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GayleH

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Whitehorse, Yukon, Canada
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I've shared this with some of you....
Feb 10^th, 2010 at 11:57pm

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

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: I've shared this with some of you.... Reply #1 - Feb 11^th, 2010 at 12:01am All my family's love and prayers heading your way. Joe
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Jimi CH.com Moderator CH.com Alumnus Offline Don't feed the moderators Posts: 4925 Madisonville, KY Gender:	Re: I've shared this with some of you.... Reply #2 - Feb 11^th, 2010 at 12:17am 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.
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George CH.com Moderator CH.com Alumnus Offline Black-Billed Magpie Posts: 8126 Boise, Idaho USA Gender:	Re: I've shared this with some of you.... Reply #3 - Feb 11^th, 2010 at 1:04am All the best I can send, Gayle. George
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catlind CH.com Moderator CH.com Alumnus Offline Surf's Up! Posts: 4536 Weaverville NC Gender:	Re: I've shared this with some of you.... Reply #4 - Feb 11^th, 2010 at 2:27am 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
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Happy Pappy CH.com Sponsor Offline Finer than frogs hair! Posts: 744 Ft Loudon, PA Gender:	Re: I've shared this with some of you.... Reply #5 - Feb 11^th, 2010 at 7:15am Your in our thoughts and prayers!
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Melissa CH.com Moderator CH.com Alumnus Offline Don't give up! Posts: 7238 Central WI, USA Gender:	Re: I've shared this with some of you.... Reply #6 - Feb 11^th, 2010 at 7:32am 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!
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Grandma_Sweet_Boy CH.com Alumnus Offline What Goes Around Comes Around! Posts: 4496 Georgetown,Ontario Gender:	Re: I've shared this with some of you.... Reply #7 - Feb 11^th, 2010 at 7:41am Prayers on the way from this corner of Canada, Gayle, for you and Len. Hugs Carol
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deltadarlin CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 3823 Downsville LA Gender:	Re: I've shared this with some of you.... Reply #8 - Feb 11^th, 2010 at 7:48am I am so sorry. Sending you peace and strength for the days to come. Carolyn
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seasonalboomer

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Re: I've shared this with some of you....
Reply #9 - Feb 11^th, 2010 at 8:25am

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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« Last Edit: Feb 11^th, 2010 at 8:25am by seasonalboomer »

Scott

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LeLimey Ex Member	Re: I've shared this with some of you.... Reply #10 - Feb 11^th, 2010 at 10:32am 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
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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: I've shared this with some of you.... Reply #11 - Feb 11^th, 2010 at 10:42am Love and prayers..... Jeannie
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DennisM1045 CH.com Alumnus Offline One wave at a time! Posts: 3437 Haverhill, Massachusetts, USA Gender:	Re: I've shared this with some of you.... Reply #12 - Feb 11^th, 2010 at 10:45am I am so sorry. You are both in my prayers. -Dennis-
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Cathi_Pierce

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Re: I've shared this with some of you....
Reply #13 - Feb 11^th, 2010 at 2:38pm

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

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Life is not measured by the number of breaths we take, but by the moments that take our breath away.

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Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: I've shared this with some of you.... Reply #14 - Feb 11^th, 2010 at 3:08pm Hoping that our prayers can smooth out that bumpy road for you.
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Charlie CH.com Alumnus Offline Happy to be here Posts: 18971 Jamestown, NY Gender:	Re: I've shared this with some of you.... Reply #15 - Feb 11^th, 2010 at 6:07pm So sorry that things have gotten so bad for you. You are in our thoughts as always. Charlie
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Callico CH.com Hall of Famer Offline Author of "Stranded at Romson's Lodge Posts: 4916 Aurora IL Gender:	Re: I've shared this with some of you.... Reply #16 - Feb 11^th, 2010 at 6:10pm Praying. Jerry
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Jackie CH.com Moderator CH.com Alumnus Offline Go For It!!! Posts: 5903 Goshen, IN Gender:	Re: I've shared this with some of you.... Reply #17 - Feb 11^th, 2010 at 6:23pm 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.
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jon019 CH.com Alumnus Offline "Ya gotta believe!" Posts: 1656 USA Gender:	Re: I've shared this with some of you.... Reply #18 - Feb 11^th, 2010 at 11:16pm ....and we will be there for you both on that bumpy road....prayers, thoughts, and vibes on the way... Best, Jon
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NancyB CH.com Veteran Offline I Love CH.com! Posts: 169	Re: I've shared this with some of you.... Reply #19 - Feb 12^th, 2010 at 9:42am Thinking of you and wishing you better times.
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GayleH

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Posts: 38
Whitehorse, Yukon, Canada
Gender: female

Re: I've shared this with some of you....
Reply #20 - Feb 12^th, 2010 at 3:19pm

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.

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KJ CH.com Alumnus Offline Posts: 596 Indianapolis, IN Gender:	Re: I've shared this with some of you.... Reply #21 - Feb 12^th, 2010 at 7:52pm 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.
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