Hubby Len was diagnosed last Oct with ALS or Lou Gerhigs disease - a neuro muscular degeneration till the end.
We were in Vancouver last month and his breathing has gone down in a month and a half from 55% to 48% - which means he needs to get a feeding tube put in as soon as possible.
Went to the surgeon's yesterday, today we saw the anesthesiologist and did the pre-op and tomorrow is the surgery.  He doesn't need to use the feeding tube yet, but with the anesthetic it was urgent, so that it's there when the time comes. 

The neurologists think he'll be lucky if he has another year, year and a half to live.  And he's made peace with that.

I seem to be the one falling apart which is something new for me and maybe wrongfully, I'm putting the blame on these damn clusters.  Getting hit up to 5 times now a night.  My thinking about getting too old for them isn't working after a 5 year break.
The meds are working - verapamil and gabepentin so they haven't ramped up over a 6 so far.

Anyway......I'm wondering if you all could keep us in your thoughts and prayers for the next little while cause it's going to be a pretty bumpy road.
Thanks.

Gayle

All my family's love and prayers heading your way. [smiley=hug.gif]

Joe

Gayle I am so sorry to hear about your husbands diagnosis. It indeed will be a bumpy ride. You have my prayers coming up for you and your husband from way down south. :(

All the best I can send, Gayle. 

George

Sending all I can your way Gayle.  Candle lit, named for Len, may peace and comfort and some sense of reason and insight bless you and your family in these days and months to come.

Cat

Your in our thoughts and prayers!

GayleH wrote on Feb 10^th, 2010 at 11:57pm:

Anyway......I'm wondering if you all could keep us in your thoughts and prayers for the next little while cause it's going to be a pretty bumpy road. Thanks. Gayle

Absolutely Gayle, our thoughts and prayers are with you both! [smiley=hug.gif]

Prayers on the way from this corner of Canada, Gayle, for you and Len.

Hugs
Carol

I am so sorry.  Sending you peace and strength for the days to come.

Carolyn

I'm very sad to hear of your husband's illness. ALS is a devastating illness. My college roommate passed several years ago at a very young age from it. His wife has gone on to develop programs that are designed with you in mind Gayle. The one suffering ALS certainly is dealt a bad hand but the supporter is also faced with the need for support. Check out her website - their may be some programming that she offers - or even a conversation that could help. She's a very sweet person.

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Scott

Oh Gayle I'm so sorry, you're having a rotten time of it.
I hope you both have some good times in the very near future!
lots of love
Helen

Love and prayers.....

Jeannie

I am so sorry.  You are both in my prayers. 

-Dennis-

Gayle, that is  very hard DX to deal with, my heart goes out to both of you.
I imagine, if the shoe were on my foot, my husband and I would be making the very most of every minute we had, and, if a miracle occurred, well, we'd just keep on enjoying ourselves.
Please keep us posted, and, if he's healthy enough, book a cruise.........
Sending you good vibes and juju and miracle prayers,
and a big ole hug for you.....
Cathi

Hoping that our prayers can smooth out that bumpy road for you. 

So sorry that things have gotten so bad for you. You are in our thoughts as always.

Charlie

Praying.

Jerry

You all will be in our thoughts and prayers.  This is a very supportive group.  We'll be here sending positive thoughts and saying prayers.....holding you close in our hearts.

....and we will be there for you both on that bumpy road....prayers, thoughts, and vibes on the way...

Best,

Jon

Thinking of you and wishing you better times.

Thank you all for your kindness - I've seen what this place can do since I've been here for 9 years (even though I don't post much, I'm here every day).

All went well yesterday with the feeding tube now in place - he's a little tender today, but heck it's only a small hole.  He's lost a lot of muscle mass so his weight has gone down quite a bit - I pulled out a pair of his bigger, older shorts to give him.....and he got it - ya, ya, put my big boy pants on, eh.  Least he's still got a sense of humour.

And thanks too for thinking of me - guess I can expect emotional gas and let it pass.  Wherever I heard that it sounded so much better than holding farts in, letting them rise to end up as shitty ideas.

This place rocks!

Gayle.

Wow, I'm glad to see the sense of humor going forward. Not to be trite, but laughter is the best medicine sometimes. I'm sure you are helping him deal with the situation, and I hope you stay strong in your role. It must be very difficult.

God Bless.