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Thread: The daily dribble

  1. #101
    Springtime
    Guest
    Hi Joycie,
    Good to see you back on here, you have been missed. So pleased you are all done and dusted so something else you can put behind you and knowing you I am sure you will be making plans to go to various places and see lots of people. Take Care Lovely Lady. xxx

  2. #102
    mik
    Guest
    Does anybody know what the MNDA are doing or have done with the ice bucket challenge windfall?
    a relative of mine who's whole immediate family donated has asked as they said nothing else has been seen nor heard of since?
    mik

  3. #103
    Andrew
    Guest
    Quote Originally Posted by mik View Post
    Does anybody know what the MNDA are doing or have done with the ice bucket challenge windfall?
    a relative of mine who's whole immediate family donated has asked as they said nothing else has been seen nor heard of since?
    mik
    Hi Mik,

    I'm afraid I can't give you a definite date but I know that the Association hopes to let supporters know how some of the money will be spent next month. It was shaped largely by the survey that went out to members and also any decision has to be signed off by the board (which from experience can take a while).

    You haven't missed anything and I'll post all updates on here too, of course.

    Hope that helps.

    Best wishes,

    Andrew

  4. #104
    Ciaramcmc
    Guest
    Hi there, just a wee moan! I hate having to make calls to talk to people that I've never met about the most personal of things. I find myself putting it off and then feeling bad that I'm not on top of things. On the up side - it's almost 12.30am and I'm in bed. Earliest since November! Really should have just tried to sleep but it's good to catch up with all that's going on here. I'll do better tomorrow. The new positive me is going to start my calls straight after I leave the boys to school.

    CiaraX

  5. #105
    Trevorhb
    Guest
    Spent the night at Papworth RSSC for breathing assessment and to try a new drug for the drooling.

  6. #106
    mik
    Guest
    hi trevor,
    hope all goes well, or as well as it can. thanks for being a guinea pig, hope you get the benefit.
    mik

  7. #107
    Trevorhb
    Guest
    Thanks Mik, I am up and about waiting for the results from last night. Hope to be discharged by midday.

  8. #108
    joed
    Guest
    Morning Trevor

    hope all went well and you got a half decent nights sleep funnily enough I have just been looking on the research pages on here and wondering about whether to volunteer for trials or not , I expect its a lot more involved than I imagine , hope your results help you take care.

    jo xxx

  9. #109
    ccinjersey
    Guest
    Good Morning Joed, All

    I just want to say something about giving a drug trial a go. A while back John PM about the drug GM6 drug stating it was here starting clinical studies and maybe something for my dear friend to look into. I did the research and it turned out her neurologist in NYC was heading up a study for it.

    I contacted the doctor’s nurse regarding the study. She pulled my friend's chart, and told me it looked like she would be a good candidate for the study, but she needed to be seen by doctor again to be reevaluated. When I told my friend all about it she wanted no part of it.

    A drug that there is now the petition to try and fast forward it to make it within reach for all, was right in her hand. Who knows how much she could have benefited from it today! In my opinion if you have the opportunity to try something you think might benefit you, give it a go!! Nothing to lose. What’s experimental today becomes routine tomorrow.

    Lets hope GM6 proves to be something that really works for all

  10. #110
    Trevorhb
    Guest
    We thought we would be coming home today, but no. The consultant wants me to stay at least one more night so they can get the dose right with the drug which hopefully will finally control my drooling. The sleep study found my CO2 level at night is quite good, so no pressure to use the Nippy for long periods. They are certainly going all out to help me at Papworth, they do seem to have an understanding of M N D.

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