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Thread: Hello fellow MNDers, I'm new

  1. #1
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    Red face Hello fellow MNDers, I'm new

    Hi all, I had a confermed diagnosis of MND/ALS in early June - having been told in April following EMG test that it was likely. Mind you, I had been told in February that I definately did not have MND - so it came as double shock. I recently saw specialist at Royal Free Hospital who told me from the physical examination he could not confirm that I had MND, so he wants me to have a lumbar puncture (Deep Joy), just so he can tell me I have MND, which i know I have, as I have increasing muscle weakness in my legs and abdomen..
    I am trying to adjust, have a great MND nurse, seen physio; today I saw a hydrotherapy physio and start that next week... I love the water so am looking forward to that. Still not seen OT which is so frustrating as I could do with a stair lift, bath board and wheelchair....
    I am single, (was married for 35 years) retired, female with a wonderful group of friends and great church family who offer me great support. I can still drive and walk using crutches.
    I look forward to chatting with some of you soon.
    Oh, I started Riluzole for 5 weeks, but came of it, as it made me feel so sick and upset my tummy.

  2. #2
    Forum Member Barry52's Avatar
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    Hello Scotty and welcome to the forum family.

    Sorry to hear that your diagnosis was confirmed as MND and the proposed lumber puncture is only one of several methods involved in the diagnosis but not everyone goes through it. Having access to hydrotherapy is great news but the absence of an OT is not. The MND team at the Royal Free should be able to sort this out but you could contact MND connect to seek their advice.

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

  3. #3
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    Hi Scotty, welcome to this very friendly forum, I am sure you will find lots of advice here.
    Best wishes
    Sheila

  4. #4
    Forum Member Gillette's Avatar
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    Hi Scotty and welcome to the forum. You had a frustrating route to diagnosis, didn't you? It's good to know that you have plenty of support.

    There is a wealth of knowledge and experience on the forum which members are happy to share.
    Dina


    Trying to keep positive, but not always managing.

  5. #5
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    Thank you

    Thank you Barry
    I will give the OT til end of the week andcthen get my MND nurse on the case ..

    Quote Originally Posted by Barry52 View Post
    Hello Scotty and welcome to the forum family.

    Sorry to hear that your diagnosis was confirmed as MND and the proposed lumber puncture is only one of several methods involved in the diagnosis but not everyone goes through it. Having access to hydrotherapy is great news but the absence of an OT is not. The MND team at the Royal Free should be able to sort this out but you could contact MND connect to seek their advice.

    Best wishes,
    Barry

  6. #6
    Forum Member Kayleigh's Avatar
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    Hello Scotty,

    Sorry about your diagnosis and a very warm welcome to this friendly forum.

    It's great to hear that you have got many good friends and also lots of support from your church family. The MNDA also provides support and advice locally (including local branch meetings as well as support and advice from their Regional Care Development Advisers and Association Visitors). The Advisers at the MND Connect helpline are also very knowledgeable, friendly and helpful (I have provided a link below to the MND Connect helpline webpage):-
    http://https://www.mndassociation.org/support-and-information/our-services/mnd-connect/

    Hopefully you will get to see an OT very soon. Concerning the provision of equipment, sometimes physiotherapists can provide mobility aids and it doesn't always need to be an OT who does a referral to wheelchair services (your Mnd Nurse should know which of your healthcare professionals will have responsibility for this).

    Just a thought - if you need a manual wheelchair, you might be interested in the Red Cross's wheelchair borrowing & hire service:-
    http://https://www.redcross.org.uk/get-help/borrow-a-wheelchair

    I hope you enjoy the hydrotherapy sessions and you get an appointment with an OT very soon.

    Best wishes
    Kayleigh
    Last edited by Kayleigh; 12th August 2019 at 21:07.

  7. #7
    Forum Member Ellie's Avatar
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    Hi Scotty and a warm welcome to you.

    I did lots of hydrotherapy and absolutely loved it!! It's so relaxing in the warm water and it's amazing how relatively easy it is to move in the water compared to regular physiotherapy.

    Enjoy every session!! (Don't forget to drink plenty of water afterwards for hydration)

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

  8. #8
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    Cool O T at last

    Hi there... I just wanted to update my last intro message to say that the Occupational Therapist arrived last Friday. Hurrah. Only 10 week wait! But she was lovely and very supportive. Referrals for stairlift, or lift made and also motorised wheelchair... feeling relieved but no idea how long these will take. Also started hydrotherapy last week and going to have it weekly for as long as I can manage it, and music therapy too....

  9. #9
    Forum Member Gillette's Avatar
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    Hi Scotty,

    So pleased for you that the OT has been to see you. You should see things moving now.
    Dina


    Trying to keep positive, but not always managing.

  10. #10
    Forum Member Ellie's Avatar
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    Great to hear that Scotty - even better to hear she is good and has made those referrals for you.

    Tea and biscuits for her at every visit

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

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