What's frustrating to you?

Not open for further replies.


May 10, 2003
Point Edward
Dealing with als for a long time I often wonder what is the most frustrating part about it? So far here is what is winning. After getting over the dignity part of it I haven't been able to since oh probably 2003, and since then seems like I have had thousands do it for me and most are good at it but every so often you get that timid not so sure one that doesn't know how to wipe my butt. Sure they clean up my butt cheeks good enough to kiss but that isn't the part that needs attention. So now I can only nod yes or no for communication (no speech left) they ask is that ok? I nod no several times growing more and more frustrated screaming in my head things like, clean the crack clean the crack. Just a little look into the life of a pals. Remember if you can't laugh about it its winning
Hey Jim. I shouldn't have to worry about that because I just laughed my butt off reading that post. Seriously though it is getting quite hard to do that chore myself and being on a lot of meds makes for loose ones and it takes about 57 feet of toilet paper to feel "fresh" as they say so I can almost relate.

Thanks for the post, it gives us all a "picture" of the struggle y'all have.

My brothers name is Jim so I couldn't help but picture him in your very descriptive explanation of frustration! He doesn't have ALS, but he is very "anal." My husband is the PALS.

Thank you for sharing.
LOL I wish they could walk an inch in your shoes! :-D Guadbliss says to keep vaseline around the anus as it makes cleaning up easier. Now if you could get the caregivers into that habit they'd not have to ask you if their job is done. They'd see for themselves.

ALso, keep a box of baby wipes on hand. They work better than "dry" cleanup. And the ALS handbook says to buy a pair of plastic salad tongs for the bathroom if you can still use your hands. Makes the reach easier. Don't know why this stuff sticks in my brain. Mind you, I cannot remember what I had for lunch but THIS I recall!:-D Cindy
OK you guys get with the program, call your ALS contact and get a bidet. My husband says you never have to worry about nicotine stains again. He would kill me for saying that and I'm laughing as I'm typing. Good thing we cover everything on this forum. I love laughing and some of this is just plum funny.
It's a Job

Rhonda -

If you aren't already employed by Toto Toilets to market bidets, then you should be. I'm getting very silly visuals of your ad campaign. :-D

Rhonda has it right. I've said it before and no doubt will again but bidets are the way to go for anyone but especially for anyone who needs someone else to do the job for them. Toto makes a great line and they are available for considerably less than list on Ebay. I have the Toto Jasmine and paid about $500 for it a couple of years ago. It does everything but submit your income tax return.
Now THAT was a lol!:-D Cindy
Ok, this is funny "crap"....lol..it is something to think about.

Maybe, just have someone make a sign for you, that when they clean, it's the crack that's dirty.....

take care all, have good day..


you have made my day

I fell not long ago (something I'm rather good at) and broke my wiping arm, so it presented a problem...Let me draw you a picture-visualize the wide world of sports-a down hill skier in the starting gate-in full stoop with his bidness stuck up in the air-got it? Now enters my wife of 44 yrs to perform the grim task of cleanup and that is what she faces....Not even a smile, no snicker, nonothing...I would have fallen in the floor in hysterics had the situation been reversed, but not her. This is how you determine who your friends are. Keep thinking, I loved your post....:-D
On the other side of this coin we have the over zealous wiper, and if I could have my voice back just to say Hey Hey take it easy this would be it. Imagine after a successful bm getting cleaned up in a commode chair and as your getting your cheeks washed and unfortunately your b*gs hanging there and your b*lls are getting knocked around like wind chimes. I can't see but I am pretty sure I didn't crap on my b*lls but they're being hit like a Mexican pinyata just for hanging out in the spot with an *ss-hole. Will the frustration ever end?
Good to hear from you again Jim. You must of sat up all night in that commode chair thinking up this one. Laughed my butt off.
Ok so since everyone is being so candid. I have to ask this question, it is off topic butt is still on the bum issue. I am not diagnosed and my doc thinks not als but some type of mnd. I have read als does not effect the bowels, but I can't understand as this is a muscle too. I feel twitches in my rectum and i'm telling you it's like when I have to go, I'm running to get there, other times it's days with no action. Have others had problems with the bowels?
I have bowel problems on Rilutek. From what I've been told though ALS does not NORMALLY? affect bowel or bladder function. BUT sitting in a wheelchair 12-14 hours a day would lead me to think things aren't getting shook up as much so might slow things down. As for the poop through the goose, I haven't worked out a theory on that other than blame it on the Rilutek, or maybe the liter of red wine.
We did talk about issue before, now that I remember. They asked me if I wanted to do an EMG on my splincher muscle but I passed, for obvious reasons. :-D
Not open for further replies.