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Me, My Father and The Alzheimer's

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  • #31
    Originally posted by marthat View Post
    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.
    marthat, thanks for your comments. I'm very interested that it's having a general effect on health. Of course we'd decided to start using it really on the paleo/primal principle of replacing less healthy oils and it's only now I've understood the full mechanism of ketone supply as potential brain fuel. Dr Newport's book was very enlightening, even after all the Taubes, Sisson, Cordain, Yudkin, Groves, Kendrick etc I've been reading about sugar, wheat, paleo, carbs and everything else. I keep finding new books that cover a lot of the same ground but still add a little more to my knowledge.

    And I also feel it's important to share my experiences. Alzheimer's and dementia affect so many people but it's the kind of thing everyone says - oh, I am sorry - and then politely ignores. I think it's a huge shock to people when it happens because most of us have no knowledge of what to expect. Especially seeing what has worked for him and what a change it has made (cutting out wheat) I think is vital to share because I'm sure it would have made a greater difference earlier in the disease.

    And of course, as PB and I can attest, Alzheimer's can appear almost out of the blue with no clue there's anything going wrong other than perhaps getting older, so I do think the issue of cumulative damage that Paleo theory has identified from phytates and gluten etc is a big issue here. So, yes, I do feel that sharing what we're learning is important, because many instances of n=1 can show a trend at least, even if it's not scientifically controlled.

    In Dr Newport's book, she mentions noting major changes in behaviour, but the truth is that I've been journalling my father's behaviour and exactly what I'm doing with his diet or within the household, daily, almost since I moved in. At first it was so I could look back and see trends or progeression of the disease and then it was to track how what we were doing helps. I can't imagine anyone trying any kind of intervention and not tracking it carefully. sharing it is the next progression.
    Me, My Father and The Alzheimer's - http://www.marksdailyapple.com/forum/thread84213.html

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    • #32
      So, yesterday was day 2 of increasing the direct supplementation. On monday he had a total of 23g direct and perhaps another 30 in the food and yesterday, 26g direct and another 20 or so in food. Yesterday he started off quite active and on the recent scale of things, quite with it, but he soon fell asleep watching the tv and was asleep probably half the day and slept well last night. He's late getting up again today as he was yesterday. This is not surprising as I'm pretty sure that his mental and physical activity on Monday wore him out and is probably carrying over to today as well.

      If this is random ups and downs, then we're likely to get a confused day soon after a mentally clearer day as a backlash of all the mental activity. If, however, he carries on being more 'with it' and just tired, then I will have to attribute it to the CO. thankfully he seems to have taken the increased level of oil with no repercussions to his bowel movements! But we had a fair amount of fats already in the diet. And he seems to enjoy the flavour.

      Will be interesting to see how today goes.
      Me, My Father and The Alzheimer's - http://www.marksdailyapple.com/forum/thread84213.html

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      • #33
        I started with giving him a teaspoon of CO before every meal, so 3 x a day) on Monday. I can get anywhere between around 7g to 10g of solid CO on a teaspoon and he seems happy enough as long as it's followed by something else. In the mornings, the teaspoon of CO is followed by scrambled eggs made with another larger teaspoonful, so hes getting somewhere around 17 - 20g first thing. (and the bacon is fried in CO.)

        Well Monday was amazing, he spent the whole day in a semi-hyper state, lost of energy and more alert and awake than usual. No less confused, but that's not surprising as he's still working with bad data. He did seems more interested though and was querying what the diary I bought him was for (he always wrote a daily journal entry) and picling up books to look at. This continued all day and then Tuesday he was asleep modst of the day. In fact he only got 2 teaspoons on Tuesday because he slept righ tthorugh lunch.

        Wednesday he was tired but not so sleepy and then Thursday he was hyper again. Both Thursday and Monday we played catch with a nice bright yellow football and Thursday he had more stamina and was making stronger throws. We also spent several minutes hitting a balloon back and forth and again we were able to do this for longer on Thursday. Friday he slept a lot again.

        Saturday he was active all day again and was very restless. I had a friend round to visit and by mid-afternoon he'd had enough of watching tv and was looking for things to 'do'. Unfortunately both Friday and Saturday night were restless, with him being up at 2am, 3am and 4am both nights. Today he has been sleeping - right through lunch again. I'm really hoping he carries on sleeping through tonight!

        So we seems to be developing a routine where he has a very active and alert day followed by a day where he sleeps and recovers. In theory, while he's asleep and his brain is less active, the ketones are available to fuel repairs rather than just activity. I haven't tried introducing the mct oil into the mix yet. I think I'll give it a couple of weeks of CO first and let him get used to the current levels before trying for higher ketone levels.

        I do think there's more awareness on the active days and even on the sleepy days. Today when he woke up, he wasn't content to just watch the aeroplanes on tv, but picked up a book to look at at the same time. The physical energy may now allow us to get out for some exercise, even if it's just playing catch outside or pottering in the garden. but maybe some walking as well. Early days yet.
        Me, My Father and The Alzheimer's - http://www.marksdailyapple.com/forum/thread84213.html

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        • #34
          That's awesome progress!

          I'm thinking I need to add CO back into my own diet for cooking in an attempt to prevent Alzheimer's developing down the road. Just tends to be more expensive than butter.

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          • #35
            Originally posted by teach2183 View Post
            That's awesome progress!

            I'm thinking I need to add CO back into my own diet for cooking in an attempt to prevent Alzheimer's developing down the road. Just tends to be more expensive than butter.
            I don't personally think that the CO affects the actual Alzheimer's, it's just an alternative source of fuel for the brain cells. My approach is two-fold. The CO seems to be proving ketones for fuel (as well as replacing unhealthier fats) but the initial improvements were seen with the removal of all wheat products. Adding in supplements like D3, B12, K2 and phosphatidylserine are my attempt to provide the basic building materials that might be used for maintenance and repair of structures in the brain.

            I believe that the Alzheimer's is a result of cumulative damage - either the current theory of insulin resistance in the brain, or some other damage. In my father's case, there was a significant improvement on the removal of wheat products so I have to believe there was some kind of damage directly attributable to the effects of wheat, either preventing uptake of B vitamins in the gut or directly on the brain. I'm not sure that the resulting drop in the proportion of carbs in his diet would have had that significant an effect if it was just about insulin resistance?

            So I'd say in terms of prevention, avoiding wheat/grains is what I consider to be most important. I know that my father's intake of wheat (and probably sugar had increased in the few years before he showed symptoms. I'm happy to be as close to 100% wheat/grain-free as I can manage from now on as my own preventative measure.
            Me, My Father and The Alzheimer's - http://www.marksdailyapple.com/forum/thread84213.html

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            • #36
              Originally posted by awok677 View Post
              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.
              Oh, my. Yes, some evenings my Dad would think I was my mother at the dinner table, sometimes he thought I was his mother. One night he thought I was his sister (but he never had a sister). Sometimes he had absolutely no idea. It was like all the time lines just got jumbled up and he was trying to make things make sense in his head.

              One night after dinner he was convinced that we were out on Catalina Island and, if we didn't "get a move on" we were going to miss the last ferry back to the mainland. The last time he was on Catalina Island was about 1968. I know because I was there.

              Has your Dad ever started seeing things that aren't there? My Dad saw tigers in the back yard one day. They were very real to him.

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              • #37
                Originally posted by Paleobird View Post
                Oh, my. Yes, some evenings my Dad would think I was my mother at the dinner table, sometimes he thought I was his mother. One night he thought I was his sister (but he never had a sister). Sometimes he had absolutely no idea. It was like all the time lines just got jumbled up and he was trying to make things make sense in his head.

                One night after dinner he was convinced that we were out on Catalina Island and, if we didn't "get a move on" we were going to miss the last ferry back to the mainland. The last time he was on Catalina Island was about 1968. I know because I was there.

                Has your Dad ever started seeing things that aren't there? My Dad saw tigers in the back yard one day. They were very real to him.
                No, he's not been seeing things. He looks for other people, but I think it's because his strongest memories at the moment are childhood ones when he had 3 siblings, his parents and possibly a nurse in the house. Now it's just the 2 of us, we asks where everybody else is. The other day he told me thank you for lunch and for looking after me and I'll go home now. After a long explanation that this is his home and where he's lived now for 35 years he eventually conceded that some things were familiar, that he didn't know where he would go otherwise and that yes, it would be best to stay.

                And sometimes (but rarely) he seems confused by the tv and thinks for a moment that what he's seeing is happening. But when I explain it's the tv, he seems to get it.
                Me, My Father and The Alzheimer's - http://www.marksdailyapple.com/forum/thread84213.html

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                • #38
                  We seem to be continuing with the situation of a very active, even hyper, day one in every 2 or 3, followed by a day or 2 of extreme tiredness.

                  The last hyper day was Tuesday, when a friend came to visit who often sits with him while I have appointments. This time I was planning on going to fettle the Herald for a couple of hours, get it started and hopefully retrieve it from its over-wintering garage back here prior to booking an MOT. Only when she arrived, he was quite anxious. Prior to this, he's not really been too bothered about other people being around and she engages him really well (coming from a services family herself) and talks about aeroplanes and ships with him and they usually have a great laugh. This time, while we were chatting, he got up and went outside and was wandering round. After 5 minutes I went to check on him and he was really worried about who was there and what he was supposed to be doing and where he was supposed to be.

                  This was so unlike him that I wasn't happy just going off and leaving them to it, so I stayed. In fact, when I went out in the garden and left them to it for a few minutes they did start chatting and looking at a book and he was a lot easier with her. So I had a day at home and we had a really good time, played catch etc and he seemed to be enjoying himself. But after she'd gone, around 4.30pm he was still hyper and as it does sometimes, it becomes his own version of 'sun-downing' when he's very anxious and looking for something to 'do'. He also seemed to have got over-heated (he does wear a jumper every day because he doesn't have much body fat and loses temperature easily due to his age and low metabolism) and took off his jumper and then wanted to take off his shirt as well!

                  By the time we got to actually having dinner, he was so anxious I think he found it difficult to eat, but once we settled down to watch tv afterwards (André Rieu dvd) he was happy tapping along to the music and eventually dozing off. Phew! So while it seemed to be a bad day, it's a level of awareness of and interacting with, what's going on around him that he hasn't shown before. That he's aware enough to be worried is progress, small and double-edged as it is.

                  Another thing is that the last 2 days he seems to have reverted to an old habit of dressing - tucking his vest (undershirt) inside his pants. He hasn't been doing that since I've been helping him to dress, so again, a tiny and subjective improvement. I always consider it progress when I see him reverting to an old established habit that has previously appeared to be lost.

                  Generally the last few nights have been better with him sleeping through, which is always good for me, but that seems to go in cycles as well. I have to make the most of it when I can.

                  So currently I would say that the CO appears to be doing it's job of fueling his brain, but that one day of high mental activity is enough to knock him out. I'm hoping that the subsequent days of sleeping are allowing the available fuel to be used in repairs, slow as they may be, and boosted by the supplements (B12, D3, K2, phosphatidylserine).
                  Me, My Father and The Alzheimer's - http://www.marksdailyapple.com/forum/thread84213.html

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                  • #39
                    So, the first stint with regular CO dosing settled into a rhythm of hyper day(s) followed by catching up on sleep days. There were a couple of days where father just seemed to want to sleep through the day and so I left him. This meant he didn't get the 3 doses and he seemed to get more sleepy and less hyper and thus less awake to take the CO. Until I realised that he was also becoming more confused and less aware and that he was only getting one or two doses plus the CO in the cooking.

                    So we're back on the 3 doses a day even if they're not huge spoonfuls, because at one point in that first stint he spat out the CO into his coffee. So that contributed to my backing off as well. But, yes, once he wasn't taking it regularly I could see the difference and then the improvement when he started getting it again.

                    We've just had his annual review at the GP surgery, which included blood pressure – 130/70, cholesterol – 4.2, and a raft of other things like blood glucose and liver and kidney function, all of which are in the 'blue', which seems to require no intervention. Sadly this occurred on a more confused day, so he wasn't anywhere near his best. If we hadn't had the appointment I would have let him sleep in and that usually helps to reduce confusion.

                    So, we're 3 years on from diagnosis, at which point he initally tested 26/30 on the MMSE at 90 yrs old. He's still mobile and this morning walked about 100yds from car to surgery and the same back again. He's still able to use the toilet by himself and only has very rare continence issues, mostly I think because he's tired and sleeps through the early cues. Given that the average life expectancy of someone diagnosed with Alzheimer's in their 90s is 3 years, we're ahead of the curve. I suspect a lot of this is down to his high level of health and fitness prior to the onset of the Alzheimer's.

                    Some things have deteriorated in the last year – dressing ability and understanding toilet etiquette like flushing and where used tissues go, but his awareness of himself and his environment has held fairly steady and fluctuates between 'mostly with it' and 'quite confused'. I think the next year will be significant. If he can maintain this level of awareness, then we may be able to hold steady until his body gives out – which is a major victory where dementia is concerned. Otherwise we'll face the eventual decline into increasing loss of physical control, albeit at a slower pace.

                    If we hadn't slowed the progression back in December with going wheat-free and then the vitamins and CO, then I'm pretty sure we'd be into incontinence and much reduced mobility and awareness by now. Which is, of course, just my personal opinion and entirely subjective. I mentioned the various supplements to the GP (who also happens to be our next door neighbour) and his response was – well, there's no actual treatment for this disease, so … - which I take to mean, if it seems to be working for you, go for it.

                    My concern was that something in the review would prompt an intervention in what is currently a relatively stable situation, but I'm pleased to say all the boxes are now ticked for the next year and my changes to his diet haven't raised any red flags. Not that I'd expect them to, but given the increase in saturated fats and decrease in carbs, I knew that I didn't want anyone trying to push us in the direction of CW or statins!

                    As for me, I've had a few weeks of increased fruit eating, which was my own fault in that I decided to increase my total food intake, added breakfast back in to what had been a successful one meal a day IF routine and ended up on a fruit binge. 3 weeks and 16 pounds heavier and with an acne flare-up, I've managed to get back to vlc though not yet IF and the first few pounds are disappearing. That will teach me to mess with what was clearly working, for the sake of trying to avoid problems I didn't actually have yet. * headdesk *
                    Me, My Father and The Alzheimer's - http://www.marksdailyapple.com/forum/thread84213.html

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                    • #40
                      Hows your dad mate any updates?

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                      • #41
                        Originally posted by Browndog1986 View Post
                        Hows your dad mate any updates?
                        Much the same thanks. Hmmm, hadn't realised how long ago that update was.

                        So, with the coconut oil apparently working so well, I moved him onto mct oil, which is pure medium chain triglycerides, the part of coconut oil that gets converted in the liver directly into ketones. It's a smaller amount of oil for the same effect and he now has that 3 times a day before meals. I'd say we're holding steady. Completely hyper days are rare - though we had one yesterday and he kept saying he should go home and I had to explain that this is his home, he owns the house and has done for 35 years. Oh, he said, I don't use it very much then. Facepalm.

                        Today he's not so hyper, but then I think he spent the first half hour he was awake pulling the tape out of an audio cassette. I don't know if he tried to play it and it got tangled or what, but fortunately they're his own tapes and he can do what he likes with them if it makes him happy/keeps him occupied.

                        One thing I've noticed is that in the last month or so he's stopped complaining about his legs. He used to say, every time he got up, oh it's my legs. He's still just as slow and laboured in his movements, but he's not commenting any more. It might be an effect of the mct but I suspect it's more likely the cumulative effect of the horse chestnut tablets I've had him on for his haemarrhoids. They're advertised for varicose veins, but apparently will also reduce haemarrhoids, according to an ex-vegan (who went paleo) and a number of Amazon reviews. So he's been on those for about 5 months now and I'd say there's a reduction of blood stain in his underwear, but yes, no more complaining about his legs.

                        Otherwise, well, it's Alzheimer's. I'd love to know what effect all these interventions would have had if we'd known to start them when he was just showing the earlier symptoms i.e. memory loss, but still retaining general understanding and ability to process information. I'm guessing there just isn't enough working brain capacity to make the connections, though you can see him trying to figure things out. It's just that his thoughts tend to jump randomly rather than follow a logical sequence.

                        I think things are going to hold fairly steady with very gradual deterioration now until we reach some kind of watershed where it will all fall apart. Personally I think it's going to be about swallowing tablets and when he's no longer able to take the Alzheimer's medication (cholinesterase inhibitor), that will start a downhill slide. We shall see.
                        Me, My Father and The Alzheimer's - http://www.marksdailyapple.com/forum/thread84213.html

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                        • #42
                          Just an update to say not much has changed really. My father's still slowly declining. I feel we've done the best we can within reason. I do wonder what might have happened if we'd known about this at a stage where my father could have handled a full primal diet. Unfortunately by the time we started he already had problems with food textures and chewing so I've had to compromise with what I know he'll eat. But I still feel that we've helped extend his quality of life and his physical health.

                          As for me, well, it's been a stressful few months, so I've slipped a few times and suffered a few fruit/beer binges and resultant weight gain. I'm clearly dealing with the stress by eating and even though I'm still wheat and dairy -free, I snack too much and have had more carb cravings recently. I know a lot of what's underlying this, but until I'm free to arrange my life to my own requirements instead of my father's, it's going to be tough going.

                          Still hanging in there.
                          Me, My Father and The Alzheimer's - http://www.marksdailyapple.com/forum/thread84213.html

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                          • #43
                            My father's condition is still slowly deteriorating. He's more often confused about or just doesn't recognise where he is. Physically he's doing quite well and we've reached 3 years since diagnosis, which is the average lifespan of those diagnosed in their 90s. We have no problem keeping to grain-free because he's just not aware of food that he doesn't eat. I stopped giving him chocolate not too long after going wheat-free and he doesn't miss it because he can't remember it exists until I give him some. He's always happy when I give him a piece of cheese to nibble.

                            However we've now reached the stage where he's not really gaining anything from being in a house he no longer recognises as his own home. Where I'm now losing out by being unable to organise my own health/fitness/life. So we've got him on a waiting list for long-term residential care - at which point I have to acknowledge that his diet will revert to Standard British Diet and I anticipate a rapid deterioration in health and advance of the Alzheimer's. We've done our best to extend his quality of life as long as possible and while his mental capacity was enough for him to appreciate it. Now that I see him struggling with toileting and caring for him has become a lot more than just being there if needed or keeping an eye on him, it's really a job for more than one person.

                            As for me I've now gone back to IF - one meal a day - which stops me snacking and hopefully will kick-start fat loss again. Though I've been holding steady the last 6 months, I still have a major spare tyre going on and similar fat stores elsewhere. As my exercise options remain limited and irregular, it's probably my best option. But I've had no problem staying off grains, legumes, nightshades and dairy which is a plus, with just the odd lapse into fruit/beer/carbs binging. I'm really looking forward to being able to eventually follow the PB in the rest of my life beyond food - especially sleeping and moving around a lot!
                            Me, My Father and The Alzheimer's - http://www.marksdailyapple.com/forum/thread84213.html

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                            • #44
                              Wow. Your story and journey so far has made me tear up.
                              Thankyou so much for sharing this.

                              My father has dementia and I am now wondering if I can get involved with trying to slow its progression. I live a fair way away from my parents so i don't know how or what I should do.

                              Plus changing dads diet would be hard, (eating and wanting what he's used to) as well as changing my mum and dads way of thinking about diet and food. Hard, but hopefully possible. I can't not try.

                              He's deteriorating quickly but he's still able to function daily at the moment, knows who we are etc. Sentences and thought processes are going quickly though.

                              My father hasn't been classed as alzhiemers, but dementia. Cutting wheat and grain and supplementing like you have and doing the CO will still help right?

                              I need to talk to my mum to see if she could handle some suggestions. She is finding it incredibly hard to cope with dad, so any "change" to her will be stressful to a degree. Surely the chance of slowing this mental degradation of her husband would be worth it though?

                              I thank you again for your story.

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                              • #45
                                There's no telling if it will have the same effect, but if it does, it seems likely it'll become apparent fairly quickly. It took no more than 3 - 4 days for me to notice a change, while your dad will probably notice for himself. You may like to suggest that he just tries cutting wheat and processed foods for a week to see if anything happens. And the best way to encourage his participation is probably to emphasise the things he can eat, e.g. instead of cereal or oats for breakfast to say - how do you fancy a week of bacon and eggs for breakfast? Steak/meat and chips and eggs and/or veggies for dinner and maybe fruit and cream/ice cream for dessert if he has to. I wasn't even using coconut oil at this point and basically had him snacking on chocolates instead of the biscuits and hot cross buns I'd been giving him. And initially he was still having rice and sweetcorn, just no wheat.

                                I'm not sure how much the supplements have helped, but they certainly haven't hurt. Again perhaps not to overload your parents just suggest the cutting out wheat for a week (but this really means all wheat containing foods including sausages) and if there's some improvment then look at extra supplements - B12, D3 and K2.

                                I'd suggest steering clear of gluten free alternatives and just suggest whatever will help him to avoid wheat for a week. If it helps then it'll be easier to suggest other changes that might help. But ultimately it's going to be up to him and some people do seem to resist change even when it's as serious as dementia. Best of luck.
                                Me, My Father and The Alzheimer's - http://www.marksdailyapple.com/forum/thread84213.html

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