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Thread: Living on my own

  1. #1
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    Living on my own

    I am living on my own and although I have great support from my family and friends, it's getting increasing difficult dealing with poor mobility problems. I hope to have a state lift installed next week which will help.
    I just wondered how others manage with MND when living on their own.

  2. #2
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    Hello Annie....I live alone and although it is very challenging I manage ok. I could not do anything without my rollator as I can’t walk unaided. It allows me to move about and I can also sit down when I get tired. I have a bedroom downstairs which is a great help.Because my house is small I am never far from a grab rail or a wall! Internet shopping is great as I can get anything I need.
    My arms are still ok which means I can do a lot sitting down. I also have lovely family and friends who help me when I need it. Staying independent for as long as possible is very important to me.I wish you the best Annie but there are no easy answers...love Dani

  3. #3
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    Hi Dani
    Thanks for reply. Your MND sounds on a par with mine. I too am unable to walk unaided. So far, it's just my legs that are affected. I am having a stair lift installed next week hopefully as going upstairs is a logistical nightmare. I am also going through a financial assessment to check if the Council will fund a baththroom downstairs ( which would be great!). I already have online shopping and I get my prescriptions delivered. I am trying to do as much as I can independently too - some days are easier than others. I know there are no easy answers especially as this disease is not the same for all. Take care. Annie

  4. #4
    Hi Annie,
    I'm living on my own and am in a similar situation with weak legs but OK arms. I too need a rollator to get about outside. I have just had a lift installed which makes getting upstairs much easier. I am doing what I can to prepare for things moving on, including practising using a wheelchair. I am lucky to have a partner living close by, but I try to be as independent as possible and aim to do so for as long as I can.
    John

  5. #5
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    Hi Annie, I had a stair lift fitted 9 weeks ago and after the first week I couldn't get off it by myself because at the bottom of the stairs my feet are just about off the floor which is ok I can stand from there.

    When I go to the top of the stairs my feet are flat on the floor on the landing and my knees are up a bit and I don't have good muscles in my thighs so I can't push of the seat on my own my husband has to pull me up, which has become so difficult and can take up to 5 or more pulls which hurts my shoulder and his back.

    It was so difficult last week we where trying for over half an hour. I didn't have my socks on with the bobbels so no grip on the carpet after so many trys I suggested getting a pair of yellow rubber gloves from the bathroom and putting them on my feet well after me crying with frustration earlier we ended up laughing so much because I just looked like big bird from sesamy street, I should have took a photo. But that still didn't work, a bath mat with foam on the back turned upside down finally worked. By this time we where both exhausted.

    Getting to the point I think the metal bar that it runs on would be better if it went further up past the top stair. I am going to ring the installer tomorrow to see if they can do anything about this problem. My O/T measured the difference the other day and there's a 4 inch difference from top to the bottom.

    I thought I'd mention this so as you don't have a similar problem which would be worse for you being on your own. Ask your installer where the bar finishes at the top before it's fitted.

    Best wishes Bernie x

  6. #6
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    Hello Annie
    After reading Bernie's reply I thought I would I add my own thoughts.
    Our stair-lift was originally fitted for my husband. He was heavy and I had a lot of problems helping him to get on and off the seat due to the different height between chairs and floors. We found a slide-board helped to transfer him to the stairlift chair from a normal chair. I have MND and now live alone and knowing how we had these problems, when I organised my electric wheelchair I chose one with a lift to the seat. This brings me up to the correct height to transfer. Once upstairs I find I can pull myself up using a tall walking frame.
    Hope this helps you.
    Good luck sorting out the best way forward for you both. Love Ann

  7. #7
    Forum Member Marigold's Avatar
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    Hi Annie,
    I too had a stair lift fitted a couple of months ago.
    The only way I can get on and off is by my husband lifting me. As a consequence of all the lifting he is doing, his back is suffering.
    We have now moved our bed downstairs next to my profile bed. It is just so much easier.
    I guess this only works if there is a downstairs loo etc!
    Also if you need to transfer with a board, make sure you get the installer to think about arms that lift up!
    Good luck,
    Marigold

  8. #8
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    Hi thank you to all for your thoughts and suggestions - it certainly helps! My Occupational Therapist will be here at the same time as the stair lift installed. I think it's to work out where I need grab handles to be. She has also talked about a bed downstairs (one to think if in the future). Having a bathroom downstairs will be a bonus- that might depend on my financial contribution to it. Thanks again. Annie x

  9. #9
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    Hi just an update on my stair lift. I rang them yesterday and explained the problem i have.
    They sent someone out today and he put some extension posts on it, and I can now get of at the top of the stairs on my own without all the struggling. ��

    I'll now be looking forward to using my shower and toilet instead of dreading it. X

  10. #10
    Forum Member Ellie's Avatar
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    Good speedy result Bernie.

    Do you have a sit-to-stand hoist for "just in case" days?

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

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