Announcement

Collapse
No announcement yet.

Wheelchair Improvement

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Wheelchair Improvement

    I was well enough to make it to my Wheelchair check up today. I've had to wait a couple of months so my list of issues had become quite long.

    But today it was all sorted out!
    - Foam added to the back to bring the seat depth in, bring me forward and stop me falling down behind the cushion
    - golf ball controller because I was struggling with the narrow one
    - New cushion AT LAST. No more pain and numb bum!
    - calf strap so my legs no longer fall off the wheelchair foot plates

    Plus oiling for the loud squeaks and some general tweaks. Finally feeling it fits me and is comfortable.

    Absolutely shattered now though after being in bed for nearly 2 weeks....
    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.

    #2
    TinyLady at least something positive for you which must have been very encouraging. So glad you are more comfortable in your wheelchair now.

    Comment


      #3
      That's great news indeed Tiny - any idea what seat cushion you have? xx
      โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

      โ€‹

      Comment


        #4
        TinyLady woo hooo a result. Also I would like to know what seat pad you have. I get really bad nerve pain in one of my bum cheeks x
        Diagnosed May 2021 bulbar onset als.

        Comment


          #5
          So they initially gave me a Jay cushion with a gel pad in it. But it was not right. I sat on it while they were working on the wheelchair. Eventually I said, my bottom is still numb. I'm not comfortable...

          So they got a Vicair cushion. It's a bit like a beanbag and is full of little individual air bags... looks like it should be uncomfortable, but I liked it. The OT said some people love them and others hate them. I'm going to see how I get on, but seems ok so far. The gel was still too hard on my bottom ๐Ÿคฃ

          I'm also getting on very well with my repose bed topper. Back to long deep sleep.
          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


            #6
            TinyLady thats bloody brilliant. Bed and bum sorted ๐Ÿ™ƒ. Its lovely seeing things going your way for once. Please update how the vicair is once worn in etc. X
            Diagnosed May 2021 bulbar onset als.

            Comment


              #7
              I tried a few of the Jay cushions and only one suited me, turned out it's their most expensive one - it's nice to know that I've a discerning bottom ๐Ÿ˜

              I'd a Vicair for a while before my Jays and found it good until my legs needed more support than it could provide - enjoy sitting on teabags of air ๐Ÿ˜˜๐Ÿ˜˜
              โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              โ€‹

              Comment


                #8
                shelly21- yes, feeling more comfortable is so important. I was surprised how much the topper has helped.

                Ellie - we did have to sacrifice leg support, but the calf strap helps a bit and one leg is still fairly competent. I'll be interested to see if my bottom requests the luxury Jay upgrade when the time comes ๐Ÿคฃ
                but for now air tea bags are good!
                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


                  #9
                  TinyLady that's great news ๐Ÿ˜€ ๐Ÿ‘
                  Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive ๐Ÿ˜บ.

                  Comment


                    #10
                    Great to see you are getting things sorted. The wheelchair actually provides a real sense of independence but it has to be comfortable. The problem is you donโ€™t know until youโ€™ve been in it a while. The golf ball control sounds good, I might ask for one. Fingers crossed for good weather so we can get out and about.

                    Comment


                      #11
                      Yes, I love my wheelchair. In the 5 months since I got it I have become totally dependent on it, but travelled so many miles in it!! It was so squeaky and needed oiling!

                      Feeling much more comfortable on the new cushion today. The golf ball is so much easier to manipulate than a small joystick 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


                        #12
                        The wheelchair technicians don't always advertise this, but the joystick sensitivity can be tweaked on most drive controls, making it more responsive for less manual effort. ๐Ÿ‘๐Ÿ‘
                        โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                        โ€‹

                        Comment


                          #13
                          Ellie - yes I think our technician is quite good here (Wheelchair services here and orthotics have provided fantastic service) maybe because they are a private company contracted by the local NHS?

                          I think I needed something easier to grip rather than a change in sensitivity. Certainly the golf ball allows more fingers to help out and I feel more comfortable holding it.

                          Who doesn't like a knob with a reasonable girth.... sorry... couldn't resist. I hope Matthew looked down and had a chuckle, I miss his jokes xx
                          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


                            #14
                            ๐Ÿ˜…๐Ÿ˜…๐Ÿ˜…๐Ÿ˜…
                            Diagnosed May 2021 bulbar onset als.

                            Comment


                              #15
                              Not only Matthew.......

                              Doug x
                              Diagnosed April 2017

                              Comment

                              Working...
                              X