Input Request: I've lost so much, please don't take my beer!

suchahoward

Member
Joined
Mar 25, 2019
Messages
20
Reason
PALS
Diagnosis
07/2018
Country
US
State
Washington
I started drinking diet tonic water and vodka after being diagnosed. I still drink beer, take riluzole, radicava, and baclofen. The biggest help for my cramps is yellow mustard. Two to four tablespoons out of a jar per day. The neuro will let you know if your liver enzymes go out of wack and need to cut back. Drink up! Screw ALS!

Chuck
Thanks Chuck! Did/do you play dobro?! I tried learning it after I could no longer form chords on the fretboard with my left hand, but i’d never played open tunings before, and only ever faked fingerpicking before. Still, while I could no longer perform, I have been able to attend a weekly bluegrass/country/OldTime acoustic jam that I’ve been going to for years, everyone knows what I’m going through, and so they’re very patient and forgiving with my fumbling around. All that said, it’s getting hard and harder to hold onto the slide and harder to do what I need to do with the fingers of my right hand. 😞

I’ll be thinking of you at the jam Friday. Cheers!
 

suchahoward

Member
Joined
Mar 25, 2019
Messages
20
Reason
PALS
Diagnosis
07/2018
Country
US
State
Washington
....but I’m still rolling out of bed multiple times a night with leg cramps. Sorry I don’t have better news. Bottom line, enjoy the beer even if you have to use a straw.

Bill
Oh geez, Bill. Multiple times a night? I feel like a wuss now. I’ve had a few cramps over the past week, but most nights if I lie down and breathe and relax the fasciculations calm down after an hour or so and the danger of cramps is gone. But when those fasciculations intensify, man, I get a spike of anxiety and panic, like a PTSD response, because my cramps have been excruciatingly painful, muscles clenched up as tight as they can and it feels like some is stabbing me with a chef’s knife.

I’ll be thinking of you, my new friend.
 

suchahoward

Member
Joined
Mar 25, 2019
Messages
20
Reason
PALS
Diagnosis
07/2018
Country
US
State
Washington
I like beer. I miss it more than most things I've lost, including trail running. But I found that when I drank it I couldn't swallow, and my muscles felt even worse. Occasionally I'll have a few sips of a friend's beer, but the last time I had a quarter cup I was achy and couldn't sleep all night. I often ask my friends for a smell. The hoppy IPAs smell so good!

Mexilitene works for holding off my muscle cramps. I also take Nuedexta and, until recently, Riluzole.
Thanks for the reply, Nona. Trail running is super popular here in the Pacific Northwest. I don’t have good enough knees, so I hiked the trails instead, but running looks fun.

I love IPAs too. They are usually higher in alcohol than other styles, but there are more and more “session” IPAs available now, with lower alcohol levels, so i’ve been thinking of try them. The effect of alcohol is not my main reason for liking beer.
 

lisa g

Active member
Joined
Apr 17, 2019
Messages
84
Reason
PALS
Diagnosis
04/2019
Country
US
State
Florida
I enjoy a glass of wine 🍷every now and then. I find after the diagnosis I drink it as often as I did. I already have a slight slur when I talk and adding wine just adds to the sluurrrr 🤪. But it's a happy slur
 

azgirl

Senior member
Joined
Jan 20, 2014
Messages
956
Reason
PALS
Diagnosis
12/2013
Country
US
State
AZ
I kept drinking wine until it suddenly didn't taste good. No problems with liver. But just don't risk a fall!
 

Wilson2009

Distinguished member
Joined
May 4, 2017
Messages
163
Reason
PALS
Diagnosis
01/2017
Country
US
State
KS
Whether it be Gin & Tonic or whisky and water, I continue to enjoy a nightly adult beverage.
 

Ben64

New member
Joined
Jul 2, 2019
Messages
7
Reason
PALS
Diagnosis
04/2019
Country
UK
State
EX
Hiya Such,
Hope the familiarity is ok.
If the Doctors prescribed drugs that require no alcohol status, they would have told you. Duty of care and all that. Here's a couple of things I do to alleviate the same problems you are having.
Fingers, grip.
Assuming you can still move the fingers, and it's more loss of feeling in the finger tips. Either way, as long as we're talking nothing heavier between the fingers than a GQ magazine. Try latex gloves. Not the quality expected in a prostate exam, but the type found in a builders/painters merchant. This is a cheaper version used to protect against paint, white spirit, cement, etc. But, they breath, so you can, as I have keep them on for hours without sweating, or circulation issues. And they grip like a Gecko on the hunt.
Cramps.
I'm a little further down the line with the legs than are you. I can walk but 10 feet before collapsing, and that's with two crutches. Although we lose the mobility in our legs, and although they deteriorate before your eyes. You still have to take care of the meat and bone. I found strengthening regimes counter productive, as was general exercise. What I did find was targeted stretching. Being a fit individual (past tense) I've always been aware of the importance of stretching. Name me a mammal on this planet that doesn't stretch as soon as it wakes up. So, if you can, to start with use the oldest technique in the book cat/dog like. For this you will need to have your toes under you. If you can't raise a leg, slide it on the floor. but get stretch all the way up to the small of your back. DO NOT over stretch. Stop at the initial 'Pull' and release slowly. As you progress, aim to do your stretches standing. In bare feet on tiled/veneer floor would be excellent for purchase. Always 'Shake out arms and legs after stretching. I do this 3-4 times a day and my cramp attacks are confined to memory. The only down side, as I found out is if you stop stretching, the cramps come back.
Try this, it should only take a couple of days to get significant results.
Do Not Over stretch. Easy Peasy, lemon squeezy. Something my grannie used to say.
Good luck.
Ben64
 

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
185
Reason
PALS
Diagnosis
01/2018
Country
US
State
OH
Welcome to our club! Sorry to have you as a member.

I love to drink wine. At one of my first appointments with my neurologist, my husband asked this very same question. He is very up front with us and down to earth about this sucky disease. He told me to drink anything I wanted, as much as I wanted. His theory is that this disease robs of us so much, why not continue with any part of enjoyment life can bring. Later he mentioned liver blood tests would show any issues that could arise.

Cathy🍷
 

suchahoward

Member
Joined
Mar 25, 2019
Messages
20
Reason
PALS
Diagnosis
07/2018
Country
US
State
Washington
Hiya Such,
Hope the familiarity is ok...

Do Not Over stretch. Easy Peasy, lemon squeezy. Something my grannie used to say.
Good luck.
Ben64
Thanks Ben64. I did yoga for many years and miss it dearly. I had to stop when even the easiest poses caused my legs to go into cramps immediately.

That said, I know there are types of body work, like certain types of massage or some other techniques, that can do the equivalent of gentle stretching for you as you lie on the table, and I wonder if that might work.

Your answer resonates, because I've wondered if too much sedentary couch time is part of the problem.

Thanks!
 

suchahoward

Member
Joined
Mar 25, 2019
Messages
20
Reason
PALS
Diagnosis
07/2018
Country
US
State
Washington
Welcome to our club! Sorry to have you as a member.

I love to drink wine. At one of my first appointments with my neurologist, my husband asked this very same question. He is very up front with us and down to earth about this sucky disease. He told me to drink anything I wanted, as much as I wanted. His theory is that this disease robs of us so much, why not continue with any part of enjoyment life can bring. Later he mentioned liver blood tests would show any issues that could arise.

Cathy🍷
Thanks, Cathy. I of course LOVE this response!
 

suchahoward

Member
Joined
Mar 25, 2019
Messages
20
Reason
PALS
Diagnosis
07/2018
Country
US
State
Washington
Fingers, grip.
Assuming you can still move the fingers, and it's more loss of feeling in the finger tips. Either way, as long as we're talking nothing heavier between the fingers than a GQ magazine. Try latex gloves. Not the quality expected in a prostate exam, but the type found in a builders/painters merchant. This is a cheaper version used to protect against paint, white spirit, cement, etc. But, they breath, so you can, as I have keep them on for hours without sweating, or circulation issues. And they grip like a Gecko on the hunt.

Ben64
P.S. For me, no loss of feeling, just loss of strength and mobility. I can barely move my left pinky and ring finger, and my right pinky is not far behind.

Also, just in the past two weeks or so, I wake up every morning and my left pinky and ring finger are clenched and I have to use my other hand to unclench them. It takes 3-4 times opening them back up for them to stay open.
 

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
185
Reason
PALS
Diagnosis
01/2018
Country
US
State
OH
My pinky was the first pawn to be taken down in battle. My ring finger came next. I am heading back to OT next week to see about getting splints for my hand. I have the same problem at night, so, according to my neuro, the splints are supposed to help with this.

Have you started any PT or OT? They can help with lots of helpful suggestions and exercise/ROM you will need.
Cathy
 

Ben64

New member
Joined
Jul 2, 2019
Messages
7
Reason
PALS
Diagnosis
04/2019
Country
UK
State
EX
P.S. For me, no loss of feeling, just loss of strength and mobility. I can barely move my left pinky and ring finger, and my right pinky is not far behind.

Also, just in the past two weeks or so, I wake up every morning and my left pinky and ring finger are clenched and I have to use my other hand to unclench them. It takes 3-4 times opening them back up for them to stay open.
Sorry to hear this. You are further forward than I in the hands dept.
I too wake up at times with an almost clenched fist, but through arthritis rather than ALS. I've been giving thought to a glove that has little to no flexibility in the fingers. Keeping the hand open at night. But one question holds back the progress from thought to trial. If the subconscious act of closing the hand is prevented by such a device. Would the hand settle down, or cramp up in its efforts to close?
If you are open to any and all suggestions. I got some that are out there!!!
Try this on one hand only before retiring. Try not to get any residue on the other hand as this might affect results.
Tiger Balm/deep heat or the US equivalent.
I've used it for my hands and it helps, a lot.
Hears the reasoning.
Stimulation of the hands is at its lowest when we are asleep, giving every excuse to curl up through inactivity. I believe the warming sensation of the applied balm stimulates the hands and fingers just enough to encourage movement.
Give it a bash, if nothing else, it'll clear your nasals.
B.
 

Vincent

Senior member
Joined
Dec 30, 2013
Messages
922
Reason
PALS
Diagnosis
08/2014
Country
CA
State
ON
With a g-tube there is no reason you need to stop beer. A friend used a 40ml syringe and it took an hour but he still had a beer on his deck. Or if you are just looking for a buzz, straight in the tube works too, a 60ml syringe is about a shot glass of beer. As far as alcohol and cramping, I only get that from red wine. I'd love to join you, but I got the liver thing going on.......
Vincent
 

suchahoward

Member
Joined
Mar 25, 2019
Messages
20
Reason
PALS
Diagnosis
07/2018
Country
US
State
Washington
My pinky was the first pawn to be taken down in battle. My ring finger came next. I am heading back to OT next week to see about getting splints for my hand. I have the same problem at night, so, according to my neuro, the splints are supposed to help with this.

Have you started any PT or OT? They can help with lots of helpful suggestions and exercise/ROM you will need.
Cathy
Thanks Cathy. I'm trying to track down local PTs and OTs with experience with pALS.
 
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