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Thread: When is it time………

  1. #1
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    When is it time………

    Ok, I’m biting the bullet, my ability to stand is almost completely gone, I still have control but it’s getting exhausting going to the loo various times a day, I don’t know if pads are suitable but the thought of being sat in my chair letting it all out is going to be very difficult to do mentally, does anyone use a catheter, if so, how troublesome are they, do you think I’m giving up to easily? I don’t know what to do for the best

  2. #2
    Forum Member Ellie's Avatar
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    There is no such thing as "giving up too easily", just do what's right for you

    I go to the loo several times per day Hayls but I have carers, so, for me right now, it's very doable.

    I know ladies with catheters and, if necessary, I'd go down that route no problem. Like you, I think I'd find it hard to let go in a pad and I'd worry about my skin integrity.

    Mind you, catheters increase the risk of infection, whether a urinary one or an indwelling (suprapubic) catheter, but by following guidelines, the risk can be minimised.

    You could talk to your nurse about what's involved and have a think about it - you could even try one.

    Be kind to yourself Hayls!

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

  3. #3
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    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

  4. #4
    Forum Member Ellie's Avatar
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    Thanks Kate.

    Will the procedure be done with local anaesthetic or a light general?

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

  5. #5
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    Thank you Ellie and Kate,
    Kate, thank you for sharing your own dilemma, hope the path you’ve chosen works well for you.
    I’ll speak to my Nurse team and see what they suggest, the last thing I want to happen is to add more problems to the mixture but as you say Ellie, skin integrity is a huge concern as I use to be a carer and the sores that we had to treat I wouldn’t wish on my worst enemy, so glad you’ve got regular carers to help you regularly. Me and hubby aren’t in a routine so hydration can be anytime, maybe I need to get hubby in a routine, we both use to shift work so our working hours would be all sorts of times, we are still in old habits, doh
    Take care girlies

  6. #6
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    Hi Haylis and Kate,

    As Ellie said theres definitely no such thing as giving up too soon. I think us folks with MND are the opposite and tend to persevere with things until they are becoming unsafe.

    It took a bad fall to make me realise that my transfers were not working. I can no longer weight bear at all but my arms are strong enough to transfer sideways to the toilet from my wheelchair and then onto my shower chair. It is a big effort and at one point I was not drinking enough water to avoid going. My physio suggested a she wee or a female urinal thingy to use later in the day or when I am tired . At first I thought it was gross but I have got used to it like everything else and its reassuring to know you can use it when you're out as well. Not a problem at the moment unfortunately ! You do need some arm strength to use it however.

    It's such a problem but we shouldn't avoid staying well hydrated because of toilet worries!

    Take Care and stay safe,
    Love Debbie x

  7. #7
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    THe plan is to go for sedation if they decide I'm thin enough, and that will be decided on the day. I have an assessment sometime before then.
    Last edited by kd1; 25th May 2020 at 14:10. Reason: inaccuracy

  8. #8
    Forum Member Ellie's Avatar
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    Quote Originally Posted by kd1 View Post
    if they decide I'm thin enough
    Oh. My. Days.... How to make a girl feel good

    I know what they mean - it's more straightforward to cut through thin fat layers.

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

  9. #9
    Forum Member Lynne K's Avatar
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    Hayls, Kate, Deb and Ellie, I too have been thinking what to do in a similar situation that is looming. I’ve always tried to be one step ahead of my needs, but this one is more difficult for me to work through. I’m really struggling using my walker and don’t know how long my dodgy hands and arms are going to work. There isn’t room in our wet-room to side transfer. My OT said that it will be her plan to have me move on to an over the loo type of wheeled seat (from my wheelchair) before coming into the wet-room. I think that I must not look too far ahead so that I can use all of my head space and energy to deal with one of the associated problems at a time or else I could become overwhelmed. Love to all, 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.

  10. #10
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    Good morning Lynne,
    Yikes, it’s not an easy decision, I’m already at the point I need to think about it, right arm completely gone, right leg barely moveable, only thing enabling me to stand is my left leg and left hand gripping the rail but my left hand grip is getting weaker very quickly, I’ll speak to my nurse and see what they suggest, my OT is organising a T40 shower chair that will be able to go over the loo but I’d like to be able to go out without fear of where the loo is, I know I’m grasping on to my old abilities but I want to keep what abilities I have for as long as possible if I can, I don’t want to give up just yet72B2193D-6A0C-4A50-8B4D-6A7F37182088.jpg

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