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Thread: Recently diagnosed

  1. #1
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    Recently diagnosed

    Hello I was diagnosed early November 2019 with ALS I had originally gone to the GP because of cramping in my hands and difficulty in using a knife and fork, laces and buttons, and more importantly I was losing my grip when playing golf.
    My introduction to this was not good. I wasn't expecting the dreaded words, as previously it was just thought I had trapped a nerve.
    So after being told i went home and waited for confirmation and some idea of what happens next. After two weeks of nothing I went back to the GP, who had no idea and had to find details through medical records. Another 2 weeks,still nothing (I was probably hoping it wasn't true) so I went to the hospital and discovered that although the letter had been written the same day ,marked urgent, the admin department had just done nothing with it.
    2 hours later I got a phone call from physio and appointment made . This week I have received an appointment for respiratory clinic. And follow up appointment with consultant at the end of the month.
    I have been back to the GP since and had explain shared protocol as that hadn't been done either Please tell me this is not normal.

    On a positive note my physio is lovely ,have had 4 sessions with her and she works through each new ache.
    My family and friends have been very supportive and we are enjoying life, cruise booked, theatre tickets bought, and with my oldest friend have set ourselves the target of having a pint in every pub in my home town, 15 done about 120 left to do.
    I mentioned golf earlier, I have a 4 ball team ready and willing to play in any charity days, ( south West , midlands,
    Thanks for reading

  2. #2
    Forum Member Ellie's Avatar
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    Oct 2012
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    Hi Shaun and a warm welcome to the Forum nobody wants to join...

    Good to hear how you're getting on with life ! It's important to do all you can and what you enjoy - it's great for the spirit, so great for the body too.

    Even if I could walk, you wouldn't want me in your four ball I enjoyed playing a round but was never great. The hubby and I had great dreams of playing golf in warmer climes after retirement - our plans are different now, obvs



    Quote Originally Posted by Shaun View Post
    ... Please tell me this is not normal.
    Well, unfortunately you're not the first, nor I doubt the last, newly diagnosed person to have that experience It comes up on the Forum too often.

    Best of luck for the pintathon, cruise and continuing playing golf.

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

  3. #3
    Forum Member
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    May 2018
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    Hi Shaun,

    A warm welcome to the forum, although I am obviously so sorry for your diagnosis. This forum is a really good place for emotional and practical advice.

    The diagnosis is such a shock and it must be extra hard to be left to try to come to terms with things with little immediate professional support.

    It's great that you have a positive attitude and are planning lots of treats and holidays. It really helps physically and mentally. Although I can no longer walk we still manage to fly ( not literally unfortunately ! )

    Take care of yourself,
    Love Debbie x

  4. #4
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    Hi Shaun,
    Welcome to this very friendly forum, lots of advice on here. Glad you are planning lots of fun things.
    Love Sheila x

  5. #5
    Forum Member Barry52's Avatar
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    Hi Shaun and welcome.

    You have a positive attitude and this will help you. I was a keen golfer and I regret not being able to play anymore but occasionally I pop in to the 19th hole.

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

  6. #6
    Forum Member Lynne K's Avatar
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    Nov 2017
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    Hi Shaun, welcome to the best forums for all of us on this horrid MND journey. It sounds like you are keeping positive which is great. I hope that your pub challenge will be greatly enjoyed. It's a fab idea, but will most likely throw up access problems along the way. Some forward planning and research would be good then you can do the tricky ones at the beginning, leaving the easier access ones for later when your mobility may be effected.

    I too have shows booked for the months ahead. We also have 2 UK holidays booked, a week each
    People with MND do fly but I don't fancy it. I love this country so it's no problem staying here. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  7. #7
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    Thankyou all for your comments, I'm sure I'll have some questions to ask as time goes on.(hopefully...... no, definitely)
    Shaun

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