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DAD - MND diagnosed now. What next?

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    #91
    Originally posted by Ellie View Post
    Positive vibes Really good to hear of your Dad getting on well at the hospice - see, definitely not the hospices of old! xx
    Thank you Ellie! I am so glad you told me about this, it really helped us all not to freak out, e.g. when MND nurses letter showed us they were based at LOROS, I was able to confidently reassure my parents it was for support, not end, care.

    I am so pleased for Dad, they offered him so much - entertainment, physical activities, friendship, lunch and practical help - like the bed board. You are a gem me duck (as they say around these here parts)....
    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

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      #92
      A small update....

      Dad is pretty cheerful today. The list of things to aid him is growing, so, myself and Mum are attempting to go shopping tomorrow. Wish me luck. Dad has given me permission to use Mum's pin if needed (and kept asking me at random times today to see if I remembered it!) Far better to do this, so, we don't have 'cardmachine-gate-ageddon' again....

      Picked up an insulated mug (travel mug type) for him, only to get there and find my lovely sibling also had the same idea and brought one for him. Great minds, or, is it the other phrase..... So, I told him to keep both, one in use, one in the wash! He is well chuffed. We added long handled teaspoon to the list, when Mum said she knew she had one of those, much delving later and she triumphantly popped up with two! I felt so pleased for her. Maybe things aren't so bad for her after all? Or, maybe it's just sporadic problems and not all the time? It gives me a boost of hope and I felt I had my old Mum back today....

      A no on the 'key safe' sadly. At least I have my spare. Yawning away again as dog decided 2am was the right wake-up time. Doh! At least this time there weren't any 'presents' for me to clear up.... the furry minx!

      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

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        #93
        Big, small or any win is priceless. Go shop till you drop which depending on your pooch could be quite early

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          #94
          So true Bowler.... made my day.

          Ha! Yes. Doggy wake up call at 2 or 3am. Let dog out and stand freezing at back door squinting to see if she 'goes'. Try to go back to sleep. Listen to the blasted dog snoring. Finally get up at 5am. And dog is bouncing around full of energy! Use matchsticks to keep eyelids open whilst feeding her. Think longingly of bed.... have breakfast, do housework, and then off to parents after a late morning dog walk. Dog is curled up sleeping as I leave.... something not right somewhere.... hmmmmm......
          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

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            #95
            I want to come back as a dog. ๐Ÿ˜€x
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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              #96
              Originally posted by matthew55 View Post
              I want to come back as a dog. ๐Ÿ˜€x
              Ha! You would be well taken care of if you did!
              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


                #97
                Good morning,
                You can pick up a key safe if you want one from Argos, or on line. I had mine fitted as when I worked in a hospital several people had their doors broken to gain access for paramdedics!! At the same time I rented a lifeline from the local council so then got keysafe number on to their records.
                Hope you have a good day
                Best wishes
                Mary

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                  #98
                  Originally posted by Mary C View Post
                  Good morning,
                  You can pick up a key safe if you want one from Argos, or on line. I had mine fitted as when I worked in a hospital several people had their doors broken to gain access for paramdedics!! At the same time I rented a lifeline from the local council so then got keysafe number on to their records.
                  Hope you have a good day
                  Best wishes
                  Mary
                  Aw, thank you Mary C, good morning to you too.

                  I am having trouble convincing parents they might need a key safe, at the moment, trying my most convincing arguments as a 'just in case'. Didn't even think that a lifeline would also be useful....

                  Quick update:

                  Ticked off the list now:

                  1.Hot water dispenser (push button to give just the right amount of water for his hot drinks through the day)

                  2.Soft rubber bristled dishwasher brush (to clean thermal mugs)

                  3.J cloths in case brush isn't soft enough (says not to use anything abrasive to clean mugs) so can wrap around brush part if needed (if that makes sense)

                  4.Generic squeezable nasal spray (so Dad can try if this can be re-filled with saline solution)

                  5.New battery for his wrist watch

                  6.New plunger for toilet (I was welcomed with the words 'the toilet is blocked' as I stepped through the front door, and I thought the dog saga was traumatic!) Lets not go there, for those of a sensitive and nervous disposition....

                  7.Picked up Dad's Rizuoley meds (text from chemist to tell us it was ready to collect)

                  And a request to cut his fingernails and toenails today - don't think he trusts Mum to do this (she has cataracts forming). Although a bit nervous as I don't use clippers, we managed these. I may need my safety googles next time, from the way these flew around the room! Plus having to move the settee as the dog was rammed under it, trying to find a stray biscuit, trapped at the back.

                  Had to ring the shop as Mum wanted castors on the bed, so had to check, fortunately these were standard. Had to remind both that the fitter (for carpets) is measuring up tomorrow. Supposedly the carpets coming in June. But with regional lockdowns a possibility, who knows? Good job I reminded them, Mum told Dad that he would come between 11-1pm. Nope. The window of opportunity is 9am-1pm, so, hopefully they will have showered etc before his arrival... I think I need to be there..... There again, she was convinced today is Thursday..... hmmmm...
                  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


                    #99
                    Dad just rang. He's weighed himself, and he's lost half a stone in 2 weeks, although he is eating well (usually porridge breakfast, numerous cups of sweet milky tea, always a hot lunch (meat and veggies), with crumpets or apple pies for tea. And chocolate. Lots of chocolate.) I think we should ring the MND nurses, but, he is saying it must be muscle wastage. Surely not that fast???
                    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


                      Positive vibes Yes, weight loss can be that fast with MND and no, it's unlikely to be all muscle loss. My mantra is that MND is a hungry disease and usually we need to increase our calories - any idea if your dad has seen a Dietitian? If he hasn't, no harm doing so, stemming weight loss is important if at all possible 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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                        I literally cannot put on weight I can only just maintain a level between 10 and 11 stone. My nutritiouest is from a different planet it seems. ๐Ÿ˜€x
                        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 Yes, weight loss can be that fast with MND and no, it's unlikely to be all muscle loss. My mantra is that MND is a hungry disease and usually we need to increase our calories - any idea if your dad has seen a Dietitian? If he hasn't, no harm doing so, stemming weight loss is important if at all possible xx
                          Hello Ellie

                          I didn't realise something like weight loss would be so immediate. He's gone from 10.5 stone to 10 stone quite quickly.... Thank you, the lovely nurses have referred him to a Dietitian, but, wondering if I should pre-empt the home visit with buying something like Complan? Thanks for replying lovely 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


                            Originally posted by matthew55 View Post
                            I literally cannot put on weight I can only just maintain a level between 10 and 11 stone. My nutritiouest is from a different planet it seems. ๐Ÿ˜€x
                            Sounds like a constant struggle Matthew, you versus your metabolism, and hope you continue to maintain it.

                            Poor old Dad always used to be 11 stone, and the parents were a bit obsessive with weight watching, cutting back a bit if they gained more, eating a bit more if it went a little lower... I've seen him put away a decent plateful of meat, veggies, potatoes, followed by strawberries & cream, then eat chocolate just this Sunday. And still have something for tea later... This disease is strange...
                            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


                              Positive vibes If your dad would take a Complan, no harm in suggesting it - if he thinks of it as a drink for 'old, sick people', sell it as a milkshake!

                              Chase up the Dietitian if he hasn't heard soon. (sorry for adding another item to your long list!!) 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


                                My dietician was concerned about my weight loss and arranged lots of free samples of supplement drinks.Some need mixing with milk and others with water.I have to say I really donโ€™t like any so far!I try and keep calories up but itโ€™s hard with no appetite
                                Mary

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