Lewy Body Dementia

Finding Hope

/ Shirleyjdietz / Leave a comment

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.

Traveling with Lewy

/ Shirleyjdietz / 2 Comments

7-28-2019

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…

A Necessary Trip

/ Shirleyjdietz / 2 Comments

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.

Such a Hard Thing

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Such a Hard Thing

6-20-2019

If it were not for hugs, I would not know what to do to preserve the relationship between my husband and myself. Sometimes it is all we can do. We have to quit talking and hug.

We often hit an impasse when he attributes his symptoms to something other than Lewy Body and I remind him that LBD is the most likely cause of most all his symptoms. “That’s just a name. Nobody really knows what it is, what causes it”, he will tell me. Whereas he is onto something big that may prevent LBD and other dementias. It’s something that God wants him to pursue, record and publish.

He wavers. Every now and then he wonders if he has heard correctly what God is saying to him. He will even think that LBD is something God is using to get his attention and correct him in his ways. He will get very introspective and cry. He might even conclude that God wants him to quit trying to convince others and trust instead. But he cannot quit thinking, researching, striving, so the next time fear or anxiety strikes he is right back in the game. There is always a new plan to present to me first, then to whomever he can get to listen and perhaps act.

One morning after requesting a serious talk, he told me that he would never hold it against me, or others, for not understanding. It was his fault for not being able to explain it well enough. I told him it was not a matter of understanding, it was a matter of believing. To him, his theories are facts that others should be able to understand. To others, his theories are just that, theories. And they are not the most likely explanation for what is happening to him.

He often suspects that I have been leading people to view him as unreliable in his ability to think and reason. I get requests to not do this, and especially to “change my song” when talking to him. He gets frustrated with me but is not angry, just obsessed and persistent. For that I am thankful.

He is seeing his illness as a very spiritual experience. He hears God speaking through it, and I agree that some of the things he hears are right on target. He has changed his mind on some important issues. But after he feels he has gotten the lesson and accepted God’s correction, he then looks for physical healing and wonders why God is withholding it. Then doubt, guilt, depression and self pity come rushing back in. He is more in touch with his feelings than ever before in his life. He cries nearly every day.

He is not crazy. He talks knowledgeably about many things. It’s his conclusions and his obsessions that make people question him, and they would do that even if I told them nothing.

Higher Ground Please

/ Shirleyjdietz / Leave a comment

6-22-2019

The last few days… we have been several places away from home seeking relief from the electric fields. We have spoken with electricians, we have prayed and battled spiritually, we have actually changed course and are no longer using grounding pads anywhere.

Dennis has had a couple new symptoms and I’m sure they alarm him. He has trouble swallowing his many pills. They are all supplements so it’s not critical he take them if he has trouble, but since this symptom was addressed at the conference we went to, it is an alarming occurrence to him.

Another surprise, he mentioned hallucinations. He thought he saw me coming toward him out in the field today – I wasn’t. He thought he saw a man outside the window but whenever he turned to see who it was, the man was gone. He said the H word himself.

But mostly it is still the electricity issue that is on his mind – trying to figure out why he feels tingling in his hands, cold extremities, dry mouth but drooling at the same time (???), and changes in his mental and emotional status whenever he is on the property and especially in our condo.

He would explain it this way. The code is written for single residences but our is a duplex. Because of that there are two grounding rods, 10 feet long and 6 feet apart. He looked up the code and found that it was a minimal requirement and didn’t take safety fully into account. He feels that electricity from one grounding rod is conducted through the grounding rod, into the wet ground (high water table) and feeding back into the other grounding rod and into our house through the neutral electric wire. Somehow this translates into the theory that if he gets up high enough above the water table his symptoms will lessen, perhaps go away. The rogue electric current is denaturing the protein in his body and creating more Lewy bodies faster than he can get rid of them with his magnesium water.

He talks these theories/facts endlessly, and I finally am telling him to leave me out of the conversation. I am not going to help him research electromagnetic shielding on the internet. I don’t want to hear about the dairy farms where this happens commonly, according to him. I am not going to try to lower the water table (he has ideas on how) or dig up the grounding rods and pull them out of the water.

As he says, he is sorry to be so much trouble, but the house and really the whole residential development is killing him and he has to get out. You have never seen desperation like this.

Fluctuations

/ Shirleyjdietz / 1 Comment

6-18-2019

I am so glad there has been a gradual change over the last couple of days. I don’t know if has been because I asked him to quit taking proteolytic enzymes for a few days, or perhaps it’s just a Lewy fluctuation. Either way, I’ll take it and be thankful because this has been a stressful week and a half.

Last night there was no begging to go elsewhere to sleep. He slept part of the time in bed and part of the time in the recliner. He came and got me every time he needed to change something and that was a bit reminiscent of my night shifts as a private duty nurse, but over all we were peaceful.

He did want to get out of the house early this morning and go to breakfast at the Family Restaurant, but hey, I’ll take breakfast out most any time. He figured getting away would help him recover from the hours spent overnight in the electrical field. He wanted to sound intelligent at our meeting with the financial advisor at 10.

But breakfast was over by 8 am so he wanted to hang out at the church – just on a whim. It was open (are churches always open anymore? Don’t know) so he went in and fell asleep in the Fireside Room while I spent some time in the dark sanctuary playing with the piano. It was a good choice, and I’m keeping it in mind for the future.

Of course, all this time he was worried about hearing from the electrician. Even though I had called twice, the man was not calling back, not even to say he was too busy to check out our “grounding problem”. Dennis had figured out a new angle during the night and at breakfast he made me write down the specific points he wanted the electrician to check on. So the electrical craziness has not gone away by any means, BUT one of his phone contacts who he greatly admires had told him he was thinking wrongly and he started believing it. The result was that he didn’t have to be on any grounding pads all day, he quit wearing the moccasins with the lining cut out, and he actually thinks it is good now to be insulated from the ground. Go figure…

Tonight he was able to talk coherently, see almost normally, check his own email on his phone, get himself out of chairs and the sofa without difficulty, and was CHEERFUL. Wow. He ate supper and has decided to sleep on the futon in the sunroom, which is fine. Maybe I’ll get some sleep tonight.

Camping Out

/ Shirleyjdietz / Leave a comment

Crazy Day

6-17-2019

I was in such a cooperative mood today – determined to help this guy feel comfortable somewhere other than in the house. I told him we were going to set up camp out in the field. How could that not work?

⁃ Tent has a polyethylene floor so it’s not grounded

⁃ Truck has rubber wheels so it’s not grounded

⁃ Nothing to plug the grounding pad into

⁃ Must find Ohm meter so we can tell if we’re conducting anything

⁃ Must have multiple things to sit on besides the truck, for comfort

⁃ Must have peanut butter, cheese and magnesium water

⁃ Must be in the shade in case it’s hot

⁃ Must have jacket

⁃ Must have head pillow

On and on. We spent quite a while fixing alligator clamps from the Ohm meter onto a grounding spike, which was really a huge wood file I had scrounged from the workbench. This contraption was then attached to the truck to ground it. He figured he could ground himself by holding on to another wire attached to the same spike. When we got out to the field and set up the chair, the snacks, and the ground wires and the grounding pad on the chair, I was all set for a good time tending the garden while he communed with nature and his phone.

Less than an hour later I was getting phone calls. The grounding wasn’t working and he knew why. And then the call that he and the walker had made it back to the house and couldn’t get in – back door was locked (um… try the front door, it’s not.) Next, where is the remote that changes the channels on the tv? Next, bathroom problems. I gave up and went to the house. Later I walked back to the truck, loaded everything up and drove it all back. So much for camping out. Not doing that again.

Grounding the truck, or maybe not.