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Fore sight NOT hindsight

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    Fore sight NOT hindsight

    In retrospect early signs 2015 but foot drop started 2019 but still rode hills n dales and did the Yorkshire 3 P’s but by January’20 enrolled in the MND family.
    So inspired by my wife I set about a virtual challenge, did well over 1,000 mile on turbo trainer acquiring numb nuts and £3+ and also % of bike and cycle kit sold for MND ; the MND has started to bite hard since 2021 and could well do with the 3 k for home adaptions.
    Yes MND offers some grants but both MND and Bradford Adult Social care have suggested among other fund raising ideas to approach previous employer...umm the NHS ! ...jokers joking.
    So yes bikes all sold, a nice powered wheel chair but no access over front door step ( been waiting since 5 Feb for Adult Social Care assessment & told could be another 2/12 and then more to get work done) and then how to get into town up n down 20% little hill ! On on , one day at a time BUT just wish we had had more forceful guidance on day one, YOU WILL NEED & CROWD FUND FOR YOUR NEEDS; fund raise when sorted.
    But then nowt will get these legs to roam the moors again with the dog or cycle up dales let alone walk; not bitter and thankful for the care and aids I do have; just regret lack of foresight.




    #2
    Isn't it a pity we are not all professional rugby players? Too harsh? 😀x
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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      #3
      hi olicana

      think we all wished we had foresight. the thing is you could rush out and do this get that and then wait to need them. i got some things for my husband basic wheelchair and walking frame. still hasn't used them and i know he is going to fight to not used them. so now we just get to fall over them or move them about the house out of the way. have same problem in that i cant get the wheel chair in and out of the house because of steps. so wheel chair sits in the garage or back of car waiting to do me damange moving it about.

      not sure if i need foresight,a crystal ball or even a fairy godmother. perhaps all three.

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        #4
        Originally posted by Olicana View Post
        I ... just regret lack of foresight.
        Don't waste time, energy or emotion on not having the ability to know what may have been (and, is) in store for you - that is a supernatural power nobody has.

        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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          #5
          Hi Olicana,I have decided to buy a portable threshold step on line as I don’t want to go through the waiting game and financial means testing.We did get a through floor lift fitted in November 5 months after I was diagnosed with MND.We bought it refurbished and fitted for half the price quoted for a new lift.Found a chap who takes out these lifts, refurbishes and sells then on including fitting and guarantee.
          MND association awarded me a grant for a wash and dry toilet(a God send if you have weakness in arms and hands) We were fortunate enough to have some money to convert bathroom to wetroom.
          Wheelchair, frame , stick provided by NHS,
          Qualified for a motability scheme wheelchair access vehicle ( can still get in passenger seat)Got blue badge sorted.

          Yes living with a disability can be expensive .Then waiting lists and of course financial assessments so no guarantee you qualify for adaptations until the assessment is done including financial assessment.
          Like you mentioned MND can move on quickly and it adds to the stress to be on waiting lists or in need of financial help.

          Best wishes
          Mary

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            #6
            Hi Olicana,
            as the crow flies Bradford to Wakefield a mere 20 miles or so I guess? its the post code lottery we hear about - Wakefield have been fantastic to my husband so far I have no complaints whatsoever. Its a pity and an anomaly that needs sorting out. I feel for you I really do we would have been up the old creek wiout that paddle wiout them.

            Sue
            Husband Albert diagnosed PMA Feb 21

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