New here, and a question

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gramma's girl

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Hi,
my Grandma was just recently dianosed with ALS. She is still puttering around alright, although she's frustrated with not being able to do simple household chores, such as vaccuuming. She has also started referring to herself as "The Gimp" and making comments about not being around for much longer. Also, because she's feeling useless, she has started drinking quite heavily. She has always enjoyed a few (2 or 3) drinks in the evening, but lately she's starting before lunch and becoming quite intoxicated by mid-afternoon. My family is divided on the issue, with one part just wanting to help her enjoy what time she has left while the other part is furious, convinced that the more she drinks, the sooner she's going to die. So my question is...does alcohol consumption speed up disease progression? The doctor has told my Grandma that if she wants to have "a drink" to go ahead and have one. Is he just saying that because he's old (79) and senile or is it really alright? Any thoughts or links to other resources would be greatly appreciated. Thanks.
 

Al

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Hi gramma's girl. A while back most of the regulars started talking about our drinks of choice. Most of us do have a few drinks. Sometimes it is a relaxing thing and sometimes it is a coping thing. My doctor (GP) feels that if a few drinks makes me happy then what is the harm. He is in his mid fourties, far from senile. Being loaded every day by mid afternoon could be called a little self destructive. How long has she been doing this? It could be her way of dealing with the disease. Get loaded and you don't have to deal with it. It could be a stage she is going through. I haven't read or heard any statistics on the incidence of alcoholism in ALS patients which woud make me believe that generally it is not too large of a problem
We had someone post this week about pouring wine down a person's feeding tube. Even if you can't taste it I guess you can still get the buzz.
I'd try to let her know that she is not alone and there are lots of family that cares about her. She may be feeling isolated and alone. A talk to her Doctor might be in order if she doesn't come around in a while. I'm sure others will have more to say on the subject so keep an eye out here.
Good luck. Hope things improve.
 

Carol Deboer

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Hi Guys,

Hope everyone is doing alright. What I have observed with drinking with this als thing is, as the diesease advances, you will have a harder time drinking. Henry was a beer and wine lover. However, about 2-3 years into the diesease, he would drink maybe 3 beers, and he would feel like he drank 12. His motor skills became more impaired and his speeck was horrible. Of course, he had to drink his drinks out of a straw too as the diesease went on. Tward the end a beer would last him 2-3 hours. A single glass of wine the same thing. I do not think there is nothing wrong with having a few drinks, God knows it will kill the pain of this thing, but, you will all find that it will take very little booze as time goes on to feel the effects. As for getting completely bombed by midafternoon, well, I would be wary of falls and such. It really does mess with your brain and your motor skills. I do speak from experience. It may not affect everyone the same way, but, I think that eventually it does. Just my two cents worth. And if your not hurting yourself, then drink on !

Love to all,

Carol
 

Elaine

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Al , imagine us taking two to three hours to drink a single glass of wine.
Just think your batch of wine will take a lot longer to finish,save money!
Nice to hear from you Carol,you'll have Al really thinking what you told us about drinking.The motto is drink and enjoy while you still can.
Stay strong
 

Timshelper

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Elaine I love your little angel and the graphics its the first time I've seen it since I operated on my computer and made it whole again. About drinking and medications go it doesnt matter who you are they usually dont mix but as far as Tims predicament he only takes the Rilutek and I'm not sure what it says about drinking with it. Carol is right about losing your tolerance to the spirits if Tim has a beer his motor skills do get worse but if you enjoy that beer and you dont do any acrobatics that night ? I'm sure it cant hurt. Just dont drink without a designated caregiver by your side because we dont want any accidents I think that would be our biggest concern. I am wondering though if Granny is drinking out of depression than just enjoying a drink once in awhile?
Kim
ALS About Loving Someone
 

Al

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Well as Elaine says a few drinks can't hurt. Right? Now if you are taking Rilutek(Riluzole) it is hard on your liver. Drinking is also hard on your liver. Blood tests are something that should be done every 3 months to check on liver function ( I think it is creatine levels they check for) could be wrong but I think that is what they check.
I have my blood done and my GP says I'm not killing myself with a few glasses of wine per day and I'm living life to the fullest. Doing what I can while I still can.
I was out today with an ALS patient from Newfoundland. He was drinking wine with a straw and said he used to drink ber a lot. Beer through a straw wasn't much fun. Wine works better. Or rum or rye whatever is your drink of choice.
But the thing still is moderation. Things are hard with this disease. Sometimes for a while drinks will make it easier.
Sooner or later you will realize that you have to face it head on. It won't be pleasant but it has to be done.
 

PALS Mike

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While you're on Riluzole (Rilutek), your doctor will be testing for elevated Bilirubin (among other things)...not creatine.

From the Rilutek website...http://www.alsinfo.com/patients/RilutekPatientFactSheet.jsp

Is there anything I should avoid?
Of course, it is generally not recommended that you smoke or drink excessive amounts of alcohol. But this is particularly important for patients taking Rilutek. Smoking may decrease the amount of Rilutek in the blood; alcohol may contribute to compromising liver function and may be associated with an increased risk of liver problems with Rilutek.
 

gramma's girl

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Thanks everyone, for all your comments. This whole thing has been so hard on my family. I was always under the impression that we were a fairly close family, until my Grandma was diagnosed. Now all of my uncles want her to sell her house and move into a home. They've all decided that my mother (their sister) is contributing to my Grandma's drinking and are determined to get her away from my mom and into a controlled environment. The fact of the matter is though, that my Grandma has faced alot in the last few years. My Grandpa died almost 3 years ago, leaving my Grandma on her own for the first time in her life. Shortly after that, she began noticing weakness in her hand and leg. After almost 18 months of tests, they finally diagnosed her with ALS, which we had all heard of but never really paid much attention to because it didn't affect us. Once we had a diagnosis, everyone did a ton of research. Some from more reliable sources than others. And that's where the problem is coming in. One of my uncles now has all the others convinced that Grandma's drinking is speeding up the progression of the disease. My Grandma has asked her doctor and the specialist about it and they both said that no, it did not speed it up. My uncles, however, aren't believing her and 2 out of the 4 have even stopped speaking to her altogether because they don't want to watch her "drink herself to death". In my opinion, it's probably the stress of her children nagging at her and turning their backs on her that are going to affect the rate of progression. But hey, what do I know. I'm just the grand-daughter. :)
Anyways, now that I've babbled on and on about my plight, I'd like to thank you for reading this big long post. I'm not generally much of a talker so don't worry...not all of my posts are going to be miles long. lol
 

gramma's girl

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Oh, by the way, my Grandma isn't on any medication because the doctor told her that although it may prolong her life, it doesn't mean that it will improve her quality of life and she doesn't want to be in "that state" (her words) for any longer than she has to.
 

PALS Mike

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Funny...
My family went through a similar experience with my Grandmother.
My Grandfather passed away - my Aunt puts Gramma in a home - Gramma has a stroke - family starts to fight about what's 'Best for her'...

It seemed that everyone involved wanted to be 'Right'.
What was lost was...

What does Gramma want?

My Gramma spent the last 5 years of her life unhappy, because her daughters were fighting about her care.

Maybe you could be the voice for your Gramma.
Find out what SHE wants and how SHE would like to live out the rest of her days and tell the family.
Everyone is entitled to an opinion, but it's your Gramma's opinion that matters most.
 

Elaine

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It's really a shame that families start to fight when in fact everyone should be pulling together.I agree with Mike It's what your grandmother wants that's important.
Your grandmother needs the support of her family especially now,not more bickering. They should realize that her time is limited and spend more quality time with her.
I hope everyting will settle down and you will have all your family back.
Stay strong
 

Granny

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To Gramma's girl:
I have one beautiful granddaughter and I hope that she can be as caring and sensitive as you are. What a blessing you must be to her. Don't worry about your posts being too long.
I have lived with ALS for over a year now, and one of my greatest fears is what it will do to my family. They are very caring people, but illness seem to bring out the worst in people. Guess it is the stress. Pals Mike had some very good advice about finding out what Grandma wants. It might be hard to carry out that advice, but we will be rooting for you.
 

Jane

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what does Grandma want?

Hello Gramma's girl, I am so sorry your family is being so torn apart by this awful disease. Mike is right, what does Gramma want?
Please write as often and as long a message as you want, that is what the forum is for. It sometimes help just to vent your feelings and frustrations. so go ahead!
If your family could all go together to the dr. with Gramma perhaps they could get some of the issues ironed out, no one would feel uninformed, and everyone would have the same information.
I hope you can get some help with these things families need to be together and support each other at tough times like this. Jane
 

Carol Deboer

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Hi there,

In the plight of adversity it seems that everyone should pull together. However, that is not always the case, sadly. You should all rejoice in the precious time you have left and enjoy her company and shower her with love and care. I know that sometimes these awful things will bring out the best, and the worst in people, even if they are your family and friends.Her wishes and needs are what is most important now and everyone around her should realize that. As Mike said, maybe you will have to be the advocate for your grandmother now. Fighting and bickering will only make things worse for all involved. Unfortunately, they will not realize what they have until she is gone. I really think that you should just be near her now and let her live her days the way "she" finds suit her best. Look into your Homecare System and VON and CCAC facilities and let them help you out. They really have a lot of help and answers to your problems. I wish you all the best, and remember that the Lord will help you when you need it the most. He does not let his children down. Take care, and keep us posted. Hugs to you.

Love, Carol

Stay Strong
 

gramma's girl

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Hi all, thanks again for all your replies and support. My mom and I are the only ones in the family who have asked Grandma what she wants to do and she has said that she wants to stay in her house, for financial reasons as well as comfort reasons. She has also told my uncles that, but they aren't going to let that happen, if it's up to them. My grandma has even told them that my mom is going to move in and be her full-time caregiver. But, because my mother also has a drinking problem, they have all said that there is no way they are going to let that happen. Soooo....I did some research and discovered that Grandma can give someone "Power of Attorney of Personal Care" and have that person take care of things when she's nolonger able to. At first I thought of my mom, but my uncles would fight like crazy if she did that. And then I thought "Well, HELLO!" Who the heck better to trust with that than me. I'm a personal care aide for a woman with MD, so I've got all the training and have a pretty good handle things (they can't argue with that), I am one of the very few in my family that doesn't drink at all (can't argue with that either), AND they can't say that I've talked Grandma into it because like I said before, I'm just the grand-daughter. So now all I have to do is swing it by Grandma, get the legalities straightened out and there we go! And as for being Grandma's voice....oh, I intend to! I have always been the quiet one in my very loud family so I plan on sticking to my quiet ways. I have a letter in the works right now and am just trying to put the finishing touches on it. I need it to be calm, rational, and somewhat professional in order for anyone to take me seriously, seen as they all still see me as the little girl. But I don't imagine I'll be too popular after they read it. Oh well, that's not my problem.
So anyways, here's another huge post. Ooops. So much for not talking much. :oops: Actually, it feels so good to finally be able to vent. There's so much frustration and anger right now and noone to talk to. I wouldn't dare load it onto my poor mom, who's trying to deal with the backlash of my uncles behaviour with my Grandma. And other than my brother, who's busy with his own stuff, there's not too many people that would understand. Anyways, I'm off to bed now. Thanks for listening. And thanks so much for your support. :)
 
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