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  • Heather R
    replied
    THanks, Matthew and Ellie x

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  • Ellie
    replied
    Hi Heather.

    I too moved from a 2 storey house to a (very nice) bungalow and, although I dreaded leaving the house and its memories, it was definitely the right thing to do - made my life a lot easier. And my memories are safe in my mind 😃

    With so many things being means tested, sometimes it's better not to have any savings 😏

    Best of luck for the move.

    Love Ellie.

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  • matthew55
    replied
    Stay Strong Heather, as long as I'm breathing I will be here for you. Thumb or no thumb. 😄xx

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  • Heather R
    replied
    I thought I would try riluzole, thinking when I felt it was time to move on, I could stop it and that might help the end be speedier (don't know if that is at all true!). But I felt so ill on it, that I gave it up. It must be particularly hard for you Matthew if you are in pain (plus all the frustrating limitations). I am lucky that usually I feel physically fine, except when I get cramps. And I have two lovely children and one grandson. But I am not looking forward to the winter, with the additional restrictions of covid. Also, for the first time in about 20 years I will be living on my own in 2 weeks time. (I live in a 4 bedroom terraced house, and have always had friends/lodgers living in it with me). My house is very unadaptable, so am in the process of selling it and buying a bungalow (using about all my savings), so now have the huge job of sorting all the stuff in my house out (though a good job to do in any case for the future).
    So I don't know what to say to you, Matthew, but I have found your posts so helpful, and everyone else's, thanks. It is so good to be able to communicate with others with mnd. The association is wonderful how it produces so much information and support, I am very grateful for that, though sometimes I feel it would feel good to have somewhere to go that is just for sufferers, but I suppose we become so dependent on others just to live (thank you others!).
    love
    Heather x

    Leave a comment:


  • DJW
    replied
    Originally posted by Beemer View Post

    Hi Graham, are you ex military?
    I am, and think we have a different view about situations.
    I have pretty much accepted what I got, and intend to work with what I'm given, very similar to postings, you make the best of it cos you know you will be moving on in 2 or three years.
    Perhaps an idea for you Matthew?
    Beemer

    I carried a gun for my country, interestingly veterans have 50% increased risk of motor neurone disease.

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  • Tess
    replied
    Hi Graham,

    My partner is/was a software developer, so he'd be keen to check out anything technology wise. Let me know when your app publishes.

    Tess x

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  • Graham
    replied
    Great to hear Dee. Using the technology further pushes back against dementia, as well as the meds.

    I plan to publish my app to Azure next year. It automates the systems that I have put in place to run my DP.

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  • DeeH
    replied
    Hi Graham

    Mum and her friends with dementia, were using Zoom way before COVID
    They call themselves the Zoomettes

    She is also in contact with international friends in US and Australia especially at night with insomnia on Twitter and such
    She is an inspiration, she loves her supporter Maria and also gets personal one to one meditation with her Yoga teacher via zoom

    I remember when she couldn't switch on the computer, she is 71. She also has 24/7 Telecare support who have been marvelous
    (this was all funded with direct payment)

    I am interested in your App
    My husband is very into computers too


    technology is amazing connecting people with knowledge together

    Leave a comment:


  • Graham
    replied
    Hi Dee,

    Yes, DP/SDS works for me too. Like your mum says, consistency of carers is so important/critical. My app further lightens the burden.

    Technology is such a boon and I am pleased your mum has had the courage to get to grips with it. She is now having great fun, like me.

    Leave a comment:


  • DeeH
    replied
    Hi Graham

    Great to hear you are getting Direct Payments, mum with dementia gets them (called Self Direct Support in Scotland).

    Has been life changing for her to have only one or two named carers, who understand her. Rather than any old person, which was happening with home care.

    Still at the PIP stage with husband, should hear by end of August

    Mum and I have talked about end of life and quality or life but the deteriation has been so slow that she has been able to get used to each limitation.

    She is now an avid Twitter and Zoom user as she has insight into her condition

    (I hope my comparision to Dementia does not offend, the gradual or rapid loss of abilities as some similarities)

    Glad of the support and information on the forum

    Thanks

    Leave a comment:


  • Graham
    replied
    Hi Beemer, Matt,
    Just a civilian. My uncle took a bullet at Anzio '43 and was posted to the Grenadiers after. Sadly, his entire platoon were killed.

    My view is that I have survived MND. Many doctors/nurses have tried to write me off without success. I run a company and I am developing a care app. I also run my own care with Direct Payments.

    Although MND is very tough, there are always battles to fight and it makes you want to wake up in the morning.

    Yes, perhaps we will move sooner or later but like David Bowie, I hope to work/fight to the very end.

    Regards

    Leave a comment:


  • Beemer
    replied
    Originally posted by Graham View Post
    I thought you did, my mistake.

    My thought was to contact the Army and the Army to offer a 'buddy' service. Our life of experiences is much undervalued.
    Hi Graham, are you ex military?
    I am, and think we have a different view about situations.
    I have pretty much accepted what I got, and intend to work with what I'm given, very similar to postings, you make the best of it cos you know you will be moving on in 2 or three years.
    Perhaps an idea for you Matthew?

    Leave a comment:


  • matthew55
    replied
    Well at least one of every generation of my family has served so I guess it's in my blood 😊

    Leave a comment:


  • Graham
    replied
    I thought you did, my mistake.

    My thought was to contact the Army and the Army to offer a 'buddy' service. Our life of experiences is much undervalued.

    Leave a comment:


  • matthew55
    replied
    Lol I sadly have never served.
    ​​​​​

    Leave a comment:

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