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    Disillusional

    What a complete idiot am I writing on this very forum that I think Albert's plateaued,

    I get that when your living with it everyday and just making adjustments as they are needed you don't actually see the bigger picture and to be honest he has stopped falling but that's because he can't stand up anymore,

    I think I am in shock really, and talk about emotional, yesterday we went out locally for something to eat - I was sat opposite him whereas as home I sit at the side of him, It would appear his shoulders, arms and hands are going fast now, he was holding his cup with two hands and having to bend his neck down so he could get the fork to his mouth - he's never said about it being a problem so for him I think its a case of getting used to it,

    This has got me thinking/analysing everything from this time last year, stopped even a couple of steps, stopped standing, showers/toilet using a commode chair, cant clean his teeth/shave/comb his hair, hands are spasming, looks like his shoulders and arms now succumbing, using ceiling hoist and power wheelchair,

    Plateau it aint,

    Sue
    Husband Albert diagnosed PMA Feb 21

    #2
    Oh dear Sue, sorry about Albert’s decline. A big hug 🤗 from me, love Lynne xx
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

    I'm staying positive and taking each day as it comes.

    Comment


      #3
      My right arm is getting weaker by the day. I think it helps to think of it like waves. 6 normal are always followed by a seventh big wave. 😉😁😘😍xx
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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        #4
        Originally posted by Suefromwakey View Post
        I get that when your living with it everyday and just making adjustments as they are needed you don't actually see the bigger picture
        Nail on the head Sue.

        Motor neuron disorders, especially the slower progressing types, are insidious little buggers; those lower motor neurons are busily dying out of sight and you don't see the extent of the damage done nor the subtle adaptations made over time, when looking at it or living it and every single day...

        And Sue, you are far from being an idiot 🤗🤗😘

        ​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
          I've watched Stephen having more and more problems eating and lifting his arms. He's also dropped from 6ft2in to 5ft10in. His back and shoulders look more bent. His walking isnt so good and his balance is a bit off. Certainly wouldn't take a lot to knock him over. Hes having problems getting out of his chair and toilet and I have to get him up. He was able to leave his bed before, if I lifted his electric bed, but now he cant move his bedding to get out. I also thought things had slowed if not stopped. Suddenly things have worsened.

          🙁
          when i can think of something profound i will update this.

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            #6
            Sad to say but this illness only goes one way, sometimes fast and sometimes slow. 😢xx
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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              #7
              This I am learning Matthew ............I've been looking backwards 12 months now I am looking at the next 12 months.......... cant help it
              Husband Albert diagnosed PMA Feb 21

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                #8
                So sorry Sue to hear of Albert's decline and the last thing you are is an idiot !

                Even when we have accepted our diagnosis i think there is still a little denial about progression. Each time I lose a function or need a new piece of equipment It's a shock and it shouldn't be really because that's the nature of MND. It's harder for partners and carers to see because it just creeps up.

                I have so much admiration for you and other partners coping with everyday life, unselfishly caring and watching someone you love becoming more dependent. You all deserve to feel very proud of yourselves.

                Hugs to you xxx😘🤗

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                  #9
                  Deb
                  Well said Deb.
                  I notice my changes week after week .It seems like I get a piece of equipment and before long I need to plan the next scenario.
                  Well I won’t be writing Christmas cards this year as hands are weak and writing very slow and scribble.No more cake making either or wrapping pressies.If I am still here I will enter into the season of Advent and enjoy it as best as I can.

                  Its hard for my husband to witness the changes and for my friends and family.The worst so far has to be the dread of losing my voice as it’s started to weaken a lot now.I am trying to learn how to use predictable 6 App in preparation.

                  I guess like losing the ability to walk and now heading for inability to transfer much longer I just have to adapt to it.

                  So today was a good day and I reflect on the blessings I received.A compassionate husband who supports my care needs with patience .A lovely sister in law who keeps our home clean and produces lovely cakes to offer visitors.A ride to the shops.FaceTime session with my brother in Canada.A lovely garden view showing the remaining flowers .Phone calls from our son and daughter.Had a good on line counselling session.The list goes on.

                  Of course there are days when my husband and I shed a few tears but also we share laughter.Not pretending this isn’t a rough ride because it really is.

                  I look in the mirror and see my bony frame and see the ravages of MND .My hands look withered and my legs are so skinny.I can’t reach things and I drop things .No longer independently able to use the loo or shower.My smile is still there but some days there is a sadness and even fear interrupting my thoughts and I think it shows.

                  Without my husband and my sister in law I would have to go into a nursing home so I am so grateful to them for keeping me at home so far.Also I value the hospice team and community palliative care teams support as does my husband.

                  So Sue you are are so right when you look at the changes big and small that are happening to Albert .Without you partners, spouses, carers etc our lives would be a lot more unbearable.I acknowledge it’s a hard journey for those of you who care and support us and I for one am truly grateful.

                  Best wishes
                  Mary

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                    #10
                    Gosh - I hadn’t thought about Christmas cards. 🥲 if it’s not one thing it’s another. I have a 24 year old daughter and I wrote out her birthday card a few months ago in anticipation of not being able to write next February. I got a bit carried away and wrote all her cards up to 40!!! And a wedding one ( just in case!). It was difficult to do but hopefully it will bring a smile to her face every year.
                    I think it’s very difficult when you look back and realise you can’t do one thing or another and how it creeps up on you but I can still manage the toilet on my own and various other things so I must remain positive. also - I can still rely on you lot to make me smile each and every day!! Thank you one and all. Xx

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                      #11
                      Just a note on writing cards and yes, I know it's not the same but beggars can't be choosers 😉

                      I type up a personal message in cards and use a handwriting font, then print it out and stick it in the card and the recipients know they're my words.

                      I've a list for Christmas cards, family member's names, so it's just a cut and paste job 👍 xx
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      Comment


                        #12
                        Very organised Ellie
                        Best wishes
                        Maryx

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