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Thread: newbie with mnd

  1. #11
    Forum Member Barry52's Avatar
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    Hi Mick,

    I see you’re an adventurer like me. My last fishing trip was to Anglesey last year and my two companions secured me and my wheelchair to the boat deck. My fond memory of a fishing trip off the southwest coast of Ireland was back in the late 80’s following a hot summer like we are having now. 8 anglers caught 27 blue sharks and my personal tally was 6. All were released alive and well. We made headlines in the local newspaper and the skipper had full bookings for the next year.

    As we say I wish you tight lines and fair weather.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  2. #12
    Forum Member Ellie's Avatar
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    Hi Mick & welcome to the Forum.

    Sorry about your diagnosis - it knocks one for six, that's for sure.

    Although it won't really seem so to you, you're doing well to be still riding your beloved bike more than 15 months after you had symptoms - I hope your progression stays slow.

    You're right to make those holiday plans - 4 weeks in Oz sounds wicked. I hope it's sea fishing you're coming to Ireland for - river levels are low, but maybe that's better for fishing?? I'd do a rain dance if I could

    Wishing you safe & happy biking.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  3. #13
    Forum Member Mick1800's Avatar
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    Thanks guys, its actually course fishing that I do and im staying with a lovely guy called Steve who setup
    a B&B for anglers last year in Co Leitrim. All we need is more cloud cover and a bit more rain which
    will help the fishing no end. ;-)

    Yeah not sure how much longer I will be able to ride, but im planning on getting out on the bike as
    much as possible before having to call it a day.

  4. #14
    Forum Member Terry's Avatar
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    Hi mick;

    I was never into drowning worms but loved riding motor bikes.

    I rode for just over two years after my first signs of Mnd but did drop the CBR a couple of times when stopping and stopped because my legs would not be in the right position. Once I learnt not to hover my feet just over the ground and stop if going very slow I was OK.

    Keep it up as long as possible Mick and stop drowning the worms.

    Love Terry
    Last edited by Terry; 23rd July 2018 at 17:20.

  5. #15
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    Hi Mick stay positive and live life to the max ,I am off to Ireland fishing next week ( fly ) I can't wade anymore but boat fish instead ( my legs are shot but arms ok ish) how is your voice ? Take a Look at voice banking ask your speech therapist about it and get it done at an early stage I banked my voice but it's not " ME" as I had lost a fair bit by the time I got around to banking
    Tony

  6. #16
    Forum Member Mick1800's Avatar
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    Im ok with my legs on the bike Terry, its mainly my arms at the minute and a bit in the hands, I was out with
    a mate about 3 weeks ago and managed a good 100 plus mile run. We have a Club meeting up near
    Scarborough on August bank holiday weekend, so hoping to get there with the wife on the bike if I can find
    room for my nippy, if not the wife will take the car and I will go on the bike.

    Got to drown a few worms to catch the fish, but I will try to stick more to sweetcorn, honest LOL

  7. #17
    Forum Member Mick1800's Avatar
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    Quote Originally Posted by Montana Tony View Post
    Hi Mick stay positive and live life to the max ,I am off to Ireland fishing next week ( fly ) I can't wade anymore but boat fish instead ( my legs are shot but arms ok ish) how is your voice ? Take a Look at voice banking ask your speech therapist about it and get it done at an early stage I banked my voice but it's not " ME" as I had lost a fair bit by the time I got around to banking
    Tony
    Funny you should mention that Tony, I "think" im ok with my voice, but it does change and sounds weaker if
    I exert myself, so thanks for the tip. Im not sure whats happening yet as far as any treatment goes, ive got
    an appoint at the chest clinic next week and one at the MND clinic, ive also got a visit next Monday from an
    MND person, but its all new to me, so ive not really any idea of whats what yet.

    I used to love fly fishing, but I hurt my back and have 2 prolapsed discs, so I went back to course fishing.

  8. #18
    Forum Member Ellie's Avatar
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    Quote Originally Posted by Mick1800 View Post
    ... so hoping to get there with the wife on the bike if I can find room for my nippy
    Oh Mick, that image is hilarious!! I've visions of your poor wife trying to hang on to the heavy Nippy machine, hose flying behind her, as you're booting up the motorway

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  9. #19
    Forum Member Mick1800's Avatar
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    Quote Originally Posted by Ellie View Post
    Oh Mick, that image is hilarious!! I've visions of your poor wife trying to hang on to the heavy Nippy machine, hose flying behind her, as you're booting up the motorway

    Love Ellie.
    I wouldn't be that cruel to my nippy (We used to have a dog called Nippy) I would make sure its strapped to the wife safely.

    Cheers.

    Mick

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