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    #46
    Tiredness can definitely affect one's voice, C, it tends to fade as the day goes on or the more one speaks. 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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      #47
      Ellie thank you xx

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        #48
        Originally posted by Ellie View Post
        Tiredness can definitely affect one's voice, C, it tends to fade as the day goes on or the more one speaks. xx
        My Dad has been in bed most nights at between 5 - 6pm and waking at 7am. We have wondered for a while why he should need so much sleep.

        On the other hand Dad has openly admitted he has been feeling very unwell for sometime. But didn't want to tell anyone as he thought he would get better.

        I told him - you are an absolute hero 🥰🥰

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          #49
          Daught21

          I feel the same way about my pops too... take care all of you xxx
          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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            #50
            Hello everyone 🤗🤗

            The wonderful nurse specialist came round to see my Dad today. She was really lovely and very informative.

            She is worried about my Dad's swallowing so a speech and language specialist will be coming imminently.

            His weight is also a worry 7 stone 7Ibs. I didn't realise it had dropped so low. He is quite good at wearing baggy clothes. So a dietician is also going to be in contact. Historically he's been between 11 - 12 stone.

            The problem with my Dad is that he never volunteers information so a good threateneing of behaviour is needed 🤣🤣

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              #51
              Thanks for the update, C.

              Did your dad give any feedback on how he thought the visit went once the nurse left?

              Like you, I'm concerned by his low weight and weight loss, so I hope that SLT appointment comes within days, not weeks...

              If he struggles with textures and chunks, maybe mashed, easy to swallow 'wet' foods would be better to try? I know it's not exactly the weather for mash & gravy or casseroles, but they can be easier to swallow, or cheesy omelettes etc. Meat can be quite difficult to swallow.

              Cream can be added to mash, eggs etc for extra calories and for 'wetness', whilst he's waiting for the SLT appt, when he'll have his swallow assessed. 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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                #52
                Daught21

                You might find this video useful.

                ​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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                  #53
                  Daught21

                  And finally, the MNDA produce a guide on swallowing issues, including recipes, which can be downloaded here
                  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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                    #54
                    Ellie thank you so much for the information. That was my next task In trying to find him something to eat that is high in calories. I've got family members scouting round supermarkets trying to find anything that will be suitable for him

                    Dad found the meeting very successful. He was having a laugh with the nurse and I really believe his mind has been put alot more at rest. The nurse has booked to come back in 3 weeks but any problems in the meantime she is only a phone call away. The speech therapist is due next week (as she is on holiday this week). Dad loves mash potatoes so I will take some round tomorrow with cream in. From what Dad has said he has gone off alot of things. He's always loved roast beef etc but he knows he can't eat it. He also needs to drink more. Am I correct in thinking pineapple juice is good? My brother has also bought some build up drinks for him but not sure if he has taken to them as they were only delivered today.

                    Xx

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                      #55
                      Originally posted by Daught21 View Post
                      Dad found the meeting very successful. He was having a laugh with the nurse and I really believe his mind has been put alot more at rest.
                      Oh, that's so good to hear!

                      Pineapple juice is good to help thin thick mucus, yes, but the importance of drinking enough water too can't be stressed enough, especially in this weather!

                      He could have his roast beef, blended, and mixed into mash and gravy maybe. 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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                        #56
                        Exactly what the nurse said today (about the water). I got him some bamboo straws so he is finding using those alot easier to dink with xx

                        I have a blender so I will take that over and get cooking 💕💕

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                          #57
                          Be inventive with mash. I used to have grainy mustard, onions, bacon, sausage infact anything can be combined with mash if it's chopped finely.
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                            #58
                            Originally posted by matthew55 View Post
                            Be inventive with mash. I used to have grainy mustard, onions, bacon, sausage infact anything can be combined with mash if it's chopped finely.
                            Yes such a good idea. Thank you Matthew 👍👍

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                              #59
                              It’s really weird but I struggle with mash, I manage a roast potato better than mash 🤷‍♀️
                              Janette x

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                                #60
                                Hi everyone

                                Ellie my Dad's voice definitely worsens as the day goes on. Post 2pm and its a struggle for him.

                                I've made my Dad a load of mash (to last him 2 weeks) with a load of butter / cream. With spring greens, wholegrain mustard, onions (fried in a load of butter). Any more suggestions - he has gone off meat!! He's always been a massive meat eater 🤣 so any suggestions welcome.

                                Thanks Matthew for the mash tattie tips 😊👍

                                My husband and I were taste testing all the way. My Dad being an Irish man - we didn't want to spoil his spuds!!

                                I was quite disappointed with his GP practice when I requested some build up drinks. There response was to do the above with cream etc and they were not willing to provide the drinks. To which I replied 'have you read my Dad's records 'of course they have' well hastent to say they sent some for him within the next hour (another good social elderly care right there).

                                On another note I receive a letter from the house of commands (my local MP in York) about a total reform of adult (particularly elderly) social care. Watch this space!! Happy to share the letter xx

                                Love to all 💕💕

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