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Thread: My wife has been diagnosed with MND-ALS + FTD

  1. #2451
    Forum Member Dave K's Avatar
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    Yep, the night owl thing I am finding very hard to drop, 4 hours in one go is still my limit...

    Christmas is all but cancelled this year as I am not doing anything and no one is coming so it will be my first Christmas 'Home Alone'...

    To be honest and I know we all say this at the end of each year "Next year will be better than the last"... Well, in my case is definitely will be as there is no way that 2017 can be any worse than 2016... Forever the optimist A!

    Dave X

  2. #2452
    Forum Member lorret's Avatar
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    Apr 2015
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    Hi Dave, good to know you are looking forward, hope you looking after yourself. Lorret

  3. #2453
    Forum Member Dave K's Avatar
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    There is light at the end of the tunnel... 20 Months on...

    Although I will never forget Julie my life has moved on.

    From being a full time carer for such a long time coping with MND & FTD (combined)...

    I now have a full time job, OK, is only driving Articulated Trucks around the UK... But it is something I love.

    I have also met a wonderful lady; who also went through what I went through albeit Julie had both (combined) but this lady had a Dad with Dementia and a Husband with MND... So, we have so much in common.

    We can BOTH chat passing on memories, difficulties & even life stories, good and bad and we understand each other.

    There is alway a time to not forget but there is always a time to continue with life

    2 years ago, no a year ago I would never have thought that my life would be where it is now...

    I am happy but still remembering...

    Dave X

  4. #2454
    Forum Member Dave K's Avatar
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    OK...

    So how can I help the community?

  5. #2455
    Forum Member Terry's Avatar
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    Hi Dave;

    Good to hear from you and nice that you are now working full time doing something you like.

    I guess, by community, you mean Mnd people. You can do that by posting and supporting people here, joining your local Mnda branch and helping them or just raising money.

    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.

  6. #2456
    Forum Member Barry52's Avatar
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    Hi Dave,

    Great to hear from you again and I’m pleased you have found work that you enjoy. I’m sure you and your new soulmate can offer much advice and support to our community. Try to find a local MNDA branch as I find that past carers have so much to share.

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

  7. #2457
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    Good to get your update.

  8. #2458
    Forum Member chebs's Avatar
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    Feb 2018
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    Hi Dave,
    so sorry to hear about your wife. It's an awful condition as I know.
    I'm 57 and was told in December 2017 that I have MND....I was originally told I have FTLD, but my Professor thinks it could be another form of Dementia...
    I have recently undergone another Lumber Puncture (No 3) Scans/Genetics Test/Bloods/MRI's and we will be getting the results in April.
    I've only recently joined the forum and must say I have found some of the information useful.
    As someone from a medical background, I too have been researching these conditions, but have found it hard going at times.
    I suffer from short term memory loss,speak,balance, stiffness,cramps and fatigue.
    When I was first diagnosed with this illness I treated it in the "third person" as it was easier to deal with, but now the realization has hit home and caused some depression, frustration etc...
    I have recently had visits from my "support team" which is nice, but takes getting use to, as usually independent.
    Hopefully, when I get the results I will know if its still MND I'm suffering with alone or FTLD as well as first thought.
    Best wishes to you and your wife (sorry don't know her name)
    Chebs

  9. #2459
    Forum Member chebs's Avatar
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    Hi Dave,
    So sorry I didn't mean to cause you any pain with my reply, still getting use to this, maybe I should stay off this forum till my husband can vet my replies... so sorry for your loss.
    regards
    Chebs

  10. #2460
    Forum Member Terry's Avatar
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    Hi Chebs;

    No need to stay off the forum and your posts make good sense. I hope you soon get the answers to things.

    I live in Suffolk too.

    Love Terry

    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.

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