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  1. Replies
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    Painful Fingers

    The second and third fingers of both of my hands are curling into my palms. When I try to pull them straight I experience severe pain. Is this MND? Has anyone any knowledge of this affliction?
    ...
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    Hi Sarah I got my diagnosis in Sep 2010. I was...

    Hi Sarah

    I got my diagnosis in Sep 2010. I was on NIV by 2011 and using the machine nights only. I refused the PEG as I was able to eat normally. Then my appetite disappeared and I started losing...
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    Hi I have had my RIG for over a year now and...

    Hi

    I have had my RIG for over a year now and it has extended my life. I feed overnight by means of a special pump and i have not had any problems at all. I gained weight rapidly and felt a...
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    Part 2 Here are my notes on useful...

    Part 2

    Here are my notes on useful supplements. They are worth a careful read.

    Clive


    SUPPLEMENTS
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    I often wonder about Stephen Hawking. Has his MND...

    I often wonder about Stephen Hawking. Has his MND burnt out? Does he take something? He does not appear to publish anything about his condition.

    Clive
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    .I mentioned the possibility of remission in an...

    .I mentioned the possibility of remission in an earlier post. here is an article on the subject:

    Atypical Cases

    Walter G. Bradley, DM, FRCP, University of Miami, points out, "There are patients...
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    Hi John For some months I had difficulty...

    Hi John

    For some months I had difficulty transfering from bed to wheelchair, recliner chair, toilet etc. My left leg has been paralysed for more than two years, but we found ways round it. later i...
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    I was diagnosed with the ALS form of the disease...

    I was diagnosed with the ALS form of the disease in Sep 2010. Since then I have studied everything written about the disease and researched scientific papers on the subject. I have previously worked...
  9. Thread: swallowing

    by computatec
    Replies
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    5,562

    Bob may have left it too late, like me, for a...

    Bob may have left it too late, like me, for a PEG. If his breathing is weakening and his swallow too then he could have a RIG which is fitted from outside, using X Ray guidance. I have this tube, ...
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    Hi Max Can you tell us more about your DIY...

    Hi Max

    Can you tell us more about your DIY trial?

    Clive
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    Hi Lucy That looks very interesting. My toilet...

    Hi Lucy

    That looks very interesting. My toilet is a Geberit Aquaclean 8000.

    I will PMS my email addrees to you.

    Regards

    Clive
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    Hi Lucy I have been supplied with a Geberit...

    Hi Lucy

    I have been supplied with a Geberit toilet. It is an amazing piece of kit and I am very thankful for it. My problem now is that my strength is going in my arms and legs and it is becoming...
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    Hi iwontgivein, thanks for a very interesting...

    Hi iwontgivein, thanks for a very interesting link.

    Clive
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    I put the question to MND Connect and was very...

    I put the question to MND Connect and was very impressed with the answer. MND Connect spoke to both manufacturers and found out that the seat lifter has not been approved for use with the Gerberit...
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    Hi Nadine I have the same problem but do what...

    Hi Nadine

    I have the same problem but do what Pete suggested in #3 above. He has given the correct reason why we have the problem.

    Clive
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    Hi Caz I have MND and do not take Riluzole. My...

    Hi Caz

    I have MND and do not take Riluzole. My hair and finger nails grow rapidly with this disease.

    Clive
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    A cheaper alternative to the clos o mat is the...

    A cheaper alternative to the clos o mat is the Gerberit

    Clive
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    severe constipation is very common among...

    severe constipation is very common among patients. The various lifestyle changes forced on us plus the weakening of the diaphragm all contribute to this problem. The answer is MOVICOL. 1 Sachet every...
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    Hi Matt, Only stem cells converted from other...

    Hi Matt,

    Only stem cells converted from other cells in the body, known as induced stem cells, have a problem with rejection and so require imunosupressants. In this trial the stem cells were...
  20. Thread: PEG update

    by computatec
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    I had a RIG inserted 30 March at Addenbrookes...

    I had a RIG inserted 30 March at Addenbrookes hospital. A PEG is inserted from inside the stomach and a RIG is done from the outside. The procedure went very well and there have been no...
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    Closomat versus Geberit

    A hygene toilet has been ordered for me. I am told that it will be a Geberit and not a Closomat. As the next requirement will be a toilet seat raiser to help me on and off the thing, I need to find...
  22. Thread: MyMND

    by computatec
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    Hello Mellonius, thanks for a very interesting...

    Hello Mellonius, thanks for a very interesting post. Our destination is the same, but each individual journey is unique and how long it takes to get to there is impossible to predict. Modern medicine...
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    Hello Mads You are absolutely right about...

    Hello Mads

    You are absolutely right about goals and targets when you have this disaease. Go for the big goals now and learn to be content with smaller targets as the disease progresses. You must...
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    Hello Bob, Patients have a feeding tube fited...

    Hello Bob,

    Patients have a feeding tube fited (PEG, RIG) because they are losing weight and unable to take enough by mouth to maintain weight. The PEG does not cause the weight loss. I had a RIG...
  25. Hi Jane I think it means a Multi Disciplanary...

    Hi Jane

    I think it means a Multi Disciplanary Team, but not sure.

    Clive
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