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I am trusting that today is not going to be the way from now on

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  • Graham
    replied
    It is work as normal for me Heather, first and foremost. It is how I was before I got my diagnosis of MND. It gives me 'normality'.

    I decided I would do something 'Spectacular', after all, nothing to lose if I fail.

    I have been working solid on my comprehensive care app for 3.5 years now. It will do everything I need to manage my DP account.

    More info on 'EQUIPMENT AND TECHNOLOGY' - What would a good care app include?

    xx
    Last edited by Graham; 6 January 2022, 02:03.

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  • Heather R
    replied
    Graham what an example in determination and patience!! I don't know what's involved in making an app. but a great thing to be able to contribute, how's it getting on?. x

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  • Graham
    replied
    It very much is the nature of the disease that fools everyone. We are consumed from the inside out.

    It is much easier to think of it as 'extra time' following diagnosis.

    However, the bills still need paying, care professionals won't help until too late...

    Love and cuddles xxxx

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  • denise
    replied
    Graham
    I'm in awe of you. I know some of your story and it really hit home before but again I feel ashamed at my lack of patience and my lack of empathy. I feel embarrassed for my wish for normality. Have you brought me down to earth?

    love and hugs
    xxxx

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  • Graham
    replied
    When I was discharged from hospital July 2014, after over 700 days waiting for safe discharge home from Hope hospital, I had had to learn to be very patient. I also learned that life online is tolerable. I played a lot of online chess at chess.com and played for Team England with Terry. I got good playing on the top boards. I even played board 1 in a friendly of 180 players. Up to 400 players can play in a match.

    I am now focusing all my efforts on my comprehensive care app.

    When life throws you lemons, make lemonade I suppose.

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  • Lynne K
    replied
    Suefromwakey sounds good xx

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  • Suefromwakey
    replied
    I cannot even imagine 10 years in bed for Albert,

    Three weeks ago he took delivery of a specialised Lento Care Chair, he now wishes he'd got it in the summer, we had motors put on it for ease, it doesn't rise as its not needed, but it reclines and has a specialised foot rest, and has gel padding for man and beast, the raised sides help with his flail leg problem,

    Once I've got him ready at the hoist site (Bedroom) I am able to push him into the conservatory (we have laminate floors) with relative ease - he sits in it for about 14 hours a day - he feels he's in the garden, its bright and airy - I cannot imagine looking at the same walls over time. We are of course on one floor.

    Graham how do you pass your day in the same room all the time?

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  • Lynne K
    replied
    Graham I too an wondering why 10 not out of bed. Looking forward to reading your story xx

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  • Mary C
    replied
    Graham
    I was also thinking what 10 years in bed feels like.I admit to spending more time in bed in the last few months as it’s more comfortable than my armchair or wheelchair.
    I also used to work as a carer in residential care years ago and we always encouraged people to get out of bed for a change of position, change of scene etc.Of course people can decide for themselves if they want to stay in bed if they have the mental capacity.

    The problem is when working with older people being bedbound caused all sorts of physical problems for them such as sore pressure areas, constipation,poor appetite ,poor fluid intake, low mood to name a few.They also missed out on social interaction and some became really angry or just disinterested in anything.
    Not a criticism but rather wondering like EvelynMW what 10 years in bed feels like
    Best wishes
    Mary

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  • EvelynMW
    replied
    Thank you all. Yesterday i walked much better and some things seem easier today. As so many say, take each day as it comes.

    Graham, 10 years in bed? I cannot imagine how that feels - would love to know your story. As a care worker for a while, i had 2 customers who spent most days in bed; 1 was lifted out on a hoist for bits of the day, but was still waiting for a suitable wheel chair to get out of the house. The other was so unwell, i doubt if she even knew were she was. Being in bed 100% whole in mind must be extremely tough, i feel for you.

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  • Olivia H
    replied
    Hopefully Evelyn just a not so good day, even with a slow/steady progression some days energy/mobility can fluctuate.
    I too love 'walking' my dogs, but my walking deteriorated pretty quickly...however, I can still comfortably use a mobility scooter over 9 years on...this may be an option for you if doing longer walks x

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  • denise
    replied
    Evelyn it might just be air pollution or damp weather it can slow our breathing down and make us more tired.. be determined to get out and enjoy yourself. I'm definitely going to get out more.
    💞😘

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  • Graham
    replied
    I have not been out of bed now for 10 years. I think I have MND but I may just be lazy, as two nurses pointed out a while back?

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  • Mary C
    replied
    EvelynMW
    Best wishes that tomorrow’s walk goes better for you.I remember being away in Derbyshire and walked to get a paper.On the way back I came to a halt up a sloping road( before I knew I had MND or it was even a consideration).I hung on to a railing and literally hobbled back to the cottage I was staying.I also had a fall in the cottage .

    Like Ellie said you have to conserve what energy you have for your walk.Enjoy every step and being able to go out.We went to Stratford Upon Avon today for a wheelchair ride for me.It was just lovely being out and the sun shone.By the time we got back I was shattered despite being pushed in my manual chair.

    Now to find a film to watch this evening…won’t be staying up late .
    Hope tomorrows walk goes better for you.
    ​​​​​​​Mary

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  • matthew55
    replied
    Except when I go out I just see the ground. 😉😂😁😍xx

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