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    District nurse and ot

    too dangerous to go upstairs to shower and bed..plan bed downstairs with hoist and kamode

    #2
    There are so many big decisions to make eh John. Hope the visit goes well

    Comment


      #3
      It’s what works for you.I started off thinking I would need to sleep downstairs but really didn’t want to.What made the difference was installation of a through floor lift and changing bathroom to a wet room.( We don’t have a downstairs shower just a loo and I wanted a daily shower)
      I really didn’t want a bed downstairs as it would mean it had to go into our lounge.For me this felt like I would have no privacy .I didn’t want visitors coming when I needed a commode etc.
      Each person has different ideas and often the limitations of our homes environmentally impacts on the decision.Hope you plan works for you .
      Best wishes
      Mary

      Comment


        #4
        We are also at the stage of what do we do.
        We have requested to move into adapted housing through the council, but we have our own house which my daughter would like to rent from us.
        Rather that than adapt the house for the short period I am alive.
        Diagnosed 2nd Jan 2020
        Both arms/shoulders affected, left worse than right.
        Progressive Muscular Atrophy suspected

        Comment


          #5
          Hi Beemer, I think it’s tricky to get a council house when you own your own property.There are rented extra sheltered housing schemes (in my area where the complexes have carers on site and accessible flats.) Guess each area is different.Is it worth ringing your council and speaking to housing needs Department to talk through if rehousing is possible for you.?.

          Is a through floor lift out of the question? Hope you get the problem sorted soon.
          Like you , I wondered if having the lift and wet room were worth it financially too given my prognosis but as I want to remain at home for however long I have we decided to just go ahead and get it done before I needed it.Very glad I did now as use both daily.
          Best Wishes
          Mary

          Comment


            #6
            Sorry to hear that John, better safe than sorry, I guess.

            Stairs can turn into stress-ridden foes, not only for ourselves, but for onlookers too...

            It's a hard one to do, but once you're all set up downstairs, it should remove some of the stress 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.

            Comment


              #7
              Originally posted by Mary C View Post
              Hi Beemer, I think it’s tricky to get a council house when you own your own property.There are rented extra sheltered housing schemes (in my area where the complexes have carers on site and accessible flats.) Guess each area is different.Is it worth ringing your council and speaking to housing needs Department to talk through if rehousing is possible for you.?.

              Is a through floor lift out of the question? Hope you get the problem sorted soon.
              Like you , I wondered if having the lift and wet room were worth it financially too given my prognosis but as I want to remain at home for however long I have we decided to just go ahead and get it done before I needed it.Very glad I did now as use both daily.
              Best Wishes
              Mary
              Hi Mary, we have applied, so we will just have to see.
              Through floor lift is not out of the question, but we are not sure if all the disruption to the house is worth it .
              Diagnosed 2nd Jan 2020
              Both arms/shoulders affected, left worse than right.
              Progressive Muscular Atrophy suspected

              Comment


                #8
                Hi Beemer, glad you have applied for alternative housing but I would follow that up with phone calls to housing needs department.You might also get a supportive letter from OT to support application.

                The lift I had installed caused minimum disruption and went from my dining room up to a spare bedroom.The finish is neat.I think it took 3-4 days to complete but no mess as fitter tidied up as he went along.I did go for a large refurbished lift in case I need a wheelchair that needs a lot of room.

                Once wetroom was finished I purchased a wash and dry bidet seat ( Bio Bidet 1000). to offer more independence using the toilet.
                My husband says he loves the wetroom( and bio bidet) and doesn’t see it as a waste of money as it’s made life easier enabling us to stay in what we thought was an unsuitable house.
                Keep researching your options.
                Best wishes
                Mary

                Comment


                  #9
                  To Beemer..forgot to say the person that fitted our lift said he will buy it back when no longer needed( obviously for a fraction of the cost price.
                  Mary

                  Comment


                    #10
                    Mary C Did anyone find you a suitable shower chair/commode to fit over your bio-bidet loo yet? x
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                    Comment


                      #11
                      Hi Ellie, the saga continues.So a company sent a rep and he met with our OT.He measured up and went off to customise me a shower chair.It duly arrived this week and doesn’t fit.Rep came back and let’s hope he gets it right this time.
                      The bio bidet 1000 fits on to persons usual toilet..problem is all toilets are different shapes, heights etc.Also there needs to be a certain amount of space to ensure the seat is fitted in position.
                      I will let you know with a loud cheer when issue is sorted.At present I can get in loo independently but near the stage of wheeling over loo in a shower chair.
                      Best wishes
                      Mary

                      Comment


                        #12
                        Originally posted by Mary C View Post
                        I will let you know with a loud cheer when issue is sorted.
                        😊😊

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

                        Comment


                          #13
                          Originally posted by Beemer View Post
                          We are also at the stage of what do we do.
                          We have requested to move into adapted housing through the council, but we have our own house which my daughter would like to rent from us.
                          Rather that than adapt the house for the short period I am alive.
                          Good luck sorting out your housing needs, Mary’s suggestion of speaking to your local Council is a good one. But in my experience speaking to relevant people isn’t always available to us plebs. Could your OT make enquiries? Lynne
                          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.

                          Comment


                            #14
                            John, hope you can get something sorted.
                            Beemer, all the best with your application for adapted housing, I thought this was a non-starter but hope you have luck here. I do sympathise with not wanting to drastically alter a house to be useful for how long??
                            Diagnosed July 2020, ALS bulbar onset.

                            Comment


                              #15
                              Originally posted by Lynne K View Post

                              Good luck sorting out your housing needs, Mary’s suggestion of speaking to your local Council is a good one. But in my experience speaking to relevant people isn’t always available to us plebs. Could your OT make enquiries? Lynne
                              My OT suggested and filled in most of the application for re-housing Lynne. If you don't ask you don't get Heather, so I have nothing to lose really
                              Diagnosed 2nd Jan 2020
                              Both arms/shoulders affected, left worse than right.
                              Progressive Muscular Atrophy suspected

                              Comment

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