Old 11-04-2004, 10:56 AM #16 (permalink)
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Default Finally Got to Post

First take a deep breath. Every couple of sentences stop and take another one. It is hard but it does get easier. We've all been through it and even a year after being diagnosed depending what it is I'm talking about I can lose it. I try to keep up the brave face but for the first while you will lose it sometimes. Right now you are probably only talking to your friends and co-workers. I think they will understand that you are scared and no one will look down on you because you cry. And if they do they weren't really your friend. The more you talk about it the easier it gets. Call a friend from the group if you need to. We don't mind and talking to someone that is going through the same thing is easier than someont that doesn't really understand what a rollercoaster ride this is. Hope this helps. Anybody else got any ideas?
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Old 11-04-2004, 11:04 AM #17 (permalink)
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Hi Al,

I'm sure that this last one was meant to be sent somewhere else, but ended up here. Anyway, good luck with the sleep study and I hope you like being wired for sound.

Using the creatin might be good... especially if it means that you'll be able to hold a wine glass a bit longer! Take care

T.
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Old 11-04-2004, 11:11 AM #18 (permalink)
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Hi Elaine:

My mistake with Al's message, I missed the bottom of yours. One of the side effects of ALS is that your emotions seem to be at the surface... ie you can laugh uncontrollably at the most inane things and conversely cry over stuff that you used to handle normally. (Not that many people can handle this diagnosis) As Al said, take your time.... vent if you need to. You won't find any judges here... serveral certified nut cases who insist on jumping out of airplanes and the like... but no judges.

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Old 11-04-2004, 11:40 AM #19 (permalink)
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Thanks guys for your kind words. The support group really is a way to become stronger also the more you know about this disesae the better .
You don't feel so alone when you have someone to talk to.I've read all the posts and found so many good topics.Keep it up.
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Old 11-04-2004, 11:51 AM #20 (permalink)
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Hi TBear. Actually I did want my message after Elaine's but it ended up at the top of the next page as hers was at the bottom of page 1. Hadn't noticed that little anomoly before. I have been wired up before so other than checking the CO2 this will be nothing new.
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Old 11-04-2004, 02:09 PM #21 (permalink)
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Welcome Elaine.
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Old 11-04-2004, 02:30 PM #22 (permalink)
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Default Creatine Links for You...

MDA Answers Frequently Asked Questions About Creatine
http://www.mdausa.org/research/creatine.html

Creatine - Clinical Trial Results
http://cpmcnet.columbia.edu/dept/als...-research.html

Second Large Study Shows No Creatine Benefit in ALS
http://www.alsa-or.org/research/Creatine2.htm

Hope this helps...

M
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Old 11-04-2004, 05:59 PM #23 (permalink)
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Hello Everyone, glad to see all of you posting, you have so much info and support to give.
Fisher, congratulations! Nice to get such happy news!
Carol, my thoughts and prayers are with you and your family
Elaine, don't be upset about shedding tears, I think they help to relieve some of the inner turmoil you feel. People who love you will understand that you can't help it. Just do what helps you to get through each day, and remember there is always support and understanding for you here . Love Jane
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Old 11-05-2004, 03:06 PM #24 (permalink)
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Ok. Sent my daughter to GNC at Trinity Common Mall. Got the Mixed Vitamin E, the Creatin and figure I should be healthy in a few days. Can't hurt to try it. The other stuff doesn't seem to work. Had the sleep study and the Technician didn't come running into the room screaming " OH MY God You Need a Bipap" so I guess maybe I'm not as bad off as I thought. We'll see what Dr. Webster says when I see him. Hope everyone has a good if blustery weekend.
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Old 11-05-2004, 06:27 PM #25 (permalink)
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Glad you found GNC... hope it helps Al. Nothing I'd like better than to have a co-conspiritor to burn down that guy's house in France who first ID'd ALS. I've got all sorts of experience mapping out fires... just not very good at starting them. As a matter of fact I have a friend here who insists on lighting the barbeque as, apparently, I'm not very good at it!

Cheers and have a good weekend!
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Old 12-03-2004, 11:48 AM #26 (permalink)
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Default High Gamma Vitamin E

We recently found High Gamma Vitamin E Complete, mixed tocopherols-- at Walgreens Pharmacy in Spokane, WA, USA. The product is from Nature's Bounty in New York.
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