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DAD - MND diagnosed now. What next?

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    And the Oscar for best person of the year goes [email protected] vibes ๐Ÿค—๐Ÿ˜๐Ÿ˜˜๐Ÿ˜xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

    Comment


      Originally posted by Ellie View Post
      Positive vibes Progress and hope.

      It's good to have some sort of foot stool for your dad to rest his feet when sleeping in the RR. It can put too much pressure on weak ankle and leg muscles, causing pain, if feet are 'dangling' unsupported off the end of the chair. xx
      Ellie

      Thank you Ellie - he does have one with his existing chair, but, I am wondering if the new chair will have a built-in one...? We will keep this in mind and use it to make sure he is ok. You are an absolute treasure with a lot of excellent info, ta very much.
      Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

      Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

      Comment


        Originally posted by matthew55 View Post
        And the Oscar for best person of the year goes [email protected] vibes ๐Ÿค—๐Ÿ˜๐Ÿ˜˜๐Ÿ˜xx
        Ha! Thanks young matt! xx
        Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

        Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

        Comment


          I have a coffee table in front of my RR chair and have a cushion on รฎt so that when I put the leg part of my chair up I can rest my ankles and feet. I need to put my feet up or I get fluid retention but doing so without the coffee table hurt my ankles as the raise up piece finishes above my ankle joints. A design fault Iโ€™m sure. Lynne
          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


            Originally posted by Positive vibes View Post
            I am wondering if the new chair will have a built-in one...
            The leg rest won't be long enough to support your dad's ankles and feet nor, depending on his height, the end of his leg, so, as most of us get some degree of foot drop, his feet won't be self-supporting, hence pain. (my feet look like I'm a ballerina on pointe !) xx

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

            โ€‹

            Comment


              [QUOTE=Ellie;n56408]
              (my feet look like I'm a ballerina on points)

              I really should find my own description and not be a copy cat๐Ÿคฃ but my feet look just like that too! Great comparison Ellie ! ๐Ÿ’ƒ

              PV When I'm in my riser recliner I get a sort of burning pain after a while so I use an additional footstool. The footrest on the chair isn't long enough but its comfortable for a couple of hours. I really hope your dad gets used to a rr and finds it comfortable.

              Your parents are so lucky to have you looking after them... you attention to detail is amazing !
              I know its easier said than done but please please look after yourself too.

              Love Debbie x


              Comment


                Originally posted by Lynne K View Post
                I have a coffee table in front of my RR chair and have a cushion on รฎt so that when I put the leg part of my chair up I can rest my ankles and feet. I need to put my feet up or I get fluid retention but doing so without the coffee table hurt my ankles as the raise up piece finishes above my ankle joints. A design fault Iโ€™m sure. Lynne
                Lynne K

                Thank you Lynne - now I am getting my head around this... I have noticed some fluid retention in Dad's right foot (his weak side) when I was doing his mani-pedi... so I will ask him to try raising his feet more on his existing footstool....
                Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

                Comment


                  Originally posted by Ellie View Post
                  The leg rest won't be long enough to support your dad's ankles and feet nor, depending on his height, the end of his leg, so, as most of us get some degree of foot drop, his feet won't be self-supporting, hence pain. (my feet look like I'm a ballerina on pointe !) xx
                  Ellie

                  Oh, thanks Ellie. This sounds painful, this is really descriptive, so I can picture what you mean... I think he is at the point of starting foot drop now, as he shuffles rather than lifts his feet to walk... cheers lovely xx
                  Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                  Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

                  Comment


                    [QUOTE=Deb;n56444]
                    Originally posted by Ellie View Post
                    (my feet look like I'm a ballerina on points)

                    I really should find my own description and not be a copy cat๐Ÿคฃ but my feet look just like that too! Great comparison Ellie ! ๐Ÿ’ƒ

                    PV When I'm in my riser recliner I get a sort of burning pain after a while so I use an additional footstool. The footrest on the chair isn't long enough but its comfortable for a couple of hours. I really hope your dad gets used to a rr and finds it comfortable.

                    Your parents are so lucky to have you looking after them... you attention to detail is amazing !
                    I know its easier said than done but please please look after yourself too.

                    Love Debbie x

                    Deb

                    Thanks Debbie x

                    You are all so helpful on here, whilst we are complete novices and playing catch up with his symptoms all the time... I hope he does take to it too.

                    Ha! There is a fine line between attention to detail/anal and I think I cross backwards and forwards over that constantly....

                    You are very kind, but, due to a lot of things I do find it hard to care about me, much easier to forget and look after someone else to be honest...

                    Love to you too Debbie x
                    Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                    Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

                    Comment


                      A quick one, for a change...

                      Dad is having a HENS nurse on Tuesday next, showing him options of feeding tubes. I noted he is complaining of struggling to swallow and bemoaning the fact of enjoying the taste of my brother's lovely cooking, yet, taking too long to eat, and not being able to finish it... he is seeing consultant and nurse on his own today at LOROS where they are again discussing feeding tube options. They hope to persuade him into NG, and I think my absence is needed, so he isn't putting on a brave front... hope it works as its the least invasive option...

                      Local hospital appt for breathing test has been changed from mid July to next Monday... as I noted his breathing becoming audible in the afternoons now.

                      Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                      Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

                      Comment


                        Another thing.

                        Dad is now saying his Riz is causing nausea (one of it's side effects), so, I am concerned that he will be stopping taking this. Worrying as it feels like he is making an active choice not to prolong his life... I suppose it doesn't suit everyone though. He has been taking it since April, so a good couple of months, and I would have hoped any side effects would have settled down by now.

                        Feels like everything they are prescribing or proscribing, he is going to refuse - first the carbocisteine, now its the Rilizulole stuff, and he isn't that enthusiastic about taking the protein drinks to build him up. I know its his right to refuse, but, it feels like the beginning of the end...

                        Got back to theirs after dropping Dad off at LOROS (he let me drive there, and I will pick him up), Mum revealed he isn't even using the nebuliser now, he isn't walking since his fall and he isn't doing the physio exercises either.

                        Not sure that he will even accept a feeding tube. I will just keep my fingers crossed that he does because the alternative is too scary to think about...sorry, this is making me weepy...

                        Have to kick myself up the backside, remember its his choice to live how he wants, not mine. I would hate to think he is miserable if the meds are making him feel nausea, and the knock on effect on his appetite - I guess he is weighing up now what he wants his quality of life to look like. Not just taking advice from the medics as gospel....
                        Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                        Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

                        Comment


                          I no longer take Rizole for months now and have to report that MND progresses with or without. It's a choice of a few more months and I don't want them. ๐Ÿค—๐Ÿ˜˜๐Ÿ˜๐Ÿ˜xx
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

                          Comment


                            Originally posted by matthew55 View Post
                            I no longer take Rizole for months now and have to report that MND progresses with or without. It's a choice of a few more months and I don't want them. ๐Ÿค—๐Ÿ˜˜๐Ÿ˜๐Ÿ˜xx
                            matthew55

                            I understand why now... xxx

                            Dad got back and said Dr felt feeding tubes may not even be suitable for him, things are progressing so fast, although they still think NG is the way to go. He isn't keen. No more carbocisteine. Atropine drops and anti-nausea meds now. Although at the moment he is still taking the Riz. He came out looking so thin and frail and leaning on a walker (3 wheeler) that the physio gave him. It was a bit of a shock. So I dived in and folded it into the boot of the car for him (accompanying nurse wanted to check it would fit & it did).

                            I asked him what he felt, and he shrugged and just said he accepted it. I can't help feeling the same as much as it feels like I am giving up too easily without a fight. It is so much of a struggle for him to adapt to this ever-changing illness. Every time I think we have reached a bit of a handle on it, the goal-posts have already moved. Forever playing catch-up. I think all the staff he has seen, however good and however kind they are, its over-whelming him. I am struggling to keep track of it all, never mind Dad, and as for poor Mum, she doesn't seem aware half the time (maybe that is a blessing in disguise) of what's going on.

                            I am realising that Dad is also forgetful now, and needs prompting to take supplements/meds, something he gets a bit irritated by as he is/was always sharp and on the ball mentally. This barista-steward disease is really taking it out of him.

                            I think if he was younger, had younger kids (rather than us decrepit lot), he would think and feel entirely differently, be motivated to fight this every step of the way, be there for the milestones, etc. and make memories. Go all out to juggle and tweak the meds vs the symptoms.

                            But. He's been there for a lot of milestones. He's looking backwards into the past. Grieving. He repeatedly says negative things, and, he just isn't in that generation where talking about it is the done thing.

                            The only bright spot is he has agreed to try an association visitor (phone appt)... I asked him to give it a go, and, if he doesn't like it, doesn't have to carry on - but secretly hoping it helps put a bit more of a fight in him...
                            Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                            Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

                            Comment


                              One of the reasons I got carers for my meds was I was forgetting them. My mum had Alzheimer's so secretly I hope I do as she was happy in her own world. It's everyone else who suffer with it. ๐Ÿค—๐Ÿ˜˜๐Ÿ˜๐Ÿ˜xc
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

                              Comment


                                Positive vibes How old is your Dad, if you don't mind me asking.

                                If he finds the side effects from Riluzole are too onerous, he can cut down to once per day, or stop it completely - if he doesn't want a feeding tube, I wouldn't be worried about him stopping Riluzole if it's sapping his energy. Life is too short... xx
                                โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                                โ€‹

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