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    #16
    Lynne

    think you need to let him have a sit in the wheelchair and walking frame and see how he gets on.

    to be honest I feel like going round a bashing him.

    love and hugs Denise xxx
    when i can think of something profound i will update this.

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      #17
      Originally posted by denise View Post
      Lynne

      think you need to let him have a sit in the wheelchair and walking frame and see how he gets on.

      to be honest I feel like going round a bashing him.

      love and hugs Denise xxx
      😂 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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        #18
        Lynne this has been and continues to be a massive learning curve - caring and all that ! - I am just so glad the boot is not on the other foot

        Best wishes
        Husband Albert diagnosed PMA Feb 21

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          #19
          I really admire partners of people living with MND. Their lives have totally changed, their plans for the future are no more and they have to watch the one they love struggling with basic tasks. Its not surprising they get frustrated.

          However, its so important to be able to contact someone quickly. My husband always has his mobile in his pocket even if he is just emptying the bins. We double check when I am on my riser recliner because I can't get off without him. I also have a buudi alarm bracelet which is really unobtrusive...I have mine on setting which can also detect falls so you have to be careful not to shake your wrist. 🤣 its got a link to our children's phones and I've given them a few false alarms... im the girl who cried 🐺

          Lynne .. well done for your diplomacy and patience with Steve. Im sure its the best way but its not always easy.
          Love and hugs,
          Debbie x

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            #20
            Thanks Debbie and Sue, a sleepy 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.

            Comment


              #21
              Lynne, huge respect how you are managing and coping with all these challenges. Sending love x
              Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                #22
                Thanks Heather 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.

                Comment


                  #23
                  I had a call from one of the Council OTs. She said that their waiting list is currently 15 weeks but she’s going to put me at the top. I was told to expect a call in about two weeks when appointments will be offered. They are going to do a thorough assessment of my needs including the front door, even mentioned a Closomat (if that’s how it’s spelled) toilet wash and dry thing. She said that they’ll look at my whole environment to see if there’s anyway else that couldn’t help me. At last somebody is on the ball. Lynne
                  Last edited by Lynne K; 16 June 2021, 12:42.
                  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


                    #24
                    Lynne K That's very welcome news indeed, thrilled for you Lynne. 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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                      #25
                      good news, the closomat toilets are very good

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                        #26
                        Thanks Shrew and Ellie 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.

                        Comment


                          #27
                          Great News Lynne,
                          I am a fan of wash and dry toilets and believe Clos o mat are a very good system
                          Missing my bio bidet whilst still in hospital...had a few raided eyebrows when I was explaining I don’t need laxatives at home as my bio bidet toilet system gives a jet of warm water and hey ho action happens😂
                          Hope you get all the gear to make your life easier soon
                          Best wishes
                          Mary x

                          Comment


                            #28
                            Thanks Mary. How are you, other than toilet problems? 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.

                            Comment


                              #29
                              Funny how we've gone from doors to toilets!
                              when i can think of something profound i will update this.

                              Comment


                                #30
                                It's all linked Denise - the back door goes over the loo 😉 😘
                                ​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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