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Thread: Hello Everyone

  1. #1
    Forum Member
    Join Date
    Apr 2020
    Location
    Scotland
    Posts
    44

    Hello Everyone

    Hello from Scotland (I'm not sure entirely where this forum covers),

    My boyfriend (aged 32) was diagnosed in January this year, after 2 years of testing (or waiting for appointments I should say, until someone took things seriously). Left arm completely gone now and right arm 20% functioning, as well as balancing troubles and a few falls around the house already.

    I've been looking at this forum for quite some time and not been brave enough to post up till now. He's quite a private person and he'll admit more of an introvert than myself. I've been a complete mess to say the least and reckon I could write a book or a movie on the last two years alone never mind what's ahead of us. When I think about things for too long i just break down. Never had any requirement for mental health assistance previously but first session booked in this week as don't want him to see me tearful constantly and a method to offload I guess. He seems to have come to terms with it (Besides having not told his family yet. A huge task, I know, but I know that'll be the extra support we need. However may have to wait an extra few weeks now with Covid), but I can notice moments of sadness for sure.

    He stopped working at the end of last year and I've been working full time until getting furloughed 6 weeks ago and given the diagnosis, has probably been a blessing in disguise to be around as things slowly progress and assistance is needed more. Who knows what big decisions I'll need to make when they lift measures further.

    Anyways, I just wanted to say hello to all and I'm sure I'll have questions along the way, as we're going to have to learn as we go, like most.

    'Tess'

    Xx

  2. #2
    Forum Member
    Join Date
    Jul 2019
    Location
    Bournemouth
    Posts
    129
    Hello Tess,
    Iím 37, Iíve had MND since July last year, this forum and the people in it have been my greatest support, your not alone, if anyone doesnít have the answer, theyíll point you in the right direction

  3. #3
    Forum Member
    Join Date
    Apr 2020
    Location
    Scotland
    Posts
    44
    Hi Hayls,

    So bazaar that this post has appeared. I knew I wasn't going crazy when I thought I posted it the other day, so I re wrote one also. Must sound like a repetitive robot now haha.

    Thanks for your reply. I hope joining a network will help answer some questions.

    Tess
    X

  4. #4
    Forum Member
    Join Date
    Jan 2011
    Location
    Northamptonshire
    Posts
    246
    Welcome Tess. Please don’t ever feel there are questions you can’t ask. It’s a lot to take in but try to take a step at a time otherwise you will feel overwhelmed.

  5. #5
    Forum Member
    Join Date
    Apr 2020
    Location
    Scotland
    Posts
    44
    Thankyou Miranda!

    Tess
    x

  6. #6
    Forum Member
    Join Date
    May 2020
    Posts
    3
    Hi Tess

    Thanks for answering some questions which is very helpful for me to solve problems by joining this network

    Regards,
    Peter james

  7. #7
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Posts
    873
    Hi Tess, well done for your courage to join this forum. A great decision certainly. Iím sorry about the two year journey that you have both been on. Itís not surprising that you feel the need to offload and I hope that the sessions you have booked prove to be helpful.

    Has your partner received all the support that is due to him, such as OT, Physio and Speech Therapist?

    When you feel a little stronger itíd be a good idea to broach the conversation of your parter doing voice banking. I donít want to overload you so more about that later. Take care, 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.

  8. #8
    Forum Member matthew55's Avatar
    Join Date
    May 2020
    Location
    Near Manchester
    Posts
    100
    Hello Tess, I found out I had MND this year. The only way I can deal with it is by taking one day at a time, the future may be set but it hasn't happened yet has it? Be Strong x

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