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  • Maidinkent58
    replied
    I do believe living with MND is about adapting to a very different way of life, finding what works, having a cheery frame of mind (when possible of course), I have had countless bad days when I feel hopeless and empty, but the support of my husband helps me immensely, & I continue to keep a journal (as I have been a writer all my life, I have documented every emotion & thought since the onset of changes in 2016. Living with MND is a monumental challenge, & I will stare adversity in the face............because I like a challenge!! I WILL say 'why me? '..........but Iโ€™ll also say 'TRY ME !!'

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  • Crell
    replied
    Hi maidinkent58, my wife is also a maid of Kent.
    I was diagnosed (12 months after first symptoms) in March 2020 with c9orf72 familial ALS. I also had a spate of falls, exacerbated by the coinciding production of 25ltrs of cider! I now carry out a quick cost/benefit analysis: I can get upstairs after one whisky; can I manage it after two, three,..?
    Thankfully I can still talk (too much!), walk with a stick and foot-up splint, and just about play my many guitars.
    I keep repeating ad nauseam: this is not one disease, but several types of neurological degenerative diseases with different outcomes and rates of progression. My mother died aged 49, 5 years after diagnosis. I developed the disease aged 62 (the mean age of onset) and am progressing more slowly than my mother.

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  • jd58
    replied
    Welcome to our community forum

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  • matthew55
    replied
    I just ordered a blue one ๐Ÿ‘๐Ÿ˜x

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  • matthew55
    replied
    Brilliant thanks as my neck is in constant pain. Aren't we the lucky ones! ๐Ÿ˜x

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  • Maidinkent58
    replied
    Happy Tuesday fellow members, just an update on different solutions I have found, for my personal difficulties.

    As using a normal keyboard on my iMac became more difficult my husband showed me my iMac has already an 'Accessible keyboard ' built in. It is on screen and is very easy to operate with my 'one remaining working finger ', & the predictive text is used all the time.

    Drooping head has been a huge issue, due to muscles deteriorating in the neck, however, after much Internet surfing I have solved it. I bought these for trial and error...........& I can say they are both effective indoors and out, traveling in a WAV/car. They are for children traveling in a car, but comfortably fit an adult.
    Attached Files

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  • Maidinkent58
    replied
    Ohh I forgot to mention, I still have my speech too Ellie

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  • Maidinkent58
    replied
    Originally posted by Ellie View Post
    Great to hear you're positive and getting on with things.

    Re typing/PC use: have you had any contact with Speech & Language, OT, Assistive Technology, Environmental Control/Services about your difficulties using a keyboard? There are other ways to use keyboards which should be quicker than using one weak finger - I use eye gaze, for example.

    Love Ellie.
    Yes, I completed my voice banking shortly after diagnosis, & luckily my husband showed me my computer has a built in on screen keyboard specially for the disabled which is a godsend, so while I still can use this one finger all is good..........eye gaze later when necessary

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  • matthew55
    replied
    Hi there, yep we are all a little nutty in here ๐Ÿ˜‰

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  • denise
    replied
    Hi maid
    nice to meet you. Nice people on hear. We talk, laugh, rant and share all ฤทinds of things. I hope we all make you feel welcome.
    Denise xx

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  • Ellie
    replied
    Great to hear you're positive and getting on with things.

    Re typing/PC use: have you had any contact with Speech & Language, OT, Assistive Technology, Environmental Control/Services about your difficulties using a keyboard? There are other ways to use keyboards which should be quicker than using one weak finger - I use eye gaze, for example.

    Love Ellie.

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  • Maidinkent58
    replied
    Thank you all for your kind words and advice. I no longer walk, I figured in March of this year it is far safer to stay in my wheelchair all day. Although I can still stand if I'm on my 'Sara stedy'. Also, I now wear a neck brace, as it is now impossible to hold my head up. My MND team are extremely helpful, as are my husband and children. My daylight hours are spent educating myself on MND, and continuing with my 'typed' account of Life with MND, even though I can now use only one finger to type. I am hanging on to this for as long as I can !! I have 'written' enough to fill a book, it is this that keeps my head above water, in the hope that one day it might help others. Also, part of my ultimate plan is.......along with all my literature, is to give others the 'greatest gift of all', I am now a registered NHS donor. I have informed my nearest and dearest that I wish to help others to live, not one person........but as many as possible. I want to leave a legacy when my journey ends.

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  • Sueb
    replied
    Hi Maid

    Welcome to the forum. I care for my husband who was diagnosed July 2014. His shoulders and arms were the first parts of his body that he had problems with. I can understand your frustrations with not being able to do the things you’ve always done. Steve gets very frustrated. He loved DIY and had done most of the work on our new extensions, he was on the roof putting tiles on when he couldn’t let go of the hammer. He and the doctor thought it was carpal tunnel, which after having both hands done they found it was MND. He also has written his Dads story, his own story up until we got married and wants to complete part 2. He writes poems too and this has helped his mental state. He did karate, long distance walks, he was never still. He now uses eye gaze to write, use the internet etc. He had many falls and it is something you need to be very careful off. He’s now in a power chair and uses his foot to control it.
    You have been very proactive in getting things organised. We have done something things, power of attorney so I can sign things has Steve can’t hold a pen any longer., wills etc.
    Sue

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  • Annb
    replied
    To those who know Charles.
    He is quite poorly at present and feeling very low. I am sure he would appreciate some cheery PMs
    Ann

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  • Annb
    replied
    Hello Maid
    I can understand your present frustrations and fear having recently being given your diagnosis.
    I was diagnosed in August 17. I went for a carpal tunnel test and received my devastating news at my local hospital who just waved off to my car to return home to my dying husband for whom I cared. He passed away six weeks later. I was in total shock having to deal with both things at the same time and the disappointment that after more than three years as as a Carer I would not be getting my life back. I can fully understand your frustration at losing the hobbies you have loved all your life because that has happened to me too. I have lost the use of my right hand and my left is getting poorer. I live alone now with carers coming daily to shower and dress me. I am unable to cook and most of my meals are either cold or microwaved. I can only stand and as I cannot walk I use an in/out power chair. My independence has always been important to me and although I have family to help me I have found ways to do things for myself. It is the small things that give me pleasure now. I stress less about things I can't change. I have also learned to ask strangers for help when I am outing about and stuck. They are always delights to do so. A smile works wonders!
    It does takes time to adjust and you will still be in shock. Give yourself time to accept your situation and try to stay calm because stress is very bad for MND.
    I have recently discovered Dial-a-Ride in my area which allows me to go out on my own occasionally. It has taken me a year to sell my house and I will soon be moving to an adapted flat in an Independent Living complex where I will be on one level. The summer is coming and I will be able to go to my local park. It's the small things that matter to me now.
    Try to enjoy the simple things that you can still do, it will help.
    Take care
    Love ANN xxx

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