What Next?

February 24, 2020

Is this going to be the end of our half year of stability? I hope not, but things do seem to be getting a little weird lately. I really think the protocol the husband has been on has done good for him so it will be a disappointment if we run into trouble again. Going backwards is not fun.

In November when he had the DVT, he was put back on blood pressure medicines because he was very hypertensive. An additional one was added a month or so later because he was still running high. Well, his readings started coming down and then he began having times when it was low enough that he would feel dizzy and weak. I took away the diuretic and that helped somewhat. Now it is low more often and we have started cutting the last BP med in half. It might be that we are back on the autonomic nervous system “roller coaster”.

He has also noticed more hand tremor, and it is affecting both hands now. Because all this is worrisome to him, he has started back on his research in earnest. That, and watching all his favorite TV preachers every day keeps him quite occupied. He is still thinking logically, and his temperament is good, but I’m thinking this could get very obsessive, if not delusional. I’m so hoping NOT because…

I’m taking some time away in March to be with my daughter in Seattle. My brother Gary and his girlfriend Lyn are coming to stay in the house with Dennis. I’ve assured them that he doesn’t need actual care, just some oversight and help with meals and questions about where things are. Nothing about travel is easy here. With the arrangements I had to make to get to the airport, Dennis will end up being by himself for about a day and a half before Gary arrives. There are others who can look in on him. I’m counting on this to be okay.

At first I thought we might both go on the trip and Dennis was surprised and trying to adjust to the plan. When I told him he didn’t have to go, he was somewhat disappointed, but also pleased that I thought he was well enough to stay home without me. I don’t think it’s making him anxious. I could be wrong.

New things include some fancy probiotics and liposomal glutathione which the functional medicine doctor (Nan, she asked to be called) has prescribed. Correcting what is happening in the gut is very important to her. We are also giving “gluten free” a trial. The dining room table has a growing collection of bottles and containers now, which I’m not too happy about, but it’s too much trouble to put it all away in between uses.

I should get him walking/exercising again. We did so well for a week or two and then we started having to avoid germs and being around people with colds. We have a family member in cancer treatment who has low immunity. I know we can’t stop living normally – she wouldn’t want that – but at the same time it would be awful to be the ones causing a dangerous infection of some kind.

All for now. Can it be spring is almost here?


Time Goes On

I have not updated for a while. It has been a relatively quiet time lately and I hope it continues for several more months, if not for the duration. We are getting pretty good at living with things the way they are now.

Today we did very little other than visits to the local clinic. Dennis has been feeling good he says, but then he doesn’t deal with pain so seldom has real complaints. He hasn’t had dizzy spells, or been confused lately. Last week he walked almost every day at the hospital. But this morning, he had trouble feeling normal. His ears felt plugged and sounds in his head (his own voice) were uncomfortably loud. He said his swallowing was problematic. A good day to visit a doctor.

Our first appointment was a tele-conference with the functional medicine doctor. We were there at 10:15, only there were computer problems. Two hours and three nurses later, none of whom could solve the problem, we left. They told us to check back with tell-conferencing when we returned in the afternoon for a visit to our primary doctor.

We did get something done during the time at home between appointments. We both took a nap.

We had a good bit of news when talking with the primary doc. Dennis gets to stop taking the blood thinner – the one that costs $500 for a month’s supply. However, now that he is going off that med, he is clear to have investigation of the stomach mass that was seen on the scan in November. So now he is scheduled to have an upper GI endoscopy on Monday. They use propofol , which isn’t reputed to give problems to LBD patients. They might be able to get a biopsy through this means and it was the easiest first thing to do.

The computer problems were solved when we checked in with the tele-conference room so we were able to spend the 45 minutes with the functional medicine doctor that we missed in the morning. She went over some test results with us and recommended that Dennis go gluten free, and start several new supplements. Overall she was very pleased with test results, especially the lipid profile and A1c. Apparently he’s healthy as a horse (I searched for a better analogy… didn’t work). We walked one circle in the hospital halls afterwards and then went home.

I don’t know what to say about Dennis. He tires easily. He sits most of the time either looking at his phone or the TV. He goes to sleep early and wakes up late, and takes naps. He’s very slow in most movements, but can occasionally go faster if he thinks of it. His right hand tremor is still there and he thinks it’s starting in his left as well. But, he has been remarkable calm, self-controlled, and capable of taking care of himself for hours at a time. He still has a simplistic view of human physiology and is always researching new ways to clear the amyloid proteins out of his brain. The latest attempt is to take black cohosh which he thinks is a natural source of secretase, a proteolytic enzyme. I’ve tried to convince him otherwise – no luck.

He loves to think about spiritual things and enjoys our time reading Bible and having devotions. He’s very concerned about others, especially our sister-in-law who has cancer, and prays for them. He talks mostly about the things he’s seen on TV even when others don’t seem to be interested, so still not very aware. One other thing I notice is that his voice is always soft and breathy, like his throat is swollen. It makes me hurt to listen to him and I often have to ask him to repeat. His speech is flat and without vocal variety.

He wants, with all his heart, to believe that he is reversing his condition by the things he is doing and that Dr. Bredesen’s treatment of Alzheimer’s is working for him as well. I imagine it was disappointing for him to hear Dr. Sudak say that he was a little “ahead of the science” – that is, if he really heard it.

A New Normal to Be Enjoyed


We are continuing in a pretty pleasant place for several weeks now. There have been no big changes, no unusual delusions or fears – just a slow and steady movement toward a routine and a “new normal” life.

It has allowed me time to finish the garden and do some canning and freezing. I’ve become more regular at cooking meals and even sharing mealtime with family once or twice a week. I’ve bought a few things for the house, which some people call “nesting” and we’ve settled into our two bedrooms. It works fine to separate us at night since we like different temperatures and wake at different times. I get much better sleep this way. This is all possible because Dennis’s back pain has resolved and he is able to manage himself by himself. He is able to get in and out of bed, adjust his own blankets, and get to the bathroom without my help.

Also, another delusion was discarded yesterday. It has started to bother him recently that he misses so much of any conversation. He was investigating buying new hearing aids of the old analog style, ones that wouldn’t be beaming microwave radiation into his head. Somehow he convinced himself that the tube going into his ear was just a sound tube (which it is) and that it was perfectly safe to put his old hearing aids back in. Some articles I’ve read do express concern about the small amount of EMF emitted by the part of the hearing aid worn behind the ear because they are worn for so many hours every day. I am not directing him to those articles.

He has decided to go with a mustache and beard instead of trying to shave every few days. Last week we went into town and he got a professional haircut and beard trim, something he has hardly ever done. I have cut his hair ever since we were married so it was kind of a treat for me too. I thought he looked pretty good.

He reads a little bit again. He watches TV a lot – only shows that don’t upset him. He takes short walks without the cane or walker, eats his meals without trouble, and has been much easier to converse with. He seems a little more aware of his appearance. His blood pressure has been lower on a regular basis. All this is good and we will enjoy it as long as it lasts.

Is any of this due to taking magnesium, following a largely keto diet, and being healthier? Is it a slow healing in answer to prayer? Is it only a fluctuation in the course of LBD? I don’t really know and am wondering. Time will tell.

Functional Medicine

Some things are so complex they must be digested in small portions. That is what I’m feeling now, since reading the “End to Alzheimer’s” book.

Dennis has been questioning why we aren’t rushing down to the medical lab in Eau Claire and having him tested so he can begin the reversal process on his LBD. Last night I followed up on the tests recommended in the book – some 50 of them, each from $100 to $300 cost. It was difficult to tell if the lab offered the specific tests that we would want. It was also difficult to know which should be done first, if some were more important than others. It was above my pay scale to figure it all out. Which led me to the recommendation to search out a functional medicine doctor.

I really like the direction functional medicine is taking. I ended up watching an hour long lecture by a doctor at Cleveland Clinic. He was explaining functional medicine, where it started and why it was needed. I totally agree. It has added another very complex area of information to consider in the battle to save Dennis’s brain.

I will not take the time to explain what functional medicine is except to say that we are seeing the results in the medical news when we hear about inflammation being the roots of so many chronic diseases. That comes from discoveries in functional medicine. Also the new emphasis on our microbiome and the problem of “leaky gut”. That also come out of functional medicine research. These doctors are interested in the root cause of chronic conditions. They are aware that each patient has different reasons for becoming ill and different remedies are needed. Good stuff.

I tried to give the simple picture to Dennis – why we are not rushing into the lab work. The good news is that there is a functional medicine practitioner in our health network. The office is 90 miles from us but we are used to going that far for specialists. I’m hoping we can make an appointment and get help sorting through the complexity of testing.

Meanwhile, I’m pretty sure we’ve been doing some of the right things in the magnesium supplementation, and the ketogenic diet (which we need to follow a bit more closely…) Dennis is feeling and acting better. We do not know if it is in response to what we are doing or just a fluctuation of LBD. Time will tell. At any rate, things are better right now and I, for one, am enjoying that part of it.

Finding Hope


I am excited to learn that what is happening in LBD is really the body’s attempt to defend itself. God has designed us marvelously and if we treat our bodies right, they will heal themselves. Sometimes, that is the miracle.

Originally, I started this blog site with the word “hope” in the title because I believed that God would help us through whatever was ahead with Lewy Body Dementia, or maybe even heal Dennis of it completely. I thought a miraculous healing was the only way that would happen. The medical specialists we encountered gave no other hope from their side of things. I was even a little shocked that having been given the diagnosis, and a prescription for a drug that could maybe help cognitive function for “a little while”, we were dismissed with no recommendation for follow up of any kind.

Dennis did some research shortly after that which started him on a different track. He believed, or wanted desperately to believe, that he was going to turn this disease around. Several things made him think that, one of which was a report that claimed cognitive decline in Alzheimer’s Dementia had been reversed in a small study. The patients involved responded to the therapy and regained what they had lost, went back to work and normal functioning.

Since then, the researcher, a UCLA based physician, has written a book detailing the therapy. He also shares the story of how the research progressed to develop a new understanding of cognitive decline in neurodegenerative diseases. I love this quote from the book:

“Now, often the most interesting and revealing experiments – the moments when an invisible chemical or an inconsequential cell can move the Earth – are not the ones that succeed as expected, nor are they the ones that fail outright: they are the ones that yield results that are just the opposite of what you expected.”

I can feel his excitement from the beginning of his search right up to the present. Hundreds of people have benefitted from this protocol which has been named ReCode and word is spreading quickly, thanks more to the web than anything else. Dr. Dale Bredesen and those who have gotten their life back after Alzheimer’s have a passion for conquering this devastating disease. He writes “…for if necessity is indeed the mother of invention, then perhaps passion is its father.”

I have finished most of the book, finally. We have had it for some time but there have been so many things to cope with, so many surprises, so many caretaking problems to solve, that I have been overwhelmed. Fortunately, we have been learning about and doing some of the things in the protocol. Even though I was skeptical of some of Dennis’s practices of magnesium supplementation, of autophagy, and his extremes of fasting and avoiding electricity, we have been doing a lot of it. Maybe that has been responsible for staving off further decline.

I am hopeful. Everyone should know about this because Alzheimer’s, Parkinson’s, LBD and other dementias are becoming epidemic and they can be prevented. As Bredesen and his researchers agree, no one should die like this and they don’t have to. Read the book. Find hope.

It’s All Connected


This is a list of links to articles that the husband has been reading and discussing with his brother for the last couple of months. I intend to read them one or two at a time and try to summarize what they mean, in addition to what they mean to him.

His research often starts with a symptom he’s experiencing and trying to understand. He uses google on his phone and reads, then he forwards the link to his brother who is a retired university biologist. One article will lead him to another one, and there is always a connection to be made to the next thing. Sometimes I can see his reasoning and other times I think he’s stretching things a bit. A common thread is that he believes many of his symptoms have something to do with magnesium deficiency.

Magnesium is needed for so many functions on the cellular lever that a deficiency could affect any organ system in the body. He believes correcting the deficiency could reverse the damage in the brain that causes diseases like AD and LBD. That’s what he’s trying to do.

http://www.LBDA.org  The Lewy Body Dementia Association, nonprofit, national

https://www.aging-us.com/article/100690/text#fulltext This is the article about reversal of cognitive decline that gives the husband hope

https://articles.mercola.com/sites/articles/archive/2018/06/27/autophagy-health-benefits.aspx?utm_source=facebook.com&utm_medium=referral&utm_content=facebookmercola_ranart&utm_campaign=20190205_autophagy-health-benefits  about autophagy

https://www.ncbi.nlm.nih.gov/pubmed/11850416/  this is where the interest in magnesium began

https://www.sciencedaily.com/releases/2011/01/110110103832.htm all about nitric oxide’s influence, enhance NO may prevent inflammation

https://www.fasebj.org/doi/abs/10.1096/fasebj.31.1_supplement.1035.4 he tries to figure out why eating cheese gives him a sensation in his head

http://milkgenomics.org/article/magnesium-milk-overlooked-mineral/ about how milk is a good source of magnesium and how magnesium has to be present for vitamin D to be processed

https://www.ncbi.nlm.nih.gov/m/pubmed/1390610/ soy beverages decrease the bioavailability of Mg and Ca

https://sciencing.com/red-clay-22940.html red clay interest him, however magnesium levels are low in clay because of leaching

https://draxe.com/10-bentonite-clay-benefits-uses/  the uses and actions of bentonite clay, a source of magnesium and a chelating agent for heavy metals

https://www.drperlmutter.com/bone-broth-benefits/  nutrients in bone broth such as collagen and other proteins contribute to skin health and gut health

https://www.ncbi.nlm.nih.gov/m/pubmed/10454449/  magnesium and autonomic cardiovascular regulation, hypertension

https://mail.google.com/mail/ca/u/0/#starred/FMfcgxwBVzsNPrgBfflvCRmRJSpkvsfg?projector=1&messagePartId=0.1  pdf of magnesium rich foods

https://www.thoughtco.com/laughter-therapy-verse-of-the-day-66-701910 laughter promotes health, use in relieving depression

https://www.rnareset.com/products/remag-magnesium-solution?variant=13899661319 magnesium in a more bioavailable form from Dr. Carolyn Dean – ReMag

http://researchpub.org/journal/jbpr/number/vol1-no2/vol1-no2-2.pdf Rapamycin and autophagy as potential treatments for AD

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4203545/ autophagy contributes to limiting viral


https://mail.google.com/mail/ca/u/0/#starred/FMfcgxwBVzrDtTxvLjhzbxfQDNnddRxD?projector=1&messagePartId=0.1 dietary buffers for dairy cattle – no clue why this is relevant

https://triggered.clockss.org/ServeContent?rft_id=info:doi/10.1124/mi.8.5.2 the brain, PTSD, TBI

https://mail.google.com/mail/ca/u/0/#starred/FMfcgxwBVzrCxWxJpDWHlDzrwLfNNQrV?projector=1&messagePartId=0.1 this is a good one on magnesium deficiency, why it’s widespread and dangerous.

https://www.dietdoctor.com/renew-body-fasting-autophagy doctor get Nobel Prize for discoveries about autophagy. Fasting and autophagy to rid body of damaged/broken cellular components

https://www.healio.com/optometry/nutrition/news/print/primary-care-optometry-news/%7Bf857ffe3-f195-4455-9040-4f353e311c9b%7D/pilot-study-data-indicate-macular-degeneration-responds-to-nutrition the role of nutrition and supplementation in macular degeneration

https://draxe.com/varicose-veins/ Varicose veins, home remedies and nutritional advice

https://www.viviscal.com/hair-care/magnesium-for-hair-growth/ magnesium deficiency can lead to hair loss and scalp problems, dietary and supplemental Mg can have positive effect on hair growth

https://articles.mercola.com/sites/articles/archive/2017/11/26/fasting-powerful-metabolic-therapy.aspx magnesium for maximum heart health

https://www.youtube.com/watch?v=kZFa-yw3znE Dr. Carolyn Dean on magnesium

https://www.youtube.com/watch?v=TDAjQFPiAIs&feature=youtu.be Dr. Carolyn Dean on fibromyalgia and CFS

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4455825/#__sec7title Magnesium basics, importance of Mg in numerous body functions