Search:

Type: Posts; User: johnburton

Page 1 of 2 1 2

Search: Search took 0.10 seconds.

  1. Replies
    1
    Views
    226

    I have one of these chairs and find it very...

    I have one of these chairs and find it very comfortable.
  2. Replies
    7
    Views
    760

    For my wet room, I contacted a specialist...

    For my wet room, I contacted a specialist bathroom company in Henley, recommended by a neighbour. I too had little OT input, OTs being scarce where I live in West Berkshire. A year after it was done,...
  3. Replies
    9
    Views
    962

    Hi Lynne, I paid myself. I'm too old to be...

    Hi Lynne,
    I paid myself. I'm too old to be eligible for Motobility.
  4. Replies
    9
    Views
    962

    I have been driving with hand controls for about...

    I have been driving with hand controls for about a year, using a Volvo V40 automatic. They have worked really well. I have an accelerator ring attached to the front of the steering wheel and a brake...
  5. Replies
    201
    Views
    11,305

    We couldn't stop laughing after my partner tried...

    We couldn't stop laughing after my partner tried to put my undies on upside down! It's good that you can laugh at these situations, Ellie.
  6. Replies
    5
    Views
    936

    I'm past using a rollator now, but used one...

    I'm past using a rollator now, but used one happily for a year. I bought my own Topros, ending up with three of them. They are more solid and stable than many flimsier ones I see when out and about....
  7. Thank you, all. I'll post updates.

    Thank you, all. I'll post updates.
  8. I hope to get on the Phase 1 trial at the...

    I hope to get on the Phase 1 trial at the National Hospital for Neurology in central London. I was phoned by one of the doctors there yesterday. I plan to visit them in the next few weeks for an...
  9. Replies
    8
    Views
    1,258

    I use a transfer board for all transfers now. For...

    I use a transfer board for all transfers now. For the loo, I transfer to a shower chair, then propel myself to the loo and slide over it. I can drag my nether garments off, with some effort. But I...
  10. Thread: Wow

    by johnburton
    Replies
    4
    Views
    1,370

    Hi Doug, Rachel told me about her pending trip...

    Hi Doug,
    Rachel told me about her pending trip on my last visit to the JR. I too will miss her support. I've been following her and Catherine Dixon's progress for the past fortnight. As you say,...
  11. Thread: Eye control

    by johnburton
    Replies
    5
    Views
    1,380

    That looks very interesting, Barry. Thanks for...

    That looks very interesting, Barry. Thanks for posting it.
    John
  12. Replies
    4
    Views
    818

    I'm sorry to hear that, Jonboy. I was impressed...

    I'm sorry to hear that, Jonboy. I was impressed with your MND facility.
  13. Replies
    16
    Views
    3,795

    I'm still independent, thankfully.

    I'm still independent, thankfully.
  14. Replies
    16
    Views
    3,795

    I too faced a big decision after my diagnosis as...

    I too faced a big decision after my diagnosis as to whether to convert my house or move to a flat in a care home. I too live alone, but do have a nearby partner. After a great deal of thought and...
  15. Thanks for posting that, Doug. It's good to see...

    Thanks for posting that, Doug. It's good to see gene therapy making progress. I note that the eye watering price tag is reported to be half of what it would otherwise cost to care for someone with...
  16. Replies
    4
    Views
    1,598

    Hi Doug, I bought one from Stannah last year....

    Hi Doug,
    I bought one from Stannah last year. They are expensive, but have a very good service network, something that is essential. I am totally dependent on mine now. I did look at other firms,...
  17. Replies
    23
    Views
    4,520

    Hi jimbo, Thank you for posting that...

    Hi jimbo,
    Thank you for posting that reassurance. I'm sure a PEG has my name on it in a year or so's time.
  18. I went to the FathoM event in Oxford a few weeks...

    I went to the FathoM event in Oxford a few weeks ago. The lead researcher on the Sheffield SOD1 trial was there, with one of the trial participants. They conducted a conversation in front of the...
  19. I have a hospital bed provided by the NHS, but...

    I have a hospital bed provided by the NHS, but have enough power in my hands to operate the buttons. I have found a hospital bed that I could buy privately that uses infrared controls and so could be...
  20. Replies
    5
    Views
    1,215

    I too saw these programmes and found the result...

    I too saw these programmes and found the result rather sobering. For the trial to be regarded as a failure, when the trial showed clear benefits to some of the participants seemed short sighted. They...
  21. Thread: ALS News

    by johnburton
    Replies
    6
    Views
    1,280

    Hi Doug, I'll be going to the FaTHoM event in...

    Hi Doug,
    I'll be going to the FaTHoM event in Oxford on Tuesday, with my siblings. Will you be there?
    John
  22. Thread: Riluzole

    by johnburton
    Replies
    19
    Views
    4,931

    Thank you, Admin. My surgery said today that they...

    Thank you, Admin. My surgery said today that they have run out of generic riluzole, but are going to get some branded riluzole for me at around five times the price of the generic product.
  23. Replies
    11
    Views
    2,087

    Thank you for all the useful information, Jonboy....

    Thank you for all the useful information, Jonboy. I shall look into Handimove.
  24. Replies
    11
    Views
    2,087

    It looks pretty amazing. Can you tell us a bit...

    It looks pretty amazing. Can you tell us a bit more about it and how it works?
  25. Replies
    7
    Views
    1,175

    I too am taking part in the C9orf72 Cohort Study...

    I too am taking part in the C9orf72 Cohort Study and have paid two visits to the OHBA for all those tests. I am the one in my family with MND. My four younger siblings have also signed up and three...
Results 1 to 25 of 36
Page 1 of 2 1 2