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    #91
    He's doing Engineering and she will do Neuroscience, wonder where she got that idea from 😍
    ​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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      #92
      Originally posted by Ellie View Post
      He's doing Engineering and she will do Neuroscience, wonder where she got that idea from 😍
      Ellie that sounds amazing and you've certainly brought up very good children. My husband is an engineer. My oldest daughter is studying (at the moment) economics and business. Definitely economics possibly without the business 🀣 xx

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        #93
        Can't believe im 51- it still just doesn't mean anything ,still think im 15,never going to be Einstein though, that stayed with my mams brothers

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          #94
          Im from Sunderland apparently comedians are afraid to play at the working men's clubs here ?

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            #95
            The running joke with people who brought food for my mam was, it always had luxury on the packaging, id smile when I got luxury rice pudding at Sainsbury's or she had chicken Korma with a lot of cream.
            ​​​​​​I remember chopping up a mango at the nursing home for her she said it was divine ,when her swallowing was better I would grate an Apple that worked well

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              #96
              I'm 39 and feel like I'm 18. I still have the same mates as I did then. Fellow northner. I love people from your neck of the woods. I've never quite understood the Sunderland/Newcastle thing πŸ™ˆπŸ™ˆ Gasp!!! It sounds like you have very fond memories of you beautiful Mum (Mam as you say further up north) own that always and keep those memories close xx

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                #97
                Not to be negative but things will get expensive when and if they decide to marry.πŸ˜‰πŸ€—πŸ˜πŸ˜˜xx
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                  #98
                  Originally posted by matthew55 View Post
                  Not to be negative but things will get expensive when and if they decide to marry.πŸ˜‰πŸ€—πŸ˜πŸ˜˜xx
                  I know 🀣🀣🀣 😬😬😬

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                    #99
                    N\cle -S\ld thing (football)is vanity nothing else which turned to hatred .
                    Im autistic(diagnosed 45 years after birth) ,so it's more than fondness about my mam, it's pure survival ,apparently Lord Cavendish born in the 1700s died 1790s was thought to be autistic, but he had finances !to prevent, what I and other people with autistic neurology suffer every day.
                    Hope you get enough sleep I remember what it's like!
                    Last edited by ; 12 August 2021, 21:40.

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                      The SLT nurse probably just has a list of people to visit and has to meet wonderful targets, we didn't see the one at the local hospital very often, all they could do was try to strongly encourage a P.E.G or thickener in drinks\ food .
                      finally !after 24 years, there are weight gain drinks with out cows breast milk, what they are called I can't remember, premenopause brain.

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                        Originally posted by Streetwise View Post
                        The SLT nurse probably just has a list of people to visit and has to meet wonderful targets, we didn't see the one at the local hospital very often, all they could do was try to strongly encourage a P.E.G or thickener in drinks\ food .
                        finally !after 24 years, there are weight gain drinks with out cows breast milk, what they are called I can't remember, premenopause brain.
                        Yes the SLT nurse explained to me there are really good build up drinks available now πŸ‘πŸ‘

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                          Hello everyone 😊😊

                          A little while since I last updated.

                          My Dad has been donated a wonderful riser recliner and it is proving to be very we'll received. My Dad looks much more comfortable in it.

                          As thought previously My Dad has refused the PEG. The MND nurse came yesterday and my Dad has confirmed this to her. In the last 4 weeks my Dad's weight has dropped from 48kg to 45.3kg. Obviously not sustainable at all. What we have come to realise is my Dad is suffering from severe constipation. The district nurses have been out and they are due again tomorrow. We are doing our best with taking food round but he just has no appetite. He has been prescribed build up drinks and pudding pots.

                          My Dad is seeming okay with getting around his bungalow which is good to see. He is quite wobbly at times and his balance seems a bit off but he will get a walking stick soon. He also has a small trolly - which he refuses to use. He did say to me the other day that his neck and both arms feel very strange. Not painful. He said his coordination is to pot in those places. His legs seem to be doing okay at the moment.

                          I am concerned about his cough. He just can't seem to do it and it's like he has something stuck in his throat. It must be so frustration not being able to "get it out" and uncomfortable. He is also using his inhaler. He's not used it really since he was a builder which he left 13 years ago.

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                            I’m sorry to hear about your dad's weight, Catherine.

                            When you say the nurses are coming again tomorrow, is that to deal with your dad’s constipation (enema, suppositories) That will be one factor in him not having an appetite and he must be very uncomfortable, poor man. Hopefully his bowels will get sorted from tomorrow.

                            Re his throat: sounds as if he's struggling with phlegm maybe? If he's dehydrated (which would tie in with swallow difficulties and him being constipated), his secretions get thicker and stickier and, with a weak cough, are very difficult to get up.

                            His GP can prescribe meds if that's what it is and you (or someone) could ask the nurses tomorrow about a saline nebuliser which loosens secretions.

                            Glad he's happy in his fancy armchair 😊


                            Big hug to you.

                            Love Ellie.
                            ​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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                              Ah, your dad defo needs a feeding tube of either PEG or RIG. Also he needs a cough assist machine by the sound of it. I think that his neurologist can refer him for that but a dietitian ought to eight be able to refer also or know who to ask. Can he get a referral to a breathing team also? That’s who handles the cough assist machines. I hope that all of this can be sorted out. About assistance for walking: I wouldn’t bother with a stick. A walker is more stable and potentially useful as they with come with a bag or one can be purchased to go on one.

                              It’s great about the rise and recliner. I wouldn’t be without mine. It cost me a fortune but has proven well worth it. Lovely Lynne x
                              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.

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                                Hi Ellie

                                Yes the nurses are coming to give an enema. They came last week and it hasn't worked. If it doesn't work this time we will only leave it a few days before asking them to come back out. He is taking laxido 2 - 3 times a day and a senna on an evening. Fingers crossed tomorrow works πŸ™

                                He definitely needs to drink more. I keep telling him. Or I keep saying "would you like a fresh water Dad".

                                The nebuliser sounds good. I shall ask about that.

                                Thanks Ellie xx

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