Brand new to this

[Michael S]

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]

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]

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]

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]

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... dx 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 [email] and my cell phone number is Vicki said you live in Mobile? It's comforting knowing SOMEONE is close by. Thank you!

Mike

[Michael S]

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]

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]

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]

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]

JEFF BUDDY !
The MORE, the merrier... How do you do???

Mike

[Michael S]

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]

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]

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]

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

Thanks, Michael S

[Michael S]

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

[Al]

Everything should be working for you. You're the first one I've heard of being told excessive posts. You should be able to PM but some of your posts may be moderated for a bit.
AL.

[Carolan]

Hi Michael,

I am sorry to read about your wife's diagnosis. This is indeed a cruel disease, and it is frightening because the progression can be so unpredictable. The upside is that you have time together to express how much you love each other. A lot of people don't get that opportunity because of sudden, unanticipated deaths from things like car accidents. Of course, I wish that none of us would come to a tragic end of any sort, but I do believe that ALS often gives us the chance to prepare for our mortality and truly cherish the time that we have with our loved ones.

Assuming that you live long after your wife's death (whenever that might be, which could be much further away than the "average"), you'll find other ways to add meaning to your life. My grandmother outlived her husband by almost two decades, and I was amazed by the ways that she grew as an individual after his death. She didn't think it was possible to have a fulfilling life without him, but she did so many wonderful things during that time. She never stopped loving him, though--she always celebrated his memory.

The most important thing right now, perhaps, is to remember that you are not alone. This forum is full of caring, compassionate people who will support you and your wife as you "pre-grieve" (as I sometimes call it). I also hope that you will give up--or at least scale back on--the alcohol, if for no other reason just so that you can really savor the time you have with your wife and help her when she needs assistance. Alcohol won't erase the pain, and it can intensify the depression that you might already be experiencing. That being said, I love a good glass of wine. :)

One other thing: Is there an ALS group in your area? It might also help to meet in person with others who are experiencing the same things that you are. This is not an easy disease, and the more support you can surround yourself with, the better.

[Michael S]

Lorie,
YES DEFINATELY... please e-mail me ! I'm beside myself !

[Michael S]

Thanks Carolan !
I have scaled way back on the "hooch", but mostly because I realized that it wasn't solving anything, really! I know there will be life after Vicki... I just can't imagine right now, just HOW!
Our friends here in south Alabama have all been wonderfully helpful and attentive to our needs, and I've begun to believe that our Lord brought us down here 3 years ago for just that reason... we never really had this sort of support "back home" in St. Louis. I'm going through no more, or no less than y'all have at some point... I know... but this is just like the worst nightmare I've ever experienced... everyone KNOWS that death will come... but no one ever believes it'll come to, THEM! This has been our "wake up call"... and like most "wake up calls"... it came WAY TOO EARLY, for us!
We've checked with everyone imaginable here, and there are NO support groups around here... The nurse at our church and a multitude of other folks have checked for us, as well... and the closest is a 4 hour drive north... Our church nurse wants to start one around... but after it's started, she wants ME to run it...! I'm a "basketcase" right NOW ! I don't see that happin' !
That is how we (Vicki & I) ended up here on the forum... and actually I believe it's much better for us in a LOT of ways! We can talk to anyone in the WORLD, on this forum... anytime, day, or night... we needn't even get dressed to go out.
Friends here have loaned the use of a drive-on wheelchair lift for our car, and an electric wheelchair which we are getting today... so I guess I'll be going to get it now...

Thank you for the kind words

Michael S (Mike)

[hopingforthebest]

Hi Michael

Your post made me cry but then again lately everything makes me cry.

My George was diagnosed Nov.07 with PMA. They tell us that we are "fortunate" as this type of ALS has a longer survival rate. His ALS affects from waist up and legs are still ok, thank God.

Have no advise for you but glad you are "connected" as you mentioned your pastor. That is our life line.

We too had just retired to S. Jersey by the shore, by the kids, grandkids when this all started.

My husband says, IF YOU WANT TO MAKE GOD LAUGH, TELL HIM "YOUR PLANS" FOR THE FUTURE. We just never know but one thing WE know for sure is where we are going from here! Amen?

Take care. Your wife is so blessed to have you! My best to you both.


Patty:)

[Sandee]

My dearest friend was diagnosed with ALS just last week and I have done nothing but cried since learning the news. He is a great friend to me and is encouraging me right now when it should be the other way around but I don't know what to do. All I know is that I don't want our friendship to end in 18 months. Is there any hope at all against this disease. I hope I'm not coming off as being negative because I'm not a negative person but am just very sad today. Any help is appreciated!

thank you,

Sandee

[Al]

Hi Sandee. I've been here 4 years. 18 months is not cast in stone. There is great hope for Lithium. It is not all bad. Take one day at a time.
AL.