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Michael S

Member
Joined
Feb 12, 2008
Messages
17
Reason
CALS
Country
US
State
Alabama
City
Daphne
My name is Michael and I am a "lovegiver" to my wife Vicki who has been diagnosed with als on Sep 11, 2007. Vicki's spirits and attitude have ALWAYS been "through the roof POSITIVE and HAPPY", and for that I am totally greatful, because she is keeping me from being super depressed all of the time. I've watching her slowly deteriorate, and it tears my heart out. We had just moved to our retirement home in Daphne Alabama ("Roll Tide!), and had bearly begun to dig in and thrive here, when she got als. We LOVE to sing karaoke, which she still does, and I have recently realized that the best I can do for her in the entertain department, is "walks" and car rides...

Just yesterday her doc said she needs a wheelchair when she leaves the house, and a walker is ok, at home. We both have "medical directives" saying that we don't want artificial life support.

I guess what I'm really asking is, What can I expect with her disease? I've prayer to Jesus that he would just come take us both and be done with it... but I know that won't happen. My greatest fear is being left alone after she passes... and my present fear is that I'll do something wrong, that makes her pass... I don't where and how to get help for her when I can no longer care for her around the house... I don't even know what a "bipbap" is. When I heard that term I thought it may have been a Canadian "boombox" of some sort.

It's funny... Since we've been singing we've managed to make hundreds of new friends, and have developed a great social life... but the only one person I've ever really been able to totally relate to and love is my wife Vicki! I'd have to ask her if anyone even applauded after I got off stage... I never heard a THING! Vicki has to pick the songs she wants to hear me sing because I'm so out of touch in my own little world... She's been my one and only love for the past 45 years... and now she'll be taken away from me...

I have always believed that a person can do anything they "imagine"... and I can't even IMAGINE what I'll do without her. She 's been my entire "life". I'm constantly sick to my stomach just thinking about it. I drink quite heavily from 4 pm on to bedtime 1000, so I can forget about it for just that little while. I know that isn't good for either one of us... but I do it anyway... Once when I needed treatment for stress a doctor asked me if I would or could give up drinking. I said I would, and I did for six months,cold. I began social drinking once again, and when Vicki developed als, I've started all over again...

I've recently told our pastor that maybe for the very first time in my 62 years, I feel totally helpless... totally without hope of ever being happy again.

Folks can live a long while without the use of many limbs or even organs... but I've just never heard of anyone living without a heart... and when my Vicki passes away, she'll be taking my heart with her...

Has anyone out there ever felt that way? What a DUMB question, HUH? EVERYONE OUT THERE HAS... AND DOES!

I'm just "Brand New To This"
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Micheal. Welcome to the forum. I am sorry for what is happening to you and your wife. It is good that she remains upbeat - those who do cope better in the long run. And she may be around for a good long while! We have folks here who were DX's 8, 10, 15 years ago! So welcome, and don't feel shy about asking or posting any thought or question that comes to mind. Cindy
 

Lorie

Senior member
Joined
May 17, 2007
Messages
546
Reason
Loved one DX
Country
Uni
State
Alabama
City
Mobile
Michael S

I have Vicki's E-Mail address. Can I E-Mail you on it. We have E-Mailed a few times, she and I. I have lots of info for you. I didn't realize you she is your wife.

Lorie:-D
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hello Michael. Reading your post brought tears to my eyes. I do not want to leave the love of my life of 40 years. This is a very difficult disease to live with. Most of us live by the credo, One day at a time. It's not easy but it helps.
AL.
 

Michael S

Member
Joined
Feb 12, 2008
Messages
17
Reason
CALS
Country
US
State
Alabama
City
Daphne
Hi Lorie,
Sorry for the tardy reply. We had a few emergencies just yesterday. Vicki's feet were turning black so we rushed her to the doc... diagnosed was renodes Later in the evening. We had planned a cocktail party and she fell while trying to rush in her walker. It hurt her shoulder, when she awoke this morning she said she felt fine. I've told her 'no more cocktails'... I don't know what effect they have on her meds.
This past week her doc said "only in her wheelchair' when she's outside of the house, and the walker at home... This morning she said she wanted to be in the wheelchair at home too. We're going out tonight (in her chair) and I wondered if a cocktail or two would be ok... any thoughts
My e-mail address is and my cell phone number is Vicki said you live in Mobile? It's comforting knowing SOMEONE is close by. Thank you!

Mike
 
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Michael S

Member
Joined
Feb 12, 2008
Messages
17
Reason
CALS
Country
US
State
Alabama
City
Daphne
Hi Al...
My wife had to show me how to answer "comments". But I thought my message would just be directed to you... I still have a lot to learn, in many more ways than one I supposed. Vicki is out with her friends 'toll painting', and she's very pbeat this morning as usual. That's one thing I'll always miss... She's like sunshine for me. Thanks for the 'post'...

Michael S ( Mike )
 

Michael S

Member
Joined
Feb 12, 2008
Messages
17
Reason
CALS
Country
US
State
Alabama
City
Daphne
Thanks Cindy W,
I appreciate the kind words. ( FIRST DUMB QUESTION) I'm guessing that by 'posting' to you, that you shall be able to read my previous posts to others? WHOOPS! I just saw the "Post Reply" button... Does that one just send my answers to you alone?

Thanks,

Michael S (Mike)
 

ZenArcher

Senior member
Joined
Feb 22, 2007
Messages
672
Reason
PALS
Diagnosis
02/2007
Country
US
State
PA
City
McEwensville
Michael, the Post Reply button replies to the entire thread of discussions. Using that will add your comments to the bottom of the thread or chain for all to see and reply to. This is the normal mode of conversing on forums. If however you have information that you would rather be kept private there is the option of a Private Message or PM. You do not have access to this feature yet but it will become available as you continue to post.

In the meantime you'll just have to put up with all of us :-D
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
Hi Michael! I just came across your post. May God bless you and Vickie. Als is a nightmare alright! It destroyed my life when I learned that my son had it on March 29, 2006. I came to a dead stop, I didn't smile for a very long time. I had no desire to live. I didn't know what I was going to do without my son. Mine is a long story, but I am going to make it short. My son has since departed (June 3, 2007). I am just now beginning to get my life back, I feel like my heart has sort of mended, and I thank my Heavenly Father for putting me on the right track. It was really hard at first, I went through some hard times. As time goes by you will want to remain here on earth for your other loved ones. My son was called Home by our Father, and I very much respect that. I still miss him. I still make time for him, such as visiting his grave, take him flowers, a Teddy Bear, or a helium balloon for Valentine's Day, I take him a little something on every holiday. By doing that, it heals my wounds. I will be praying for you and Vickie. May God bless you both, and don't be a stranger, we would love to hear from you. God Bless! Feel free to ask me anything!

Irma
 

Michael S

Member
Joined
Feb 12, 2008
Messages
17
Reason
CALS
Country
US
State
Alabama
City
Daphne
JEFF BUDDY !
The MORE, the merrier... How do you do?

Mike
 

Michael S

Member
Joined
Feb 12, 2008
Messages
17
Reason
CALS
Country
US
State
Alabama
City
Daphne
Thank you Irma...
We (I) have my tougher days, that's for sure... but Vicki and I have always believed that whenever it comes our time, we'll just make room for the other's coming... That has always been a "flip" way to view it... but when you get down to the bare 'nitty gritty'... THAT's ALL we got ! When my dad died I rationalized it like this... We moved around, some when I was a kid. He & mom would take off for a weerk or so to check out the new town; and then come home with a plan... Dad & Mom are both gone now for quite awhile... and I expectin' a DOOZIE of a 'joint' when I get there...
It's just that... the TRUE reality of it all, has never yet smacked "MY FACE"... and, here it is, knockin' at our front door... We've BOTH prepared for this, a whole lifetime... but when you're YOUNG, a "whole lifetime" is FOREVER, away...
We're "hangin'" for the time being... and if the truth were known I think we're hoping for an early, and a peaceful, pain free conclusion... We've taken a lifetime to realize, the ONLY thing we've EACH ever really wanted, was each other... maybe NOW hopefully, our Lord will let us have eternity together... THAT'd be COOL !

Thanks... and Love!

Mike
 

ZenArcher

Senior member
Joined
Feb 22, 2007
Messages
672
Reason
PALS
Diagnosis
02/2007
Country
US
State
PA
City
McEwensville
I normally do pretty well until I get caught :)

Let me make one cautionary statement though. I wouldn't recommend posting your email or phone number directly to an unprotected web page. You have nothing to worry about from the people here but unfortunately everyone on the web is as "stand-up". If you must post your email, in the future do something like me[at]here[dot]com or me<removethis>@here.com. It isn't foolproof but stops a lot of the bots out there. If you are still able to edit the post with your email and phone number above I would highly recommend it. If not Al should be able to remove them for you.
 

Michael S

Member
Joined
Feb 12, 2008
Messages
17
Reason
CALS
Country
US
State
Alabama
City
Daphne
Jeff,
Yes I was concerned with that but I just didn't know how else to tell Lorie... How do I get in touch with Al to have it removed?

Thanks,
Mike:confused:
 

Michael S

Member
Joined
Feb 12, 2008
Messages
17
Reason
CALS
Country
US
State
Alabama
City
Daphne
Al If You're Out There !

PLEASE REMOVE MY RESPONSE TO LORIE, ABOVE, WITH MY E-MAIL AND TEL #

Thanks, Michael S
 

Michael S

Member
Joined
Feb 12, 2008
Messages
17
Reason
CALS
Country
US
State
Alabama
City
Daphne
Al,
I'm being barred from participating because of excessive posts, I'm directed to 'sign in' again... then I'm told I can't because of excessive posts... Am I caught in some sort of revolving door?

Thanks, Michael S
 
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