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Put Your Money Where Your Mouth Is

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#21 desertpond57



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Posted 17 October 2009 - 05:57 AM

There's a reason you're a whiner. Narcolepsy is rapidly progressing brain damage and misery is the primary effect. You aren't depressed because of the symptoms- depression IS a symptom. In addition, you flat out don't have enough neural bandwidth to deal with everyday life. I'm telling all of you: Gluten is not worth it. There were times in my life when I would have cut off my own arm to know the information you are dismissing. Sooner or later it will get to the point that it's bad enough to try my horrible experiment. But maybe by then some other really useful function won't recover. Or worse.

I've seen the end-game and you need to know you're going to lose this one.
Eventually you will not be able to do or remember anything. At all.
That is, if you're lucky and the depression doesn't kill you first.
Panic, suicidal thoughts and impulsive behavior manifest decades before the dementia.
Desperate. Excruciating. Decades.

Do i have a differant type of narcolepsy to everyone else??? ive had the good luck to see some off the best specialist in the world on narcolepsy over the past 20 years and not one of them has ever told me anything like this. yes i get down in the dumps soometimes but who doesnt? people with severe depression who dont have narcolepsy die all the time, i found that sentence very offensive along with most of the rest off what heidi said. instead of coming on here and having a rant that has offended people she could have easily come on and said "hey guys!!!! ive found something that helps u should give it a try!!"
she claims that a gluten free diet has helped her but from where i am sat she seems to have a whole lot of anger going on there or could that be depression judging by the negative words she likes to use?
since coming to this site i have read lots of post from lots of different people dealing with narcolepsy and cataplexy etc, non of them have offended me like this, i thought this was a place i could come to learn or help in a civilized polite way, or even let off steam without saying harsh things like this.
when i joined this site i agreed to the terms and conditions set, and i still do. they do say not to post things that could offend.maybe heidi should have a re-read of them. speaking of heidi, she put that post up and hasnt responded to any of the replies.would be nice for her to,and to hear her response,even tho she has offended she still has an opinion and if she can choose her words more politley i would like to know more.

Okay I haven't been on for awhile and tonight I came across this thread and I gotta tell you that no matter how bad I thought I was feeling, I feel worse now. Never in a million years did it cross my mind that dementia was in my future or that I would become so depressed that possibly suicide would over take me in the end. I'm gonna take it one day at a time and as long as I don't lose my sense of humor I'm going make the most of the time I have left. Everyone is different and no one knows us better than we know ourselves so keep pushing on and never forget we're here for support and compassion to those feeling misunderstood and isolated from friends and family.

#22 sleepless sleeper

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Posted 26 October 2009 - 02:50 AM

Why feel worse now? Just ignore it. No biggie. Does she truly alter your life on this planet? nah. We'll just look at one another and wink and move on. It's cool, we're cool, and you're a-okay.

Everyone of you has a choice to just let it be as water and slide right down your back. We have enough in life to worry about without allowing a single person's personal beliefs interfere with our well being. Look at the flip here: She is devout in her belief in this. She does have a few valid points. Maybe not for everyone, but a few. Those few may need to know this info. For those of us who don't, [shrug shoulders] so what?

The way she words it? Well, why let someone get to you like this? Has she really done something to you? No. She is not intentionally harming anyone. Her mind is messed up from messed up sleep. Um.... How many of us here cannot understand this? Please don't let it hurt you. You are so much smarter than that.