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    #16
    Hi Andy,

    I understand the hesitancy and reluctance not to take meds, but don't be a martyr for too long, especially if your sleep is suffering...

    It's all such a balancing act isn't it?? (I'd make a great tightrope walker now if it weren't for this damn ALS )

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

    Comment

      #17
      Hi Pink.

      It's a pity they took away the Nippy as you'd been using it during the day.

      Our oxygen and carbon dioxide levels during the day can be quite different than overnight levels, but if you weren't using it you'll be no worse off.

      Hope you can find something to reduce your fatigue - there's always chocolate !

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

      Comment

        #18
        Hmm... Chocolate, now you're talking! And you can get it without prescription!

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          #19
          Or get your dietitian to prescribe Chocolate Fortisp 250ml drinks, they are quite nice and helps fill you up giving you a balanced diet.

          I take them out with me just incase I can't get suitable food or we get stuck in a traffic jam.

          Love Terry
          TB once said that "The forum is still the best source for friendship and information."

          It will only remain so if new people post and keep us updated on things that work or don't work and tips.

          Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

          Comment

            #20
            Dietitian? Don't have one of those. I'm eating OK, but have lost my appetite slightly.

            Comment

              #21
              You should have an assessment by a Dietitian if possible Pink. The clinics generally have them and usually there are community ones too (I guess it varies depending on where you live) 3 months is probably a bit of a wait to see the clinic Dietitian, especially as your appetite isn't 100% right now, but maybe your MND Nurse, Community Nurse or GP can get a Dietitian to visit you.

              The lack of appetite often goes hand in hand with fatigue - which can turn into a Catch 22 situation - as well as the 'dreaded' constipation!!

              Dietitians aren't just for those with swallowing issues & feeding tubes. They will give advice on how many calories we should eat and from which sources, and how much fluid intake is required. Often we don't eat enough to keep up with the extra energy demands our bodies have.

              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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                #22
                Thanks for that info Terry and Ellie. I didn't think about that. I will ask.

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                  #23
                  It is quite an important member of the team and is handy for many of us.

                  The speech therapist checks out the swallowing here, I am not sure why as you would have thought that a dietitian would be better.

                  Love Terry
                  TB once said that "The forum is still the best source for friendship and information."

                  It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                  Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                  Comment

                    #24
                    Originally posted by Terry View Post

                    The speech therapist checks out the swallowing here, I am not sure why as you would have thought that a dietitian would be better.


                    Just in case I confused people!!

                    I didn't mean that a Dietitian assesses anyone's swallow, but is there to give advice on calorie requirements and how to get them to those who can't physically eat enough if their swallow is compromised, and to prescribe supplementary feeds if necessary.

                    Hope that clarifies what I wrote.

                    Love Ellie.
                    Last edited by Ellie; 16 April 2018, 16:25.
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
                    ​

                    Comment

                      #25
                      And can add about drink, given that my lot suggested 2 L of water a day as they noticed I wasn't drinking very much and said it was important that I did.

                      It means I need to get to the toilet a lot , but I guess is that is a sign that I have not been drinking enough water for quite a long time
                      Warmly


                      Andy

                      ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – Campaign contact Winchester and Southampton branch, and trustee of the Association

                      "Things turn out the best for people who make the best of the way things turn out"

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                        #26
                        I know I don't drink enough. But with my bathroom being upstairs I don't like drinking too much as im forever going up and Down the stair lift! Not too long to wait for my downstairs wetroom now then I will make a point of drinking more

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                          #27
                          Do try to have atleast one and a half liters or more if you are active. I know that has repercussions but probably better than the things you can get if you don't drink enough.

                          OT could give you a temporary solution but i hope your new shower room will be open this week.

                          Love Terry
                          TB once said that "The forum is still the best source for friendship and information."

                          It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                          Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                          Comment

                            #28
                            Hi all,

                            I'm so so tired today. I had my best nights sleep that I can remember, nearly seven hours in one go and a couple of hours after that. I am taking a few more meds because of my bad back but nothing powerful.

                            I normally sleep poorly and have loads of energy.

                            Love Terry
                            TB once said that "The forum is still the best source for friendship and information."

                            It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                            Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                            Comment

                              #29
                              Thank you for commenting on this thread, I’ve read over time that tiredness can affect us all differently but I’ve been very lucky in that I find as the day goes on the tiredness increases however I seem to now have a whole day just feeling I have no energy and the following day can be good, my oximetry tests are 97% and my breathing is unaffected so far fingers crossed is this normal to have days just feeling tired or is there likely a cause? I’m still waiting for my PEG can reduced fluids affect me this way?

                              Comment

                                #30
                                Hi Hayls

                                There are various reasons why we might become tired more easily, as explained in section two of the factsheet below. Also, you might be feeling tired if you are not keeping hydrated or if you are not consuming enough calories, including the necessary vitamins and minerals. If you have a dietitian then that person should be able to give you deatailed advice about your diet and how it can be adjusted, if necessary.

                                Mnda factsheet about managing fatigue
                                http://https://static.mndassociation.org/app/uploads/2017/05/19135408/11D-managing-fatigue.pdf

                                Love
                                Kayleigh

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