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    Bonjour, I'm new on here.

    Hi from France, have been here 8 years now, started having balance problems about 3 years ago, many falls tests scans etc, was due to go to Bordeaux, (3 hours away for tests and diagnosis, fell 2 weeks before and broke my hip , had to have a complete replacement. finally got diagnosed in Bordeaux, June last year. have gone down hill a lot since then, am now in an electric wheelchair, can only stand with help to transfer to commode etc. I have great support here, have a carer comes in at 8am every morning, just to help out of bed and on and off commode, then another one comes in about 11am to wash or shower me ,this is getting more difficult. I would like to return to my native South Wales to be near family, finding a suitable property has been a huge problem. we have found a bungalow, should be complete in 2 weeks that looks ok but i am hitting all sorts of problems, Mainly that we cant get anything in place until we get there? Doctors, social serves etc all say you have to be here first to register, problem is I have to have an hospital type bed and a hoist in place before I can move. Catch 22? I know the journey over will be a logistical nightmare, getting me and our crazy dog back, but If we cant get things in place quick really don't know how we can manage? Hope I haven't bored you with my long story, any suggestions would be appreciated. regards Taff Price. x

    #2
    Hi
    Is it worth speaking to doctors surgery you intend registering with on arrival to speak to their practice manager to see how a hospital bed can be co ordinated to be with you at new address?( Back your request up with an email giving as much detail about your current care needs, mobility etc)
    Also is it worth talking to district nurses from the same surgery about your dilemma? (they can order hospital bed if you meet criteria) Ask about a hoist too.( again back up with email and keep details of names of people you speak to)

    Can you research the local hospice and talk to them too ?about offering you a home visit when you have an arrival date.

    Are you living alone?Can your family in Wales offer any temporary support when you are back in Wales?

    Could you book in for respite care to a nursing home while your new accommodation is being sorted( cost implication)Would need to be booked in advance .If nursing home is an option temporarily you could contact local social services requesting they assess your care needs once you are in Wales.( you might qualify for respite financial funding but depends on your situation...though it it your intention to make Wales your place of permanent residence)
    .
    Moving house to a bungalow sounds great but you need to ensure you can access bathroom etc if you need hoisting.
    Presume you will arrange help for your journey home ?
    Hope this helps?
    Best wishes
    Mary

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      #3
      Welcome Taff. Sounds like a heap of obstacles. All I would suggest is try and break into small chunks try not to get overwhelmed. Your dog will help to keep you sane. Good luck!
      Last edited by Gordan1111; 2 September 2021, 12:19.

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        #4
        Taff Price A warm welcome to the forum Taff.

        One our members, denise whose husband has an MND, recently returned to the UK (England), so she will be a mine of information for you.

        Love Ellie.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        ​

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          #5
          Hi Taft and welcome to our extensive family. Sorry to meet you but happy you found us! Stay Strong. πŸ€—πŸ˜πŸ™πŸ‘xx
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

          Comment


            #6
            Hi Taff, sorry that you have to join us and you have issues to deal with to move back home to Wales. Mary had experience working in the social work area before her diagnosis so take her advice with confidence. (I hope that’s ok to say Mary). I wonder if the local hospice to where your bungalow is would care for you temporarily until your bungalow has all of the gadgets you need and your care package is in place? Having a dog is great. I hope that sorting out his or her move turns out to be relatively easy for you and for him/her. Love Lynne x
            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

            I'm staying positive and taking each day as it comes.

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              #7
              Thanks for the replies, much appreciated. Taff

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                #8
                Taff Price welcome and good luck with all the bits of the jigsaw...you're in the right place for advice there's always someone been through similar.
                πŸ€πŸ‘πŸ˜‰
                Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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                  #9
                  HI

                  I bought the sit and stand riser from NRS vat free Β£459. Is on Amazon but pay vat.

                  It okay and rises in 4 stages up to about 10 inches. It okay for getting me up from seats including wheelchair so is useful. But it quite heavy for my wife to carry and cumbersome to pack. So not great for outdoor portable use

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