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    House adaptations

    I have been told to start thinking about whether to adapt my home or to move to a more suitable property. My speech is poor, but I am still fully mobile at the moment. Where do I start? This is overwhelming me a bit. Has anyone moved from a house into a ground floor flat? I am wondering whether a retirement flat is the way to go? Any advice would be greatly welcomed.
    Bulbar onset diagnosed Nov 21. No speech but limbs ok so far.

    #2
    Hi Hope ,

    Its a huge and personal decision when you have to think about adaptations and there's such alot to consider. We decided to move to a ground floor apartment as our house would have needed alot of changes and we didn't qualify for any funding. However, we were looking to downsize anyway as our children had left home. ( although one came back as children do !)

    Also, my mobility was affected first and quite quickly so we hadn't much time to decide. We had a bathroom made into a wet room straight away and I can move around in my powerchair and drive in and out of the building.

    Good Luck with deciding because it can feel overwhelming and its very hard to plan for future needs,
    Love Debbie x

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      #3
      Deb Hi Debbie, my house will need a lot of changes and I don't qualify for funding either. As you say it is so hard to plan for future needs.

      Thank you for replying. x
      Bulbar onset diagnosed Nov 21. No speech but limbs ok so far.

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        #4
        When I was diagnosed I moved into a two bed terraced house to live as normal as long as I could. It's a personal choice thing. ®️👀😎😁xx
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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          #5
          I'm still being diagnosed and having to deal with urgent adaptations and someone coming Monday to discuss funding, so I know how unsettling it feels. At first it was just a stairlift mentioned but then they came out and saw me and realised it was probably too late for that. It was frightening to hear.

          I hope I can get some funding - I'm only 46 with husband and children here - I don't want to move. How did you find out there was no funding? Apparently I need a through floor lift and wetroom, which sounds expensive 😆

          Hope Have they said what type of adaptations you need to be thinking about?
          Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

          Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

          Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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            #6
            Hope we moved to a ground floor adapted flat but more adaptions need doing xx
            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
              Hi Hope, I guess the ideal is level access accommodation and a bathroom suitable to turn into a wetroom.
              The starting point is could your house be adapted to give you what you need….access to bedroom. Loo etc bearing in mind you may need to use a wheelchair etc.You need to plan bathroom carefully as you may need equipment or carers in the future.

              Maybe an OT could look at your house and offer advise?

              I live in an old semi detached house and couldn’t afford to move.At first I thought I would have to live downstairs.
              A friend who is a plumber offered suggestions of throughfloor lift(bought reconditioned one) , making a wetroom with bio bidet toilet and open shower with grab rails etc.
              It works for me and glad I researched options as 6 months post diagnosis I needed the lift etc.I know have to be wheeled to bathroom on shower chair which goes over the toilet.

              You need to look into funding any adaptations.MNDAssociation may offer small grant.You might be able to self fund, or other grants from council…..lengthy process.

              You could look at retirement flats and ensure they are wheelchair friendly.Shower cubicles are difficult as most MND people have mobility problems.level access is better.Room needed for equipment etc.
              Maybe start researching 1) could your current house be affordably adapted.2)What housing options are in your area to rent or buy.3) AskOT for advise4) Find out funding options ..talk to MNDAssociation.
              I remember going through this myself clearly…good luck.
              Best wishes
              Mary x

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                #8
                TinyLady i assume my savings will mean I am not eligible for funding but am not sure. I was just told I need to think about moving or adapting, I was not given any advice about adapting my home. There is so much to think about, isn’t there? x
                Bulbar onset diagnosed Nov 21. No speech but limbs ok so far.

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                  #9
                  Mary C thank you, your comments are very helpful. x
                  Bulbar onset diagnosed Nov 21. No speech but limbs ok so far.

                  Comment


                    #10
                    Hope - yes, so much to think about with no real idea what will be needed, when and for how long. That is even before the cost and funding is even considered.

                    I've already been told the adaptations I need (they came yesterday) and someone is coming from the council on Monday to discuss funding. Having worked hard all my life I have a nice house and some savings (which I have been living off as too disabled to work now) but I would be pretty sad to think they might need to be used up. Makes me think I shouldn't have been so careful with money all these years.

                    I'll let you know how I get on. My understanding is different councils have different rules too.
                    Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                    Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                    Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

                    Comment


                      #11
                      TinyLady i have worked all my life too and am still working, from home.I don’t have a huge amount of savings but I think they will exclude me from qualifying for help. Please do let me know how you get on. x
                      Bulbar onset diagnosed Nov 21. No speech but limbs ok so far.

                      Comment


                        #12
                        Hope We ended up moving to a bungalow. The kids bought into it totally, it was further to school but overall, a nicer and bigger house won them over 😏

                        For us, it was the right thing to do, at the right time, but I know not everybody can move house...

                        Good luck with figuring out your adaptations xx
                        ​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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                          #13
                          Originally posted by Deb View Post
                          I can move around in my powerchair and drive in and out of the building.
                          Hi Debbie. Can I ask what chair you have? Thanks
                          Richard

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                            #14
                            Hi richard . I have a salsa mini 2. I've had a few adjustments but now its comfortable enough to stay in all day and then transfer to my recliner in the evening.

                            Im able to get round our home in it . The marks on the walls and skirting boards are probably due to driver error xx

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                              #15
                              We sold our house when we were offered a social housing bungalow. I only enquired on the off chance and they said because we couldn't afford a suitable property we were eligible for the property.
                              It is a very expensive area we live in, this bungalow is lovely, very small though.
                              We paid to have level access put in, otherwise came fitted with a wet room.

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