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Type: Posts; User: johnburton

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    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.
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    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....
  3. Thank you, all. I'll post updates.

    Thank you, all. I'll post updates.
  4. 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...
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    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...
  6. Thread: Wow

    by johnburton
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    1,185

    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,...
  7. Thread: Eye control

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

    That looks very interesting, Barry. Thanks for posting it.
    John
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    I'm sorry to hear that, Jonboy. I was impressed...

    I'm sorry to hear that, Jonboy. I was impressed with your MND facility.
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    I'm still independent, thankfully.

    I'm still independent, thankfully.
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    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...
  11. 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...
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    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,...
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    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.
  14. 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...
  15. 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...
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    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...
  17. Thread: ALS News

    by johnburton
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    1,239

    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
  18. Thread: Riluzole

    by johnburton
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    4,562

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

    Thank you for all the useful information, Jonboy. I shall look into Handimove.
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    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?
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    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...
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    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...
  23. Thread: Shoes

    by johnburton
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    2,822

    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...
  24. Thread: Genes

    by johnburton
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    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...
  25. Thread: Genes

    by johnburton
    Replies
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    1,589

    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...
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