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The day things changed

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    The day things changed

    It was a trying day on Monday. My partner struggled for about an hour to raise me from the commode with the Molift. When she finally succeeded we decided I would have to go back to bed as we wouldn’t be able to use that lift again. As luck would have it we’ve had a care package approved in the last few days and it will start tomorrow. I feel very apprehensive though about having intimate care from strangers though. I suppose I will get used to it 😕 as it is very necessary. I feel my disease is progressing very quickly and we are only just keeping up with the changes. How long will I be able to keep breathing as I now have to use NIV day as well as night? Scary.
    Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

    #2
    Rosemary6NT i feel there is nothing I can say other than giving you a big HUG
    Richard

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      #3
      richard thank you, gratefully received x
      Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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        #4
        We are here for you. ✌️😁🤗❤️xx
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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          #5
          Thanks Matthew x
          Last edited by Rosemary6NT; 25 January 2022, 07:08.
          Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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            #6
            Oh rosemary
            a huge hug from me. I know it must be horrible having others care for you. It's nice to have privacy and it's dreadful having it taken away. I suppose carers have seen everything and they are just doing their job. I hope you find some lovely people you soon get used to and trust 😘
            when i can think of something profound i will update this.

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              #7
              Sending gentle hugs Rosemary6NT xx
              Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

              Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

              Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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                #8
                Rosemary6NT sending hugs. This is what I dread the most. I live alone so how do I even cope when I begin to need help? x
                Bulbar onset diagnosed Nov 21. No speech but limbs ok so far.

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                  #9
                  denise TinyLady Hope thank you x. Waiting for my new carers to arrive now.
                  Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                    #10
                    Rosemary6NT it really is scary and we all have those thoughts....I know I do. Progression of MND is terrifying.

                    Having carers is a big deal....it's intimate.

                    For what it's worth when I was a carer I was anxious when having a new client...wanting to do all the right things....sometimes not getting it quite right....no matter how experienced.

                    However I built up good relationships with people I had the privilege to support and like to think I was kind and always had the person's dignity as paramount.

                    I'm hoping you have some great carers that you can rely on - everything they do for you leaves you with that energy for other things.

                    I always add that it's easy to say all the above and I'm conscious it is a huge deal so I'm not minimising at all...good luck...thinking of you🙏🤗
                    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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                      #11
                      Rosemary6NT sounds like the carers are arriving not a moment too soon, do hope they are nice and sensitive and helpful. Yes sounds like a real turning point, which I am having to accept as well, the need for help. Fortunately not as desperate need as you, as have just heard first agency approached cannot take me on. Fingers crossed for you today xx
                      Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                        #12
                        Rosemary6NT I think we all can understand the pre nerves of our first intimate carers. But maybe its more the thought and once the first is done it won't be so scary. Big love xx
                        Diagnosed May 2021 bulbar onset als.

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                          #13
                          Rosemary6NT Yesterday must have been so upsetting for you both, I'm sorry - there are no real words of comfort but many of us here have had days like that, so we know exactly what went through your minds.

                          I hope your OT will provide you with a hoist - you wear a sling and it's the hoist which does the lifting, not your partner or you, so it doesn't require her to pull any of your weight.

                          Really hope your morning went well. I'll bet you'll soon forget all about who is showering and drying you and rejoice in the extra energy you and your partner both have and remember, you're doing it for her too 😘😘
                          ​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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                            #14
                            LindaB (you must have been a wonderful carer x) Heather R shelly21 Ellie thanks. Yes, I am grateful to receive help and the women today have been very nice and kind. The big change is not being able to use the loo or commode when I need to 😭. At the moment having to force myself to rely on pads which is so hard 😫. They seem to be averse to leaving me in the “toileting” sling which means an inordinate number of transfers to get me to the commode 😕. I guess these are only teething troubles and things will smooth out. Number 1 on my list is a catheter and I’m avoiding number 2 as long as possible 😖! Another awkwardness is that I’m gay and I know that is not well thought of in some cultures/religions. Basically it’s all embarrassing 😳 and we know that embarrassment is particularly painful if you’re English 😂😂😂
                            Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                              #15
                              Hey being gay is okay in 2021. Anyone disagreeing needs to be shot. 🔫🏹⚰️😄xx
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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