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    Acceptance

    Something I just read made me realise that I need a power chair early just like everything else. It's part of letting go of the idea that I will ever be 'normal' again. 😟😢😞😁xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

    #2
    Oh Matthew. I got a walking frame for Stephen but he won't use it. I managed to get a wheelchair and he just looked at it and said he wouldn't get in it. Finally after a trip to the hospital and standing around he finally admitted he needs help.

    I don't think he will do the voice banking. We have a new tablet with a speech app but he hasn't touched it.

    I try to help but it's difficult to know what to do. 🙁

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      #3
      I was quite surprised that the NHS wheelchair service will provide a power chair to someone who can still walk… but I guess there are three reasons why it’s a good idea 1) they recognise that, sadly, ‘normal’ isn’t going to happen, 2) walking is incredibly exhausting even if you can manage it, 3) it’s good to practice using the chair before you need to use it full time. Worth doing I think 😀
      Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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        #4
        Denial does more damage than the most aggressive cancer. 😠👍🤗😀xx
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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          #5
          Yes. The more you fight and deny, the more exhausting it is for you and everyone around you, and you still end up having to accept anyway. This is how I cope with what's happening to the parents. Accept and not fight the crappy hand they have been dealt. Take things a day at a time. Dad's walking is slower and slower, but he is still doing it as long as he can, and still driving as long as he can. The day he gives up the car keys to us will be a sad one. The day he needs a chair or other aid to get around will be another sad milestone. But I am still working on him to have a nice morning or afternoon out. I've given up suggesting a full day trip for now.... just wanting to show him there are still things he can enjoy and look forward to.
          Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

          Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

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            #6
            No more driving for Stephen. He stopped in December and i had to start driving after more than 15-20 years. He still wants to go out. But I think it's because he recalls better times. He can't walk far and has had too many falls. He suggests places but even when he could drive it was a case of too tired to even get out of the car. Having to give up driving really was a knock back. The arrival of the wheelchair was another blow. It's so sad but if he doesn't try with the wheelchair he's not going to be leaving the house. ☹

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              #7
              Matthew, you'll have more independence, freedom and better safety in a 🦼 It's a new normal, that's all. 😘
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #8
                Originally posted by matthew55 View Post
                Something I just read made me realise that I need a power chair early just like everything else. It's part of letting go of the idea that I will ever be 'normal' again. 😟😢😞😁xx
                Go for it Mathew. I’m still getting around at home with my four wheeled walker but it takes determination and concentration. It won’t be long until I’m wheelchair bound. 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.

                Comment


                  #9
                  Hi All , my wheelchair was ordered via NHS in December and it arrived 6 months later (10 days ago).At the stage it was ordered I could walk with a stick a few yards.The OT referred me to wheelchair services in a rehab unit.I went there for an assessment and then waited another 5 months until it was ready for me by which time my mobility has deteriorated to a couple of metres with a frame and supervision.On bad days I can just transfer independently.
                  So my experience tells me get referred for a powered chair ASAP.
                  I practice using it in the house but limited space.Can’t get outdoors yet as need ramps to patio door and back door.Decided to purchase on line as when I spoke to the department that does the Ramps it seemed they wanted all my finance details.As I have savings I decided I wouldn't be eligible for funding towards it.
                  OT measured up,over threshold to ensure I order right height and width .

                  Matthew..hope you get your powered chair soon.
                  Best wishes
                  Mary

                  Comment


                    #10
                    Acceptance is challenging on our MND journey whether it is the initial diagnosis, another loss of function or a new piece of equipment. I find each new thing takes me time to come to terms with.

                    Matthew you have had to deal with so much in a short space of time but as Ellie says a powerchair brings you more freedom and independence. Before I had a powerchair I had a small electric wheelchair for around the home....unfortunately we had to buy it. Istill use it as it the same height as the bed, my recliner and toilet so easier for sideways transfers. I'll try and send you the link. I think it cost around 700.

                    It does take a while to get a powerchair sorted so it might be a good idea to get the ball rolling...I think of mine as my legs and it can go faster than my husband can walk ! ( great for if I'm in a strop !🤣)

                    Love Debbie x

                    Comment


                      #11
                      Brilliant advice as ever, I love you guys. 😍😘🤗😁xx
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                      Comment


                        #12
                        Originally posted by Mary C View Post
                        Hi All , my wheelchair was ordered via NHS in December and it arrived 6 months later (10 days ago)……..Can’t get outdoors yet as need ramps to patio door and back door.
                        Mary
                        That’s really good Mary. In Hertfordshire they will not provide the power chair until you can get in and out of the house with it. We have steps at the front door so we had to have a new rear patio, raised to door level, with a path which runs around the side of the house to the front and is on a gradient. The council said they would pay for it up to £1000. It cost £5500 and they said Oh because it costs over £1000 we won’t pay anything!

                        Richard
                        Richard

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                          #13
                          Hi Richard,
                          seems cheaper to buy a portable threshold ramp which I am researching.OT measured up for me and sent links of her suggestions for portable ramps.
                          The powered chair feels enormous but I can get so far from room to room.Next is to practice going in through floor lift to upstairs.Again a small landing area so let’s see how I do.
                          Deb....don’t forget to put link on of the smaller electric wheelchair please.
                          Best wishes
                          Mary

                          Comment


                            #14
                            I can get out of our living room door in my wheelchair just about, with some jiggling. But coming back into the living room is almost impossible. I’ve knocked bits of the foam armrest off and marked the neck support. I’m trying to think of how to not get stuck going’s back in but it’s a narrowish hallway with the living room door on the right side. No turning circle. Stupid Council designed flat. 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


                              #15
                              Originally posted by Mary C View Post
                              Next is to practice going in through floor lift to upstairs.Again a small landing area so let’s see how I do.
                              You might find that it's better to reverse into the lift downstairs, so you're facing the right way to exit into a smallish area. 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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