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  • SarahWP
    replied
    Thanks Terry. I want a scooter for pootling around the shops & accompany my wife on dog walks. There’s a place nearby which sells, hires & also has reconditioned ones so we’re going to check that out soon. Thanks for your tips! xx

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  • SarahWP
    replied
    My wheelchair arrived today - the manual one. Looking forward to giving it a spin. So to speak! 😂

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  • Terry
    replied
    Hi Sarah and welcome to the forum,

    Sorry to hear of your recent diagnosis and all of us know how difficult that is.

    I had a gogo plus Pride scooter and a larger one that I used to use around the lanes.

    It all depends on what you want it for and how you will use it. If you want to put it in a car then a smaller one would be probably best.

    Please feel free to ask any questions or share things with us.

    Best wishes, Terry

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  • Sheila
    replied
    I love to hear any positve stories!! I have a little scooter as well, but I am finding the wheelchair a little more comfortable now. I have to stay more positive as I get bad anxiety.
    Love Sheila x

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  • SarahWP
    replied
    Hi Olivia. Thank you so much for the advice - & for giving me hope! I’m looking into a scooter for the same reason and that sounds perfect. We’re staying as positive as possible, not least as I’m learning that my mental state significantly affects my physical state. Thanks again for the hope. Love, Sarah xx

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  • Olivia H
    replied
    Hello Sarah. Hope you, and Sue, can stay positive, that really is a hugely important thing if you can do it. My pet dogs also help in that regard. My walking and balance are terrible, but, getting towards 8 years now and my hands and arms are good, and no dramatic changes, so there is hope. I use a boot scooter, which we can take out in the car, not too heavy, and does 14 miles on a battery charge.
    Love Olivia.

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  • SarahWP
    replied
    Thanks so much Debbie. You’re absolutely right - all the health visits we e had has been somewhat overwhelming- as welcome as they all are. I’m in Cardiff and will have access to an MND clinic so will receive excellent support, for which I am so grateful.

    Staying upright is becoming more of an issue as I’m increasingly unsteady on my feet. My OT is coming next week to discuss options with me.

    Thanks again for your welcome. Xx

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  • Deb
    replied
    Hi Sarah and welcome to the forum,

    I am so sorry for your diagnosis and I imagine, after just a month you are still reeling from the shock. It's good you've posted because this is a great place for support and practical advice. You seem to have a positive and proactive approach , and that will really help you too.

    I found the early days and the contact with the MND team totally overwhelming because there was so much advice but now my physio, nurse and OT are on my favourites contacts ( even if I am not on theres !) They are always there no matter how small the problem so I hope you get this support in place too.

    Take Care of yourself , Sarah and Sue too.
    Love Debbie x

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  • SarahWP
    replied
    Thanks all so much for your welcoming & encouraging messages. I will take all your advice on board - thank you. And Ellie - totally agree, take anything but my voice! But as you say, it is what it is. 13 years is amazing- you’ve given me hope, & that’s the only thing I really need right now. Thank you!! xx

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  • Ellie
    replied
    Hi Sarah and a warm welcome to you and Sue (and to the 4-legged pets )

    There is nothing comforting I can say about losing one's speech, I'm afraid. I always say (with experience) that I'd 'happily' live with all my disabilities, but please, just give me back my voice !!!! Anyway, it is what it is, I've just got to adapt & conquer...

    You said you have a wheelchair atm - is it a manual or power chair? Don't write off your house yet as being too small for a power chair - there are some mini chairs which, maybe with a bit of furniture moving/removing, may surprise you with their agility and small turning circles.

    As for giving you hope, well I am well into my 13th year living with ALS/MND - am totally dependent on others, but have raised my 2 children with my husband and enjoy my life.

    Is it how I thought my life would pan out? Absolutely not, but it is what it is and we make the most of it.

    Is it all plain sailing? Absolutely not. If I can give you advice, keep communicating with Sue, openly and honestly. I did counselling which helped me lots (hubby wouldn't but maybe Sue will?)

    And stay upright, as in don't fall!! Get the flu shot and the pneumonia PPV23 once-off vaccine.

    Love Ellie.

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  • Barry52
    replied
    Hi Sarah and welcome to the forum family.

    Sorry you have been diagnosed with MND but you will find support and advice here. I know the voice banking is laborious but it is worth the effort. Lynne refers to a walker and for safety I recommend a 4 wheel version. Social services may provide one but they tend to be 3 wheel versions. Falling is a big risk so if you google walker look for something lightweight for easy lifting into the car. You can get them weighing around 7kg. I know you are only 50 but remember that famous saying “pride comes before a fall”.

    You mentioned scooters and the choice is endless. Ask yourself what you will use it for. Is it just to go locally to the shops or will you want to be more adventurous and go on accessible walks. Some scooters fold or come apart in sections so they can be lifted into a car. I recommend going to a mobility shop where they won’t try a hard sell and they often have second hand ones and they will maintain it for you. I know from experience that batteries and chargers can fail and tyres get punctures so it is worth having a relationship with a local supplier.

    Best wishes,
    Barry

    Leave a comment:


  • Gillette
    replied
    Originally posted by SarahWP View Post
    Hi Lynsey. Thanks for your message - I’ll look your previous posts up. As it happens, we’ve built an extension on the house, to take advantage of the lovely view, & included a utility room with a shower - this was actually for the dogs but obviously it’s very useful for me now!! It’s a small house so no room for a wheelchair- not sure what I’ll do if I ever can’t walk at all. They’ve said I can have a stair lift tho. I don’t have a walker - will look those up. Thanks again for your message. X
    Hi Sarah and welcome to the forum no-one wants to need.

    I bought a four-wheeled walker when my walking was deteriorating and only managed to use it a couple of times due to my rate of deterioration. I considered a motorised scooter at the same time as the walker but realised that I wouldn't be able to manoeuvre my foot enough to get on it.

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  • Lynne K
    replied
    Sarah, if you are in the UK your OT or Physio would organise a walker for you through the local adult social care department. Lynne

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  • SarahWP
    replied
    Hi Lynsey. Thanks for your message - I’ll look your previous posts up. As it happens, we’ve built an extension on the house, to take advantage of the lovely view, & included a utility room with a shower - this was actually for the dogs but obviously it’s very useful for me now!! It’s a small house so no room for a wheelchair- not sure what I’ll do if I ever can’t walk at all. They’ve said I can have a stair lift tho. I don’t have a walker - will look those up. Thanks again for your message. X

    Leave a comment:


  • SarahWP
    replied
    Thanks Sheila for your message & encouragement. So sorry to hear about your husband. The thought of leaving my wife alone is one of the hardest things to come to terms with. Take care. Xx

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