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    #16
    Julian50 Have you asked the MNDA about setting up a page for what you want?
    ​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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      #17
      It's an interesting conundrum, isn't it? I fully take on board Ellie's point that dietary supplements are largely unregulated and you don't always know what you're getting or in what dosage, but I also think that getting some concrete advice about recommended foods or diet in general would be beneficial. I've read the NICE guidelines about a high fat, high carbohydrate diet, particularly with regard to those who have had a gastrostomy, but what exactly would this consist of? What about the fermented foods that are very much on trend at the moment? The woman who recommended CoQ10 to me also recommended something called Lion's Mane. A list of things like this, with the pros and cons and recommended dose would at least allow people to make up their own minds, even though some might say it was clutching at straws. I think you need to feel you are doing something positive towards your own health, even if the long term benefits are unproven or negligible and diet is one thing we can influence. I do believe, as DJW commented earlier, that being positive has its benefits.

      Comment


        #18
        Originally posted by slp View Post
        I am interested in the medication others take because we all to take different ones.
        Sarah, I have a list of what I take in my profile, that way I can easily update it should it change. And (once again) it's boring and unremarkable 😂 x
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        Comment


          #19
          [QUOTE=SallyAnnB;n46448]It's an interesting conundrum, isn't it? I fully take on board Ellie's point that dietary supplements are largely unregulated and you don't always know what you're getting or in what dosage, but I also think that getting some concrete advice about recommended foods or diet in general would be beneficial.

          Hi Sally Ann,

          You may find this useful.

          http://alstuttu.org/wiki/index.php?t...ve_been_taking
          I’m going to do this even if it kills me!

          Comment


            #20
            As Ellie says, food supplements only have to be safe to eat!

            There are thousands and it’s fruitless. None have been shown to work and anecdote is anecdote. I don’t like the industry.

            They should be regulated like clinical drugs.

            It would be a waste of money to spend any MNDA resource on the subject.

            With regards to diet, just keep a good diet with perhaps a bit more fat and calories. We have a higher metabolism than most so keep intake up. Forget things like lions mane etc.

            Most perceived benefit from supplement pills etc is probably from the milk or juice that people take them with! Ie the calories!

            Unless you have a solid identified deficiency a good diet will provide everything. Perhaps the odd vitamin D pill in winter, and magnesium.

            But don’t go wasting money on expensive supplement blends. There is a new one every year with a long surviving patient often innocently promoting. They have not been clinically trialled and often just use science sound bites to promote.

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              #21
              Sorry to be a realist but there's a time when no matter what you put into your body it wastes away, the body I mean. 😞
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                #22
                Prior to my MND diagnosis, I too was cynical when it came to supplements! But I think that MND is different because of the link to the gut microbiome.
                Apparently we have trillions of microbiome down there that need to be encouraged to prosper and to send some messages to the brain. And I felt that supplements/diet might help a little with that encouragement.

                After some family research, we honed in on Elysium EH301 (a blend of Nicotinamide Riboside and Pterosilbene) which had been the subject of limited trials but which showed cautiously encouraging results. I found that, after a week or so, my muscles felt as if they had more energy including my breathing muscles.
                After 3 months, I doubled the dose and things became not so good!! I am back on the original dosage now and feeling better for it!!
                And much depends upon the definition of a supplement - to help reduce inflammation, I drink pineapple juice because, like Ellie, of it’s effect on mucus and also drink Kefir every day for B12 - but goats as opposed to cow’s also because of the effect on mucus!

                So I would have found a diet/supplement page on the Association’s website very helpful especially when it comes to dosage - how much encouragement can/should these microbiome be given! Maybe we are still learning but I am sure there are some general guidelines.

                Additionally, diet/supplements are important to maintain weight which I currently find impossible to do!! Some help there could be good!

                This is all day to day practical help which the Association could provide in a page or two. I have made the suggestion but today have received absolutely no response!

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                  #23
                  I have to repeat that extending my present life is not something I would consider. But that's just me you ken? 😁
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                  Comment


                    #24
                    [QUOTE=Barry52;n46478]
                    Originally posted by SallyAnnB View Post
                    It's an interesting conundrum, isn't it? I fully take on board Ellie's point that dietary supplements are largely unregulated and you don't always know what you're getting or in what dosage, but I also think that getting some concrete advice about recommended foods or diet in general would be beneficial.

                    Hi Sally Ann,

                    You may find this useful.

                    http://alstuttu.org/wiki/index.php?t...ve_been_taking
                    Barry

                    This is quite a list! Where to start? That's where I think some guidance would be helpful, although suggestions we make among ourselves are also useful. I take the point that supplements may be useless in the long term, but as long as they're doing no harm and you're not bankrupting yourself on quack treatments, I don't see any reason not to give some of them a go. I might have a look at the one Julian is taking. Like Julian, I'm losing weight even though I can still eat three normal meals a day with the odd biscuit or bit of cheese in between. Unfortunately, I can no longer tolerate traditional snacks such as chocolate (or indeed anything sweet), crisps or alcohol, so it does make keeping the weight up a bit difficult.

                    Comment


                      #25
                      Doughnuts, chips, burgers. Such things are dreams made for. 😉
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                      Comment


                        #26
                        Originally posted by Julian50 View Post
                        Prior to my MND diagnosis, I too was cynical when it came to supplements! But I think that MND is different because of the link to the gut microbiome.
                        Apparently we have trillions of microbiome down there that need to be encouraged to prosper and to send some messages to the brain. And I felt that supplements/diet might help a little with that encouragement.

                        After some family research, we honed in on Elysium EH301 (a blend of Nicotinamide Riboside and Pterosilbene) which had been the subject of limited trials but which showed cautiously encouraging results. I found that, after a week or so, my muscles felt as if they had more energy including my breathing muscles.
                        After 3 months, I doubled the dose and things became not so good!! I am back on the original dosage now and feeling better for it!!
                        And much depends upon the definition of a supplement - to help reduce inflammation, I drink pineapple juice because, like Ellie, of it’s effect on mucus and also drink Kefir every day for B12 - but goats as opposed to cow’s also because of the effect on mucus!

                        So I would have found a diet/supplement page on the Association’s website very helpful especially when it comes to dosage - how much encouragement can/should these microbiome be given! Maybe we are still learning but I am sure there are some general guidelines.

                        Additionally, diet/supplements are important to maintain weight which I currently find impossible to do!! Some help there could be good!

                        This is all day to day practical help which the Association could provide in a page or two. I have made the suggestion but today have received absolutely no response!
                        Julian, How did you obtain EH301? Did you send to the US for it or did you have to get it via your GP/consultant?

                        Comment


                          #27
                          SallyAnn, I just bought the Nicotinamide in the form of TruNiagen over the counter from Superdrug and Pterosilbene on line and currently take 1200mg of Nicotinamide with 50/100 mg of Pterosilbene which, you will see from the Elysium website, are the two core constituents! The dose is as close as I can get to the trial quantity. But all this is done without any advice and this is where the Association could come in!
                          I am happy to post the Valencia trial report if you would find it helpful. I also understand that there is an ongoing trial at the University of Bergen in Norway.

                          Comment


                            #28
                            Hi Julian.

                            I think we have to accept that MNDA won’t get involved because they have to deal with science and in the case of supplements there is scant evidence that they aid MND. From my perspective I take some supplements to counteract the effects of certain drugs prescribed to control symptoms of MND i.e. citalopram and baclofen. Extra virgin coconut oil avoids constipation. I fall often and my healing powers are improved by curcumin. I like most of us haven’t been out much in the last year so D3 is helpful. Of course this is just me and I’m not recommending my regime.

                            Best wishes,
                            Barry
                            I’m going to do this even if it kills me!

                            Comment


                              #29
                              Julian50 Notwithstanding your quest to have the MNDA provide a supplements info page on their website, there is a website called Patients Like Me, on which people track their progress whilst taking various treatments - I just checked Elysium, for example, and there are a few hundred people with ALS in the UK who have identified themselves as taking it.

                              Might be worth joining??
                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                              Comment


                                #30
                                Thanks to everyone for their comments above. It's given me quite a lot to think about.

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