Traveling with Lewy


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…


Higher Ground Please


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.

Camping Out

Crazy Day


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.

The First Days of June

The hard thing happens every time the husband comes up with new evidence of his “theory of the day”. He looks at me dramatically with a horrified expression on his face and explains the newest evidence of the connection between electricity and the way he is feeling. Today his thoughts have been directed to the ants who have nests in the ground around our house, small red ants that are common everywhere. He tells me that it is a well known fact that they are drawn to electrical current, citing several experiences with ant nests in electrical boxes and outlets. He has gone around the house locating any pile of sand that the ants have deposited and lining it up with an electrical outlet inside or outside the house. When asked what that means for us, what should we do about it, he says that we should get the house properly grounded. I remind him that it is already grounded to code and more (yesterday’s episode) and he then remarks about the age of the water heater, as if that cancels out the electrical grounding.
Last week he insisted on buying a grounding mat for the bed. I spent several hours researching the ones he was looking at and finally did the ordering for him. I decided it would be worth the expense if it would buy him some peace of mind. I even bought a smaller grounding mat for his feet when sitting in his chair. The first night, the effect was too much, although I’m not sure how one gets too grounded. We tried putting a sheet between him and the mat. When that didn’t feel right either he decided two sheets would be better. When that didn’t feel right he presumed the sheets weren’t effective because they were polyester. When he found out they were both 100% cotton he had no answer, but he still couldn’t sleep on the mat. Please send it back.