Old 08-13-2004, 03:59 AM #1 (permalink)
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Default Where is everyone?

I am new to this forum myself. I checked at 3am and the counter said that I was the only member on site but 18 guests. Obviously someone is looking for information. I don't have much to offer just being diagnosed in Nov. 03. Still in pretty good shape they tell me. I know summer is a busy time and it is for me but I sill make time for the computer. I know it is hard for some PALS to do the computer thing but it is not impossible. Let's try to comunicate more and get this forum up to what it was originally designed for. I have talked on email with some people from here and they are some of the nicest people and most helpful people that you would ever want to meet. This forum needs to get back on its feet. Don't let ALS beat us. Let's beat it to death with knowledge and participation. An informed group is a group willing to venture into the unknown. We are into unknown territory with most of this disease but by keeping informed and staying in touch we just might be able to beat it. How bout it guys. You with us or too apathetic to give a shit anymore?
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Old 08-13-2004, 07:10 PM #2 (permalink)
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Hello Al. You absolutely right. The forum seems to have come to a crashing halt.
I too, hope it will return to a much more active site, and wonder if a chat room format would be more successful, as we could then just talk to each other.

I am pleased to hear you are doing well. my sister has als, diagnosed fall of /03. she is losing voice and speech rapidly, as well as use of arms and legs, although they are not going as fast as speech.

Fisher and T Bear where are you? Please post and keep in touch.
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Old 08-16-2004, 11:50 PM #3 (permalink)
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Hi Guys:

I was a caregiver for 4 years while my wife was striken with ALS. We lost her over 3 years ago. I have a perspective on how we dealt with ALS... which I've shared on occasion and I am still willing to impart my particularly twisted ideas. I'm sure that there are others who read the forum and will respond to specifics when they come up. For others, especially "Cals" and "Pals" its a matter of how much time they have available. In any sense I believe that people will step up when needed... keep the faith... we are still here!

Cheers!
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Old 08-24-2004, 02:23 PM #4 (permalink)
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heeeyyyyy, i'm here. Having a great summer regardless of weather.(lol)
Spent most of my days on the back deck bbqing and drinking beer. Every now and then I would look for a Dutch girl wearing a red string or a black leather bikini, but to no avail (LOL)
On a more serious note, I am progressing right on schedule (voice is pretty much gone ..... paralysis pretty much complete) but one good thing is that i have discovered a brand new way to sleep (transfusion chair) Any one having difficulty sleeping, I highly recommend them. Works great for me.
Time to go, sun is shining, beer is getting warm
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Old 08-27-2004, 12:26 PM #5 (permalink)
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Hey Fisher,

Sorry I dissappointed you this summer, but man, it has been cold. I had to wear a fur bikini for the first time! Ot course , it was made of beaver! We are just heading up to Port 'Franks right now for the weekend. We spent 4 weeks up there this summer. It was great. Henry had a wonderful time. We took his motorized lazy-boy up there and put it on the deck. It worked great for me. It was easier on my arms and back. However, I have great biceps now. Henry is following right on track too. Same as you. Hard to see, hard to live it too., Anyway, got to goget ready, got to go to the beer store and stop and get a bottle of Coli Albani for sunday dinner. Take care, and stay strong. Think of you often.

Carol D. xoxo
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Old 08-27-2004, 07:21 PM #6 (permalink)
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Hello, everyone.
Glad to see your names on the forum. Carol, so happy to see you back!
I would like to hear from anyone who has had their insurance (drugs etc) benefits cut off.
Sis was working under a collective agreement and was told by insurer that she had to apply for a general managers package because she no longer qualified as an employee since she was not working.
She filled out all paper work early as requested and waited, and waited ... was told coverage would cease July 31. Finally told on Aug 23 that she was turned down for managers package. You all know about the expenses faced by ALS patients.
If you have run into this please e mail me at janeowl@hotmail.com and let me know how you handled it. Were you able to get insurance reinstated and if so how. Any info would be greatly appreciated.
Thanks so much Jane
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Old 08-29-2004, 02:28 AM #7 (permalink)
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Hi, nice to meet everyone.
I have been trying to post for quite some time, and David (site administrator was wonderful in helping me this evening.) Although I do wonder what he is doing up at this hour. 2:00 a.m.
Thanks David!
I am wondering if others have had trouble posting, and that is why there are views and no posts?
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Old 08-29-2004, 08:31 PM #8 (permalink)
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OMG! OMG! laughing so hard at Carol's beaver NO NO NO I don't mean that ! I can't think straight :P :P

hope you had a good time at port franks, I'll bet Sunday was a downer


welcome back


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Old 08-30-2004, 07:08 PM #9 (permalink)
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Carol... nothing can ever be funny again. See Fisher... Carol wasn't missing. It's just that we were looking for a blonde in a black leather stringed bikini... possibly in red... when all along it was fur!
T.
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Old 09-03-2004, 01:01 PM #10 (permalink)
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Hi Al. I wrote to you in August on the email but I have been away again on holidays.
I was wondering how you were doing?
I agree with what you wrote, this is a site for support regardless of the reasons why anyone is here.
Lets keep this rolling.
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Old 09-03-2004, 01:10 PM #11 (permalink)
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Hi Al. I have been away quite a bit this summer, so I haven't been on. I sent you an email to home a while ago.
How are you doing these days?
You are right about this forum, everyone needs to support others. I am here to the rest of you for my own reasons, mainly for information as I know someone with this disorder.
I enjoy reading when I can peoples concerns.
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Old 09-05-2004, 01:03 AM #12 (permalink)
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Hi Carol Theresa Fisher and TBear. I've been away most of the summer too. Down to Oshkosh Wis. for the biggest and best airshow in the world in the last week of July first of Aug. Show runs for a week. Great if you like aircraft. Got to Muskoka for 2 weeks. Weather not great but livable. Losing some strength in my left hand and breathing is crappy. Winded walking even a short distance and if I carry any thing upstairs I really feel it. When I lay on my back it feels as if my lungs are collapsing. Really scary. Ok to sleep on my side though. Fisher could you tell me more about this transfusion chair? I was thinking about going skydiving. A friend sent me a song by Tim McGraw called Live today like you were dyin tomorrow. Kind of a neat song in our position. So this friend wants to take me skydiving. Just might do it. After all what's the worst that can happen. Hell I could be run over by a bus. Or get ALS. TBear some things can be funny again. Hang around here I'll get you laughing again. As long as the moderator doesn't censor me. Take care folks. I'm home for a bit so I'll be keping a watch on you. Al.
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Old 09-06-2004, 07:55 PM #13 (permalink)
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Hi Al, GO sky diving! Saw a 90 year old man who did on the news last week, you can too.
Summer has been busy sis needs more help but still gets around with a cane, walking is o.k. for short distances. Has been having a problem with gagging, not sure what that means. Will see about speech device soon.
Take care all and please post, this is a valuable resource and a place to let your hair down, lets keep it alive and very well. God Bless all Jane
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Old 09-06-2004, 07:56 PM #14 (permalink)
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Hi Al, GO sky diving! Saw a 90 year old man who did on the news last week, you can too.
Summer has been busy sis needs more help but still gets around with a cane, walking is o.k. for short distances. Has been having a problem with gagging, not sure what that means. Will see about speech device soon.
Take care all and please post, this is a valuable resource and a place to let your hair down, lets keep it alive and very well. God Bless all Jane
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Old 09-07-2004, 02:02 PM #15 (permalink)
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Al, tranfusion chair ; available from your equipment supplier. mine is a used one but is in good shape . they recline , tilt , elevate your feet, support your head and generally conform to your body . If you want to see one , try your local hospital . Good luck.
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