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  1. Replies
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    Hi folks I hope you are well in this awful place...

    Hi folks I hope you are well in this awful place we find ourselves. I have recently received an update about the drug and if you read it you can understand the delay. I will reiterate what Dr. Jacobs...
  2. Thread: Ibudilast

    by Jer788
    Replies
    19
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    2,146

    Yes I do. Sorry for the late reply. Br Jerry x

    Yes I do. Sorry for the late reply.
    Br Jerry x
  3. Thread: Ibudilast

    by Jer788
    Replies
    19
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    2,146

    Hi Dina, I hope so too. I seem to be...

    Hi Dina, I hope so too. I seem to be deteriorating quite rapidly too. Stay positive though the words seem so empty to me from people who aren’t in the loop xxx Jerry
  4. Thread: Ibudilast

    by Jer788
    Replies
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    2,146

    Hi Olivia, as Andy says you just don’t know as...

    Hi Olivia, as Andy says you just don’t know as we’re all different and I haven’t been regular with it due to the nausea. I was also told by Ellie that you may need to be taking Riluzole also which I...
  5. Thread: Ibudilast

    by Jer788
    Replies
    19
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    2,146

    Hi Olivia, I started taking it before I came to...

    Hi Olivia, I started taking it before I came to the UK and have started again now but I’ll need to find something to counter the nausea first. Possibly just me, but taking morning and night I...
  6. [ Hi Kayleigh, yeah great to see the family...

    [


    Hi Kayleigh, yeah great to see the family and get settled in. I’ve contacted Evelyn at mndsouthlondon so will see what’s going on. I suppose the assistance thing is a tricky one for airlines...
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    Hi Kayleigh, yes I’ve contacted Yvonne with no...

    Hi Kayleigh, yes I’ve contacted Yvonne with no reply and tried to call but her phone is off. She could be on holiday and I wouldn’t blame her it’s freezing here xxx
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    Thanks Ellie you’re a star xxx

    Thanks Ellie you’re a star xxx
  9. Thanks Shrew, you’re telling me. When I was...

    Thanks Shrew, you’re telling me. When I was working I travelled a lot and didn’t mind it, now it’s just so bloody stressful.
    Thanks x
  10. Hi Debbie, thanks and yes I’m on it. Trying to...

    Hi Debbie, thanks and yes I’m on it. Trying to access an OT and the South London MNDA branch but we’ll get there. I intend to be a lot more active on the forum and also explore any clinical trials...
  11. Hi Kayleigh, and thanks for all the research re....

    Hi Kayleigh, and thanks for all the research re. wheelchairs and travel I’ll have to look at this though I have to say I’m not too adventurous regarding travel down here. My brother is looking after...
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    South London Branch

    Hi all, recently relocated to South London. Anyone have any contact details for the branch.
    Thanks Jerry
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    Hi there, anyone in London know where and when...

    Hi there, anyone in London know where and when they meet ?
    Thanks Jerry
  14. Hi

    Hi Kayleigh, I received the same knock back from 2 other people receiving this. They want to tell you how well theyíre doing but donít want to share any contact details as the charity cannot produce...
  15. Thread: Breathing

    by Jer788
    Replies
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    1,242

    Thanks Terry. It’s really the back of my throat...

    Thanks Terry. It’s really the back of my throat but feel chesty. Don’t have a strong enough cough unlike you.
    Best Jerry
  16. Thread: Breathing

    by Jer788
    Replies
    7
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    1,242

    Breathing

    Can anyone tell me what they take for shifting mucus off your chest. Iím not going home for 2 weeks.
    Thanks Jerry
  17. Replies
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    Good luck Daniel, rooting for it to be something...

    Good luck Daniel, rooting for it to be something else.
    Best wishes Jerry
  18. Replies
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    Hi Kev, so sorry to hear about your wifeís...

    Hi Kev, so sorry to hear about your wifeís condition. You are in the right place for advice and support these people on here are amazing.
    Stay positive Jerry
  19. Thread: Edaravone

    by Jer788
    Replies
    24
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    3,878

    Thank you so much you lovely people xxx

    Thank you so much you lovely people xxx
  20. Thread: Edaravone

    by Jer788
    Replies
    24
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    3,878

    Hi mate, I fly on the 25th April. I’ve splashed...

    Hi mate, I fly on the 25th April. I’ve splashed out on business class with BA so at least I’ll get a bit of a kip. A reluctant trip but I’m terrified of taking ill out here. The hospitals are more in...
  21. Thread: Edaravone

    by Jer788
    Replies
    24
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    3,878

    Hi Kayleigh, Debbie and Ellie, thanks for your...

    Hi Kayleigh, Debbie and Ellie, thanks for your kind concern. I’ve booked my flight with assistance, however with a different airline since flying back here last year. I have already registered with...
  22. Hi there, I’ve tried unsuccessfully to contact...

    Hi there, I’ve tried unsuccessfully to contact this company and people like you who use it with no reply other than one lady who reiterated what Ellie said that they have no supply.
    Regards Jerry
    ...
  23. Replies
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    Latest update folks. There is hope but as you...

    Latest update folks. There is hope but as you read below it is too much for some myself included at times. I suppose we just have to keep on fighting as long as you can bear it xxxx

    Zhittya...
  24. Thread: Edaravone

    by Jer788
    Replies
    24
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    3,878

    Hi Ellie, my wife wants me to stay here but ( I...

    Hi Ellie, my wife wants me to stay here but ( I am bricking it and she is very capable but if anything happened to her I have friends but nobody I would want to put in any position,) families etc....
  25. Thread: Edaravone

    by Jer788
    Replies
    24
    Views
    3,878

    Hi Kayleigh, sorry for the late reply, I’ve been...

    Hi Kayleigh, sorry for the late reply, I’ve been on and off the sit but hadn’t checked the Edaravone link. I’m not doing brilliantly tbh. Life as I’ve said on here if you’re not sick would be fine...
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