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Thread: Newly diagnosed

  1. #1
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    Newly diagnosed

    Hello everyone out there. I have a feeling that I will need the companionship of this forum in the days to come. I was diagnosed with MND in January this year, but as time goes on I feel the need to connect with fellow sufferers. I have bulbar onset, and my community support is falling into place but as sufferer of the condition I feel isolated. At present my symptoms are developing only gradually....slurred speech and some difficulties chewing and swallowing. Also some weakness in arms and hands. I want to stay positive and enjoy what I can but the coronavirus is now preventing this, as it will be for all of us. How is it affecting everyone else?

    Love,
    Lizzie

  2. #2
    Forum Member Terry's Avatar
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    Hi Lizzie,
    Most of us are worried about the virus because it affects our already compromised breathing. Doubt it will be possible but try to push for a NIPPY breathing machine because it would help you through the virus should you be unlikely enough to get it.

    Take all the precautions possible.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  3. #3
    Forum Member Barry52's Avatar
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    Hello Lizzie and welcome.

    I’m pleased you have reached out to our forum family where you will find support and advice. We often have the feeling of isolation and now it is even worse. What I will miss most is family gatherings and the monthly meeting with my local MND group. Thank goodness for technology as even my mum of 89 years can communicate with her iPad.

    Stay in touch and keep safe.

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

  4. #4
    Forum Member JAY TEE's Avatar
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    Lizzie, sorry to say welcome but on this site you can find out anything you need to know. iThe one thing I regret not doing when formally diagnosed with MND in May 2014 was to record my voice to use on a speak app. As for eating I can still do that with food mashed up. My breathing ok as never ever had a drag on a fag. But I am naughty I have a pint every night.
    Best wishes John

  5. #5
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    Hello Lizzie and a warm welcome to our forum,

    I am so very sorry for your diagnosis. It's such a shock , even if it is suspected. It took me a while to come to terms with my diagnosis and accept help. It must be very hard in the current circumstances because of the difficulties in putting supports and meetings in place.You sound a very positive person but again it's hard to make the most of everyday when we cant go out.

    This forum is a very good place for emotional support and practical advice from people who really understand and no question is too small.

    Take care of yourself and stay safe,
    Love Debbie x

  6. #6
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    Thankyou all so much for your supportive replies. I really appreciate them. Already it makes me feel more connected. I have already banked my voice Jay Tee, and I know it will be very helpful when my voice goes completely. We all need to stay positive in these unprecedented times. Does anyone know if mnd sufferers are in the government's vulnerable persons' list. I've looked at the list but do not see it specifically mentioned.
    Thanks again, new friends,
    Love, Lizzie

  7. #7
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    Hello Lizzie,
    Start of my symptoms of MND is very similar to yours, I totally understand your determination to get out and experience life while we can, my Fiancť thought I was in denial but it was my way of trying to live my life while I could
    Nothing I can say can make up for whatís happening across the country right now and contending coming to terms with MNDís daily challenges and seeing your abilities change, the one thing I can vouch for is our abilities will change but Iím seeing that as a challenge and my wheelchair or mobility scooter havenít stopped me yet, I have limited arm and hand movements but my controls have been adapted so I can still control when I want to move and have lots of adaptations in my home so I can switch over the TV or a light or open a door, Iíve got lots of activities planned for when all this is over, my only advice is try and think of the future and plan what youíd like to do, I never realised just how many things I can still do, hope you keep safe and we are all here to support each other, keep your chin up
    Big hugs x

  8. #8
    Forum Member nunhead_man's Avatar
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    Good morning Lizzie and welcome

    I'm sorry to hear you're feeling isolated and glad to hear that some responses here have made you feel better.

    Do you have a local community of MND people? I'm part of my local branch and we are continually in touch in various digital ways.
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

  9. #9
    Forum Member Lynne K's Avatar
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    Good morning Lizzie. I’m glad that you found this forum and that it’s already helping you. That was a great decision to do voice banking so soon.

    We’ve been self isolating for 14 days now. We do internet food shopping that takes determination because delivery slots are seldom available. My husbands son delivered us some food keeping his distance from us. He lives 50 minutes drive away from us so we don’t want to call on him unless absolutely necessary. Our window cleaned and my OT have offered to shop for us,

    I’m having some helpful tech installed for me on Wednesday. I’ll be able to operate some lights, our tv, the radio, my iPad and my phone by an infrared headset. My OT and I think eye gaze would be better but I’m greatful for any help. We need a different door before I can have control of it.

    I’m very stressed about the current pandemic, not only for myself, but my children, grandchildren, my great granddaughter, my brothers and my sister.

    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.

  10. #10
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    Quote Originally Posted by nunhead_man View Post
    Good morning Lizzie and welcome

    I'm sorry to hear you're feeling isolated and glad to hear that some responses here have made you feel better.

    Do you have a local community of MND people? I'm part of my local branch and we are continually in touch in various digital ways.
    Thankyou all again for your replies. I had planned to go to the next local MND meeting, which would be my first time, but the current lockdown will now prevent this. As I haven't yet attended I have no digital correspondence with them Any ideas how I could arrange to connect digitally?
    Love,
    Lizzie

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