dementia

The New Chair

/ Shirleyjdietz / 2 Comments

Dennis has been getting more receptive to equipment that makes movement easier for him. He always used to say no to those things, thinking that he should continue to do everything the hard way, under his own steam, because it was “exercise”. But now his slowness and instability make it hard for me to take him places, even close places like Mom’s house, or to my brother’s which is easy walking distance (for anyone but Dennis).

So the first concession was to start using a walker. We had a low end model but he found it hard to go over uneven sidewalks because the walker had only two wheels and the other contact with the ground was just aluminum legs which often got hung up. I guess that’s why people buy tennis balls and stick them on the legs.

Then he discovered Mom’s fancy convertible wheelchair, which can be used as a walker and also has a seat. It is extra security when he gets tired and needs to rest. He hardly ever goes far enough to need to rest, but that is beside the point. The seat is there and ready.

Yesterday, he broke down and said he needed a lift chair. We had been noticing the increased struggle getting out of recliners. He loves to spend most of his time in that type of chair but it would take him a half dozen attempts to raise out of one. He has very little strength in his thighs. At the same time he had been having frequent urges to get to the bathroom which was not good when he was stuck in his chair. He had tried Mom’s lift chair last week and found it quite impressive. He wanted one.

There two furniture stores in Hayward – the expensive one and the less expensive but still horrifying one. In the lesser store I found two chairs, both of which were just a bit under $2000. They also looked huge and I am not a fan of huge, heavy furniture anymore. I didn’t even bother with the expensive store. Instead I went to Facebook marketplace and inquired about three that were within reasonable driving distance. This morning I borrowed my brother’s truck, picked up a strong helper and drove an hour away to Ashland and fetched home a chair. The upholstery is in great shape, and it only cost a quarter of what a new one would cost. I could be happier about the electronics which are a bit confusing, but it does a nice powered recline and it does eject him satisfactorily. There was no place to plug it in for a test at the storage facility where we picked it up.

I don’t know, it seems really big to me…

I think he’s happy tonight. He likes it (thankfully). It’s a comfortable chair, although I’ve only kind of sat in it once. It’s quite a piece of furniture, with a “presence” all its own. I’m afraid it might even have a personality. It might need a name. At the very least it calls for a living room re-arrange, since it looks really weird in its heightened position, waiting for its occupant. I’m hoping to dream something up while I sleep tonight. I’ll find a good place for it. Welcome Mr. Chair.

Can You Get This Off My Phone?

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Today the husband came to me in my “girl cave” wanting to know if I could fix something on his phone. He had inadvertently taken a video of his knee and posted it on Facebook. A fairly complicated accident, if you ask me. There were already two comments on it from friends, which was nice, but he hadn’t seen them yet. Instead he was frustrated over an email ad offering to take down an unwanted photo from an unnamed site.

Is there some internet business just scrolling Facebook, finding weird videos, and marketing themselves as being able to solve some horrible problem? I don’t know. I just edited the Facebook post. I could have deleted it but the friend messages were nice and I thought he should keep them. But the episode made me wonder if he could find trouble with all he does on his phone…

Hey, why not? It’s a nice knee…

It is his dearest occupation – to watch/listen to podcasts and videos on his phone. It’s close, in his hand, and the screen is magnified to a size he can read. It talks to him and gives him things to think about. I don’t know what could replace it in his limited arsenal of things to do.

His inability to see things for what they are, such as advertisements, is constantly coming up in our conversations. He is very swayed by clever marketing and feels like he has “discovered” things by his “research”.

Lately he has been “researching” a problem my Mom has been having and is certain he can help her with it. Last night, when I had disappeared on a bike ride, he went over to Mom’s, uninvited, and was sitting talking with her when I stopped in. When I left to get a shower and go to bed, he didn’t want to come. He sat and talked until nearly 10 pm. I wasn’t sure if I should make him come with me, but I figured Mom could handle it if she wanted him to leave. She said he told a lot of old stories (no surprise there). Her comment was, “he doesn’t get bored when he’s doing the talking”. Not always the case with those who are listening. He didn’t remember to tell her about his research and wanted to try again today.

It’s sad. Sometimes it’s frustrating. But he is still interested in life. He’s kind, cooperative, funny, and really not that much more work than I’m used to anyway. And I have so many places to find joy that it amazes me. God is good, even (especially) in this phase of our lives. We are okay, at least until I can no longer figure out technology either…

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

/ Shirleyjdietz / 2 Comments

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.

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.

Finding Hope

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9-8-2019

I am excited to learn that what is happening in LBD is really the body’s attempt to defend itself. God has designed us marvelously and if we treat our bodies right, they will heal themselves. Sometimes, that is the miracle.

Originally, I started this blog site with the word “hope” in the title because I believed that God would help us through whatever was ahead with Lewy Body Dementia, or maybe even heal Dennis of it completely. I thought a miraculous healing was the only way that would happen. The medical specialists we encountered gave no other hope from their side of things. I was even a little shocked that having been given the diagnosis, and a prescription for a drug that could maybe help cognitive function for “a little while”, we were dismissed with no recommendation for follow up of any kind.

Dennis did some research shortly after that which started him on a different track. He believed, or wanted desperately to believe, that he was going to turn this disease around. Several things made him think that, one of which was a report that claimed cognitive decline in Alzheimer’s Dementia had been reversed in a small study. The patients involved responded to the therapy and regained what they had lost, went back to work and normal functioning.

Since then, the researcher, a UCLA based physician, has written a book detailing the therapy. He also shares the story of how the research progressed to develop a new understanding of cognitive decline in neurodegenerative diseases. I love this quote from the book:

“Now, often the most interesting and revealing experiments – the moments when an invisible chemical or an inconsequential cell can move the Earth – are not the ones that succeed as expected, nor are they the ones that fail outright: they are the ones that yield results that are just the opposite of what you expected.”

I can feel his excitement from the beginning of his search right up to the present. Hundreds of people have benefitted from this protocol which has been named ReCode and word is spreading quickly, thanks more to the web than anything else. Dr. Dale Bredesen and those who have gotten their life back after Alzheimer’s have a passion for conquering this devastating disease. He writes “…for if necessity is indeed the mother of invention, then perhaps passion is its father.”

I have finished most of the book, finally. We have had it for some time but there have been so many things to cope with, so many surprises, so many caretaking problems to solve, that I have been overwhelmed. Fortunately, we have been learning about and doing some of the things in the protocol. Even though I was skeptical of some of Dennis’s practices of magnesium supplementation, of autophagy, and his extremes of fasting and avoiding electricity, we have been doing a lot of it. Maybe that has been responsible for staving off further decline.

I am hopeful. Everyone should know about this because Alzheimer’s, Parkinson’s, LBD and other dementias are becoming epidemic and they can be prevented. As Bredesen and his researchers agree, no one should die like this and they don’t have to. Read the book. Find hope.

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…

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.