Recent content by Shane the Pain

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    Still, even after ALS, at the mercy of a controlling women

    Hey Hangin' I've been playin this game for a while and I feel for ya brotha... I noticed that I am losing my ability to control my emotions and how it affects those around me. So I say hang in there brotha and pray to God for the strength you need ! Fight On, Shane the Pain
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    Very worried I have ALS

    Hey Trfogey, I guess you're having a bad day huh ? Remember when you didn't know how much fun that was ? Lighten up pal... Fight On, Shane the Pain
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    Pramipexole 22.5ml twice a day

    Dear ALS family and friends, A guy I know lives up in Long Beach CA area is taking this Pramipexole 22.5ml twice a day and he can't talk so good and his wife is his primary caregiver and doesn't have alot of time for fool questions from me... So I was wondering if any of you brainiacs knows...
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    Sorry to hear about your mom dear... it is tragic and very painful. I've been playing this game...

    Sorry to hear about your mom dear... it is tragic and very painful. I've been playing this game for a while now and losing function was the most emotionally upsetting. You need to lean on others and get their help. Just because idiots start talking about Jesus... doesn't mean it ain't a bad idea...
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    Shortness of breath/gasping for air

    Hi Lisa, I wasn't thrilled when I had to go on a breathing machine either. First we just did it at night but not too long after the body said we need it all the time. I've been on one for two and a half years now so this doesn't have to be the end for your mom unless she chooses not to use...
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    Letter writing Campaign to ALSA- join us!

    Hey Sequoia, You still didn't re-post the draft letter...I'm dien' over here ! You Go Girl ! Fight On, Shane
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    Let's all ask Biogen to Treat Us Now!

    Dear ALS patients friends and families, I really am not too worried about the drug companies getting sued by a dieing ALS patient ! What I am worried about is idiots worrying about this kind of crap rather than supporting the idea to Treat Us Now ! Personally I feel my time is very limited...
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    Treat Us Now

    Dear Fellow ALS Patients, Friends and Family, I think we really have a chance here to make change within FDA and the pharmaceutical companies. The premise is this: we know ALS is a killer so why not put drugs in the hands of patients Now... If you agree with this premise, please click the...
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    Dear NMarron, Do you have a support system, if not start to build that as you already need it...

    Dear NMarron, Do you have a support system, if not start to build that as you already need it. Reach out to MDA/ALS chapter(s) in your area to see what help they can be to you. They usually have loaner closets full of stuff and are happy to let you use it. When you feel the time is right...
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    Hospice Saying They Need Him at Facility!

    Hi CJ, I went and stayed at Hospice for a week to give my wife and kids a break. It was a good idea and I would do it again, however they really don't know much about ALS so I had my own caregivers coming every day. My caregivers kept me alive otherwise it would have been alot worse. Take...
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    Accelerate Drug availability....join us

    Hooray Hooray ! Lets go people...lets get this thing rockin' ! Sign up, get involved, this one deserves your attention and immediate support...now do it now ! please... Feels good to have some positive energy going our way. Fight On, Shane the Pain
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    Phase 2 trial yeilds encouraging results

    Hi Ya'll, I went to clinicaltrials.gov and found out that people like me on a VPAP machine 24/7 are not eligible for this drug trial ! Oh the horror ! So Sequoia I am willing to join your Pilot 1 program and I meet with your four requirements. If you need more information from me, send me a...
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    Hello, new to this forum.

    Hi Alador, I'm sorry to hear about your husband and don't know the answers about Bulbar that you are looking for. But i am jealous that you had so much time together ! It is my opinion that Rilutek is a waste and you should not bother taking it. I wish you and your husband the very best ...
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    A Newby on The Bus

    Hey Bill, Holy Shit Batman ! Sorry to hear it brother ! Survival gets down to the basics. We all need the following: Proper nutrition Proper oxygen Keep the body moving Get the BiPap asap and consider getting a feeding tube sooner than later. You can fight this thing and you can do things...
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    Advice-please..:-)

    Hi Deana, Sorry to hear about all your fun. My advice would be to not rush to take drugs, lots of times it just backfires as you already know. One of the most terrible things is the uncertainty...it took over two years for me to get a diagnosis and I even went to the Mayo clinic in Arizona...
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