Page 1 of 2 12 LastLast
Results 1 to 10 of 13

Thread: In a bit of a state .....

  1. #1
    Forum Member
    Join Date
    Jun 2018
    Posts
    9

    In a bit of a state .....

    Hello Everyone. I was diagnosed this week, so still trying to grasp what it all means & the fact that all the future plans my wife & i had are unlikely to happen now. We both keep breaking down & although the excellent advice (i see often here on this forum) about taking one day @ a time is logical, we cannot get past the loss of our future at the moment. I guess in time there will be adjustment so look forward to that time.
    Could anyone tell me if they have experience of the MND teams @ either Leicester LRI or Nottingham QMC? I believe i will end up with either location but wondered if one was better than the other? Any comments appreciated.
    Also, could someone tell me what the process is? I assume you get registered to the team who then start to provide the care you need - Physio, OT etc? How does it work??

    Many thanks in advance

  2. #2
    Forum Member Marigold's Avatar
    Join Date
    May 2018
    Location
    Cirencester
    Posts
    99
    Hi Hunter,
    I sooooooo know how you both are feeling right now.
    It took us 6 weeks to get through a day without crying at some point!!!!
    Let me say that is only this week.
    This forum has saved us.
    We have just begun to accept and plan our ‘new normal’. Baby steps.
    I still have no idea how this whole thing works and am still waiting for my first appt at MND centre in Oxford.
    Don’t hold your breath but I am assured it will all kick in soon.
    It will get easier each week - little by little I promise!
    Be kind to yourself.
    Marigold

  3. #3
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    7,929
    Hi Hunter and welcome to the forum;

    I guess if you have read about taking each day at a time, you have also read that it is normal for your brains too be all over the place with all sorts of emotions and questions. It takes time to accept a diagnoses of this type and start to live life again.

    You should here from a specialist nurse or a coordinator about things like a team. It might be worth chasing them up.

    Most of us say about your local hospice, it sounds horrible but they do help you live life and have a set of OT's etc. It's worth having a extra set of people as some know things that others don't and get things that others won't.

    Please feel free to ask any questions or share things with us.

    Best wishes, 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.

  4. #4
    Forum Member
    Join Date
    Dec 2017
    Location
    Holmfirth
    Posts
    161
    Hi Hunter
    So sorry for your diagnosis and welcome to the forum . You have obviously read the comments on the forum so I won't write it again.

    It is normal for you and your wife to be like this it happens to everyone, and there is no easy way round it . It is grief for what you had and what you had planned. It just takes time .

    As for how the process works it takes a little time and once they start to get the details it all happens at once . They all get in touch with you, well that is what happened to me.

    Take care
    love Chris

  5. #5
    Forum Member Barry52's Avatar
    Join Date
    Mar 2012
    Location
    Newark on Trent
    Posts
    2,365
    Hi Hunter and welcome.

    I won’t comment on life with MND because you will hear it from others. I will say that the care team at Nottingham QMC are in a state of flux at the moment. One of the nurses is off on long term sick leave, one is due to retire in August and one is about to take maternity leave.

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

  6. #6
    Forum Member
    Join Date
    May 2018
    Posts
    436
    Hi Hunter,
    I am so very sorry for your diagnosis.... This forum is a good source of advice and support because people do really understand what you are going through.

    It's sound advice to take one day at a time and try to stay positive because no one knows what tomorrow will bring. However, its easier said than done because we all want to make plans and look ahead and our futures are now uncertain. Its really hard to see beyond the loss of your future hopes and dreams but my husband and I are trying to make new plans, albeit with adaptions.

    We have good support from our local MND team so I hope yours kicks in soon.
    Take care of each other,
    Love Debbie x

  7. #7
    Forum Member
    Join Date
    Sep 2017
    Posts
    26
    Hi Hunter,
    I am sorry to hear of your diagnosis, a year today my husband had his and we know how you feel but a year on things have calmed down even though our lives are different to where we were before, for the both of you it will not feel like this for ever (though now, for you, it will feel like it) we a both fixer's of problems so that has helps us to work our way through some of this. My husband got himself on a medical trial and we both decided to sell our forever home and start again in a bungalow which is being finished off as I type not just for my husbands medical needs but I have then myself. All this will seem beyond you at the moment but you both will gradually get more used to things ,we are lucky in that my husband has a great doctor and the neuro team which helps with any medical problems are brilliant too, except any help that is offered because it can feel like a lifeline in these early days and when Mnda charity gets in touch I can honestly say they have been amazing our visitor has been wonderful, from my own experience be kind to yourselves, take your time to get your heads round it and keep talking to each other and family.

    Take care,
    Mandy.

  8. #8
    Forum Member AndyB's Avatar
    Join Date
    May 2017
    Location
    Stone, Staffordshire
    Posts
    85
    Hi Hunter

    I'm 2 years on from diagnosis having been through the shock, the tears and the fears.
    I'm still working full time, though increasingly from home, and will no doubt have to retire quite soon.
    The plans I had for my retirement years have long gone but life is still enjoyable.

    One thing I would recommend is that you take the advice of your MND professsionals. Don't put things off. You need to keep one step ahead so that as and when you deteriorate you are ready for it. I had a wheelchair assessment while I was still able to walk (I still can with crutches), but it took quite a few weeks to get an appointment and then a couple of months for my wheelchair and powerchair to arrive. I only use them occasionally but it's good to have them.

    My MND nurse visits every 4 to 6 weeks and coordinates appointments with the OT , Physio etc. as she sees fit. I know that not all areas provide dedicated MND nurses but you should have professionals to support you and coordinate your care,

    Best wishes

    Andy

  9. #9
    Forum Member
    Join Date
    Jun 2018
    Posts
    9
    Thanks Everyone, All the comments said the community on here was very supportive & i see why! I may come back to some of you wish specific Q's on what you have written but for now....Thank You!!

  10. #10
    Forum Member Sueb's Avatar
    Join Date
    Aug 2014
    Posts
    267
    Hi Hunter

    My husband has attended Nottingham QMC for 4years and has always had excellent service.

    Sue

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •