LBD

Our Functional Medicine Doctor

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December 4th was the long awaited appointment time with the functional medicine practitioner.

Dennis was very excited about the book “End to Alzheimer’s” by Bredesen and wanted to find a doctor who would put him on that protocol. The book pointed us to a website of functional medicine doctors and lo, one of the ones listed was in our medical group.

Armed with all his records, and having filled out numerous detailed questionnaires, we made the 90 mile trip to Duluth for our morning appointment. Dr. Nancy Sudak, who is also a family medicine practitioner, spent 90 minutes with us! That is more than we could have hoped for, but even with all that, she had to tell Dennis to stop his stories and let her get to pertinent facts (in a kind, respectful way).

We liked her demeanor, and she was patient with Dennis. She did allow him to talk about his spirituality, his words from God, etc… without making him feel demeaned or demented. At the conclusion of the interview she even approached the subject of needed changes by asking him to ask God about the changes. Would God want him to consider going gluten free or dairy free in his diet? I thought that was pretty clever.

She also had heard of Dr. Bredesen’s protocol and was interested in it. She ordered some of the pertinent tests which we remembered from the book. (GImap, bloodwork) She also was able to recognize the measures Dennis had already implemented and encouraged him in them.

Overall, it was a good start. The only disappointment was that she had basically nothing to recommend until the test results returned and couldn’t give another appointment time until February. It will be a tele conference this time, so we won’t have to go so far.

December: Monthly Update

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Thanksgiving has come and gone. December is almost over as well. This is our second winter since the diagnosis and I was thinking over the past year and comparing our present with the past.

Dennis is thinner, less physically active and a bit more dependent, but not drastically changed. I think I notice Parkinsonian symptoms increasing faster than anything else. His hand trembles almost all the time when he isn’t holding something or doing some motion. His face is rather mask-like and his voice is soft, monotone and often hard to distinguish. He always shuffles now, especially outside when he’s trying not to slip on snow or ice, but also in the house. And he is sooo sloooow.

Since the hospitalization last month he has not had any trouble with thrombosis – but, of course, he is on an anticoagulant. The doctor says he may have to stay on it indefinitely. He has had continuing trouble with his blood pressure being high and we are still working on getting that stabilized.

He has been much more content to stay at home by himself. He watches a lot of TV, talks on the phone to anyone who answers his calls, and does a lot of thinking (and a few naps). Yesterday I was even able to leave him at home while I took Mom to the doctor for outpatient surgery. He found his own breakfast and lunch without having to call me, which is an accomplishment for him.

One thing we have added is a membership in the senior fitness program at the hospital. He uses the stationery bike when we are there, usually for 39 minutes and then he is done. I have to instigate our trips there and I intended to be faithful at that but no, haven’t done so well.

December is his birthday month. In fact, his day is the day after Christmas, which means he’s always felt a little anticlimactic. It’s a good thing he doesn’t have expectations of grandeur. We usually have to remind him that it’s his birthday. This year both daughters are coming to celebrate with us. They have been faithful visitors since the diagnosis of Lewy Body Dementia. He will not have a hard time enjoying them since he is still quite good cognitively. I got him a couple of things too, but I cannot say what they are because I want them to be a surprise.

The thing that disturbs me most lately is that I feel emotionally distanced from him. I don’t know if it’s my problem or his, or a combination. Some days I spend time reading to him and that seems good, or I take him to exercise and to lunch, also good. But a lot of days I would rather spend my time elsewhere. His interests and topics of conversation are very limited and not very interesting to me. I feel like he talks at me, not with me. Once he starts it’s hard to get him to stop and I often just walk away without him seeming to notice at all. He just keeps talking. I seldom want to watch TV with him. I’m thankful I have a room to retreat to, where I can read or talk on the phone or watch a movie. I know I’m neglecting his social wellbeing, but I am not sorry enough to do something about it.

I have asked him to think about what he wants to do for our anniversary in mid-January. He isn’t saying much.

Hospitalization #1

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11-16-2019

Dennis has had a lengthy time of stability – a couple of months with no delusional thinking. In fact, he seems to be doing better cognitively, having read a couple of books that really interested him and comprehended them. He does a lot of TV watching, and for a while it was only sermons on TBN because violent shows or even the news was too traumatic for him. Now he’s back to watching the news and some documentaries, and that is almost back to pre Lewy normal for him.

Back on November 1, in the morning, Dennis met me in the hall as I was going over to check on Mom. He said his leg had felt funny during the night when he woke up – not exactly painful, but swollen and harder. I felt it and agreed that it was slightly larger and warmer to touch. It was worth sending a note to the doctor (my Health app gives access) and they messaged back that he should be seen in the clinic. He got in by 11 am and they decided to check for DVT with an ultrasound of his leg. We were walking over to radiology when he got faint, diaphoretic and couldn’t go further. I got him a wheelchair and we made it to the ultrasound. He felt better by then so the tech did the procedure while I watched.

They saw an extensive DVT and sent him to the ER right away. I was impressed with the number of people who practically mobbed him. He was hooked up to all the monitors in no time flat. The ER doc sent him for an CT scan of the lungs and it showed multiple emboli in both lungs. So it wasn’t long before he was put on anticoagulants and admitted to the hospital.

The whole ordeal sent his blood pressure sky high too, so he was put back on medicine for that as well. He stayed for two days and was discharged on Sunday afternoon. All this to say that he has been tired and weaker than usual, even though his cognition has seemed better. He stands and walks like a very old man, his right hand is afflicted with a persistent tremor, and everything he does is slow, slow, and slower.

He had a follow up appointment this week and when getting ready, he was commending himself for showering and dressing himself without help. Is he getting somewhat more independent? Maybe.

From time to time he puzzles over his “words” that he is sure God has given him, and tries to reassure himself that he hasn’t made them up. A couple of days ago he had an “aha!” moment over the word “proteolytic”. It has been harder to figure out than some of the other words and he hasn’t been able to attach it to any certain function, until now. It was brought to his attention after the CT scan that he had some sort of mass showing on his stomach which will need to be addressed after he is done with the anticoagulants. He started thinking maybe there would be a connection to the proteolytic enzymes, and sure enough, he found an article where someone’s stomach cancer had been eradicated with bromelain, an enzyme in pineapple. So God had him working on his stomach, eating pineapple and taking proteolytic enzymes way before he even knew he needed them. He’s expecting the mass to be gone by the time it’s investigated.

He is not exactly at the place where I feel he would be safe alone at home. He doesn’t find things easily, including food and clothes, so it might be awkward if I left for any length of time longer than a few hours. I cancelled my trip to NC for a writing conference and watched it online instead. Maybe if he had to take care of himself, he would rise to the challenge, but I think it would be hard on him. I think it’s going to be a long winter with a lot of staying home for us.

A Problem Walk

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10-2-2019

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.

A New Normal to Be Enjoyed

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9-24-2019

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

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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

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9-8-2019

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.

Mattresses, Heat/Cold and Hair

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9-6-2019

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.

Disappointment

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8-25-2019

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…

Because I Can

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8-17-2019

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.