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  1. #51
    Forum Member
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    Jul 2018
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    318
    Thanks everyone. Mick had another fall yesterday whllst I was at work. He had gone to get his debit card from his wallet on the tv unit to sponsor someone off facebook, when putting it back he turned and fell backwards. He pressed his alert who rang me at work. From getting the call to pulling on the drive I was 14 minutes. Luckily our neighbour was in and helped me get him up. he fell into his chrome stand fan which broke into two. He felt sore after, particularly his shoulder. The OT is coming tomorrow and I am going to be here. The financial person from the council is coming next week so hopefully stair lift wont be too long. It is a worry when I am working. I finish on the 19th for 6 weeks. I tend to stay close to home now so if I get a call I am not too far away,
    Well done Panniertank, you are doing well. Mick isnt fit enough to go out alone. I took him to the barbers saturday, we parked close, he used his stick and I held his other hand. If we are going any distance he uses his wheelchair of the scooter we purchased.

  2. #52
    Forum Member Gillette's Avatar
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    Mar 2019
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    Greater Manchester
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    421
    Hi Shrew, I'm so sorry that Mick had another fall yesterday. Falling can really eat away at confidence in walking. It's also hard on you as I imagine the risk is always in the back of your mind. I hope the OT offers practical help - I'll keep my fingers crossed for you both.
    Dina


    Trying to keep positive, but not always managing.

  3. #53
    Driving and supermarket trolley.

    Hi Panniertank

    Pushing a trolley around a supermarket, which I can still do - just, was what pointed me towards walkers. They are really good - very stable and you can sit down to rest.

    I agree about driving. My car seat is the most comfortable I have.

    Take care

    Doug

  4. #54
    Forum Member Ellie's Avatar
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    Oct 2012
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    3,251
    Oh Shrew I feel for you both

    I think the stage Mick is at now is a very difficult stage, knowing full well that, for his own safety, more mobility aids are inevitable. It's hard when our balance goes - we can't putt out our arms to break a fall and come crashing down like a felled tree.

    I hope he recovers quickly and stays safe.

    Good luck with the OT tomorrow.

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

  5. #55
    Forum Member Terry's Avatar
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    May 2012
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    UK
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    7,738
    Hi Shew and Mick;

    Hope you're ok and will soon repair. You can get automatic actuating fall alarms which don't require pressing, they work the same otherwise.

    Hugs, Terry

  6. #56
    Forum Member
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    Jul 2018
    Posts
    27
    Hello Paniertank.
    You do sound like you've had a tough time and some of your experiences sound very similar to mine, I had lost my mum to cancer and my dad developed dementia, and as an only child a lot was down to me. However, I am extremely lucky in that I have my husband. Even though my progression is slower than many, there are so many things I could not do in life, including getting out and about for days out, without him doing heavy tasks, carrying things, driving me about, doing lots of the housework etc etc. This illness often creeps up, and you don't realise your abilities are gradually eroding. I also had almost relentless insomnia at my time of diagnosis like you. However, whether people call it denial or wishful thinking, I decided the only way to survive, for me, was to keep essentially being me, who happens to have mnd, not mnd first and the person second. By all means adapt and get support, I use sticks in the house, got a mobility scooter for going out where I can. As others have said, GP and mnd clinics can refer you for things like a walker, grab rails in the house, counselling etc. My GP said I could use all the services of the local hospice if I wanted. I don't, but I can if I wish. I see my friends still as friends who care about me, not as carers. Everyone is different, but I needed to fight to keep my sense of self. My walking deteriorated very quickly indeed, but that was getting on for 7 years ago and things have slowed down a lot since then, I still plan for a future and intend to live life, albeit with adaptations and different ways of doing things, absolutely to the full. Being yourself, your interests, hobbies, family and friends are all the things that make you both special and unique. Mnd is a thing, it's not me. I wish you the very best and there are some truly exceptional people on this forum who will always listen to eachother.
    Best wishes
    Olivia

  7. #57
    Forum Member
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    May 2019
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    38
    Oh well it is now 6months since my diagnosis and I still am very much in denial. I just can't believe or come to terms with the diagnosis and prognosis. As stated before, I live alone, and have no family members who can provide support. I am still waiting for quotes to adapt my house to be wheelchair accessible. But I still can't see how I will cope with living alone whilst disabled. I have been waiting for weeks and weeks to discuss that with a social worker and that meeting just isn't happening. I am terrified of alternative options such as moving to extra care or residential care homes. I have been through so much stress in recent years and I feel burned out. I am often struggling to cope with the basics of adult life, let alone all the massive decisions I am going to have to make whilst trying to come to terms with this cruel illness.

  8. #58
    Forum Member Terry's Avatar
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    May 2012
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    UK
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    Hi Panniertank;

    Life with Mnd is hard even for me a strong person with support so I can't imagine how it is for you.

    A couple of people have managed for quite a long time on there own, either through getting carers come in or employing a personal assistant or two.

    It HOT HOT HOT here in Suffolk, how are you copping with the heat?
    Best wishes, Terry

  9. #59
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    May 2019
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    Thank you Terry. I hope I can increase my strength and cope , like you say, with carer support etc. I am just about maintaining my independence at the moment at the early stages of MND but my partially fused spine due to my rheumatic condition, exacerbates things. I don,t find anything straightforward.
    I don't enjoy heatwaves or other extremes of weather. My favourite times of year are Spring and Autumn. Even with my windows open I can't cool my house at night, which doesn't help my chronic insomnia.

  10. #60
    Forum Member Terry's Avatar
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    May 2012
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    UK
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    Hi Panniertank;

    Unfortunately we can't control the weather and I don't think many like the extremes. I have a fan that blows over my and I can adjust as needed. I also listen to talking books in bed, they soon send me to sleep for a hour or two.

    Love Terry

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