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  1. Thread: MNDA Charity

    by Jer788
    Replies
    12
    Views
    1,833

    Hi Ellie, hope you’re well. What have you been up...

    Hi Ellie, hope you’re well. What have you been up to ? Ive been down to Maidstone to see the family. Saw the neurologist yesterday at UCL and back in Monday for a chat about a PEG and respiratory...
  2. Thread: MNDA Charity

    by Jer788
    Replies
    12
    Views
    1,833

    MNDA Charity

    Hi folks, Iíd just like to say thanks to everyone who donated to my Birthday Charity Fundraiser on Facebook. We managed to get £1855 over the week.
    It was a great effort and Iím happy to do this for...
  3. Replies
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    7,988

    Hi Chris, sorry mate I believe itís infusion over...

    Hi Chris, sorry mate I believe itís infusion over 3 weeks.
    Best Jerry
  4. Replies
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    Hi Kayleigh, good to hear from you, yeah it’s...

    Hi Kayleigh, good to hear from you, yeah it’s looking hopeful and it’s probably keeping us all going in a way. Haven’t been on for a while with one thing and another but I’ve packed in the Ibudilast....
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    7,988

    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...
  6. Thread: Ibudilast

    by Jer788
    Replies
    19
    Views
    2,769

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

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

    by Jer788
    Replies
    19
    Views
    2,769

    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
  8. Thread: Ibudilast

    by Jer788
    Replies
    19
    Views
    2,769

    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...
  9. Thread: Ibudilast

    by Jer788
    Replies
    19
    Views
    2,769

    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...
  10. [ 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
  12. Replies
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    Thanks Ellie you’re a star xxx

    Thanks Ellie you’re a star xxx
  13. 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
  14. 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...
  15. 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...
  16. Replies
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    South London Branch

    Hi all, recently relocated to South London. Anyone have any contact details for the branch.
    Thanks Jerry
  17. Replies
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    2,599

    Hi there, anyone in London know where and when...

    Hi there, anyone in London know where and when they meet ?
    Thanks Jerry
  18. 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...
  19. Thread: Breathing

    by Jer788
    Replies
    7
    Views
    1,427

    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
  20. Thread: Breathing

    by Jer788
    Replies
    7
    Views
    1,427

    Breathing

    Can anyone tell me what they take for shifting mucus off your chest. Iím not going home for 2 weeks.
    Thanks Jerry
  21. 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
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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
  23. Thread: Edaravone

    by Jer788
    Replies
    24
    Views
    4,163

    Thank you so much you lovely people xxx

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

    by Jer788
    Replies
    24
    Views
    4,163

    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...
  25. Thread: Edaravone

    by Jer788
    Replies
    24
    Views
    4,163

    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...
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