! lol


tim


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