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    Thank you

    Hi All,

    I've been logging into the forum since my mum was diagnosed with MND in May 2020. You've all been such a huge source of inspiration, comfort and practical advice for me. I just wanted to say thank you so much (especially the lovely Ellie, who is so wonderfully warm, positive and courageous and who has at times bought me to tears both with her care and her gentle humour).

    My Mum's progression has been fairly quick. She lost her voice early on (she banked it, and that was great for a few months, but these days she's too tired to type), then her ability to swallow, to walk, and lately breathing has become very difficult. She has a PEG, which has been amazing, has an NIV at night (and now at times during the day - took a few weeks to get used to but has been such a blessing) and uses a wheelchair. She is so BRAVE, like all of you, and tries so hard to keep in good spirits.

    She hasn't logged on here...but I sometimes pass on your words of wisdom and tips on how to cope with the steady stream of new symptoms. Thank you all again for being such a wonderful community.

    Love,

    Deborah


    #2
    Deborah How lovely to meet you Deborah and a warm welcome to the forum. Thank you so much for your kind words - actually, you have reinforced the importance of letting everyone browse the forum, read posts to find advice and support, without having to become a forum member - not everyone is in the right frame of mind, nor wants to join a forum either ever or until the time is right..

    Does your lovely mum have any energy saving gadgets to help her type and communicate?

    Big hug to you and to your brave mum. Thanks again for posting.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

    ​

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      #3
      Thanks so much Ellie

      My mum has an ipad with Predictable, but now she tends to rely on some laminated sheets with letters on that speech and language gave her, as well as a unique sort of sign language we seem to have invented over the past few months (moving hands in breaststroke means she'd like a bath)! I'm wondering when's a good time to get on the case with an eye gaze, but I also don't want to overwhelm her as she gets so fatigued these days and the smallest movement exhausts her. Is there anything else in terms of energy savings devices I could be thinking about?

      Love,

      Deborah

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        #4
        I think eye gaze would be very helpful for your mum, Deborah - save her arms from being semaphores 😏 Buttons/switches might help, but can be frustratingly slow, which can defeat their purpose. Eye gaze just requires the user to sit and look!!

        It's fantastic that she can still have a bath but it must take a lot out of her? Would she take a shower some days and a bath on energy-rich days maybe? I presume she gets enough nutrition and hydration through her feeding tube to provide as much energy as possible.

        My best energy saving device nowadays is the standing hoist, other people will have theirs.

        We've had many hilarious times playing 20 questions or charades, with carers/family trying to figure out what on earth I wanted (usually in the bathroom, withouth my PC) πŸ˜‚πŸ˜‚ xx
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        ​

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          #5
          Hello Deborah and mum. Please give her our ​love. She is now in our thoughts xx

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            #6
            Thanks both. I'll do that πŸ™‚

            Ellie, the bathing situation has been tricky!! My mum absolutely loves having a bath and was adamant about not wanting a shower. The OT was advising a wet room conversion and we looked at other options, but in the end we persuaded the OT to help us get a ceiling track installed above the bath. It's been fantastic and helps no end!! She has one every evening still and washing is no trouble.

            That said, a few months on and we're now having to reduce the depth of the bath as my mum can't handle too much water - it makes her too breathless. Guessing something to do with the pressure.

            We tried the standing hoist...but my mum can't bear weight and quickly indicated she didn't want it anywhere near her!

            I'll definitely look at the eye gaze. Thanks 😘

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              #7
              I bathe in about 4 inches of warm water in the bath with two sponges, one for soap on and the other for soap off. πŸ‘πŸ€—πŸ˜šπŸ˜xx
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                #8
                What a lovely first post Deborah. A warm welcome to the forum from one Debra to another !

                Lots of love to you and your brave Mum... you sound like such a wonderful, caring daughter.

                Its lovely to hear she's enjoying her baths every day.

                Take Care of yourself too.
                Love Debbie x

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                  #9
                  Deborah Such a shame we have to meet Deborah. As you will have seen you can get great support and advice here. Love and hugs to you and your Mum.

                  Richard
                  Richard

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                    #10
                    Deborah, given that your mum enjoys her bath, there's no reason why she can't pop on the mask once settled in the bath - obvs keep the NIV machine well away from the water! Because lung function in ALS is restrictive, rather than obstructive (asthma, COPD etc.), it means our lungs don't expand fully, limiting the amount of oxygen can physically inhale, which causes breathlessness and, because this causes us to try to compensate for the lack of oxygen by breathing more rapidly (a.k.a. panic !!), it turns into a vicious cycle - so calming the breathing using NIV in the bath may be good.

                    Gold star to the OT for agreeing to the track hoist to the bath. πŸ‘πŸ‘πŸ‘ xx
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                    ​

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                      #11
                      Deborah welcome officially to the forum....it's great your such a strong advocate for your mum...supporting her with her preference which is so important. πŸ‘
                      Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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                        #12
                        Thanks for the lovely welcomes Ellie, great idea about using the NIV whilst my mum is in the bath - hadn't even thought of that and will try this evening!

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