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Thread: MyMND

  1. #1
    Forum Member
    Join Date
    Apr 2012
    Cardiff, but English - from Devon!


    I felt I wanted to write down my MND experience so far - it helps me, if it bores everyone else! I was diagnosed on the 12 March 2012 but I was not devasted or shattered because I had done enough research of my own on the web to have diagnosed myself already - the Consultant was only confirming what I knew anyhow. Indeed, I rather resented the uncomfortable NCS/EMG and MRI tests undertaken to confirm the diagnosis. Nobody in the family has reacted in a negative way, [it may be a sort of denial], but there are no long faces - we are continuing to act and behave as if the diagnosis had not been made - everybody behaves and does what they did before and expects me to do the same too! ['if you can't use your left hand, use your right!']. And so do I. And we are not moving into more manageable accommodation. So, I am trying to do everything I did before. Not always easy - I had to wear a tie for a lunch today, and it took me about 20 minutes to put it on - but while I feel I can, I think I should. I have a bath chair [which I do use, else I would smell], but I have a stairlift and a wheelchair coming Friday, and everyone says 'walk up the stairs while you can', and 'walk round Morrisons, even if it takes an hour when using a chair would take 5 minutes'. The approach seems to be working in that I feel positive whilst being realistic. I also make sure I have something planned for each day, so that I wake up with an agenda for the day, and some future planned event to look forward, even if when the time comes I can't or won't be able to go. Recently, the days events have been a rather heavy burden of MND associated appointments tho - appointments on 9 of the last 9 days! [six Vit B12 injections; Consultant to prescribe Riluzole; Consultant to review Riluzole; Physiotherapist [twice] for a foot brace and stick, Driving Assessment [scary taking a driving test again but ok providing I use an automatic] and so on. But short term I am going to a party Saturday long term - there is baby expected in the family in November.
    I knew nothing about MND until I was diagnosed, scarecley knew what the letters stood for and had never met anyone with the disease. So the Forum is the perfect way to learn how others are living with MND.

  2. #2
    Forum Member pete's Avatar
    Join Date
    Oct 2011
    South Staffs
    Hi mellonius,

    What a great thread you have begun, Much like yourself, I face everyday as if it was just as before , and dealing with the things you cant do with ease now ,just takes a little longer but who cares, as long as you can still do them, My first symptoms where in 2008 and remember them as if they where yesterday, Four years on and things have changed for me and the family, but still we keep pretty much as we can to normal day to day things , It has been my priviledge to meet some truly incredible Human beings on this forum and talk about how they face the MND on a daily Basis , and still keep positive both carers and patients alike , So I for one do not find your post in the least boreing , it makes me feel as if my outlook isnt a million miles from others in the same situation, As for driving its my passion so as long as i can i will, and Yes the forthcoming Birth ,Well for us now four months on our Grand child Abbee makes it all the more worth while , Good luck with the driving test and wish you well.

    All I need is a miracle

  3. #3
    Forum Member ColinF's Avatar
    Join Date
    Mar 2012
    Hi Mellonius, my view is that until the medics can do something about my condition I see no reason to take a break from getting on with life. In fact it's a bonus as its making me do things I wouldn't have done otherwise. Of course I've had to sell my beautiful yacht and my garage is full of light weight racing bicycles I can no longer use but sometimes you just have to move on.

    Now, I wonder if they do a carbon fibre wheelchair that folds away and takes C700 racing tyres? (I've a few in the garage that need using).
    Before you criticize somebody, you should walk a mile in their shoes. That way, when you criticize them, you are a mile away from them and you have their shoes....(Jack Handey)

  4. #4
    Forum Member computatec's Avatar
    Join Date
    Dec 2010
    Welwyn Garden City, Hertfordshire
    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 is based on statistical evidence, so you will see “3 to 5 years from diagnosis” quoted. Churchill put it very well when he said “There are lies, damn lies and there are statistics” Treat any forecast of how much time you have left with the scorn it deserves, because no-one knows how much that will be for you. If you allow thoughts about this into your mind they could become a self-fulfilling prophecy, so stand guard at the gateway to your mind.
    As you probably already know, there is no lab or blood test to confirm you have MND. The diagnosis is entirely clinical. There is now a protocol for diagnosis, which seems to have been followed in your case. Part of this seeks to eliminate several other diseases that mimic MND and this is why the EMG, MRI, blood tests, Chest X Ray and respiratory function tests are carried out. After all this testing, if no other conditions have been found, it is most likely that you have MND. At this point an independent second opinion is usually offered.
    I have had to give up driving my automatic recently due to MND messing with my brain, affecting decision processing and short term memory. I don’t think this is a very common problem.
    I take no medication at all now, but I have been experimenting with supplements. I was immediately drawn to your Vit B12 injections! Have you had blood tests to check your vitamin levels? I am taking B12 in a chewable tablet form.
    Living with MND. There is a solution to every problem - never ever give up.

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