Page 2 of 4 FirstFirst 1234 LastLast
Results 11 to 20 of 32

Thread: When is it time………

  1. #11
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Posts
    873
    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
    Join Date
    Jun 2018
    Location
    South Coast
    Posts
    82
    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
    873
    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.

  4. #14
    Forum Member
    Join Date
    Jul 2019
    Location
    Bournemouth
    Posts
    129
    Update
    I had my catheter fitted on Thursday and I’m finding it very uncomfortable to sit or lean forward, is that to be expected?

  5. #15
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    1,690
    Oh Hayls, why are things never bloody easy for us??

    I hope you get an answer from someone with first-hand experience but in the meantime, could it be your bladder spasming because it's complaining about the balloon or could the tubing not have enough slack to allow for free movement perhaps?

    It's worth contacting your nurse in the morning if you're still uncomfortable. There's no blood in your urine, is there?

    And well done on going for it.

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

  6. #16
    Forum Member
    Join Date
    Jul 2019
    Location
    Bournemouth
    Posts
    129
    Oh Ellie, you are a real gem, thank you,
    Next instalment, ended up in a lot of pain and started bypassing it, District nurse came out and suspected it wasn’t positioned correctly, what a drama, hope it lasts the night, eeek

  7. #17
    Forum Member
    Join Date
    May 2018
    Posts
    418
    Oh no Hayls ! That's awful and so unfair, when you have brave enough to have this done .

    Hope you're more comfortable today and that they have been able to sort this out for you.

    Love and hugs,
    Debbie x

  8. #18
    Forum Member
    Join Date
    Jul 2019
    Location
    Bournemouth
    Posts
    129
    Aww thank you Debbie,
    Much more comfortable thank you, I’m now flowing freely and can sit forward, wohoo

  9. #19
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    1,690
    Oh that's a big improvement Hayls!!

    Although it's less of a woohoo and more of a wheeee

    Thanks for being our test dummy and I know you'll give us the real facts, warts & all!

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

  10. #20
    Forum Member matthew55's Avatar
    Join Date
    May 2020
    Location
    Near Manchester
    Posts
    105
    Ellie I hope that your husband realises just how lucky he is. 😉x

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •