After several weeks of stability and no new problems developing, I was surprised by what happened today.
Dennis decided he should go for a walk. It’s been cold and rainy, making it easy to stay inside without really planning to avoid exercise. He realized his walks had been infrequent. He also has had trouble sleeping and staying asleep and thought the exercise might improve that problem.
I noticed right from the beginning that he was walking slowly. He had to be reminded every few steps to pick up his feet and walk instead of shuffle. We got to our turnaround point and he began to lean to his right and couldn’t straighten up. The steps got shorter and he said he had to stop for a minute.
I thought his posture might be making it more difficult to walk because at this point, he was leaning back and to the side, with his belly thrust forward and his knees always bent. It was very strange and he couldn’t correct it, but he insisted on “walking it out”. A few steps later he was locking up and hardly able to move so I ran back to the house for the walker with the sit down option. He tried to walk with it but soon gave up and sat down. He pushed himself backward, seated in the walker, all the way to the house. He even had trouble with that. It was very odd.
He was also puzzled, but decided that he had gone too far and had simply gotten tired. He was glad to be back in the house, resting in a chair that he could easily get up from.
This whole episode was very Parkinsonian in nature. I have thought that perhaps he was getting better, reversing some of his symptoms affecting mood and cognition. That may still be the case but this is a setback toward a movement disorder. It’s unsettling to me. I have been counting on him being able to move himself. If he loses that ability I don’t know if I can care for him without more help. Not good.
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.
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.
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 has been a week since I last asked myself how we are doing. Funny how it is easier not to do that too often as it could lead to incredibly sad thoughts.
Dennis still thinks he is getting better, or at least holding steady. I think he is doing well cognitively but his motor problems are still there and worsening some. We can sit and have fairly reasonable conversations. He is able to talk about his condition without as much denial, although he still has to try to figure everything out – every new symptom, every change in the old symptoms, figure, figure, figure…
Since returning from the meadow to the condo he has tried many different sleeping arrangements, in search of the perfect, comfortable night. He never quite arrives there.
For a while he slept in the master bedroom, but immediately there were issues with the bed being too high. We have different temperature preferences as well so I would end up sleeping in a recliner in the living room just to keep cool.
He moved to the guest room and for a while I thought we had a good thing going there, but no. Soon the mattress was too soft and he couldn’t turn over. There was no solid surface to push against.
The search for a firmer mattress took him back to the master bedroom. It also has a smaller twin bed that he slept in several nights before he began to be uncomfortable. He had his back injury by this time and had difficulty getting in and out, or moving at all. He would lie on one side only all night and that side was getting sore. But the smaller bed gave him no room to turn around without hitting the wall. He also was noticing the amount of drag that his clothing gave on the sheets. Every time he tried to turn he would either lose his blanket completely or get tangled up in it.
Next he remembered an offer of a firmer mattress to exchange for the one in the guest room. My brother and I hauled the mattresses back and forth and surprisingly, it resulted in a lower bed, a firmer mattress. I thought it would be perfect. He practiced rolling from one side to the other. He measured the distance to get his feet up on the bed, and the distance he sunk down when sitting on the side (he does this on all beds now – the firmness test).
Having discovered the blanket problem, he now decided to sleep without them. This is when he started measuring the temperature of various parts of the room with his infra red thermometer. It was too cold for sleeping without covers. We had to get a heater, which we did. Keeping the door closed was also necessary to keep the heat in so, for safety sake, we also had to get a monitor so I could tell when he needed help.
It took several nights of trying the heater in different places – a chair was too high and made the floor cold and the ceiling too hot. The air wasn’t mixing right. He cannot be in situations like this without reverting to his lifelong career of figuring out why air does what it does. This morning after getting up he asked me to go into his “incubator” and measure the temps – 80 degrees F on the ceiling, 78 pretty much everywhere else. Perfect. You would think.
Another spin off from his “out of whack” heating and cooling system is his desire for longer hair. Winter is coming and his head will certainly get cold. He has resisted having it cut and also doesn’t want to shave his facial hair. He was looking quite shaggy and unkept the other day when we went into Dairy Queen to buy a couple dinners. He sat down to wait while I fixed our drinks, which I put in the truck. I told him he could go out and get seated and I would wait and bring the food when it was ready. He went out. The people at a nearby table were concerned and about to follow him out and bring him back, since his appearance and way of moving signaled that he was obviously not all right in the head. They were afraid he was running away and would get lost. Wow.
The good news is that today I convinced him to get a haircut. My nephew has recently started work at a barber shop in town and I framed the outing as a chance to encourage a young person in their career. That is definitely something that Dennis responds to these days. It gives him purpose and a way to connect with someone other than his wife – me. I’m also grateful for that.
He looks pretty spiffy now, hair cut and beard trimmed. Definitely worth the price.
As I have written, he decided to run because he could. Well, it seems that he shouldn’t have assumed that he could, not without consequences.
His back became really painful as his muscles responded to the “running”, which made him remember the chiropractor, and how long it had been since he’d gone for an adjustment. We went twice last week and he got enough relief each time that he was very impressed with the chiropractor and how much he knew. Still, he had problems that returned each night as he slept.
I say “slept” but I’m starting to wonder if he does get much sleep. He tells me in the morning that he has been awake to go to the bathroom nearly every hour. He no sooner gets back in bed, than he has to go again. It’s almost like the act of lying horizontal causes him to feel it.
This morning when I came to ask if he was up and getting prepared to go to church, he definitely was not. Every movement of getting out of bed, trying to walk with the cane, sitting, standing again – it was all so slow and guarded that there was no way he could go anywhere. He does not tolerate pain well. So our plans for the day took an about face.
Not only did we stay home from church, but we also cancelled on a dinner out with friends because he could not get dressed, or ride in the car, or wait for a table. He did not want to be left alone at home either. It’s not that he will allow me to help him or touch him, he just wants someone to stand by if needed, and to listen to him talk of all his calculations about how to move, or why he can’t make a certain movement. I have to keep reminding myself that he can’t help it. It’s the disease.
This is a disappointing setback in our stretch of fairly stable days. I know it’s a bit selfish but, I also really wanted to go out to dinner…
I have to say that I am relieved. We have had nearly two weeks at home that have been relatively stable. Dennis is doing so many things that seem different than the usual LBD heaviness, not that it is all gone, but he feels better much of the time. That makes it easier for him to think, converse, and go places. He watches TV, eats regular meals, sleeps at night for the most part.
Last night he came in, puffing and panting and looking a bit haggard. He said he had just run on his usual walking route. I asked him why did he run, and he said “because I can.” Okay. This is the guy who would hardly walk more than a few feet two weeks ago. He’s decided that he should push himself to exercise, knowing that he will not want to do it, but should for the benefits it provides. He decided he should learn where the dishes get put away in the kitchen so he could help with clean up. He’s been shaving himself and doing a much better job of it.
His vision is still pretty bad, he still has some obsessions with how he’s feeling and reports almost minute by minute. His whistle is gone, or his bathroom time didn’t go well, or he has no feeling on the right side of his face – stuff like that. Every now and then he worries about the electricity thing, that it will come back again when the water table rises. But over all he is doing so much better that it gives me a much more pleasant life. I cook meals, garden, fix the condo up a bit, visit with my mom and brother’s family, take walks and bike rides by myself. I feel somewhat normal, even with the limitations of our situation.
He’s looking silly on purpose. Just thought I’d let you know.
Once last week, we loaded up the lounge chair and went out to Round Lake. I set him up near the water at the boat landing where he could watch people and boats. He even shelled peas while he was there, although I would not give him the job again unless he gets a little faster at it. I was able to take a long walk and swim before we came back home. It was a lovely afternoon. I want to do it again.
The question I have is, “how long will this last? It’s an evil disease from what I hear from others. We have been blessed so far that he has not been so confused as to get violent, has not had hallucinations, and has not been so debilitated that he couldn’t move, eat, speak, etc… We’ve been dealt a merciful hand and I am grateful.
Tomorrow we will have been gone for two weeks. We did the 16 hours (more if you count the slowdowns around Chicago) in two blocks and managed our night in the motel without difficulty.
In Pennsylvania we had sleeping quarters that were somewhat small so I opted for another room and gave Dennis the bed on the main floor close to the bathroom. The temperature regulation problem was one of the first things I noticed. There was a heat wave around the whole country at that time and Dennis’s head was getting hot all the time – only his head. He started putting a wet washcloth under his hat and wearing it most of the time. Of course, this discovery of efficient cooling had to be shared with everyone – they had to try it, and he was always telling me how everyone loved it.
The rest of his body was often cold. Since there wasn’t central AC in the house, his room was warm enough at night to please him. He often complains of sweating and freezing at the same time, so it is very hard to know what to do for him.
Dennis in his cooling hat.
Behavior wise, I did not notice big changes from previous times at home. He was often dramatic in his lectures and stories, often weepy and emotional. It was usually in a grateful way but toward the end he was getting depressed, it seemed to me. He was concluding that all were getting dementia and declining, especially his sister. Somehow the family history of heart problems was also getting lumped in with dementia and becoming the tell tale symptoms of “fatty liver” disease, which he thinks is his correct diagnosis because that is familial. LBD is not familial and the doctors wouldn’t have diagnosed him that way had they known his family history. Somehow he thinks that they skipped that part of his exam at Mayo.
Another behavioral thing I’ve noticed lately is that he isn’t able to sit for very long, especially on hard chairs. He feels he has lost all his cushioning fat and gets sore quickly. Of course he has even less tolerance of standing, so that leaves lying down. He does a lot of that. He was often sleepy in Pennsylvania and much of the visiting went on around him as he slept in his chair.
The day’s drive to North Carolina was uneventful. We didn’t have a heavy breakfast before we left so he wanted to stop for lunch. We pulled off and took what we found that wasn’t fast food – Golden Corral. He went in and sat down. I had to load his plate for him so he wouldn’t get confused with all the choices. I found a good, simple meal for him so he was satisfied, but I noticed that he was easily confused, sleepy afterwards in the car, and anxious for the trip to be over. He’s starting to think that the truck electronics are causing him to feel bad during travel. He thought it had to be the Bluetooth technology but I told him the phone was connected by wire to the truck, so he’s re-thinking that and I’m sure he will come up with something.
In North Carolina, he is back on what he calls his “regimen”, of which magnesium is a part (he has always been on that), and periods of autophagy. He loves to use that word. He wants a substantial breakfast, no lunch, and an early supper. That gives him a day time autophagy and a night time one. Every day he tells me which things have improved. His whistle came back today. Yesterday he wanted to know if I would celebrate with him as he had been able to spend time on the computer and had walked outside for a few minutes as well. One day he was excited that he had executed the complicated maneuver of setting his coffee cup on a dresser a short distance away from his chair – actually did it twice. It doesn’t take much to constitute improvement.
Here at Julie’s, the temperature problem is worse. The first night in a comfortably air conditioned room nearly froze him to death. I was loving it. However, he has no trouble asking that everyone accommodate his idiosyncrasies. We have had to go without the AC and use only the fans, accompanied by the lecture about how moving air will make you feel cool even when you are hot. What!? No way! Julie needs her sleep and opens a window after it cools down outside. I, on the other hand, do not need to sleep in a cool room, I guess.
I had to give away my piano when we left Florida and we talked about replacing it someday with something more portable like a nice keyboard. Since Greensboro is a fairly large city with a few music stores I wanted to look for a keyboard while visiting here. Dennis was all for it until we were sitting in the store surrounded by all kinds of electronics when it occurred to him that a keyboard was a digital instrument with electricity involved. The sounds are not real, they are electronic reproductions. He even woke up that night very confused, saying he felt like he was not real himself and in an unfamiliar world. I can feel him eyeing my new keyboard and getting anxious. I’m thinking I will have to refrain from using it around him and keep it covered at home, if we ever get to live at home again.
One day I overheard him telling some actually untrue things to someone on the phone. One of the things was that the farmhouse Julie’s boyfriend had bought was unlivable, and was going to take all kinds of renovation before it could be lived in. It made me realize that he doesn’t hear details correctly and makes wrong assumptions. Another thing was the “fatty liver” disease he has, which made me realize that even when he’s told details, he reverts to thinking his delusions anyway.
He wants to go home by way of my brother’s house in Michigan, an 11 hour travel day. This is probably what we will do, but until today I had not verified arrangements with my brother. This morning Dennis asked Julie to pray about us going there as he had a special reason for wanting time there. I was a bit suspicious about him asking her, but not telling me so I talked with him about it. He said it was not any of the reasons I thought, but still has not told me what it is. I think I’m worried…
I know changes of any kind can be very upsetting, both to the elderly and to someone not feeling well, but we needed to travel. Dennis has been very emotional since his LBD diagnosis and at times feels like any moment could be his last. He has wanted to visit his hometown in Pennsylvania and see his family again, one more time. I agreed.
He also is still convinced that our condo is improperly grounded and has an electric field that is killing him. He felt that two weeks on the road might make such a difference in how he felt that he would be using his computer again, doing research, reading, and working on his book project. I asked him to think about what it might mean if he didn’t feel any better after time away from the condo. “It would mean that I wasn’t gone long enough. That’s the logical conclusion.” So, although I will look forward to a return home at some point, he will not. He’s already dreading it and doesn’t hesitate to say so.
The travel to Pennsylvania went fairly well, although it was a bit like traveling with a small child as far as getting in and out of restaurants and the motel. All things seem exaggerated to Dennis and are potentially upsetting. The 10 minute delay due to traffic conditions becomes “the most awful” part of the route, even though it was par for the course to my way of thinking. The pay stations on the toll road were “terribly stressful” and upset his stomach. Stopping for the night caused him to be so grateful for God’s help in solving our problem when I wasn’t aware that there was a problem – it was the plan.
I expected that he would feel exuberant after his first night of rest at his brother’s house, but he was very quiet and wanted to go back to sleep instead of having breakfast at the hometown cafe. He had very little energy all day and fell asleep for a while, surrounded by visiting relatives and busy chatter. He cried when talking to his sister and brother, and kept thinking of things to talk about of a “final” nature. I can see that this visit might take a lot out of him. I don’t think I can do anything to help with that.
It started badly with Dennis being up nearly every hour throughout the night for varying reasons. By morning I felt sleep deprived and had a headache. He was ready to be up and taken to breakfast somewhere. This was the first time for leaving the trailer since Day 1 so I insisted he clean up first – shave and wash with water heated on the camp stove.
We drove into town and had a good breakfast, but had nothing to do after that so I took him back out to the meadow. For fun (but really because I could no longer stand the mouse smell) I cleaned the sky lights in the trailer. One had a nasty mouse nest in it and I ended up taking all the screens into town with me to clean them with plentiful water. My brother tells me that we have probably stayed in the trailer longer than anyone else, and little by little we are cleaning and fixing what we can.
Maybe I feel a little bit guilty when I leave the meadow to go into town for the day. Sometimes I come back for lunch, or on days like today I take him back around noon and he stays there himself until close to dinner time. He sleeps and eats and doesn’t seem to mind that there’s not much else he can do. At our condo, I enjoy modern day pleasures such as air conditioning and running water. When I come in the evening, it is his best time of the day. He seems pretty normal in his thinking and is usually moving around a little better as well.
We warmed up some soup and sat outside, watching the meadow as we ate. A deer walked across the far end, stopping every few steps to look at us. A hawk did a circle around the meadow and landed on the top of a tall pine, probably scoping out the newly mown field for rodents. There are small birds everywhere and the singing never goes quiet while there is light.
At times I think Dennis realizes that he’s not getting any better on a lasting basis, that there are only fluctuations, although he never voices that himself. Today he said he was glad that we had started long ago to prepare me to take over major responsibilities, like buying our vehicles, driving everywhere, making financial decisions and pretty much planning our future. It was kind of an admission that he doesn’t plan to return to those responsibilities.
At the same time he has lately been restored to hope with the verse from the Bible about nothing being impossible for God. (Matt. 19 verse 26 I think). Having just thought about that and asking for the reference in the morning, he brought it up a little later in a phone conversation with his brother Ron. His brother was surprised when he heard that because, as he was talking with Dennis, he had been reaching into his coat pocket to remove a stone that he carried around with him. Inscribed on the stone was that very same saying “with God nothing is impossible”. When things like this happen they are like affirmations directly from his Heavenly Father and they bring Dennis to tears.
As they say in my online support group, LBD is a ruthless, horrible and very sad disease. The only hope is knowing a God for whom nothing is impossible.
Hope in the Face of Dementia 