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Me, My Father and The Alzheimer's

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  • #16
    The chocolate issue now appears to be moot as we had an emergency visit to the dentist yesterday. A crown came off over the weekend and unfortunately the root is too badly broken up to put it back. However, since I found the crown, I said no more chocolates until we see the dentist. I took out the toffees anyway, but some are still a bit chewy. We have another appointment for a check up on Friday and I've just removed all chocolate from sight. He's now snackiing on just fruit (apples) and cheese and doesn't seem bothered. After Friday if he doesn't mention it, neither will I!

    I've been tracking for a few days now and he's getting about 50% of his calories from fat, about 50 - 60g of protein (which is better than I thought, the cheese helps) and it was about 130g of carbs but with the loss of the chocolate seems to have dropped closer to 90g and arround 25% carbs. And of course it's taken out the last source of dietary sugar. It will be interesting to see if moving closer to something low carb has any effects.
    Me, My Father and The Alzheimer's - http://www.marksdailyapple.com/forum/thread84213.html

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    • #17
      Originally posted by awok677 View Post
      Going quite well, thank you. I'm pretty sure there's been an improvement since Easter but it's always difficult to measure. To be honest, he was diagnosed at age 90 and at that age, the average life expectancy is about 3 years so at 93 and at least holding steady, he's doing very well. Of course, most people aren't as fit as my father was to start with.

      The difficulty with the coconut oil is the texture. I have been giving him small amounts just before I give him something he's keen to eat, like a banana. That way he's distracted from what's in his mouth by what I've just put in his hand. But it's a prop, I think rather than a cure, and it's the other stuff like low carb diet and providing plenty of raw materials for the brain to repair itself that will see improvements. Using it to cook with at least means reducing further damage due to PUFAs etc.

      Sorry to hear about your nan and your parents attitude. Unfortunately, by the time most people get Alzheimer's they've become set in their ways so trying new things can be difficult. I'm fortunate in that my father was never really that bothered about food, so he's not too bothered what I feed him as long as it tastes good. And of course, when the disease is as widespread and devastating as Alzheimer's it can be very difficult for people to break away from CW or to go against the experts/doctors advice. Personally I felt what was there to lose, but if my brother hadn't understood I could have been over-ruled or at least pressured not to try it. I'm very fortunate.
      Glad it's going well yes I read your first post and saw what a great diet they used to have, it must have given him a good 'foundation' as it says a lot that he got to 93 in the first place! My nan could be surreptitiously fed coconut oil easily as I don't think she even knows my name now - if it was up to me she and my whole family would be full primal! But, it's not my decision.

      I wish you and your family all the best

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      • #18
        No great advances. I'm continuing on with tracking my father's calorie intake and macro ratios. The chocolate has not reappeared since being removed and he's made no comment on this, so I'm leaving it well alone.

        At the moment we're going through a period of regularly disturbed nights, but he's much more lucid at these times than he has been. Even from early on, middle of the night disturbances were often from dreams that he'd wake from and be unable to distinguish from reality. Currently it's much more that he's awake and wants to know if anybody else is up. When it's pointed out (like at 3am) that it's still dark outside and thus everyone is asleep, as he should be, he seems to accept that fairly quickly.

        Fortunately when it gets to the morning and being light at 5am (!!) he seems okay with going back to bed because I'm not up. Not sure why this doesn't occur to him when the house it dark and it's dark outside. In any case, I do feel that the fact he listens to and understands me is progress. He also apologises for waking me, once he understands he has done so. It's not easy to find a balance between being willing to be woken if he needs me and being frustrated at him not being able to see that 'dark outside' = 'middle of the night'.

        And we're not even into summer yet.
        Me, My Father and The Alzheimer's - http://www.marksdailyapple.com/forum/thread84213.html

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        • #19
          So a week or two ago, I went back to the Alzheimer's forums where I'd been hanging out. When it seemed that father was on a one-way journey, this community was a great help. I would read threads and be forewarned about what might be in the future. I would see how father's behaviour compared with others and feel that we were doing well and that I had much to be grateful for in his personality and the way he was reacting to the Alzheimer's.

          When I realised that things we were doing were making a difference, I lost the urge to hang out in a place where constant deterioration was the overarching theme. I was also uncertain about saying anything about what we were doing, because these forums are very much centred on CW and on advice from doctors. Even though new research is sometimes discussed, the forum in general is somewhere that people are waiting to be told what to do. Very few people are reading for themselves, let alone trying things to see if they help.

          I knew the CW view of removing wheat from my father's diet would be disapproving and lowering carbs in general – despite all the Type 3 Diabetes references – would probably be decried as 'dangerous'. And yet I felt that as it had helped Father, I'd like to share our experiences, just in case it helped someone who perhaps was at an earlier stage and could make their own choices. After all, the usual problem with anecdotal evidence is that it's generally from a complete stranger on the internet and personal testimony within a community has to be more significant – surely?

          Eventually I saw a thread about Coconut oil, but it had deteriorated into a CW vs 'dangerous untested woowoo' thread and I was reluctant to jump in. A shorter thread started about Saturated fats and Coconut Oil, so I put in a post about our experiences, not just with coconut oil (which we use more as a healthy neutral fat source than a supplement), but with removing wheat and the issues of saturated fat. I think I posted 3 times. The thread has now devolved into a back and forth between those who view giving relatives coconut oil as 'dangerous and irresponsible' and those who are saying we have tried this and this is what we have found.

          Needless to say, I shall not be returning to that forum. The 'holier than thou' attitude of people who smugly sit and do only what their doctors tell them to do is very disturbing. Even more annoying is their smug certainty that anyone posting does not have the necessary training or education to understand the research and evidence for themselves. I'm so grateful for the MDA approach of discussing differing viewpoints and bouncing the links to actual studies around. In addition, the attitude here of – everyone's different, so YMMV, is exceedingly supportive.

          So thank you, everyone, for just being here.
          Me, My Father and The Alzheimer's - http://www.marksdailyapple.com/forum/thread84213.html

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          • #20
            I'm reading Dr Mary Newport's book on coconut oil and it's convinced me to actually try pure MCT oil. Because it's pure MCT, it needs a smaller amount to get the same dose. I suspect my small doses through the day have helped but not given him a big enough boost to help to lift the brain fog at all. I know that's what he struggles with and he's more aware of it now than he was and sometimes is quite upset/frustrated by trying to think and not being able to. So I'll be ordering from amazon and giving it a try.

            One effect of my parents' fairly clean diet is that my father doesn't really like thick drinks. Smoothies and milk shakes etc would all have been too sweet for him previously, so trying to get 2 tablespoons of coconut oil into anything that will make it easier to get down is difficult. Dr Newport uses her husband's porridge, but having had such gains by removing grains, I'm not going back there. The only other option I can think of is ice cream as he does like that and if I could get it right would eat it almost any time. And of course the coconut oil chocolate option. I really need to work on both of those.
            Me, My Father and The Alzheimer's - http://www.marksdailyapple.com/forum/thread84213.html

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            • #21
              Oh how I am put off by those who sit and do only what their doctors tell them. I've battle cancer, and won, three-times. Each time I worked with my doctors but never just accepted their suggested treatments as the gospel. Armed with my own research I insisted on debating options and challenging their assumptions on expected results. When a debate was over I always felt better about any decisions I made about my treatment.

              Today, my father in law is in his third battle with cancer and it saddens me to see that he is very much a doc-knows-best guy. He really reveres his oncologist doc because of his first battle with cancer that was a vicious battle it looked like he'd lose. Thanks to his doc recommending an aggressive treatment, he survived to the surprise of all including the doc. While that is obviously a tremendous result, it also resulted in hardening his attitude of doc knows best so do what the doc says.
              Follow my progress at ->Journal: My Body Revival



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              • #22
                Originally posted by PRO199 View Post
                Oh how I am put off by those who sit and do only what their doctors tell them. I've battle cancer, and won, three-times. Each time I worked with my doctors but never just accepted their suggested treatments as the gospel. Armed with my own research I insisted on debating options and challenging their assumptions on expected results. When a debate was over I always felt better about any decisions I made about my treatment.

                Today, my father in law is in his third battle with cancer and it saddens me to see that he is very much a doc-knows-best guy. He really reveres his oncologist doc because of his first battle with cancer that was a vicious battle it looked like he'd lose. Thanks to his doc recommending an aggressive treatment, he survived to the surprise of all including the doc. While that is obviously a tremendous result, it also resulted in hardening his attitude of doc knows best so do what the doc says.
                Yeah, it's tough. I know I have the advantage of a biology degree under my belt so that I already had the basics when I went looking. But the bottom line is that when something is broken, I want to understand how and, if possible, why and not just take someone else's word that there's no way to fix it. Some of my friends listen to me explain what I've learned and then say - oh well, it would take me years to understand all that. For others it's simply impossible for them to believe that so many trained and educated people could just be wrong, so they don't want to hear it.

                While some people are genuinely scared of doing something wrong I think many people just don't want to be responsible and prefer to let someone else make the decisions.

                Congratulations on your own battles with cancer, and really, on being prepared to get stuck in there and go face-to-face with the doctors. I think a lot of people assume that a lay person can never catch up with n years of training and forget that whatever your problem, your doctor actually spent quite a small proportion of his training studying it and the rest studying problems you don't have!
                Me, My Father and The Alzheimer's - http://www.marksdailyapple.com/forum/thread84213.html

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                • #23
                  Well, it's been an interesting day. This morning I decided to up the dose of coconut oil I've been giving my father directly. I've been giving him a teaspoon of solid coconut oil at lunchtime, which weighs around 6 or 7 grams, depending on how I load it and otherwise using it in cooking. It's enough that he can take it easily enough and he seems fine with the taste. Having been reading Dr Mary Newport's book, I've ordered MCT oil to try (which should have arrived today but didn't) and have decided to try giving him CO directly before each meal. The principle is that the MCTs are converted directly to ketones in the liver, without requiring a ketogenic diet, and are immediately available as food for the brain. Current theories point to problems metabolising glucose in the brain of alzheimer's sufferers and neurones being starved of fuel and dying off.

                  Started this morning with breakfast when I gave him a spoonful after he'd eaten his melon slices and before giving him his bacon and egg (scrambled using CO). The result was, well, interesting. He was already relatively active this morning - enough for me to actually persuade him to have a shower. If he's slow, not very mobile or confused I won't even try. But it was a good day and the shower went well. After breakfast, minor alert with the hamster who looked to be on his last legs. While I was trying to figure out what I could do, father settled himself in the lounge and I put a dvd of aeroplanes on for him. Usually, put an airshow dvd on (Duxford, Farnborough, Waddington etc) and he's soon asleep, but no, not today. Today he was full of it. He was up and down looking round the house and investigating.

                  Eventually he sat and watched me planting up some pots in the conservatory (figured we might as well use it as a greenhouse), after which we played some catch with a football (soccer) and then played with a balloon, batting it back and forth. He had plenty of energy and his reactions are still there.

                  Another spoonful at lunchtime before his banana and he had a bit of a snooze, but then was up and in the loo and then saying thankyou very much for lunch and for looking after me and giving every impression that he was off. Eventually managed to persuade him that this is his house, he was already home, and there wasn't anywhere else for him to be going, let alone to his 'job'. I really wasn't sure if this was a backwards step, or just that his brain was working better but still with the bad data. He went off to look round the house and see what was familiar to him.

                  Eventually he came back and told me that he hadn't been in a school for a long time (he was a headteacher but usually doesn't remember this) but that he thought if he went into one now, he didn't think he would enjoy it much. I was fairly gobsmacked. His memories usually involve his parents' house and growing up in Southampton, or being in the RAF (though less of that lately). He occasionally recalls bringing 'things' back from foreign countries, which he and my mother did while caravanning since they both retired, 20 years ago or more.

                  I've just given him a 3rd spoonful a bit early as we'll be eating late as my brother is visiting. It will be interesting to see what he makes of him and, of course, how he is tomorrow. If this is a reaction to the CO, then I can expect more of the same tomorrow. If it's just within normal variation, then tomorrow he'll be mostly zonked out, as today has been a very active day. We shall see ...
                  Me, My Father and The Alzheimer's - http://www.marksdailyapple.com/forum/thread84213.html

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                  • #24
                    Oh Goodness, awok, your story of taking care of your father resonates with me so much. My Dad recently passed away at 87. He had what they call vascular dementia , caused by a series of small strokes, but with the same outcome as Alzheimer's.

                    We too had some good results with coconut oil and MCTs. I learned to sneak some more in in just about everything. The good thing about MCT oil is that it does not go solid when exposed to cooler ingredients which makes it work well in smoothies. Some Aroy-D coconut cream is a good way to get some more ketogenic MCTs in as well.

                    I'm eating on a ketogenic protocol with high MCTs for my neurological health (I have epilepsy) but it ended up helping both my father and myself.

                    My Dad also had "the texture issue" about foods. I was told by a nurse that, in any type of dementia, the swallowing reflex starts to diminish over time and so anything tough or fibrous can become a choking hazard. We started having lots of things made with ground meat or salmon patties and such plus I supplemented his diet with coconut cream and egg smoothies with some fruit for sweetness and flavor. Also lots of egg based dishes such as quiches, frittatas, and omelets.

                    I know what you are doing is far from easy but, when he is gone, you will treasure the time you had together. I know I do.

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                    • #25
                      Thanks for your comments, PB. I'm sorry about your father - so many people who make it to a respectable age now seem to be hit with dementia of one sort or another. (In fact my mother was developing Parkinson's-like symptoms in her last years, though she couldn't have accepted the dietary changes that my father has.) It seems so unfair when they've managed to stay fit enough to reach their 80s and 90s. I know I'm lucky to be in a position to do this for my father, but I couldn't not do it. Someone said to me the other day that she supposed he wasn't really the same person any more and I had to correct her. He's exactly the same person, he just doesn't have the memories or the cognitive abilites to work with that he used to have.

                      At the moment he seems okay with taking the CO in solid form and having it dissolve in his mouth so I'm going to try and make it a routine and to always follow it with something else solid to distract him- a technique I learnt with my cat. I've told him it's good for his brain, so he's accepting it, but he doesn't seem to mind the taste. Once our main delivery of CO arrives, I'll start experimenting again with making (sugar-free) chocolate and maybe ice cream.

                      At the moment I have a fairly easy life because he sleeps much of the day. Yesterday he didn't, so if this continues I will be making things harder for myself. But it's still a case of my just not being able to sit back and not try. He deserves every chance that I can give him because I know that he wouldn't be (and hasn't in the past been) satisfied with sitting back (even at 93) and letting 'nature take its course'. He's always worked hard to get what he wanted and when he's set his sights on something he's gone for it, so this is no different.

                      I'm interested now to see what adding the MCT and thereby raising his ketone levels will do. I'll admit that until reading Dr Newport's book, I hadn't considered that ketone levels in the blood could be raised outside of a vlc diet - which is my own preference. And I couldn't see taking away more of his carbs - potatoes, peas and beans - because they're easy for him to eat and they give him pleasure in his meals. I'm interested to see what happens now because, although he's not that low carb (around 30% and 100g) , he is grain-free and sugar-free. Adding raised ketone levels to that seems to give us a reasonable chance of some kind of improvement. And I'm supplementing with a lot of things implicated in brain health and rebuilding neurones etc.

                      Oh dear, it's all a bit of an n=1, but I still feel it's better than sitting around watching him deteriorate - and so does my brother. Fortunately I have his complete support in this and since his wife is a nurse and her sister is an MD, we have plenty of medical advice on tap as well. Luckily they are both open to the alternatives to CW and are willing to read and learn. I hope to be updating more frequently as this pans out. It does seem that the only way CO is going to get publicity as a treatment is by word of mouth, so I feel documenting what happens is important.
                      Me, My Father and The Alzheimer's - http://www.marksdailyapple.com/forum/thread84213.html

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                      • #26
                        So great you are doing this for your dad and sharing it. I really hope it will help him

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                        • #27
                          I found that swapping out other mashed veggies in place of potatoes worked well. Cauliflower and parsnips are really good mashed together with a bunch of CO and a bit of nutmeg.

                          Two birds with one stone, lower carbs and raise MCTs.

                          My father also was incredibly fit for almost all of his life. He built a deck onto his house at the age of 85. Not talking about supervising the contractor, this was my Dad out there with the power tools himself doing the building.
                          The progression you are seeing with your Dad must be much more gradual than what happened with mine. It was a rather big shock to me the first time at dinner when he asked me in all sincerity, "Why do you keep calling me Dad?"

                          Oh. Crap.

                          Hugs to you and your Dad.

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                          • #28
                            Awok, I have been reading your journal with interest. I work in long-term care and have many residents with various types of dementia. Several have families that have requested coconut oil supplementation based on Mary Newport's experience and the internet interest it has garnered. As the dietitian, it is my job to organize implementation of the CO. I have seen some improvement in these residents, some in their cognition, but also in their overall wellness, skin condition, bowels, weight maintenance, immune system. It's all good.

                            All the best to you and your dad in your journey. Thanks for sharing it with us.

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                            • #29
                              Awok, Wishing your family the best in your journey or wellness.
                              Follow my progress at ->Journal: My Body Revival



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                              • #30
                                Originally posted by Paleobird View Post
                                I found that swapping out other mashed veggies in place of potatoes worked well. Cauliflower and parsnips are really good mashed together with a bunch of CO and a bit of nutmeg.

                                Two birds with one stone, lower carbs and raise MCTs.

                                My father also was incredibly fit for almost all of his life. He built a deck onto his house at the age of 85. Not talking about supervising the contractor, this was my Dad out there with the power tools himself doing the building.
                                The progression you are seeing with your Dad must be much more gradual than what happened with mine. It was a rather big shock to me the first time at dinner when he asked me in all sincerity, "Why do you keep calling me Dad?"

                                Oh. Crap.

                                Hugs to you and your Dad.
                                Ah, PB, sounds like your father was very much like mine. When things needed to be done, he just did them. He learned to be more careful with age, especially after having his pacemaker fitted, but never really submitted to it.

                                And actually it was a sudden thing, just like your dad. We were talking about my brother and he said 'who's Nicholas?'. When we explained, he had no idea and wanted to know if he'd ever met him and was he older than he was? We didn't actually ask him at that point if he knew who I was. I think he knew my name, but from that point it was clear that the whole idea of having children was simply unbelievable and of course a diagnosis was fairly clear. He actually scored 26/30 on the MMSE even though he had no idea he had children. He knows that I am familiar and that I'm the one who sorts things out, but when asked if he knows why I call him 'father' he has no idea.

                                Other things like dressing and having a shower have shown a much slower progression/deterioration, yes.

                                And I have a swede (rutabaga) in the fridge now that I'm planning on mashing.
                                Me, My Father and The Alzheimer's - http://www.marksdailyapple.com/forum/thread84213.html

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