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  1. Thread: Meltdown

    by jonboy53
    Replies
    53
    Views
    8,100

    Mi bathroom is only 8 feet by 8 feet. It is...

    Mi bathroom is only 8 feet by 8 feet. It is upstairs so we steered away from a wetroom, wetrooms always leak. the sink is placed perfectly for a strp wash, and the Closomat Palma Vita washes my...
  2. Thread: Microbiome

    by jonboy53
    Replies
    5
    Views
    914

    Oh yeah doug, I took some broad spectrum...

    Oh yeah doug,

    I took some broad spectrum antibiotics for a month to kill bad stuff. Now I take acidophillus, bifidus and butyric acid everyday. I take 2 grams vit c, vitE , vit b12, laxido...
  3. Thread: Microbiome

    by jonboy53
    Replies
    5
    Views
    914

    thanksdoug -read loads on it and following a...

    thanksdoug -read loads on it and following a program
  4. Thread: Cbd

    by jonboy53
    Replies
    8
    Views
    1,803

    cant walk - cbd does not make me groggy I am...

    cant walk - cbd does not make me groggy

    I am addicted to Tramadol but it is the best painkiller. I don’t really care about the addiction because I am going to die anyway��
  5. Thread: Meltdown

    by jonboy53
    Replies
    53
    Views
    8,100

    thanks K

    thanks K
  6. Thread: Microbiome

    by jonboy53
    Replies
    5
    Views
    914

    Microbiome

    Has anyone else tried to maintain healthy gut microbiome?. My wife has adopted the same regimine as me over the last 9 months. She has returned to the same bodyweight she was when she was 30. My...
  7. Thread: Meltdown

    by jonboy53
    Replies
    53
    Views
    8,100

    My wife and I are going to get a carer in maybe...

    My wife and I are going to get a carer in maybe two days a week to give her a break. She is very small and I still weigh 80kg. I havve spent 」20,000 on a proper MND facility at home. I can go to the...
  8. Replies
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    2,380

    I read books whilst I still can. Watch Netflix....

    I read books whilst I still can. Watch Netflix. The more metaphysics I read about the less depressed I get.
  9. Replies
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    1,803

    It only took me a few days because I went self...

    It only took me a few days because I went self funded private
    - but I did get a second opinion from Ashwin Pinto.
  10. Thread: Cbd

    by jonboy53
    Replies
    8
    Views
    1,803

    capsules - sorry - one at bedtime

    capsules - sorry -
    one at bedtime
  11. Replies
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    1,753

    The peristalis is impaired and the core strength...

    The peristalis is impaired and the core strength formed by the abdominals and oblique muscles is weakened, As he disease progresses the transit time increases giving more time to produce gas. Nothing...
  12. Thread: Meltdown

    by jonboy53
    Replies
    53
    Views
    8,100

    thanks K

    thanks K
  13. Thread: Cbd

    by jonboy53
    Replies
    8
    Views
    1,803

    Cbd

    I take CBD to get a good nights kip.
    CBD brothers 16% 250mg - really expensive but works a treat
  14. Replies
    4
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    777

    It works a treat John, I can get to the loo...

    It works a treat John, I can get to the loo everyday and have a wash.
  15. Replies
    4
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    777

    I won’t type it all out - arms going - too...

    I won’t type it all out - arms going - too frustrating

    ask me questions if your guts are giving you problems
  16. Replies
    366
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    145,534

    thoughts and Prayers 👀😂

    thoughts and Prayers 👀😂
  17. Replies
    214
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    20,087

    cant type much - right arm exhausted now

    cant type much - right arm exhausted now
  18. Replies
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    20,087

    My home respiratory team would not let me have a...

    My home respiratory team would not let me have a Nippy - so I bought my own. My etCO2 is 45mmHg now so I use the nippy if I get headaches upon waking. Most ALS patients will get type two respitory...
  19. Replies
    4
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    777

    I have learnt loads with the help of my wife and...

    I have learnt loads with the help of my wife and manage things really well. No advice fom any NHS person.

    If anyone is struggling let me know I can probably help.
  20. Thread: Meltdown

    by jonboy53
    Replies
    53
    Views
    8,100

    No point now, very few are interested in what...

    No point now, very few are interested in what happens to us. I will be dead at Xmas
  21. Replies
    4
    Views
    777

    gastrointestinal dysfunction

    I thought I would share the information about managing gastrointestinal problems, that I have been given by my multidisciplinary team:
  22. Thread: Meltdown

    by jonboy53
    Replies
    53
    Views
    8,100

    I went into the hospice again to give my wife a...

    I went into the hospice again to give my wife a break. On the first night the active mattress was set too hard, and the alternating cycle was not working. The care assistants refused to change the...
  23. Replies
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    2,539

    what I am saying is all the OT’s I have met are...

    what I am saying is all the OT’s I have met are morons that know nothing about terminal illness - equipment - mangement of symptoms - realistic timescales, answering the phone, returning a...
  24. Replies
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    2,539

    I would not ask an OT anything now

    I would not ask an OT anything now
  25. Replies
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    2,020

    1000100110021003 The guy in the red shorts is me...

    1000100110021003 The guy in the red shorts is me age 38, I used to do weight training and this is linked to ALS, I am also an aerospace engineer which is another link.
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