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Thread: In Denial

  1. #11
    Forum Member Ellie's Avatar
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    Oct 2012
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    Welcome to the Forum, Madge.

    You have come to the right place for empathy and understanding, for sure.

    Any one of us with an MND could have written your post - none of us ever envisaged our futures being as they now are.

    Everyone has good and bad days but hopefully many more good than bad and you've an audience here who can give you love and support on days when you need to rant and rave against the world!! Even when we're surrounded by family, we can feel alone with what we're going through.

    And don't ever feel bad about hating the hand you've been dealt - it's horrible - but with good support, both practical and emotional, you will get the most out of life.

    Stay safe.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  2. #12
    Forum Member
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    Apr 2020
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    7
    Hi Donkeyboy
    I am so sorry to hear of your struggles as I can imagine exercise is your life. We are told to exercise but is there too much exercise and when do you know when to stop. Itís devastating to read. I have read other messages on the forum and it amazes me how many people have done exercise and now have MND !!!
    I have cycled from London to Cambridge (60 miles) and the same distance from London to Southend-on-Sea and now I am lucky if I can do one minute on my exercise bike 😩
    I would be interested to know how you get on with acupuncture.
    Stay strong my friend.
    Love
    Madge

  3. #13
    Forum Member
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    Apr 2020
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    Hi Hayls
    Today I have made the effort and have moved from my comfy HSL chair to the garden bench chair. I am trying to find out if there is a HSL chair suitable for the garden but to no avail. Out of interest are you older or younger than me. I donít have so many down days like I did in the early stages but I am certainly not accepting this.
    I hope you can enjoy some sunshine 🌞
    Stay safe
    Madge x

  4. #14
    Forum Member
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    Apr 2020
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    Hello Ellie

    Itís good to hear that I have support at the touch of a button because those on this forum are the ones that really understand what we go through x hopefully some sun will make me feel better.

    Stay safe
    Madge x

  5. #15
    Forum Member
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    Jul 2019
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    Bournemouth
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    98
    Hello Madge,
    glad to here your enjoying the garden, the Squirrels and pigeons have me entertained and the neighbours moggy is teased by them all, I get the giggles watching the drama lol
    Ooo HSL, Iíve finally been able to order mine and some of their adjustable beds, Iím waiting for delivery, Iím hoping that they are just as comfy as they were in the showroom, if not, Iíll be convinced their air con in store have more than cool air in them, I went from trying a chair (so much more comfy than my current one) and not only buying it and 2 adjustable beds, headboards, my current bed is so painful after a few hours, I think Iím holding on to a dream that HSL will solve the issue but oh well, I can dream
    As for age, all my family always said I was all grown up by age 10, I firm believer you can any age you want to be, Iím young at heart but much older in mind and my body, well donít get me started lol
    Garden furniture is my next mission, hope you find an equivalent, if I do before you, Iíll definitely let you know,
    Enjoy the sunshine while we have it, all the best XxX

  6. #16
    Forum Member Lynne K's Avatar
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    Nov 2017
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    823
    Hi Panniertank, not noticed you about lately until this thread. Is everything ok? Lynne x
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  7. #17
    Forum Member
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    Apr 2020
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    Hello Hayls
    What a difference a day makes 🥶 my HSL chair I love as it enables me to get out of the chair on my own x my own bed is comfortable I love going to bed so I can stretch out but itís not very good to get me up and out of bed x enjoy your furniture when it arrives x likewise if I find garden furniture I will let you know. Stay safe and stay young x

  8. #18
    Forum Member
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    May 2019
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    Hello Lynne.Yes, I am ok. My MND symptoms seem to be progressing slowly. I hate being stuck in my house all day ( even before coronavirus ), especially as Spring was one of my favourite times for country walking and going to steam galas. But I am just about maintaining my independence. I have been struggling to do my food shopping on line but my social worker has provided help and now a specialist care company will do my food shopping for me. Just before the CV lockdown the builders finished converting my garage to a wheelchair accessible wetroom. I received very concerning news yesterday. My totally paralysed brother in law has gone into hospital and has been diagnosed with coronavirus. My sister also feels Ill and has some of those symptoms so she probably has it as well. They both have relatively mild symptoms ( he is taking oxygen but he is not on a ventilator) so I hope they will be ok. I am also concerned for my mum who is in a care home.
    Thank you for asking about me . I hope you are ok. Take care.

  9. #19
    Forum Member Lynne K's Avatar
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    Nov 2017
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    Hi Panniertank. Thanks for the update. It’s great that you now have a wet-room conversation. I hope that your mum stays safe. You must be very worried since all the sad news from care homes. I also hope that your sister and brother-in-law recovers quickly.

    I’m glad that you have got help for shopping. I got priority with Asda and a weekly regular slot up to October. Sainsbury’s contacted me too offering me priority but I’d already sorted my priority with Asda. The Government has unusually ticked a box there. I wish that they could be as good getting enough PPE to where it’s needed and have much more testing.

    It is hard staying in and as you’re alone harder for you than it is for me. But I feel jealous every morning when Steve goes out for his (7 - 8am) stroll around the local woods. The recent sunny warm day was particularly difficult for me. We have a very small back garden space but we have to cross the upstairs flats approach to their garden space to get to ours. They filled their space with a trampoline months ago so when they were sitting out it was across the shared path. I couldn’t have got passed. I wouldn’t have wanted to either because of the noise being made. They had music blaring out, too loud and not our choice. I’m looking forward to warmer weather then if I get out for an hour or so I’d be happy.

    Stay safe, love Lynne x
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

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