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Type: Posts; User: Chrisp

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  1. Replies
    36
    Views
    14,907

    Hello Good luck and report on the progress of...

    Hello
    Good luck and report on the progress of the medication. Is it a tablet or infusion etc?
    Chris
  2. Thread: FMT program

    by Chrisp
    Replies
    8
    Views
    2,942

    Hello Keep us updated on your progress. Good...

    Hello
    Keep us updated on your progress. Good luck
    Chris
  3. Replies
    2
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    4,379

    Hello On another thread Italy is prescribing it...

    Hello
    On another thread Italy is prescribing it for ALS patients
    Chris
  4. Thread: PEG and RIG

    by Chrisp
    Replies
    152
    Views
    30,591

    Hello I have a RIGG fitted and the week after it...

    Hello
    I have a RIGG fitted and the week after it is replaced I get bowel problems. My wife says it is because I have a sensitive stomach
    Chris
  5. Replies
    4
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    4,992

    Benefits from the State

    Hello

    When I was diagnosed with MND when I was 50, I took my occupational pension monthly (instead of a lump sum). I now get PIP and Mobility allowance (both higher rate). My wife gets carers...
  6. Thread: Rch4

    by Chrisp
    Replies
    400
    Views
    122,717

    Closed: Hello Why has no Country licenced RCh4? If they...

    Hello
    Why has no Country licenced RCh4? If they trialled it then all the discussions would end and we will have a definitive answer to Rch4 and MND?

    Chris
  7. Replies
    37
    Views
    10,524

    Hello I was diagnosed in April 2017. I could...

    Hello
    I was diagnosed in April 2017. I could walk and use my left hand. Now I am confided to a wheelchair, my left hand is not functioning and I have lost my voice.
    Chris
  8. Thread: Voice Banking

    by Chrisp
    Replies
    21
    Views
    7,682

    Hello Do voice banking as soon as possible, I...

    Hello
    Do voice banking as soon as possible, I left to late. The speech therapist should be organising the voice banking.
    Chris
  9. Thread: Rch4

    by Chrisp
    Replies
    400
    Views
    122,717

    Closed: Hello Let's hope Sheffield University find a...

    Hello
    Let's hope Sheffield University find a cure with gene therapy
    Chris
  10. Thread: Rch4

    by Chrisp
    Replies
    400
    Views
    122,717

    Closed: Hello Are they any plans for Rch4 to be trialled...

    Hello
    Are they any plans for Rch4 to be trialled in the UK?
    Chris
  11. Thread: Mri

    by Chrisp
    Replies
    10
    Views
    3,965

    Hello I was diagnosed with MND in Italy and as...

    Hello
    I was diagnosed with MND in Italy and as part of the diagnosis I had several MRI scans (Brain, neck etc). When we returned to the UK there have been no MRI scans.

    I had conductivity tests,...
  12. Thread: Rch4

    by Chrisp
    Replies
    400
    Views
    122,717

    Closed: Hello Why isn't Rch4 available on the NHS?

    Hello
    Why isn't Rch4 available on the NHS?
  13. Replies
    19
    Views
    9,134

    Electric wheelchair

    Hello
    I have been waiting over four months for an assessment for a electric wheelchair and I getting frustrated at not going outside and around the village. So I went on eBay and got a road...
  14. Thread: GridPad

    by Chrisp
    Replies
    3
    Views
    5,699

    GridPad

    Hello
    Recently I received a GridPad with a mouse that uses a dot on my forehead and a clicker button. It works well and I can access the Internet very easily.
    The software which it came with was...
  15. Replies
    60
    Views
    29,201

    Hi, As well as climbing I was a kayaker, skier...

    Hi,
    As well as climbing I was a kayaker, skier and cyclist. I still cycle as it helps my dominant leg which is now deteriorating (foot drop etc).
  16. Replies
    60
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    29,201

    Hi, I had a similar start to MND, the doctor...

    Hi,
    I had a similar start to MND, the doctor first diagnosed tendonitus in my dominant hand, then carpel tunnel syndrome. The hospital operated on my thumb, thinking it was a pulley problem (I...
  17. Thread: Riluzole

    by Chrisp
    Replies
    53
    Views
    32,217

    Does anyone take supplements when they are on...

    Does anyone take supplements when they are on Riluzole? The consultant looked horified when we explained that prior to the Riluzole I had been taking AAKG tablets, Coenzyme Q-10 and 5-HTP (the last...
  18. Thread: Riluzole

    by Chrisp
    Replies
    53
    Views
    32,217

    Riluzole

    Hello,
    Starting taking Riluzole tomorrow morning the consultant has prescribed the following:
    Week one, one tablet in the morning
    Week two onwards, one tablet in the morning and one in the...
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