Life with LBD

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?

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.

January 2020 Update

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Who ever thought we would live this long?

Dennis had his 74th birthday a little over a week ago. Both of our daughters made the trip to be with him. They are always mindful now that each trip could be the last time for them to see their dad. Even though that is always the case with all of us, we take it more seriously when there is a diagnosis, a known cause for demise.

I think we all enjoyed the time together. I asked the girls what changes they saw in Dennis. I think they both noticed a weight loss, but not much else. He was even tempered, thinking fairly well, and able to be present in all the activities we did inside. None of us stayed up late or partied hard. We tried to get outside as much as we could, and that’s where Dennis declined, staying in to watch tv or take a nap. I did feel like we left him alone a number of times but he didn’t say that he minded.

His birthday gifts included a boom box which he now uses to play his audio cds, a masculine neck chain with a cross which he had expressed interest in having, and a 23andMe kit to get his DNA tested. Oh, and steak knives to help cut all that tough meat that I serve him… He was pleased with it all. Instead of cake he wanted pie, and he got it.

He has immersed himself in the viewpoints of his favorite tv speakers. That did get him into trouble once when conversing with his youngest, who had to point out to him that there might be differing ways of looking at things. I think this little tense moment might have been even worse if it had happened a couple years ago. His condition has actually mellowed him somewhat – he is less sure of himself, and maybe more humble. He did not wish to antagonize and got past it quite well, I thought.

There are always uncertain moments when he wants to speak in public, which he does not shy away from. I never know what he is going to say, although it is usually something I have already heard him saying at home. He is thinking all the time, trying to analyze his dreams and the different events that fill his days. He is always remarking about how bizarre things seem to him. I am always remarking about how awkward things seem to me.

By the grace of God, Dennis is still physically mobile although very cautious and slow. He hasn’t lost control of any bodily functions either. He is still bothered with the hand tremor and his voice is often weak and wispy, but everything else is pretty much like a normal old man (a very old man).

Activities which he is able to enjoy include exercising at the hospital gym, which has also provided some new interesting friends and some good lunches at the bistro. I read to him often and he is able to stay wakeful and interested for long periods of time. And just today I showed him the karaoke app on my iPad and had him sing a number of songs. I think that might help strengthen his voice, and he did pretty well at it.

What more can I say? I think we are doing well.

Dressed in his usual outfit, at my nephew’s birthday which was a few days after his. He looks a little bored at the moment but he had a good time.

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.