ALS the NICE GENE DISEASE

[indigosd]

Shortly after Web was diagnosed, the RN from the ALS Association shared this with me and I wondered if any of you had heard something similar...

"Do you know what the Researchers call ALS informally? They call it the NICE GENE Disease. It is always the nicest people, the salt of the earth that get this disease. It is always the people that are the most loving, the most generous and the most patient. It is always the people that have taken such good care of their bodies, their minds, their hearts and their souls and have so much to offer! It never seems to strike the Pedophiles, the Drug Addicts or the scum of the earth. The Researchers actually think that there is a correlation, some DNA defect that creates and then predisposes NICE PEOPLE to this horrible disease." She went on to share that when someone comes into the clinic and are just horrible and mean, they know that the tests will be negative for ALS.

From my short time on this forum, I can see that there is definately truth to her comment. I can absolutely say without a shadow of doubt that Web fits her criteria. I wonder what the rest of you think about that statement? I hope that the Researchers will explore it and come up with a cure for all of our NICE PEOPLE!

[Brodie0907]

I have to agree ,My mother in law was just diagnosed with ALS and from what I have read and researched it is bulbar if I spelled that right a women that use to be a nurse and care for others all her life a women that took care of herself and everyone around her always smiling always willing to help whenever needed or even when help was not needed she would still offer and now she will have to go through this rough journey.

[Zaphoon]

If the statement is true, there is a paradox that accompanies it and that being that ALS causes emotional lability which can turn nice people into temporary monsters.

Of course, I speak not from personal experience; just something I've been reading about.

[rose]

I had read this before. There is also a doctor/researcher who holds the theory that stress can help precipitate ALS, and that PALS are usually nice people who handle stress differently than those who are ready to lash out at others.

Zaphoon,

Beth said something interesting about EL, and that the part of the brain which feels emotion is not the same place where it expresses it.

[halfin]

I was reading Augie's Quest, the book about Augie Nieto, president of the company that makes LifeCycle fitness products, who got ALS and now heads up major fundraising efforts with the MDA. Augie quotes Houston neurologist Stanley Appel, an ALS expert, about this effect:

As an illustration, Dr. Appel told the story of a patient he diagnosed, a gentleman typical of what Dr. Appel called "the nice guy phenotype". The man was a former football player and quarterback coach at Texas A&M. When Dr. Appel told him it looked like he had ALS, the coach and his wife wept, and they were shortly joined by Dr. Appel. "We carry around boxes of Kleenex here," he said of his clinic. With his neurologist still crying before him, the coach drew himself up to his full 6'4" height, laid a hand on Dr. Appel's shoulder, and said, "It must be tough telling patients they have ALS."

[joelc]

They call it the NICE GENE Disease.

I have never heard that but I have heard, and believe, that it seems to only happen to nice people. We should have been jerks and maybe we would not have this. Interesting thought! Maybe that is our cure - start being nasty and EL doesn't count. LOL.

[GlenBrittle]

Well son of a female dog. I wasted all of my years being nice and helping people, when I could have had some real fun pissin people off ??? *sigh*

I am what I am , no more no less. Never made aspirations to be something more than what I wanted.

I forgot to take the EL meds for a couple of days and found that they do work. Yep , I got testy and my eyes started leaking.

Speaking of NICE GENE's , I have always had a keen eye for a nicely filled pair of jeans (on the ladies of course). Button it Beth.

Glen

[indigosd]

Glen, check out my next post to "MUSIC"! awww. PZ, you are never a monster. Joel, you couldn't be mean if you had to do it! Hal, you made me cry. Rose, don't you wish that they would follow this and act on it ASAP!! Brodie, so sorry about your MIL. Off to post a youtube on Music thread if Joel will let me! The boys will LOVE IT!!

[brooksea]

I was just explaining to my son how nice my husband has always been to friends, family and total strangers - how he has always been a leader, one that others looked to for advice on how to handle problems. He has always gone above and beyond to help someone, even if it meant going without for himself. He still does what he can to this day.

I should have had a hint something was wrong with him a couple of years before dx, as he started getting overly emotional/irritated easily about things. But I didn't have a clue a disease could cause that to happen!

[cukita99]

my son is always saying its not fair mom, you are the nicest mom ever. you always put others first.

[fec139]

yes, I was always there for people and gave a lot of my time to volunteering to help those less fortunate than I. Now that I have ALS, my former friends, coworkers, and acquaintances -- with only 1 or 2 exceptions -- have run the other way. They don't care about me. It is only the people whom I met since I have ALS -- mostly from the ALS community -- who care. What say you religious people? Why does the Supreme Being give this horrible disease to nice people? And what ever happened to "what goes around comes around"?

[Brodie0907]

I must say I do not have this myself however I would like to just add that the nice ones are the ones who will live forever in the hearts of their loved ones and friends,They are what make his world a better place and also live forever in others hearts and leaving behind their mark in one way or another.

[joelc]

Why does the Supreme Being give this horrible disease to nice people? And what ever happened to "what goes around comes around"?

To begin with, you have your theology wrong. God did not give this to us. Yes, He let it happen but there is a big difference between giving it and allowing it. When mankind turned its back on God things really changed. That is a whole discussion for a different time.

[tdamess]

my son would give you the shirt off his back and money when he really needed it

[Katie C]

Before this, Glen was one of the sweetest human beings on the planet. Makes it even harder as his personality changes ... still very sweet to other people, not so much to yours truly.