you know what bugs me?

nona

Forum Supporter
Distinguished member
Joined
Oct 1, 2018
Messages
203
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
When people ask me if I'm cold and want a "blankie," or if I'm hungry and want "din din."
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,933
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Or ask someone else a question they should be asking you. It used to happen sometimes with my sister. They would ask me “ does she...”. I would say I dunno. Ask her.

Also people would shout. Just because you have lost speech does not mean you are suddenly deaf.

And the general treating you like you are mentally challenged.
 

nona

Forum Supporter
Distinguished member
Joined
Oct 1, 2018
Messages
203
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
Or ask someone else a question they should be asking you. It used to happen sometimes with my sister. They would ask me “ does she...”. I would say I dunno. Ask her.

Also people would shout. Just because you have lost speech does not mean you are suddenly deaf.

And the general treating you like you are mentally challenged.
Right!?! All of those too. And people asking who is managing my finances, as if I can't..
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,569
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
Then there are those who misunderstand the word progressing concerning ALS.

Question; "How is he/she/you doing?'

"Well... he's/she's/me is progressing, slowly for now."

Reply; "Well I'm glad he/she/you are getting better."

Let it go or explain.
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,830
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
Some people who see me in a wheelchair will say, “Can I help you, dear?”. This is said in the tone of voice they might use for a 95 year old woman, not that the 95 year old woman appreciates it any more than I do. Disabled is somehow equated with helpless and thus qualifies one for child status in our society.

Note that if an elderly person is physically more active than they “should be”, they’re referred to as “spunky”. However, I’m not sure “spunky” would ever be applied to ALS.

And my slowed slurred speech must mean I’m mentally challenged, right?

I haven’t yet gotten the “How’s she doing?”, asked of my spouse in my presence, but I’m sure it’s coming.

People seem impressed with how I drive the wheelchair. Maybe they think that just because I’m physically disabled otherwise that I’ve lost everything?
 

nona

Forum Supporter
Distinguished member
Joined
Oct 1, 2018
Messages
203
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
Yes! People always comment about driving the chair. It's sure easier than a lawn mower. I get a kick when people think they can push or lift it, or try to protect me and my 300 pound beast from traffic.

I have had more than one medical provider ask how are "we" doing with bowels, feedings, breathing, etc.

On the bright side, no more mammograms, colonoscopies, pap smears...
 

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
242
Reason
PALS
Diagnosis
01/2018
Country
US
State
OH
(Sorry gentlemen....but here it comes)

I thought I had finally begun menopause last fall...and then today happened! 😩 🤬
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,569
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
Ten years ago I was going through a late mid life crisis... I was thinking about
getting another Harley motorcycle... thank goodness that passed. :)

Now it's a new Buick with so many buttons and a media screen in the center
console I still haven't figured out to use half of it.

A Buick ???
 

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
242
Reason
PALS
Diagnosis
01/2018
Country
US
State
OH
You know Al, that now makes you officially old-part of the blue hairs and geezers.;)
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,981
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
I'm with Amy! Thanks Lisa. I loved that line - Yes we are all dying of something, how about you trade what you're dying from with what I'm dying from. Sorry that cracked me up because I know my Chris would have loved that one so much!
 

Ken15

Active member
Joined
Jan 9, 2018
Messages
67
Reason
CALS
Diagnosis
09/2017
Country
US
State
SC
How about: "Oh, and what are you dying of, stupidity?"

Ken
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,519
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
When I sprained my good ankle way back in 2016 I had to use one of those driving carts at Lowe's. I was doing a major remodel of the new condo and ready to spend some serious money. The clerk ignored me and waited on two other people behind me. It was as though I was invisible. Needless to say they didn't get my business.

I can't tell you how many times relatives and people I've met tell me they think I'm going to BEAT IT. My SIL actually said she thought I was so smart that I'D FIND A CURE :LOL::LOL::ROFLMAO:. Ken, you can't fix stupid. I can excuse ignorance but I really have no patience for relentless stupidity.
 

lisa g

Distinguished member
Joined
Apr 17, 2019
Messages
107
Reason
Other
Diagnosis
04/2019
Country
US
State
FL
Kim you are so right. I can't tell you how many times I've been told "your tough I know you can beat it" 😕 I just shake my head to the stupidity. They obviously don't understand the meaning of "no cure"
 
Top