you know what bugs me?

[nona]

We just tried switching my chair controls from my right to left because my right arm is done. When I couldn't drive it with my left ( I could go back and right but not forward and left), my own mother said that it was in my head.

 

[affected]

When my Chris was choking on some puree I was feeding him with a teaspoon, his mother suggested he might just like a piece of the chicken she was having ....

 

[affected]

This is a story about my Chris and a stupid person. It is a true story and happened just after he was diagnosed.

He went into the post office and there was a queue.
He stood in the queue and a past customer from his cafe entered and came up behind him. I'll just call him stupid ok.

Stupid - oh you closed the cafe, why did you leave?
Chris - I can't talk
Stupid - what?
Chris - I can't talk
Stupid - (louder) what?
Chris - I can't talk
Stupid - oh. pause... why can't you talk?
Chris - I have MND
Stupid - what?
Chris - I have MND
Stupid - oh no, you have MND?
Chris - yes
Stupid - oh ... pause ... so, what have you been up to then?
Chris - I can't talk
Stupid - what?

 

[ARCG]

My husbands father came for a visit and when he was leaving said to my husband, who at this point couldn’t drive, etc. “Come visit me soon and we will go fishing!” My husband said, “Dad, my arms don’t work, i can’t ho,d a fishing”. To which his Dad replied “O, sure you can!” At which point he got in his car and drove away. You can’t fix stupid.

 

[ARCG]

Meant to say, My husband said “I can’t hold a fishing rod”

 

[KarenNWendyn]

“You can’t fix stupid.”
That about says it all.

I am reminded of the serenity prayer:
God (or Goddess), grant me the serenity to accept the things I cannot change (including the reality that I can’t fix stupid),
Courage to change the things I can,
And wisdom to know the difference.

 

[nona]

ugh, the people who think it's mind over matter. If you just worked out a little more, ate less meat...

 

[KarenNWendyn]

I’ve now had a couple people try to convince me that I’d improve on a grain-free diet. If there was any truth to that, we’d all be grain-free. I hate that kind of BS.

When I first developed my foot drops, I saw an orthopedist who thought I might have peroneal tendon ruptures. MRI ruled that out, but he sent me to PT at my request. By the time I actually saw the PT, I already had the “we suspect ALS” diagnosis. The PT insisted I could overcome it and told me about a patient who did through rehab. I told him she was probably misdiagnosed. He gave me exercises to “rebuild my myelin sheaths”. Really? ALS is not a demyelinating disorder. You can’t fix stupid.

 

[KimT]

I live in constant fear that I will say what I think to other people. I was never a shrinking violet and known for being outspoken to management at the college. Honestly, if one more person tells me I'll beat it or I'm looking or getting better, I think my inner witch will emerge and all hell will break loose. An ignorant lady at cards a few weeks ago said, "at least you don't have cancer." I gave her a pass because she isn't the brightest bulb on the tree and she was just trying to say something.

 

[affected]

A few months after Chris died I was stopped by an acquaintance in the grocery store. She said - I heard your husband died? I said, yes I'm afraid he did. She said - oh what it from natural causes?
You can't fix stupid.

 

[KarenNWendyn]

if one more person tells me I'll beat it or I'm looking or getting better, I think my inner witch will emerge

Don’t you just love it when people say, “Oh you look good?” Sometimes I would answer, “Yeah, I don’t look like Stephen Hawking.” (That was before he died ).

Kim, you have an inner witch??

 

[affected]

I have an inner ...

Karen I used to find that one really hard too - I would spend hours getting Chris ready when people did come here infrequently. He would be all ready sitting in one place and would never move from there while they were here. They would exclaim to me aside - "Oh he looks good really!"
The way it was said always held an air of "and you made out like he was dying, but I don't think it's that bad".

 

[KarenNWendyn]

Since we’re venting here (and it sounds like we all need to), my own mother said to me not long ago, “Do you miss playing your music?”

No Mom, I don’t miss playing my musical instruments, riding my bike, hiking with my dog, being able to eat without choking, or being able to speak intelligibly without being judged. My old life sucked. I’m much better off now that I can’t do all those things. I mean, seriously? What was she thinking?

I think she unleashed my inner .

 

[Nikki J]

A friend of mine who knew my diagnosis looked at my afo and asked how did you hurt your knee? My friend is a physician This is the same person who,on learning I was gene positive said you won’t get it ( ALS) denial much?

 

[KarenNWendyn]

A friend of mine who knew my diagnosis looked at my afo and asked how did you hurt your knee? My friend is a physician This is the same person who,on learning I was gene positive said you won’t get it ( ALS) denial much?