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  1. Thread: Ibudilast

    by Jer788
    Replies
    24
    Views
    4,867

    Hi Mandy, how is the Ibudilast going. Iím having...

    Hi Mandy, how is the Ibudilast going. Iím having nausea problems again.
    Regards Jerry
  2. Replies
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    10,397

    Hi folks, a wee update on Zhittya. The project...

    Hi folks, a wee update on Zhittya. The project has relocated to Mexico where they hope to have some positive feedback in 3-4 months. They now have increased the infusion time from 3 to 6 weeks. I’m...
  3. Thread: Football

    by Jer788
    Replies
    31
    Views
    4,227

    Haha, sounds like everyone could get on...

    Haha, sounds like everyone could get on Gogglebox. This Freeview is good but repetitive and the commercials AGH.
    LOVE JERRY X
  4. Replies
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    627

    Thanks Debbie, it’s one of the reasons we’re...

    Thanks Debbie, it’s one of the reasons we’re moving. We’re currently on the 1st floor with no lift so I’m not eligible for a motorised wheelchair if I can’t bring it into the flat. Is also quite...
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    627

    Thanks Kayleigh I’ll have a look. Sorry I haven’t...

    Thanks Kayleigh I’ll have a look. Sorry I haven’t been on here much I don’t suppose I’m handling things very well on every front.
    Best Jerry xxx
  6. Replies
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    627

    Thanks Ellie, I will have a look at the sites. I...

    Thanks Ellie, I will have a look at the sites. I should have done this before but circumstances etc. Iím doing ok Ellie but have really deteriorated since returning to the UK. You sound like youíre...
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    627

    Central London flat swap

    Hi folks, my brother and I are looking to swap our 2 bedroom social housing dwelling for similar with lift access. All areas of London considered. We live in a fairly modern building and now need to...
  8. Thread: Rch4

    by Jer788
    Replies
    400
    Views
    102,597

    Doblett, you come across as a right nasty piece...

    Doblett, you come across as a right nasty piece of work. I hope the association block your toxic posts.
  9. Thread: Rch4

    by Jer788
    Replies
    400
    Views
    102,597

    I’m with you on that Kayleigh. The association is...

    I’m with you on that Kayleigh. The association is showing a very strange stance.
    Love Jerry x
  10. Replies
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    2,682

    Hi folks, I have to say I so admire you all. Your...

    Hi folks, I have to say I so admire you all. Your strength and acceptance of this bloody thing is amazing. Where would we be without hope and imagination. Jerry x
  11. Thread: Ibudilast

    by Jer788
    Replies
    24
    Views
    4,867

    Hi Ellie, no I donít know the reason yet only...

    Hi Ellie, no I donít know the reason yet only that theyíve seized it and have asked if HMRC have been in touch. Customs are funny. Last month they charged me £25 import duty on my Ibudilast but this...
  12. Thread: Ibudilast

    by Jer788
    Replies
    24
    Views
    4,867

    Hi Ellie, I’ve been on the Ibudilast now for...

    Hi Ellie, I’ve been on the Ibudilast now for about 3 months with Riluzole and I can’t see any benefits. I am still deteriorating quite rapidly but as other things we all take it’s difficult to...
  13. Thread: Rch4

    by Jer788
    Replies
    400
    Views
    102,597

    Well said Ellie, my sentiments exactly. Love...

    Well said Ellie, my sentiments exactly.
    Love Jerry x
  14. Donated & good luck. Jerry x

    Donated & good luck. Jerry x
  15. Thread: MNDA Charity

    by Jer788
    Replies
    12
    Views
    3,017

    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...
  16. Thread: MNDA Charity

    by Jer788
    Replies
    12
    Views
    3,017

    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...
  17. Replies
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    10,397

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

    Hi Chris, sorry mate I believe itís infusion over 3 weeks.
    Best Jerry
  18. Replies
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    10,397

    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....
  19. Replies
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    10,397

    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...
  20. Thread: Ibudilast

    by Jer788
    Replies
    24
    Views
    4,867

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

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

    by Jer788
    Replies
    24
    Views
    4,867

    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
  22. Thread: Ibudilast

    by Jer788
    Replies
    24
    Views
    4,867

    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...
  23. Thread: Ibudilast

    by Jer788
    Replies
    24
    Views
    4,867

    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...
  24. [ 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...
  25. Replies
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    2,124

    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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