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Thread: 10 months after diagnosis ALS and 2 years after sneaky onset -helloI

  1. #1
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    Red face 10 months after diagnosis ALS and 2 years after sneaky onset -helloI

    I would like to contribute and say hello. I have read the posts of others and found comfort in this community. I thought I began MND August 2016 looking back to when my 7 dramatic falls before diagnosis began, on an Edinburgh tram. It took a fractured clavicle and hip within a month of each other (February 2017 )for medics to investigate (previous referral to ENT plainly wrong). I already suspected MND once my voice started slurring along with a robot walk I had had for a while, a year ago November 2016.
    Just in the last fortnight I have recognised what I had been reluctant to - I started with unattributable symptoms 2 years ago with painful hip and slow walk, which doc and physiology said ‘could be’ tendinitis but now I think muscle weakness caused this. So I am 2 years in, not 1 year. I took riluzole straight away on diagnosis but maybe a bit too late. I can be happy in life generally. My speech cannot stand alone ( banked my voice in March) and I use apps and lightwriter. I use a power chair always and mouth muscles are weak for moving food around. Arms getting weaker. On YouTube look up Rudi Francisco ‘The Complainers’ for a positive boost if you have time. I like the bit about if your life falls in pieces around you, make something new out of the pieces....
    Love Roadahead x

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    Hello Roadahead,

    Welcome to the forum and I'm pleased you've found it a comfort already.
    You've certainly had a bumpy ride to diagnosis!
    It's good to hear that you're being positive.
    Remember anything you need to know, then the forum is a good place to ask.
    I'll take a look at your YouTube suggestions!

    Take care,
    Bern x

  3. #3
    Forum Member Ellie's Avatar
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    Hi Roadie,

    Welcome out of the shadows! Sorry you've been diagnosed with this (not so) wonderful condition.

    I know it's tough swapping working legs for wheels, but it's safer and energy saving too

    Given you're finding it hard to move food around your mouth, if you're open to having a feeding tube, now's the time to think about one before eating becomes a critical issue. You DO NOT have to use the tube for nutrition if you don't need to, but it's an insurance policy. (I get majority of my calories through a tube but eat a lunch of chopped-up food daily. My tongue is too weak to move food around my mouth. Tube feeding takes the physical and time pressures off me to get my calorie requirements, and allows me to still enjoy eating what I can. Win win for me!!)

    As Bern said, positivity is important - it goes a long way.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #4
    Forum Member Barry52's Avatar
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    Welcome Roadahead and who knows what lies around the corner?

    No need to lurk in the shadows anymore so keep in touch.

    Best wishes,
    Barry
    I’m going to do this even if it kills me!

  5. #5
    Forum Member Dude's Avatar
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    Hi Roadahead. Welcome, it took me about 6 years to post on the forum. Long term denial lol. Took Riluzole for first seven years, stopped for no reason. I have lived on Ensure shakes for about four years, just strawberry, 4 or 5 a day through a straw plus juice and tea. I can't be bothered with food. I believe the fluids keep my swallowing quite good. My care provider just dumped me. Social services are looking for another one. I have had the same provider for about four years so training the new posse is going to be hilarious as I have no speech now. Dude x.
    Why 'Roadahead'?..

  6. #6
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    Welcome Roadahead

    You found the right place for much support, advice, and knowledge from a great group of folks who truly understand.

    All the best to you.

    CCxox
    .

  7. #7
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    Hello Roadahead,
    welcome to the forum. Sadly your road, no pun, to diagnosis is a familiar one to many here. This is a great place to find some answers and solutions to what might pop up in your journey. Ref Ellie's comment I found that when my wife D fitted the PEG early it gave her a choice and freedom for before solids / liquids became a total impossibility
    regards Steve

  8. #8
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    Quote Originally Posted by Roadahead View Post
    On YouTube look up Rudi Francisco ‘The Complainers’ for a positive boost if you have time. I like the bit about if your life falls in pieces around you, make something new out of the pieces...
    Hello Roadahead,

    Welcome, I looked up the reference that you made to Rudi Francisco and he's spot on when your life falls to pieces you should go ahead and make something of the pieces.

    Thanks for putting me on to this it is such a helpful way of looking at life, almost three years down the line I cannot really walk or stand for more than a few moments but rather than dwell on how things have fallen apart I should make something new from the fairly large pieces that remain, I'm going to see what I can do.

    John x

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    Hi Dude, I hope your new carers have a kind attitude and are patient while you use your chosen method to communicate. I like your user name! I take liquid riluzole though I feel that the tentative benefits may have occurred over my lovely summer as MND taking a grip now (literally with those muscle spasms for which I started Baclofen yesterday)
    Where did I get Roadahead? This Irish blessing you have probably seen before:
    May the road rise up to meet you.
    May the wind be always at your back.
    May the sun shine warm upon your face;
    the rain fall soft upon your fields
    and until we meet again,
    may God hold you in the palm of His hand

    Love Roadahead

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    Dear John, I really love that you heard the slam poem and received and built on it’s huge energy. Three years down the line you have a lot to share. Probably things don’t improve but we can change how we look at it hopefully. Thank you for replying which has made me feel good.
    Love Roadahead

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