New to Als

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karenmorrison

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Nov 25, 2004
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I am new to the ALS as I have met a wonderful man who was diagnosed approximately 2 years ago. He still walks not too badly with a cane, and can manage the stairs at my house. His voice seems to be the weakest. He does experience nightmares, and I am not sure if it is due to his medications. We are considering moving in together, and I truly am not sure what I am in for. I love him and want to be there for him, but worry that it is more than we will be able to handle. From what I have read, I believe the life expectancy is 5 years. Just looking for some support and hope to be able to learn more from this forum. Thank you in advance :?
 

TBear

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Nov 4, 2003
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Hi Karen:

You're right it's a big step. Most of us "caregivers" came by this naturally. What you can expect is that, you will become 50% partner and 50% nurse... with all the good and bad stuff that goes with that. I won't elaborate too much but... I looked afer my wife for 4 years and I remember, at the ripe old age of 48, that I was the only male I knew of who prayed for menopause to strike every month!
If you decide to do it... and there are lots of positive things that go along with that decision, there are a lot of people here who will help. All you have to do is ask!

T.
 

me

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Apr 26, 2004
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Karen - you've found the right group. There are a couple of others at your stage in the relationship. Also, several spouses as CALS and PALS. We've got a very mixed group but it is also a wise group. Hope you stop in regular. Melissa
 

Theresa2004

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Apr 14, 2004
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Hi Karen. This site is exploding. I agree with what Tbear said, most came across this naturally. If you go into the chat titled "Introductions" you will get a bio of a large portion of this group. I hear you loud and clear. I am not quite that far, but I wonder daily if I should walk away from my friend. Lately, he is really challenging me. You have to go with your feelings and gut. It is no easy road, but one which may give you ectasy and heart ache. But if you love him, then you know if you live with him and help, you have given a very special part of yourself to someone you love. But Tbear and Melissa are right, you will find a ton of support amongs the crazies.
You must log on your drink of preference so we can keep a running tally.
 

Theresa2004

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Apr 14, 2004
Messages
292
Karen I posted another reply from my inbox to you and forgot to mention there is not set place to tell us your drink of choice, any place will do. Once you have the chance to read some of the postings over time, you will see the great debate over red wine, one called "Fat Bastard", beer on a deck, and 100%proof rum, the recent introduction as Al is packing for Cuba. He will probably never return, we suspect Castro is waiting for him in the background! The forum has several goals; to speak your mind, ask for help, learn, post questions no matter what, however, when you arrive at the table, bring your sense of humour, and be prepared for all of ours. There are days I manage to read but can't post. But I laugh. You will meet an incredible group of people here, as I mentioned in our private post. Be prepared, we can get a bit nuts some days and it only helps us all.
 

Al

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Country
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Not to worry. Castro doesn't care about me. Had a talk with CSIS about him one time and they said I had nothing to worry about.
Don't forget to click on the General Chatter logo at the bottom of the page to see the other posts.
 

fisher

Member
Joined
May 3, 2004
Messages
18
hi Karen, this is Linda. we met the other day at dr. Strong's clinic.we hope all was reasonable. the only change in Jim was his voice [ losing it fast] be thankful for small things i suppose . we take everyday we can . some of our days can be quiet but most of them can be pretty good. LAUGHTER is the best medicine and these guys here will certainly make you laugh.

anyways, you guys be nice to karen and richard

jim says doesnt this weather suck! [longing for another day on the deck]

hope this finds everyone reasonable

see you all soon

fisher
 

Theresa2004

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Joined
Apr 14, 2004
Messages
292
Mike, that article almost did me in. It was full of truths, and fears that many of us are experiencing, especially those like Karen and myself, who are stuggling with how to perceive our future will be. Do we stay, do we go, can we handle it.? It gave me goose bumps and a few tears.

Fisher and Linda, nice to see you online again.

Any one have any opinions/comments about the article.
 
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