Announcement

Collapse
No announcement yet.

Hello. Looking for advice.

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

    Hello. Looking for advice.

    Good morning, my name is Mike and I was diagnosed with MND in November 2020. It mainly affects my lower limbs, I have gone from using a stick, through crutches, rollator and am now in a wheelchair. I do have weakness in my left arm. I have strong support from the local MND palliative care team, OT and physio, and not forgetting family and friends. I have been reading posts occasionally but have been hesitant in reaching out to others living with this disease.
    I have a question, I spend a lot of time sitting and am keen to experience a standing wheelchair or other standing device. Has anyone any experience of these?

    #2
    Mike my husband is the same as in hesitancy in even seeing anyone else with MND - he just doesn't want to see it, hear about it, nothing, I don't think it's denial as he's fully aware of where this is going,

    He spends about 15 hours a day in his "Lento Care Chair" which we had upgraded to be motorised for reclining its been a great purchase and makes it easier for me to move him about the place, the other 9 hours he's in bed so I can't say anything about other equipment available but one thing I would say is be mindful if you purchase anything as it could soon be disfunctional for you and costly,

    Regards, Sue

    Husband Albert diagnosed PMA Feb 21

    Comment


      #3
      Miker A warm welcome to the forum Mike.

      I used to have a weekly stand in the gym of my hospice in a 'standing frame', which I enjoyed (funny what passes for enjoyment these days 😏)

      It looked like this:

      Standing frame.jpg

      However, even basic models are expensive.

      Nowadays all of my standing is done in my Reacher (formely known as a standing hoist 😉) which I use for all my transfers. Although it's on wheels, I wouldn't exactly use it to tour the house in it, although I have stood at a window having a good look out. The bonus of a standing hoist is, once needed, it's provided by your OT.

      A pal of mine had a Genie standing wheelchair and used it a fair bit - he bought it second hand - obviously it's much more versatile and mobile than a semi-static 'stander', for which you need good weight bearing.

      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


        #4
        HI

        We got a Mo Lift Quick Raiser, it is a stand aid. Supplied by the OP at no cost.

        Thomas likes it as he can still use his legs and the back sling supports him to stand straight up.

        You shouldn't use it to move around for safety and someone else has to guide it.
        Donna

        Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.

        Comment


          #5
          Originally posted by DeeH View Post
          HI

          We got a Mo Lift Quick Raiser, it is a stand aid. Supplied by the OP at no cost.

          Thomas likes it as he can still use his legs and the back sling supports him to stand straight up.

          You shouldn't use it to move around for safety and someone else has to guide it.
          I can vouch for that. We ran into trouble moving it around. Very good for static transfers
          Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

          Comment


            #6
            Ellie that standing frame looks great, very secure
            Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

            Comment


              #7
              Originally posted by Rosemary6NT View Post
              Ellie that standing frame looks great, very secure
              Yes, it was Rosemary.

              I used to stand in it for 20-30mins at a time - lovely to be upright, giving my spine a good stretch and letting my stomach and intestines find a more 'normal' position 👍👍
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              Comment

              Working...
              X