Favorite Dumb Butt Responses

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maryhahnward

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Jun 17, 2009
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445
Reason
CALS
Diagnosis
06/2010
Country
US
State
NC
City
Wilmington
My new favorite when I told someone the other day that my husband has ALS is "oh yeah, its just like Parkinson's right?"

"So how what's the treatment? There's a cure, right"

My very favorite "My uncle had ALS but he's better now"

You end up becoming the great ALS educator. I decided to embrace the role and bought a Lou Gehrig's #4 baseball shirt. It is meant to invite conversation. Ignorance drives me crazy.
 
Seriously most people do not know anything about ALS or that is fatal, and ask and say some dumb things
 
Two weeks ago I was at the mall with my daughter, her friend and her Mom. My voice was very weak that day so I told her I have ALS. She had NO clue what it was (she's a teacher). She held up her finger to me and answered her cell phone.
I gave up.
 
I love the question, "How is Jason doing?". I know that sounds soo innocent, and I know they genuinelly want to know, but the thought that goes through my head is: "He is a 38 year old man that can't even wipe his own a$$, can't get down to play trains with his son, or hold his infant daughter in his arms, his son can't understand him when he says "I LOVE YOU", and none of his family can understand him, he is trapped in a body that he can't utilize or communicate his needs, he is in constant pain, struggles to breath, is in hospice, and oh yeah, is dying!... how do you think he is doing? Here's your sign." Sorry, I just really hate that question. Silly, eh?
 
I think the best and most educated answer to "My husband has ALS" was.. "Oh sh#t, that sucks." My response "Yup."
 
Two weeks ago I was at the mall with my daughter, her friend and her Mom. My voice was very weak that day so I told her I have ALS. She had NO clue what it was (she's a teacher). She held up her finger to me and answered her cell phone.
I gave up.

Nothing quite like the feeling that someone is diminishing the most serious issue in your life at the moment....just not a fan of people doing that to anyone. I am a teacher too and I have to say some teachers are just not the sharpest tack!
 
I love the question, "How is Jason doing?". I know that sounds soo innocent, and I know they genuinelly want to know, but the thought that goes through my head is: "He is a 38 year old man that can't even wipe his own a$$, can't get down to play trains with his son, or hold his infant daughter in his arms, his son can't understand him when he says "I LOVE YOU", and none of his family can understand him, he is trapped in a body that he can't utilize or communicate his needs, he is in constant pain, struggles to breath, is in hospice, and oh yeah, is dying!... how do you think he is doing? Here's your sign." Sorry, I just really hate that question. Silly, eh?

Not silly at all. You earned the right to not like that question - everyone on this board earned that right.

The best question anyone can ask is "What can I do for you or your PALS that would make your day a little easier?" or they can just come and sit with you for a little while, keep you company and not want anything in return. The "How are you or your PALS doing question?" is awful because no one really wants to know the answer.
 
Glen's boss used to constantly end phone conversations with "Well I hope Glen is feeling better...." OK, look Mr Rocket Scientist...what part of "Glen's dying" is escaping your understanding!?!?
 
Yeah, well my mom doesnt get it. She calls to complain that i never call her, but never ever calls to ask how my husband of 30 years is doing. Thank God for my mother in law who is totally plugged in and just calls to chat and makes sure to check on me regularly. They live 2 hours away, but she is tuned into everything we need before we know we need it. I can call and vent when I need to, and she will cry with me and not make me feel bad for losing it.
 
Hey, Gina! I'm in the same club, but don't have the MIL, as she passed away quite some time ago (thankfully, before my husband's diagnosis, for her sake). She was so sweet.

My mom never calls and when I call her she wants to know when we are going to come see her! Then she calls my brother and tells him I don't want her at our house to help out! LOL She never has offered. In fact, she has said she wished she could, but her health is just so bad...
 
the thing of many that sticks out that drive me crazy, perhaps because my mom is in ICU right now.........
There Resp Therapist comes in to suction mom. Mind you mom has been there a week now hellooooooooo
the RT shoves the suction tube into mom's airway passage and says "Cough now, cough reallllll hard ... cough, cough,cough, there you go, much better sweetie"

My mom has ALS, her chest and abdomen and diaphram are paralized thus she is on a ventilator and if she could cough like that she prolly wouldn't need a ventilator. What bothers me is, she's been there a week and this gal hasn't realiized this yet?






also my mom's sister who hasn't seen her in 4 years screams at me when I called to see if she would come see mom, she screams "Where's the nurses your mom can get, wheres the support from ALSA whaeres .... you make me sick I am not comming there because of youuuuuuuuuuuuuu! Your hurting aren't you, Diana!"
Wicked bat, hard to believe she is only 4 years older then myself.
 
Geez Dian, I hope you educated the RP! What a dim whit!
 
As I get older my tolerance for morons diminishes. This includes family members. Dian, you don't have to take screaming from anyone. Hang up next time.
 
Yeah Dian... mom's sis sounds a little unhinged... probably best to just put her on the do not call list.. you don't need that kind of abuse... and for the record that's what those comments were, abuse.
 
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