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Thread: My struggle with mnd

  1. #1
    Forum Member
    Join Date
    Aug 2018

    My struggle with mnd

    Hi, I am 82 years old and was diagnosed with mnd in May 2017. My symtoms started in December 2016. I moved to a nursing home in January this year as my voice and swallow was rapidly deteriorating and my legs are getting weaker. I miss my home and my independence. My symptoms get me so low and I struggle to keep positive at times. It would be lovely to chat with people going through a similar problem.

  2. #2
    Forum Member
    Join Date
    Jul 2018
    so sorry Sally. My lovely Husband who is 58 was diagnosed 17th July. I am finding it difficult. Sorry you have had to move into a home . I am sure that you will get lots of support on here

  3. #3
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Hi Sally. Sorry that you are feeling low. Any chance of anybody taking you out for the day? A change of scene may help to lift your spirits. I know that it's hard to cope with this horrid disease. I hope that your care staff are treating you well and that they understand about MND and all of it's associated problems. Take care, Lynne

  4. #4
    Forum Member
    Join Date
    Feb 2017
    I was 50 when I was diagnosed. My voice, right arm and my legs are going. Fortunately I live with my wife and dog and each evening we go out on my mobility scooter (waiting for a powered wheelchair). During the day I play Internet chess and write emails so can disabled persons access the towpath in the village. I have had some success!

  5. #5
    Forum Member JAY TEE's Avatar
    Join Date
    Apr 2014
    Halesowen, West Midlands
    Sally, this MND you don’t always know how fast it will be. I was formally diagnosed a week after my 65th birthday in May 2014. I had pain in left hip and walked for a while. Now I cannot walk and talk and have a food peg fitted. But can still eat if mash food up. I manage not to be low and my oldest grandson is my gardener and others like helping mash up my food. I always feel positive about life and Monday will go to local MND coffee morning and chat with other people luckily my best friends bought me good mini iPad and I got lots of stories written up for humour and they like my Peaky Blinders one. I also am going into a local Hospice for two weeks in September to give my wife/carer a holiday break. Best wishes John

  6. #6
    Forum Member
    Join Date
    Sep 2012
    Welcome Sally

    You found the right place for great advice, support, knowledge, and friendship.

    Wishing you all the best in the days ahead.


  7. #7
    Forum Member Boiler68's Avatar
    Join Date
    Feb 2018
    Hello Sally..welcome to the forum; sorry that you have to be here. Just to reiterate what the others have said - I hope you have good staff looking after you. You haven't mentioned you have your folks dropping in to see you? My husband tries to keep busy every day and sets himself tasks like emails and I drive him out to see people he knows. It would be good if you were able to get out once in a while and keep in contact with friends. This forum is great for support, tips and a good laugh now and again. I admire you very much actually - my mum is in her 70's and not computer literate at all so for you to be so proactive at 82 is absolutely fantastic! I can only hope that I have your resolve and strength if I reach my older age..
    Best wishes..
    Love Boiler x

  8. #8
    Forum Member Barry52's Avatar
    Join Date
    Mar 2012
    Newark on Trent
    Welcome Sally,

    You have certainly come to the right place to share feelings and experience. I find FaceTime is a great way to keep in touch with family and friends especially if your speech is compromised. Even my mum who is 88 uses it and it helps her understand what I am saying.

    Keep in touch.
    Iím going to do this even if it kills me!

  9. #9
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Hi Sally and welcome to the Forum.

    I'm sorry you've been diagnosed with with MND and even more sorry that you've had to leave your home for a nursing home.

    Are you able to go on trips organised by the home?

    Have you an effective way to communicate with staff and residents? It's good that you've Internet access - I hope you can continue to chat with us!

    Sending you a big hug.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  10. #10
    Forum Member Pinkelle's Avatar
    Join Date
    Feb 2017
    Hi Sally. You've come to the right place for advice, support and general chat. Welcome x

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