Dust off the Bar......

Complain away, Angie. I'm back here after only two hours of sleep because of a petty complaint. We now have a night nurse, my PALS wanted to take a pee and I was too dizzyingly tired so I called for the nurse and laid down again. Nurse forgot to put a safety towel out under him, spilled some (general and ongoing confusion about the relation of liquids and gravity) and then, after being made aware by my PALS that he's laying in a puddle he put a towel out so he wouldn't sit in a moist bed. By that time I was awake and because I can't sleep angry I changed the towel to a new one which was placed better and fussed some around my brave boyfriend. He's putting up with so much and he's only doing that to protect me. I'm thankful for getting help but I hope the next nurse will be really helpful in that I don't lose sleep because I wished I'd have done it myself sleepwalkingly and without upsetting my PALS.
So now I'm here looking for a nightcap while outside the birds are starting their havoc. Kim, maybe a bit of your oil would help me. Just hit me over the head with the bottle real quick.

Wish, I can totally identify with not sleeping - hence, my early a.m. postings here. Our schedule is wacky, but since I only work one single day per month anymore, I can deal with it. I must admit I admire and envy your German healthcare system. Most PALS/CALS here in the US do not have the option of in-home, sleep-over healthcare personnel unless it is paid out of pocket. At least, that is my understanding of it so far, but I'm open to anyone telling me otherwise!

Kim, does the cannabis oil help with spasticity? I'm thinking of seeking a licensed provider for a prescription for Dave so that I could massage it into his palms and his lower back where his spasticity is worst.

So, what's the bar serving tonight? I'm watching Stephen Colbert and sipping Pinot Noir! It's great to have a laugh or two!

German healthcare really is something to be thankful for. It's not perfect, the demand is huge so many people work in nursing that are hardly qualified.
Knowing how many here struggle with finding affordable help let's me be more patient and thankful. But it's really hard to feel I'm forceing my PALS to adapt to the ones who are basically there to help me more than him.
Still awake after two hours. Maybe I'll fit two hours of sleep if I really try to let go in my head. Maybe reading about Pinot noir is relaxing me already?

Hi, is this a thread of what delicious drinks help with our PALS & CALS cope with this monster?

If so, G&T's and a good movie tonight made us feel quite content. Lots of running up and down as bar wench for me but totally worth it.
I'm not opposed at all keeping us both happily buzzed once in a while, especially with what we have to face daily...its all good! I always tell him to tip his waitress but I'm yet to receive a tip, lol.

Ninja, getting tippsy sounds like fun for the both of you. Gin and tonic was my PALS poison of choice. Basically the only drink he finished in acceptable time while he was still healthy. (He always drank weirdly little water, like a gerbil.)
Now we sometimes give him a little wine or watered down gin or whiskey via the feeding tube.
After he just got the PEG I asked the nurse at the hospital if it was okay to give him alcohol through the tube she asked me "Why would you want to do that?" - "To get buzzed." Duh.

Not sure what / how quickly an "appropriate" amount of alcohol would be for our PALS if delivered via a PEG; however, I believe my PALS can have whatever he wants and if/when the time comes that he can only have some alcohol via PEG, I guess I would deliver it just a bit at a time. At present, Dave can still chew/swallow/talk so no use for the PEG other than supplemental fluid. However, Dave likes wine and since he cannot possibly fall (since he can't get up) I allow him to have 2 glasses each night. What the hell - not like it's an issue if it kills him! He/we have more important things to worry about.

I am well Angie gal. Please vent as you wish.

I dring a couple of glasses of wine every night. Seem to have lost my taste for red wine so drink white now.

As my sister said to me: "If I were in your shoes I would be drinking all the time, smoking pot and cigarettes!"

Any Coronation Street fans out there?

Buckhorn, I thought about timing and volume in terms of how you would normally consume it. Like maybe a glass in an hour or two. If sipping wine is his thing, I wouldn't give more than 50 ml at a time, wait a little and give him his next hit. I water down spirits like gin for better more intuitive dosage to a longdrink.
Tolerance sure went down from not imbibing so much, so a little is already making him tipsy which is the work order anyway.
Guess Dave could take a lot more. Not falling is a good point.
Extra slurred speech² is something that doesn't promote drinking though.

I think cannabis helps just about everything and certainly doesn't hurt. A few nights ago I forgot to take my THC part (I also use Charlotte's web CBD oil) and woke up in pain. I never smoked weed because smoke, in general, make me ill. I was reluctant to start the TCH and am still working up to what my doctor believes is a therapeutic dose, for me.

Okay my Brilliant forum friends, I need a real answer. As you all know I've lost the use of my left arm/hand. I thought my progression was going to hit my left leg next, but I seem to be having more issues with my right hand and arm. How the HELL am I supposed to continue eating if I can't lift the damn food to my face? I was trying to figure this out, but I'm stumped. They won't suggest feeding tube if my breathing and swallow is not compromised, right? The only thing I can think of is being fed like a freaking two-year-old. Am I missing a thought somewhere?

Angie

The PALS I know who don't have bulbar symptoms let their CALS or other caregiver feed them.

As far as the feeding tube, I suppose they could give you one but someone else is still going to have to feed you.

If your hand goes first, there are adaptive eating tools as long as you can still use your arm.

Hey Kim
Thank you. I know that in comparison to where some are or what they have dealt with, this seems minute. But gosh darn it, I am angry. This whole thing sucks. Am I allowed to have the temper tantrums of a two year-old as well, since I will be as well chaperoned as any munchkin on the planet?
BLECH! I'll sign off while I'm in my pity party and I will catch you all later.
Angie

First, let me get a couple straws for ya...

Have a tantrum! Have two! Losing your hands is definitely worth it. This loss of independence must feel especially bad because you can still walk and talk. The dexterity of our hands pretty much makes us human. But the dexterity of our minds really sets us apart. Meaning: there are tools.
If you search for "dynamic arm support" you'll find a nice mechanical gadget. My PALS has one called Armon (pun intended by marketing). This support allows you to move your arm (which you can do for longer than you might think) without having to heft the weight of your arm. Think underwater or zero gravity. So a good tool to save engery right away and prolong full function of your arm. We had to put my boyfriends hand in a orthesis on top of that so it wouldn't your fall down at the wrist.

Being fed is a good way to conserve energy. For a short time I thought that the swallowing of my PALS was really bad because he ate so little. Once he gave up lifting the fork himself he could eat a whole plate, no problem.

The feeding part, by the way, is something I as a CALS quite enjoyed. Especially if it was my food and he liked it. Because he already needed more time to chew and swallow I could easilly stuff my face with all the food I wanted at the same time. It never felt like a task.
Feeding someone is the easiest way to help a PALS and many friends volunteered for it. There's less boundaries than with body hygiene.
If you're cool about it, it can be fun for everybody. And you're not a two year old, you can say what you like and if you don't open your trap that means no, noone will try to force a spoonful more into you without your consent.

I recently read about a foot mouse for your computer. Think of communication, please, because I like your posts.

Also because you posted this question at the bar there's alway Garfield's method of just delving face down into a bowl of food. It's not strictly ballroom although it will show your appreciation of the meal while maintaining control of speed and amount.

Angie,

You are allowed to have pity parties, rants, raves, and anything else here. This is your safe place. Please find a way to keep communicating and look into that Armon.

We're all in this progressing mess together and we should all feel ok with saying what we need to say.

Angie,

Since we’re in the pub right now, have you seen those beer hats that look like baseball caps with holders for beer cans on the sides, and a big straw that goes from the beer cans to your mouth? Hands-free drinking at its finest. Someone just needs to load up the cans for you.