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  1. Thread: Ibudilast

    by Mandy124
    Replies
    19
    Views
    2,775

    Hi All, Ibudilast tablets arrived from Japan...

    Hi All,
    Ibudilast tablets arrived from Japan this week without a problem at a cost of 650 for 1000 10mg tablets.
    At 60 mg a day I reckon thats almost 6 months worth so cost for a year is around...
  2. Thread: Ibudilast

    by Mandy124
    Replies
    19
    Views
    2,775

    Hi Vivek, Quite simply there is no easy way to...

    Hi Vivek,
    Quite simply there is no easy way to get Ibudilast in the UK
    There is a drug charity in Holland that will supply it if you get a DR to write a prescription, mu Neuro refuses to do so as...
  3. Thread: A bad day

    by Mandy124
    Replies
    15
    Views
    2,816

    Hi Polly, I know it seems a long while for the...

    Hi Polly,

    I know it seems a long while for the appointments to see people but it is quite swift which is also good because hopefully it means that were you live has a good mnd support system which...
  4. Replies
    29
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    3,952

    I think the health teams seem to take time to get...

    I think the health teams seem to take time to get in motion, have you had any of the mnda association visitors contact you as yet they are not in every region I'm afraid but here in Norfolk we have...
  5. Replies
    29
    Views
    3,952

    Hi Polly, My husband is also diagnosed with...

    Hi Polly,

    My husband is also diagnosed with bulbar onset mnd, he was a serious kind of man but know even though he has no voice left he can still make noises that resemble him laughing and...
  6. Replies
    15
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    2,307

    Hi Martha my husband has bulbar on set and has it...

    Hi Martha my husband has bulbar on set and has it for 2 years he finds paper and pen quicker for communication he has predictable on an iPad but finds it too slow. We were advised not to use straws...
  7. Replies
    8
    Views
    1,659

    We bank at First Direct and they are really first...

    We bank at First Direct and they are really first class, as my husband has bulbar mnd he has lost his voice and we have come up against this problem quite a bit with other companies but first direct...
  8. Replies
    22
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    3,104

    Thanks you everyone for your posts, Love Mandy.

    Thanks you everyone for your posts,

    Love Mandy.
  9. Replies
    22
    Views
    3,104

    My husband was given one of these plugs when he...

    My husband was given one of these plugs when he left hospital after the rig operation and as we have an hour and half drive to the hospital if anything goes wrong with it (dire warnings off getting...
  10. Replies
    22
    Views
    3,104

    Thanks Ellie and Terry very helpful as usual, we...

    Thanks Ellie and Terry very helpful as usual, we have the rig lady (not a nurse, we were told, lol) coming tomorrow to make sure all is well and to take the stitches out so will ask for a button one...
  11. Replies
    22
    Views
    3,104

    My husband uses the surgical tape too, there must...

    My husband uses the surgical tape too, there must be another way, we have looked on-line and they look quite bulky.
  12. Replies
    22
    Views
    3,104

    Rig tube security

    Just had a peg tube fitted and curious to know what others do with the dangly tube! Is there an easy and comfortable way to secure it out of the way which doesnt involve sticking plaster?
  13. Thread: Mirocals

    by Mandy124
    Replies
    14
    Views
    7,102

    Thanks for the link Ellie, will tell him about it...

    Thanks for the link Ellie, will tell him about it he may already know as he is always looking out for things about this and other trials he is looking to have his rig fitted at the end of the week...
  14. Replies
    13
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    3,317

    Hi Ellie Glad you are all enjoying your new...

    Hi Ellie

    Glad you are all enjoying your new home, merry christmas and new year,
    Mandy and Dave xx
  15. Replies
    3
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    1,398

    Thanks Ellie, We came away from the Drs with...

    Thanks Ellie,

    We came away from the Drs with antibiotics, more for a precaution than anything, she did all the checks and I suppose it is a matter of waiting for it to get better, he has had both...
  16. Replies
    3
    Views
    1,398

    Upper respiratory infection

    Hi,
    I have had such a sore for the past two days, my wife has had the same but for longer.
    I have tried paracetomol , saline nebuliser, Difflam all to no effect
    Its affecting my breathing and my...
  17. Replies
    23
    Views
    7,334

    Hi Tim and Mary, I have careers allowance and...

    Hi Tim and Mary,

    I have careers allowance and my husband has pip with part mobility, we have been lucky, we have a great neuro team which have been really pro-active on our part.

    Terry is right...
  18. Replies
    95
    Views
    19,328

    Hi Twinkle, My husband has lost his speech and...

    Hi Twinkle,

    My husband has lost his speech and has an ipad but as Terry said it can be a little slow so he has taken to using a boogie board which is like an etch a sketch if you can remember...
  19. Replies
    12
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    2,321

    Hi Hunter, I am sorry to hear of your diagnosis,...

    Hi Hunter,
    I am sorry to hear of your diagnosis, a year today my husband had his and we know how you feel but a year on things have calmed down even though our lives are different to where we were...
  20. Thread: Mirocals

    by Mandy124
    Replies
    14
    Views
    7,102

    My husband has just finished his 8th injection,...

    My husband has just finished his 8th injection, just before he started this round he told me that his swallowing felt better and I had noticed he finished eating his food faster, once even before I...
  21. Thread: Mirocals

    by Mandy124
    Replies
    14
    Views
    7,102

    Hi Ellie, The trial is randomised with a...

    Hi Ellie,

    The trial is randomised with a 50/50 chance of getting the medicine or the placebo, he gets reactions to each injection site and is ill with flu like symptoms right from the start so...
  22. Thread: Mirocals

    by Mandy124
    Replies
    14
    Views
    7,102

    Hi Jerry, My husband has been on this trial...

    Hi Jerry,

    My husband has been on this trial since last year you will have to go to the hospital and do some breathing, blood test's etc. to have a base line then if you meet the criteria you will...
  23. Replies
    12
    Views
    3,852

    Hi Murrjo, We are six moths down the road from...

    Hi Murrjo,

    We are six moths down the road from you, my husband was diagnosed with early onset bulbar last year and the world went into a tail spin but slowly things have settled down, the care...
  24. Replies
    4
    Views
    1,767

    Hi Karl, There is a national shortage unless...

    Hi Karl,

    There is a national shortage unless you pay for it, my husband had it at one of the larger Boots stores and paid privately for it,

    Mandy.
  25. Replies
    9
    Views
    4,041

    Games

    If it games you are looking for have you thought of magnetic board games or even making you own boards to either lay flat on tables or prop up for a better angle to play or even hang on the wall, on...
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