Search:

Type: Posts; User: johnburton

Page 1 of 2 1 2

Search: Search took 0.06 seconds.

  1. Thread: Wow

    by johnburton
    Replies
    4
    Views
    823

    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,...
  2. Thread: Eye control

    by johnburton
    Replies
    5
    Views
    854

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

    That looks very interesting, Barry. Thanks for posting it.
    John
  3. Replies
    4
    Views
    631

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

    I'm sorry to hear that, Jonboy. I was impressed with your MND facility.
  4. Replies
    16
    Views
    2,338

    I'm still independent, thankfully.

    I'm still independent, thankfully.
  5. Replies
    16
    Views
    2,338

    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...
  6. 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...
  7. Replies
    4
    Views
    1,079

    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,...
  8. Replies
    23
    Views
    3,904

    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.
  9. 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...
  10. 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...
  11. Replies
    5
    Views
    1,086

    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...
  12. Thread: ALS News

    by johnburton
    Replies
    6
    Views
    1,145

    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
  13. Thread: Riluzole

    by johnburton
    Replies
    19
    Views
    3,606

    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.
  14. Replies
    11
    Views
    1,877

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

    Thank you for all the useful information, Jonboy. I shall look into Handimove.
  15. Replies
    11
    Views
    1,877

    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?
  16. Replies
    7
    Views
    1,030

    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...
  17. Replies
    12
    Views
    2,150

    I suffer from cramp too, and was prescribed with...

    I suffer from cramp too, and was prescribed with quinine sulphate tablets. They certainly sorted the cramps, but made my tinnitus worse, so I've stopped taking them. I believe Baclofen is another...
  18. Thread: Shoes

    by johnburton
    Replies
    13
    Views
    2,632

    I have used an Orliman Boxia AFO for nearly a...

    I have used an Orliman Boxia AFO for nearly a year now and it has enabled me to walk with one drop foot. I started by using running shoes with it, as they are light and have plenty of lace points to...
  19. Thread: Genes

    by johnburton
    Replies
    9
    Views
    1,511

    Hi Lynne, I've not had any genetic counselling,...

    Hi Lynne, I've not had any genetic counselling, but it's irrelevant to me, being already diagnosed with MND. Four of my siblings are visiting the John Radcliffe later this month to be talked to as...
  20. Thread: Genes

    by johnburton
    Replies
    9
    Views
    1,511

    I am in a similar position with the C9orf72...

    I am in a similar position with the C9orf72 faulty gene and was diagnosed with MND last March. My mother died of MND about 30 years ago. I am the eldest of six siblings, some of whom have children...
  21. Replies
    22
    Views
    4,879

    I was given a 3 year licence without needing a...

    I was given a 3 year licence without needing a test, after being diagnosed in March 2018. I am still driving, now with hand controls, as MND has made operating foot pedals impractical. However, I'm...
  22. Replies
    21
    Views
    3,836

    Hi Annie, I'm living on my own and am in a...

    Hi Annie,
    I'm living on my own and am in a similar situation with weak legs but OK arms. I too need a rollator to get about outside. I have just had a lift installed which makes getting upstairs...
  23. Thread: Genetics

    by johnburton
    Replies
    6
    Views
    1,032

    Hi Chris, My mother died of MND 30 years ago and...

    Hi Chris,
    My mother died of MND 30 years ago and I was diagnosed in March this year. The MND Unit at the John Radcliffe in Oxford have identified my faulty gene as C9orf72, which they are sure I...
  24. Replies
    6
    Views
    1,342

    Invercare TDX Neuro

    NHS in West Berkshire are supplying me with an Invercare TDX Neuro towards the end of this year. I think it is one of the MDNA recommended ones. The chap from the wheelchair unit said that they...
  25. Replies
    7
    Views
    1,344

    Thank you all for your sympathy and responses. I...

    Thank you all for your sympathy and responses. I forgot to mention that one of my most valuable colleagues while I was still working got MND. He was determined to stay working as long as possible and...
Results 1 to 25 of 27
Page 1 of 2 1 2