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Thread: When is it time………

  1. #11
    Forum Member Lynne K's Avatar
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    Nov 2017
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    830
    Thanks for your reply Hayls and good luck with your op’ happening quickly and safely, love Lynne x
    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
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    Jun 2018
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    Quote Originally Posted by kd1 View Post
    Hi Hayls,

    Not experience as such, but facing the same decision. I can weight-bear tolerably well, but am increasingly struggling to rise out of the wheelchair (and I already have all the lift a cushion can provide) . I've discussed this with my MND nurse, my OT, and the two carers I really trust. I've also had a phone consult with a urologist. I live alone. The consensus is that a suprapubic catheter is the way to go. I truly don't want to do this, but it is, for me, the least worst option. And as is so often the case with MND, it's not good to wait for the crisis to develop. So once the NHS starts moving again... There will be infections but scrupulous cleaning round the site, and stockpiling antibiotics should minimise the frequency and duration of these.
    Wish I was as confident as I sound!
    Kate
    I can weight bear but only walk A few steps and in the evening not even that.I have been loaned a mobile hoist by ot which we use for loo transfers using an over the loo chair and I'm waiting on a stand assist to get me out of my rec?liner . the whee?led over the loo chair has been invaluable . so even when I can't weight bear I can still use loo.

  3. #13
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Posts
    830
    Sounds great. Take care, Lynne x
    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.

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