Old 03-10-2009, 12:02 AM #1 (permalink)
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Default The "i appreciate bethu thread!"

There are many, many great members of this forum and I'd like to take this opportunity to single out one, Bethu, and say, "I appreciate you, Beth!"

I appreciate the way you tackle each obstacle that comes your way. If you're knocked down, by George, you simply find a way to get back up and I admire that. I am just one of your inspired fans. Blessings on you, Beth!

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Hey guys and gals, feel free to chime in!

Last edited by Zaphoon : 03-10-2009 at 12:04 AM Reason: added
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Old 03-10-2009, 12:39 AM #2 (permalink)
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yay! Beth- U are an inspiration!
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Old 03-10-2009, 01:27 AM #3 (permalink)
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I will join the Beth is wonderful thread. I think you are inspirational and radiate goodness through and through. But I will add, Beth don't hesitate to weep and not be strong when you feel the need for some support from us. Being strong and bouncing back can take its toll and we all need comfort at times.
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Old 03-10-2009, 01:37 AM #4 (permalink)
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Beth is a real trooper and a valued member.

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Old 03-10-2009, 03:19 AM #5 (permalink)
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Wow, thanks ! Really appreciate your support. Laurel, I've had plenty of downers the last couple of days. My neuro cut off my lability meds Friday, as the clinical trial was over. I am getting a stronger dose from a compounding pharmacy in San Diego, but have had every kind of meltdown possible yesterday and today: crying, screaming, and now (finally) laughing. I had to get someone else to take my husband to his neuro appointment, as I didn't dare go out in public like that ... and it's not too cool to try to drive in one of those states.

Big scary thing with the lability now is that my lungs stop working when I'm crying or screaming too hard. Very scary and panicky till they kick back in. So things are not quite as rosy as I may paint them! But I try ...love to reverybody.
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Old 03-10-2009, 09:25 AM #6 (permalink)
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Ditto on all that has been said here. We love you Beth, and you are on our minds and in our hearts! You are an inspiration to us all. xxxxxxx ooooooo
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Old 03-10-2009, 10:33 AM #7 (permalink)
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Default Beth,

You can count me in! ~ not only with how much I appreciate you, but also with the sentiment that you need not feel obligated to always be an upbeat and a sane voice on the forum. Its like a cyber family here, and we're ready to take the full spectrum Beth, not just the rosy and acidly cheerful colors.
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Old 03-10-2009, 10:50 AM #8 (permalink)
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Beth, regarding the lability, too bad you can't selectively pick the laughing part. Wishing you a great day today.
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Old 03-10-2009, 10:54 AM #9 (permalink)
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Default Count me in!

I am a HUGE fan of yours, Beth. I just look up to you for so many reasons: your kindness, wisdom, bravery and positive outlook are outstanding but you're also an amazingly talented artist which just blows me away! And then if that weren't enough you're also an animal lover which is just the icing on a pretty exceptional cake! Thanks for all the invaluable advice you have given me in the last few months. I honestly don't know even know how to thank you enough.

Zaphoon, great idea for starting this thread!
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Old 03-10-2009, 01:08 PM #10 (permalink)
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Wow again, and thanks so much for your support. Zaphoon, the check is in the mail.

I thought I had ranted plenty on this forum (see posts to Wright and BooBoo and about my husband's condition) but if you're tired of hearing me view life as a cosmic joke, here's a trailer for beth's upcoming attractions and a promise: I will DEFINITELY try to work more negativity into my posts. (A little sarcasm is always welcome, right?)

1) ALS sucks big time. In fact, there are days I say, "Thank God ALS is fatal." . This is not exactly breaking news about ALS, but we each have to discover this for ourselves.

2) To all the men who say, "Thank heavens for my wife," I'd like to know where you get one of those thingies. (By thingies, I mean wives. I'm not trying to take this in an indelicate direction, although things tend to drift that way on this forum, especially when I'm around.) Can these "wives" be ordered online? Can I get a "mommie" version, or do they only come in "long-suffering spouse"?

3) The two falls I had last week? They still hurt like hell. LIKE FREAKIN' HELL !

4) I've lost 4 more pounds since getting the PEG a couple weeks ago. My weight hasn't been this low since they took Preludin off the market. The tube doesn't work most of the time and I'm lucky to get one can of Ensure a day inside me instead of all over the bedspread. (I tube strawberry since the spills look so pretty on my white bedspread. I sometimes throw in a litle chocolate for the Jackson Pollock effect.)

5) It has taken me 4 (5 or 6?) months to get a working BiPap with proper settings. However, now that it works I think it is the greatest thing since the discovery of tobacco. Seriously. Tip for those who want to stop smoking: If you get a craving, take several deep, deep breaths like you are inhaling a smoke and the craving will often go away. (Of course, some smokers like Bill C. don't inhale. ) See the things you learn online? Anyway, the BiPap was a delightful surprise. I had planned to resist it with all my might. Guess that doesn't count as a rant. Sorry. I can't see a downside to BiPap.

6) Getting the DynaVox to work (after waiting since last July for it to be delivered) has taken four home service calls. The last one shorted out our whole phone line to the house. I have programmed in some appropriate remarks on the DynaVox for occasions when it shorts out the whole L.A. Basin, if not the whole Left Coast.

7) My latest lability symptom is standing in the kitchen screaming and pounding my fists on the counter. If there were some way to upload an audio tape on this forum, I'd show you how the pros do this rant business. Plus, I'm finally starting to get the laughing lability, too. This adds depth and character to my meltdowns. Guess that isn't really a rant, either, but work with me on this, folks. Cut me some slack, cause I have ALS.

8-10) Finally, I just happen to find life and humanity (including myself) very, very funny much of the time. That is how I cope. Despite this, I am very, very sorry that we are all going to die ... especially me ... but that would happen with or without ALS.

Conclusion. I don't know how many weeks/days/months you folks have left, but I don't have enough to squander any. I tend to enjoy life, when I'm not pounding the kitchen counter, slamming doors, and generally cussing out the world. (And actually, I kinda sorta enjoy those episodes, too.) Life is like a freeway: Sometimes you just have to flip the bird. (Other times you have to lie there and think of England.)

(Rose ... thanks for noticing the acid ! Very astute )

Let's all hang in there.
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Old 03-10-2009, 02:34 PM #11 (permalink)
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Beth,

I agree with the rest, you are a gem.
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Old 03-10-2009, 02:38 PM #12 (permalink)
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Well, after reading your last post my response is going to have to be much different than what I was going to say before reading it!

I am sorry you are having a bad few days, sincerely sorry!

I will disagree with you on a few points you have made.

#1. ALS is not fatal unless you want it to be. As research has shown, most PALS do not die from ALS symptoms, they die from other things like heart attacks.

#2. My wife does not suffer, I make sure she doesn't by being happy and always having things in place, for my care, before they are needed.

#5. This is a concern to me, why did it take so long to get your bipap setup right? It is very easy to adjust the settings and it should have only taken a couple of nights to find settings that were comfortable for you.

I will stop here and pray for you as you sound like you could benefit from it.

Oh, and yes, I have always enjoyed and benefited from your posts!
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Old 03-10-2009, 03:09 PM #13 (permalink)
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I have to chime in for kudos to BethU. When I started consulting "Dr. Google" regarding my Dad's now diagnosed ALS, I found several posts by BethU that were right on target with the questions I had spinning around in my head. So BethU actually brought me to this forum.

BethU, I am so sorry you have to be here and what you are going through but I appreciate the knowledge, humor and compassion in your posts. You rock!
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Old 03-10-2009, 03:18 PM #14 (permalink)
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On the brighter side of things Beth, you can still stand at the counter. Being able to pound is OK too. So is your glass half full or half empty.

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Old 03-10-2009, 03:54 PM #15 (permalink)
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Default I posted and didnt come up?

testing!
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