And Then Again, Maybe Not…

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I don’t think he had a stroke (see previous post). I think it was one of the expected fluctuations of LBD. For a day he had difficulty thinking fast enough to speak, and getting words out, but now he apparently has recovered. Last night he held a phone conversation without trouble and today he enjoyed a long talk with a new friend. I could see no effect from his temporary lapses.

I also asked him if he felt recovered, and he thinks yes, he has. He’s physically slow but mentally back to par (for him).

Just like his blood pressure has dramatic spikes, followed by strange lows, the other parts of his nervous system experience blips in their function. Sometimes it’s his eyesight, sometimes bowel function, often it’s coordinating his movements. I’ve heard it described as a roller coaster of symptoms and it does seem that way. We just don’t know what to expect next.

I think it does help to pray and have a positive attitude. I’m grateful it does not seem to be the “fall from the cliff” that I thought it might be.

A Bad Day and a Disturbing Change

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May 29, 2021

A strange occurrence this week. The husband had a bad day which was noticed first when we went a few doors over to my brother’s house for a meal. He had a very hard time seeing things, like steps to go up or down, and food on his plate. He was very quiet at the meal but still conversed. Being very tired afterwards, he went for a nap.

When he woke up he was confused and couldn’t verbalize well. Words would come out of his mouth that he had no idea he had spoken, words that didn’t mean what he intended to say. He didn’t know why. He looked at me strangely all evening and acknowledged that something was very different and very wrong. He was slower in his movements but was able to get around okay, and seemed weak but symmetrical in his muscle tone.

His blood pressure was very high, something that had become common for him. His usual methods of bringing it down were not as effective, but as the evening wore on it did come down. LBD is known for erratic spikes in blood pressure in spite of medication.

I wondered if he had experienced a small stroke.

The next day he was not as “scary” in his reactions but still very bothered by his inability to think and verbalize. He concludes that some damage has been done and it may take a while for him to recover.

Even before this happened, his willingness to accept a wheelchair signaled a change. He has needed one the last couple of times we were seen by a doctor. He can’t stand in lines to wait at the clinic and has felt generally much weaker. He has stopped doing exercise except on rare occasions. He can’t walk very far and wants to have the walker in the car whenever we go somewhere. His overall appearance is of a very disabled man.

There are ups and downs, relapses and recoveries with LBD, but I would have to say that he has clearly progressed in the disease. He has not been making phone calls since having the speech trouble and that is sad because it was a lifeline for him. I’m hoping that he will improve in that area.

Good Advice, God’s Prompting

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I frequently read posts in a caregivers group for Lewy Body Dementia. Tonight I was glad for the advice I commonly see there concerning changes in behavior. The advice is to always suspect urinary tract infection.

The last two or three days have been bad ones for Dennis. He has been weaker, sleeping more, hard to motivate, less interactive, not eating as well, not thinking as well. He needed a shower (smelled bad) and although he didn’t object to the idea, he would never get around to doing it. He would take a nap instead. He began having urinary incontinence problems and wanted to know where his Depends were. He would wake up with an urgent need for the bathroom, but would have so much difficulty getting there that he would have an accident. Finally he told me he had a burning sensation when he started to urinate, and the light in my brain came on. UTI.

Why do these things always happen on the weekend? Fortunately we do have an urgent care clinic at our hospital and I decided to take him there right away. He had to be talked into going – “I’ve had these kinds of problems for months” he said. But I told him we needed to find out and that it would be fairly simple to do, and that it would not be good to wait for an appointment during the week.

We were in an exam room within a few minutes after checking in. Vital signs showed normal blood pressure and temperature, so no fever. A urine sample was taken and an ultrasound of the bladder to see if there was more than usual residual. The results showed a lot of white cells (infection) and some blood in the urine as well. Before we went home he was given an injection of antibiotic, a prescription for 10 days of oral antibiotic and orders to check back in a couple of days.

I am so glad we are on to this! It could explain all the recent changes that have worried me. Hopefully the infection clears up and we won’t have to deal with worse complications like kidney stones or kidney infection.

I thank God for his promptings, for bringing things to mind, and for the appropriate sense of urgency to get care quickly. We ask for his help daily and he is good to us.

A New Season, Possibly

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For the last two and a half years since diagnosis, changes have been gradual. Most of them have been physical and of a parkinsonian nature. The shuffling, tremor that started in the right hand and now affects both, sometimes a tremor in the legs, incredible slowness of movement, a blank facial expression – all those symptoms have been the most noticed. Even with these things, Dennis has been mostly independent. He moves himself from one place to the other, gets to the bathroom without help, puts himself to bed, gets a snack when he wants one, and makes decisions to go to church or the chiropractor or to visit Mom or my brother.

Cognitively, he is able to think and remember fairly well. He brightens up when talking with friends on the phone and carries on a meaningful conversation, although slowly. Sometimes he snaps into his scientific mind and amazes people. He has become focused on a few subjects, which he follows by listening to YouTube podcasts on his phone. He has a list of prophets that provide daily updates and he often listens to the same one several times.

He doesn’t spend as much time researching his own disease, although he runs across something every now and then. He is more centered on the supernatural, hoping for a better chance with God than he has noticed with medicine. The most recent therapy which he is still receiving is applied kinesiology which includes chiropractic, muscle testing, light therapy, nerve stimulation, cranial-sacral therapy, and tapping, all from the same practitioner who also prays with him.

He was alone at home for one week in April while I took Mom to Florida for a memorial and family visit. He had my brother and Lurae, a neighbor, looking in on him and providing meals. He seemed to be fine with that. My brother remarked that he perhaps did things better than he does when he’s being waited on all the time.

But I think I notice, following that week, a tendency to sleep more during the day, and not as well at night. It looks a lot like depression, and why would it not? There is so little he feels he can do except listen to his phone. That gets tiring so he goes and takes a nap.

Last night he could not tell what the food on his plate was. He was trying to cut it up as if it was chicken, but to his surprise it was salmon. He had a lot of trouble getting food on his fork and reverted to using his fingers to eat the fish and green beans, which is okay with me, but messy. He took a spoonful of cranberry relish and thought he was putting it on his plate but no, he was purposely putting it on a napkin that he thought was his plate. I think the whole mealtime experience devastated him. When I asked if he was having more trouble with his eyes he said yes, and that he thought it was probably his brain rather than his macular degeneration getting worse. He was very resigned and quiet about it.

My question is, are we heading into a period of more noticeable changes that are taking away vital functions? I hope he will still be able to travel to our daughter’s wedding in July. He was so looking forward to that.

A Day in January

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Today we went to a chiropractor who has been doing applied kinesiology for Dennis. His functional medicine doctor sent him for this kind of therapy hoping to get some information that might have been missed before. He hasn’t been able to get rid of his tremor (both hands now) or regain strength with all of the treatments he’s been on, so she’s looking for something else.

Dennis likes the chiropractor. In one session he tested weak in an area and the practitioner asked if he had unresolved issues of shame in his childhood. It progressed into a surprising memory that surfaced and an emotional discussion that we all thought was beneficial. Today the doctor told me he felt there was still something more but it would have to wait until he could schedule a longer session with Dennis.

This search for reversal of his dementia is really calling on every bit of patience I can muster. There are so many things I have to do for Dennis to get him ready to go anywhere. He needs help with almost all his hygiene tasks, starting with being reminded that he needs to do them. His fingernails would be two inches long if I didn’t tell him they needed to be clipped – except for the right hand. He chews them off on that side.

Everything he is able to do himself is done at turtle sloth speed. His body resists his mind telling it what to do. For instance, the chiropractor has a very narrow adjusting table and it’s not the kind that starts with the patient standing up. Dennis has to lie down on it, and he is clueless how to do it. Lying on his back, with help, is do-able, but turning over onto his stomach without falling off the table is almost impossible. It took more than five minutes just to figure out a strategy let alone execute it.

All of these several times a day, plus all the pill supplements and his prescription meds for hypertension. It’s a lot to keep track of.

Light therapy, sound frequency therapy, essential oil therapy, as well as all the regular chiropractic adjusting gets done every time we go there. We also have potions from a company called CellCore for mitochondrial support and ATP function, Hydroxygen for energy and detox support, a mineral supplement and a parasitical. Evidently there are parasites present somewhere. But I really haven’t seen any positive changes over the last month. I know these things take time, but even the chiropractor thought there would be some improvement by now.

Dennis thought there would be improvement by now. I know he is getting impatient and wants to do something more, but he is not as good at researching any more. He has trouble reading anything, his hearing is problematic (as are the hearing aides), and he falls asleep easily. I don’t know if I should be taking up the search. I have my doubts that he is capable of carrying out the kind of program that would bring reversal, if it is even possible. I’m just having trouble taking care of both of us.

Going Cautiously into Summer

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I say cautiously because last summer is all too vivid in my memory. The plague of anxiety, the delusions, constant watchfulness and attempts to reassure, living in weird circumstances trying to avoid electricity and evil spirits. Oh my.

And then it went away, rather suddenly. It was as if he just decided he was wrong and didn’t feel any of the harmful sensations he had been feeling.

We have had a fall, winter, and spring of stable cognition and emotion. I am thankful. I cannot know for sure why it’s been easier. I guess I don’t need to know. We are continuing to do what we have been doing, in case some of that is helping. From time to time Dennis thinks of adding or subtracting a supplement, and if I don’t think it makes a lot of difference I don’t argue about it, although I do get tired of the chore of filling the daily pill bottles.

Dennis elects to stay home more and more. He doesn’t always go to visit the relatives when I go, or out to eat either. With COVID 19 restrictions he has gotten used to more inactivity – no church, no trips to library or grocery store. TV is his entertainment and he watches it so much he has adopted TV people into his family. I often find him with the TV on while he’s also listening to something on his phone. But he is interested in what he watches and refers to a lot of it as his “research” on various topics.

He’s done a lot of checking up on old friends from our days of teaching at Ambassador College. He calls and follows the trail from one person to the next, finding out how they are. He sometimes picks up his horn and plays something. He tries to take one or two short walks every day, or rides the stationary bike. He knows exercise is important but he often is more comfortable sitting still.

His biggest problems are the constant tremor in both hands now, overall weakness and instability, regulation of his bowel and bladder, some hypertensive spells, diminished sight and hearing, and the inability for planning or complex thinking. He does some of his own hygiene care, but I do have to shave him and remind him to shower and change clothes. He can get snacks from the fridg, but his meals are up to me most of the time. He’s okay by himself at home and I can leave him alone while I go to the garden or to Mom’s for several hours at a time. All in all, life is quite manageable.

Things I notice:

It takes him a long time to come to his chair at the table, pull it out, position himself in front of it, and put his body down. Long time = almost forever.

His skin problems are still severe. He is always scratching skin flakes from his beard, neck, head. His eyeglasses are always so dirty I don’t know how he sees through them. His shirts are always covered with skin flakes and unsightly.

The shuffling is his normal walk now. He’s started a forward lean that sometimes propels him forward faster than he wants to go. He looks old and frail when he walks, his hands shaking but not moving normally with his leg action.

His voice is hard to hear. He talks slowly, so slowly, and his words don’t have edges that make them easy to distinguish. I’m always saying “what?”.

He takes a morning nap and an afternoon nap most days.

So from day to day, not much has changed for the last few months – which is why it’s hard to think what to write. We are mostly praying that he will be able to go to Seattle for a wedding in August (youngest daughter) and another wedding in North Carolina sometime after that (oldest daughter). Travel is not something he looks forward to anymore so the planning will be challenging.

Our “Special” Station

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I’m confused. I don’t know whose brain is having the most trouble any more – mine or his. Is he getting better? Sometimes I think so but it’s never clear enough for me to start treating him like he’s becoming more capable. And I think that’s making him angry, in a very suppressed, passive aggressive way. It’s not very much fun.

Our special station is TBN, Trinity Broadcasting Network. There are some very good shows on it and I love seeing what is going on in the world with missions and Christian initiative. But it’s on almost all our waking hours and probably 80% of it is preaching, one speaker after another. You know that cadence of voice that is associated with preaching – yeah, that’s it. Almost all of them talk that way, and I say “talk” in a general way because a lot of the time it’s yelling. There’s always some man on a stage yelling at a huge auditorium full of people. I don’t feel like I’m getting more of God via TBN. I feel like I’m getting more of preachers.

Another thing that they all do is ask for money to sustain their ministry. Of course, they have bills, and they are doing work for God. The husband is very soft-hearted and convicted by all the yelling. He wants to give them money, maybe not all of them, but often. He’s been watching them for months, knows their jokes, their speaking habits, what their wives look like and how many children they have. They are his friends so when they ask, he wants to respond.

Just today he told me he really wanted to get a certain book, which comes with a $40 donation. Another preacher talks about how he has a habit of carrying hundred dollar bills around and handing them out when the Lord tells him to. The husband would love to be that man. He doesn’t carry money in his wallet any more and I wonder if he’s subconsciously afraid he might give it all away if he did.

Not too long ago, in his musing about how wonderful it would be when he got well, he mentioned that it would be so much fun to go to the store and buy something himself. I reminded him he had a credit card in his wallet and could do that now if he wanted to. He seemed surprised.

He kind of thinks he will be well this summer and should be able to ride his bike. It must be hard to have such high expectations and not be able to see more progress toward reaching them. Personally, I think he expects too much since he stopped riding bike even before he was diagnosed with Lewy Body. And how many couch potato 74 year old men are riding bikes even if they are well? Not many.

This afternoon he sternly told me that I needed to get Mom to the doctor about pain that she’s having in her legs. He is alarmed and knows what I should be telling her to do – the magnesium thing, still. Magnesium is curing cancer and Mom could have it in her bones. He needs to get the ball rolling by telling me to get on it. Never mind that Mom and I talk over her condition and options pretty much every morning. I’ve been helping her with all her medical decisions and know what she wants. I’ve also been doing the same for my aunt, oh and for him, the husband, as well. But I am too slow now and need to be told what to do for her.

I was irritated and didn’t give him the response he wanted. He is irritated and grouchy. I know he feels like I don’t take him seriously. It’s true, I don’t. But I kind of have to act like I do and then explain to him why I’m not hopping immediately to do his bidding. It’s just confusing. This guy is so much like my husband, but he doesn’t do any of the things a husband does.

And since I can’t take the steady dose of Godly teaching from our “special station” and retreat to my room instead, I guess that makes me more toward the pagan end of the spectrum than he is. That feels a bit uncomfortable, that and a lot of other things…

What Next?

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February 24, 2020

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

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

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

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

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

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

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

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

This morning

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At the breakfast table he said, “I just can’t wait until I can go out and mow the lawn, get my driver’s license back, go shopping and use my credit card…” I did not say anything until later when I reminded him that he could use his credit card any time we were in the store. “I know” he said.

Time Goes On

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

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

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

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

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

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

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

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

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