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Thread: MND is very sneaky!

  1. #11
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Jo Jo, maybe needing a hoist is soon needed. If you’re struggling now it would be of use. A sit to stand one would probably do the job. Other people on the forum know more about this subject than me so I won’t be offended by other suggestions. Love Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  2. #12
    Forum Member
    Join Date
    Oct 2019
    Thanks Lynne, hopefully when his OT is able to visit again she maybe able to help us out with something. Itís hard to believe this time last year we hadnít got a clue there was anything wrong.

  3. #13
    Forum Member
    Join Date
    Jul 2019
    Jo Jo, my local hospice OT got me an Easy Track over bed hoist 2 weeks ago as my community OT isnít allowed to visit, Easy Track doesnít require to be attached to walls or ceiling, has a maximum user weight of 28st ask about it, itís been my saviour and hubbyís back is thankful too
    Last edited by Hayls; 24th May 2020 at 13:00. Reason: Finger twitching

  4. #14
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Jojo, you need to consider yourself too - if you injure yourself, you'd both be in trouble, your partner would have nobody to help him. and you'd be laid up with a back injury You're in this together, he doesn't get to call all the shots...

    If the OT can't/won't visit, perhaps do a video call or a phone call and the aids can be delivered to the house.

    The issue with the standing hoist is that he stills needs to be sat at the edge of the bed, meaning no change on what's currently happening and the full (overhead) hoist really needs access from both sides of his bed to put the sling on, particularly as you're so petite.

    If he can shuffle his bum or turn on his side, with or without help, a slide sheet can be put under him which makes the pivot easier.

    Either way, it does sound like some changes need to be made which may be difficult to swallow. Many of us have been there and it's not easy, I'm sorry.

    Take care.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  5. #15
    Forum Member
    Join Date
    Oct 2019
    Thankyou Halys and Ellie I will certainly be asking the OT about this after the bank holiday.

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