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Thread: Hello everyone!

  1. #11
    Forum Member Lynne K's Avatar
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    Good morning a Peanut and Sue.

    Peanut, I’m sorry that you’ve had to join us on this horrid journey. We all seem to have a bit (or a lot) of trouble getting our initial diagnosis. I was first sent for a spinal MRI that indicated (what I’d suspected for many years) severely degenerated discs. I was discharged. A lost opportunity. My GP was annoyed and referred me a second time. About 10 or 12 months later I was sent for relevant tests (a brain MRI plus nerve and muscle tests), my diagnosis came shortly after.

    It is surely difficult for both us and our loved ones in the beginning. It sounds like you’ve passed this stage and found a way to cope. I can relate to what you said about keeping your MND secret for now. I don’t like to be the focus in lots of situations. But in one of the situations that concerned me it turned out mostly better to be ‘out.’ Most people are ok with it and offer help with doors etc But I still don’t like being watched.

    Good luck for your slow degeneration to continue and in keeping your teaching role as long as possible. Have you thought about voice banking?

    Sue, Hi.
    I’m sorry about Mark’s situation. He’s lucky to have you in his corner. It will be tiring both physically and emotionally. Take good care of yourself, 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.

  2. #12
    Forum Member Peanut's Avatar
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    Good morning Lynne!

    hearing from you and others I guess a year from the first GP visit to the diagnosis is really not so bad in comparison; I think I was more frustrated by the attitude of some of the professionals I dealt with initially. But that really doesn't matter now. Strangely, I find the coronavirus-situation to be a distraction - survive the pandemic first, then deal with the MND afterwards ...

    And it's good to hear that you've had positive experiences sharing your diagnosis. I have to say it's been fine with my line manager, and our administrator who's in charge of disability accommodations has been great finding out about available support and is ready to fight my corner for equipment.

    Yes, voice banking definitely seems like a good idea while I'm sitting at home - I'll post a question about technology in the relevant forum!

    Have a good Sunday!
    Peanut

  3. #13
    Forum Member Ellie's Avatar
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    Oct 2012
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    Hi Sue and a warm welcome to the Forum.

    I'm sorry to hear of Mark's diagnosis and that he also has FTD - hopefully he is well looked after by the NHNN.

    Please don't hold back in seeking help for either Mark or for yourself - it can be a difficult journey. (I see that Rennie Grove offer Complementary Therapies to carers/family )

    Stay safe.

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

  4. #14
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    Sue1
    I know about FTD, my Dad developed personality character changes, it took us years for FTD to finally being diagnosed, he craved sugary things, laughed at everything and would get past memories wrong, describing them not as they were, finally they scanned his brain and the condition was so progressed the frontal temporal lobes had almost disappeared completely. Iím unsure if he then went on to develop MND, he stopped talking, walking and swallowing became problematic,
    My MND was diagnosed July 2019 but had symptoms for about a year before hand, when I eventually got referred to Neurology the moment I mentioned my Dads FTD they suspected I had MND because a test detected an inherited faulty gene and the lead specialist at Southampton has said I could develop FTD as well
    I know how tough FTD can be and Iím starting to experience how tough MND is but one thing this forum has taught me is, we are not alone, please donít be afraid to ask for advice or even if you need a good giggle, they are a great community, we are here for you

  5. #15
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    Hi Sue

    My husband was diagnosed with MND October 2017. The lat twelve months I have noticed changes in his personality. Really pleasant in himself but quite over familiar with others at times. His concentration has changed and he can longer manage his own fianances. I wonder if his is the start of FTD alongside his MND. Would appreciate more information from you if that's ok.

  6. #16
    Forum Member Ellie's Avatar
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    Hi Piglet and a warm welcme to the Forum.

    I'm sorry to hear of your husband's MND diagnosis and of his cognitive & behavioual changes. Hopefully Sue will be along soon but, in the meantime, you might find this information sheet useful to read: https://static.mndassociation.org/ap...ay-i-think.pdf

    Does he see a Neuropsychologist at his hospital appointments? If he does, they screen for cognitive and/or behavioural changes and will offer advice. He can also be screened by an MND Nurse or other healthcare professional, on referral from his GP. You could maybe phone his clinic or, if you wanted to just chat to someone, the MND Helpline is staffed by lovely knowlegeable people.

    I'm sure nothing beats talking to someone who has first hand experience, so hopefully you'll get help.

    Take care.

    Love Ellie.
    Last edited by Ellie; 22nd April 2020 at 20:04.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  7. #17
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    Thanks for your reply Ellie. Yes we attend the Walton Centre in Liverpool. I did mention about cognitive changes at last appointment and they advised they would refer for Psychology assessment. We were contacted by mental health team nearer to us but it wasn't appropriate as it was assessment for mental health which did not include cognitive testing. To be truthful I don't want another diagnosis alongside MND just wanted a chat really.
    Many Thanks

  8. #18
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    Hi Peanut, sorry to hear your diagnosis but welcome to this elite club of lovely people.
    I've been under the care of Dr Sidle at Queen Square for 8 years.
    They are an amazing team.
    You are in good hands.

  9. #19
    Forum Member Ellie's Avatar
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    You're right, Piglet, it certainly is not a mental health assessment your husband needs!

    I was thinking maybe you could contact your local MNDA branch who may know of a spouse/partner going through the same as you and would contact you?

    Here is the link to find a local branch:
    https://www.mndassociation.org/suppo...port/branches/

    Take care.

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

  10. #20
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    Apr 2020
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    Thankyou Ellie.

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