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    #76
    Not quite Ray but one of the saddest things I've seen happen to Trevor is his complete change of taste. He used to love all fresh fruit and veg. He can now only enjoy bananas, tinned pears and peaches, mushy peas and just a few finely chopped sprouts. It's the taste, not the texture of all other fruit and veg that is not lost so much as changed to real dislike. He's also sudden developed a real hatred of scrambled egg. There are so many things that he can't stand any more that he is wanting to be completely peg fed now rather than just partially which is such a shame. One more pleasure just obliterated by MMD.
    Incidentally, he has taken riluzole from the outset on March 2014.

    I hope this is of some use. Nettie.
    Last edited by Nettie B; 8 January 2015, 16:37.

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      #77
      Hi Ray x My dad's eating habits changed before he was on any medication for MND. He'd always been a fairly healthy eater, but he seemed to only enjoy eating sweet things. I've no idea why to be honest. tc x Becky

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        #78
        hi,
        ray would it be so difficult for you to use some manners when asking the people of the forum for help, please. i also seem to remember on one of your threads nettie asked you a very similar question. instead of politely saying you didnt have an answer the toys came out of the pram, again. i did find netties question and went to copy and paste your reply here but conveniently they've been edited out. i think it went something like `i dont have time for that crap´or something similar. its good job not everybody is like you and that they have time for others. regarding netties question if a similar thing is happening to your taste buds thats called karma.
        thank you
        mik

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          #79
          Thanks folks for your replies,..but as only 6 out of you answered, i can't assess if it's normal,
          I did say,...placebo aside,..cos i don't take any Meds that would effect taste senses,
          I had hoped for more replies,..but obviously only very few are affected with it.

          I've been taking plain digestives for years, to help put caps and tabs over, usually about 6/8
          I've been using the same brand of cooked chicken for years, add uncle-bens sauce, plus rice,..micro job.

          Three days ago, same old biscuits are much sweeter,..and the chicken now tastes lovely,..like chicken,
          Coincidentally i started taking 3 new supplements that day,

          So i was wondering if loss of taste, while progressing,..without any Medication,..is the norm,
          If it is,..then what is getting your taste back (without stopping Rilutek)

          It's a trivial thing in MND problems, but i didn't take new one's to get my sense of taste back,
          i just have to hope they will help something else improve in time, shared pathways, etc.

          Nettie,...can your Dietitian not suggest something to perk-up his appetite,...like 30 days starvation???

          It might be just a simple blood test,...will show he's badly lacking some Vitamin or Minerals,
          Get regular checks on the Liver, because of Rilutek,..it might be down to something trivial, but important.
          Nobody is born with tubes and pipefittings,..they're alien to the human body,..try anything simple first.

          Ray

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            #80
            Ray. I sent you a civil reply despite the fact that you were so rude and dismissive to me previously. I swore I wouldn't ever answer or comment on your postings again but was astully swayed by the chance to help someone!
            You can be as rude to me as you like but don't you ever be so we insensitive towards my by poor gentleman of a husband again. He was diagnosed in March 2014 with PBP and if now suffering so much! There is talk of a hospital bed in our dining room soon ... only 9 months after diagnosis!
            To "jokingly" suggests "30 days starvation to perk up his appetite" is NOT funny in the slightest. In fact I cannot believe a fellow
            MND suffer even contemplating making such a crass comment. Most people on this forum are kind, warm, considerate and basically empathic with their fellow sufferers. I suppose there is always one exception!
            Notice .... No swear words in my posting but I do agree with Mick .... Karma does come to mind .... in a big way!
            I'm not surprised you didn't get much response to your request. More poor souls have been afflicted for longer than we have and know what you are like!
            Don't worry. I won't ever waste your time again!

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              #81
              Also Ray .... The tubes and pipe fittings are nothing to do with changes in taste! They are to solve the problem of physically being unable to swallow as the relevant muscles do not work! The epiglottis also doesn't get the message quickly enough to cut of the trachea so food that should be going done the oesophagus goes into the trachea and therefore into the lungs .... Just thought I would make it clear and simple as there seems to be quite a lot that you actually don't understand about MND unless it is a symptom that you yourself are experiencing.
              Trevor is a PEG fed for that reason and has been since November as he was choking on almost every meal and on every drop of fluid he tried to take. In order to have a little pleasure in life he has a little food by mouth. My sadness is that the number of flavours that still give him pleasure are reducing.
              He is talking of taking everything via the PEG soon .... This is only 9 months after diagnosis!.
              Just be grateful that you can still eat Ray .... and don't mock the afflicted. This may come your way one day.
              Goodbye.

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                #82
                I agree with Ray;

                Starve Trevor, he will be 8 stone at the end of 30 days and so much easier to move. Plus his stomach will have shrunk so he won't be able to put anything in it, just think of the money saving. From the north Nettie you should appreciate that as well.

                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


                  #83
                  Yep Terry. We should also ban the sale of supplements that delay progress for the same reason. Anything really that extends life so drains the NHS, MND, Social and Pension Service budgets should be banned! ....... Also VERY tongue in cheek as you know.
                  Please don't anyone believe that this is actually my view. It is simply a response to an earlier posting that you may have noticed, sent late last night.

                  Much love with to every one (nearly) ... But ncluding you too Terry! .... From Nettie
                  Last edited by Nettie B; 9 January 2015, 19:10.

                  Comment


                    #84
                    You've may have it wrong again Nettie;

                    There's no real proof that supplements delay progress, I think they might help a little with the immune system and muscle strength. I doubt that many do any harm and might help some people.

                    Maybe just terminate everyone at 70?

                    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


                      #85
                      State funded compulsary euthenasia? At least that would clear A&E depts.

                      Comment


                        #86
                        They were discussing supplements to help relieve colds last night on TV. There is no evidence anything prevents you getting one or if you develop a cold, makes it get better any quicker. But you tell that to anyone who believes in supplements, they will not accept it. The supplements business is a big money earner for many individuals and some companies.

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                          #87
                          Ha ha Trevor as I recall they did say that a cold lasting 12 days may be shortened to 11 days if taking Vitamin C. I think I'll stick to my oranges. LOL x

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                            #88
                            It would help Steve;

                            I think my election manifesto might start with people over 90 and keep quite about my intentions of lowering it till I get in power.

                            It's the way that managers used to use to lower the conditions of work, so it should work in government.

                            Don't believe everything that';s on TV Trevor but they do put some strong cases and trials.

                            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


                              #89
                              State funded euthsnasia work (again,tongue in cheek) except there would be the cost of the drug and once the drug companies got wind of it they would hoik up the price.
                              I think quite a lot of the overcrowding in A/E is because lots of people don't know how to put on a sticking plaster, how to take a paracetamol, what the difference between a little bump and an Accident is and what constitutes an Emergency.
                              When I was a student radiographer in the early 1970's the senior nurses in A/E had the power to turn away, at the door, anyone who's accident had happened more the 24 hours previously or if they considered the complaint too trivial. They were not afraid to use this power either and I never heard of those nurses misjudging the situation.
                              Last edited by Nettie B; 9 January 2015, 19:32.

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                                #90
                                I also think a lot of people that can't get an appointment with their Doctor or can't be bothered to get up in the morning for their appointment shrug their shoulders and wander along to A&E when it fits in with their schedule. But, the other side of the coin unfortunately is that there are also a lot of nurses in A&E that don't pull their weight and walk around with a piece of paper in their hand looking busy and chatting to their colleagues about last nights party!!! So 2 sides to the story.

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