Lewy Body Dementia

Why This Blog

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3-29-2019

I can’t remember if I wrote this. I decided to start a second blog so I could write freely about my perspective on life with LBD. I did the work of getting it set up, transferred a bunch of previous posts over to it and am now waiting, for something…, I don’t know what.

Initially I called it The Demented Disciple’s Wife, because he was okay with calling himself that. Tonight I changed it to Hope in the Face of Dementia. I think that sounds more hopeful to have Hope in the title. There’s always hope, right? Not everyone would like the other title – I know I didn’t when I heard the husband wanted to call himself the demented disciple.  It will also be less likely that he will google it, start reading and recognize it’s about him.

But I will tell him at some point. I don’t intend to say anything he couldn’t hear, or anything terribly disrespectful, but I think it’s best not to put an emotional burden on him by sharing all my angst. I want this blog to be helpful to others, supportive to caretakers and informative to any who want to know about LBD. This may be the only way for him to share any of his thoughts or research with the world, because I just don’t see him doing that himself. He is all talk and no action at this point. 

Today we got our first shipment of Dr. Carolyn Dean’s magnesium and mineral complex supplements. The husband has been very excited about starting on it, this better form of Magnesium that is absorbed immediately before leaving the stomach. It should not cause bowel irritation or diarrhea so more of it can be taken. He is still sure he’s very deficient and needs the maximum amount. He is sure that he’s successfully untangling the amyloid protein bodies in his brain and restoring himself to normal.

He has been off his prescription meds for a little more than a week now.  He has some high numbers on his blood pressure but he is convinced it’s reaction to being upset at the time he measures. He takes it again later and it will be a little lower usually. He thinks his skin condition has improved, his other symptoms associated with his facial nerve have improved (eyesight and smell) and he feels he is moving more steadily. When we walk he comments on how he can look around now, not at his feet constantly. And of course, he is not constipated. He has to tell that, even to strangers he has just met. It’s weird. He doesn’t just tell them he’s not constipated, no, it has to be the before and after story, with all kinds of details. It’s weird.

Even though he sees improvement in his condition, there are still the fluctuations to deal with. Things can change on an hourly basis so it is hard to say the improvements are lasting. One thing I can say is that he doesn’t seem to be getting worse. That is a hopeful thing for which I am thankful.

The Journey Begins

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Thanks for joining me!

This journey began years ago, way before I realized what it was.

Why Me? Why Us?

I’ve heard it said that we are what we think.

I’ve heard it said that we are what we eat.

I’ve heard it said that it’s all up to genetics.

I think it’s a combination of all those things, some under our control and others not. I believe that God works with us in all of these things to create a life of a certain sort, unique to each person, and valuable to him.

Writing, My Therapy

I’m thinking about all of this because, over the last half year, I find that I’m living life with an awesome guy who now has a diagnosis of Lewy Body Dementia, LBD.  Finding this out about himself was life changing for him. It has been life changing for me. It’s our journey together, but I need a place to share my thoughts, experiences and observations without affecting him emotionally. This is it.

I blog elsewhere, at shirleyjdietz.com, but the husband, as I often refer to him, reads that. I put things there that I want him to know. He pays attention to things he reads, almost to the point of having a photographic memory.  I will probably write things here that might upset him, not in a disrespectful way but perhaps things that would be emotionally burdensome. He is a worrier.

To Encourage and Connect

In addition to working out my own thoughts, I want to encourage and connect with others who are having to get personal with the issue of dementia – Alzheimer’s, LBD or any others. It’s not an easy journey and it might help us to share our stories.

Good company in a journey makes the way seem shorter. — Izaak Walton

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He’s a Scientist

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3-11-2019

Shortly after I came down with this cold that’s making me miserable, the husband started something very similar, but of course, he doesn’t have a cold. He is going through a phase of autophagy, clearing out the trash and hopefully getting rid of some Lewy bodies. He thinks it’s not a cold because his nasal drainage is clear. I’m skeptical, as always. Looks like a cold to me. His magnesium therapy is the cure all for everything, if you believe all that he says.

Last night I went back through my emails and wrote down all the papers and research articles he’s sent me over the last five or six weeks – 27 in all, none of which have I read. I intend to read some but I guess I’m reacting somewhat negatively to his obsessive behavior and preoccupation with his sickness. I get overwhelmed. Every conversation with him ends up connected to his health, his therapies, his symptoms. He is emphatic about supposed changes that he experiences, many of which are questionable. It goes beyond his own experience when he decides that everyone will benefit from his therapies by doing the same thing he is doing.

I am toying with the idea of going to Seattle for a short visit, not that I want to travel, but because I want Esther (daughter) to know I care about her. Birthday week is coming up and it’s always hard to spend it alone with no fanfare. I’m not sure I should leave Mom to deal with the husband by herself. She is sensitive to his plight and feels bad that she doesn’t want to listen to all the things he wants to talk about. I’m not sure how to communicate to him how he would have to change in order that she feel comfortable. I tried but now I think he is feeling awkward, that maybe Mom doesn’t like him very much. I wish there were someone he could go live with for a few days while I’m gone.

He needs help all the time. Not for complicated things but for small stuff, like putting spaghetti in a dish and heating it up in the microwave. He gets “fog” and can’t think what to do if the spaghetti noodles are cold and stuck together. It frustrates him.

I was asking him to cut his fingernails recently. When I see them so long that they look like girl fingernails it really repels me, so I get the clippers out, ask him if he will do it, and then wait. I asked him if there was anything about the job that made it hard for him to want to do it regularly. He seemed genuinely happy to tell me that it was hard for him to see what he was doing, and hard for him to press the clippers hard enough to get the job done. I clipped them for him.  I also shaved him last week since he was having a hard time getting all the whiskers and would leave them in weird places, quite visible. Some of these things wouldn’t be so hard if he would keep up with them on a regular basis, but he doesn’t have a habit of doing that.

Yesterday he was very emotional. He wanted me to know that he felt I was in a dangerous position if I were to decide to treat him like Job’s wife had treated Job. I wasn’t too thrilled to hear that comparison. He did go on to explain that he was getting a lot more sympathy for what the woman must have been experiencing and that he could see the temptation for her to lose patience.  The wrap up of this discussion had him sitting on the end of the bed, weeping, and telling me that he felt he had changed and wanted to make amends for the times that he had not been there for his family in the past. He wanted me to know and believe that he had changed. And I do believe his thinking has changed. It’s a start, but behavior is largely determined by habit.

If Dr. Carolyn Dean is correct about the magnesium deficiency that all of us are experiencing, here is the list of maladies I hope to see changing as I ingest more of it.

  • The ringing in my ears
  • The pain in my thumb joint
  • The sinus headaches
  • The funny numbness in my feet
  • The white patches on my forearms
  • The more common hypertensive readings on my BP
  • A faster recovery from this cold
  • Resolution of knee and hip problems, before the hike, please
  • Better sleep

I realize it’s all connected and very complex, but why not put it all down and watch to see what happens? Meanwhile I will do what there is to do – exercise, try to eat well, keep good hours, keep happy and avoid stress. Shoot for the moon.

We Go to a Summit

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3-5-2019

We have spent a couple of days driving to and attending a conference, a summit on Lewy Body Dementia put on by Mayo Clinic. They put on a very efficient and informative event and I’m glad we were able to go. Dennis met and talked with quite a few people who are struggling with LBD, like he is, and I know it helped him to not feel alone. He viewed himself as being able to encourage others and give them hope. I also met caretakers going through what I’m going through and much worse. It was also interesting to learn more about a complex and difficult condition. The ONLY time nutrition was referenced was when they announced breakfast, lunch and snacks (which, by the way, were very well done and worth the $30 per person registration). I’m pretty sure Dennis was the only person who said the word magnesium, and thankfully he didn’t say it very often.

The virus I’ve been fighting is gradually playing itself out. I kind of wonder why it does that instead of living on in the most virulent stage. Is it that my immune system is developing weapons against it, or that it has a life cycle that determines its course? I am still coughing and uncomfortable but I had no headache yesterday and was able to sit through the day without leaving the conference or making those around me feel infected.

Travel is interesting in that I see how much care Dennis needs in unfamiliar environments. There is nothing about our travel that he plans or gives thought to.  He tries at the last minute to be the “man in charge” by asking how much gas is in the vehicle, or if I have all the cords and device chargers packed. I appreciate our handicapped tag at restaurants and stores, but sometimes it is even easier (or required) that I drop him off at the door of a place and then go park somewhere away, and walk back carrying whatever stuff we have with us. It is often easier to provide him with food or drink than witness his confusion about how to get it himself.  For my own sake, I take more time to look him over, making sure his clothes don’t have spots on them and he doesn’t have food on his face. He doesn’t know how he looks in his stocking cap and puts it on in all sorts of weird ways.  It is partly for my own benefit that I try to get him to be clean shaven and appropriately dressed, but also to keep others from getting negative first impressions.  It’s not all about LBD I don’t think. He’s been unaware in varying degrees for years and years. Or maybe it has been LBD and he’s just had it longer than we know.

He takes all this “herding around” in good humor and jokes about it. He doesn’t fight my planning and decisions (because I don’t tell him ahead of time?) and as long as I let him think about where he wants to eat, he’s good with things and enjoys himself. His biggest challenge is finding restrooms when he needs them. We are constantly dealing with changing conditions, whether it be constipation, diarrhea, or urinary frequency so I keep my brain working on the location of any restroom we pass by.

One concept that was presented at the conference that I find especially intriguing was on the subject of hallucinations. The question was presented to a speaker about how to waken someone from a hallucination, which moved him to talk about what a hallucination was. He felt there was a possible connection between them and the REM sleep disorder that most LBD patients have.  Something about the LBD brain blocks the normal paralysis that people experience when they sleep. Normal people are kept, for the most part, from acting out their dreams. LBD people have physical response to their dream world. What if they also are missing the block that keeps the dream world out of their real physical world? These hallucinations that are realer than real to them, could be their dream life entering into their consciousness. We all know how real some dreams seem to us, and that is why their visions are so troubling to them. The husband does not have that problem, yet, thankfully.

This morning back at home, I am writing with frequent interruptions. As I tried to watch the sky and have my morning coffee at 6:30, the husband also got up and came out wanting to talk about ordinary things. “What is the temperature?” “The sun is in my eyes – can you lower the shade?” “I only had to get up once last night.” “I’ve learned to control my drooling by lightly pressing on C-3.” “Do we have earbuds so I can talk to my brother without using speaker phone?”

Mom has explained to me that she isn’t trying to be mean in going to her room and shutting the door all the time. She just can’t take the constant engagement on the subjects of the husband’s choice. It even bothers her to hear his telephone calls for hours.  But she says she is ok living in her bedroom, and I notice she now has a “dining table” with salt, pepper and her own small coffee maker in there.  I miss her and the times we would spend talking in the morning. It’s often the choice now between meeting my own needs for fellowship – leaving the husband rather obviously segregated, or staying out with him in view of his need for some kind of socialization. Why is he getting up so early?  Was it depression that kept him sleeping until 10 every morning? And now he’s all excited and hopeful? We can’t figure it out.

We’ll figure out one day at a time. Things are always changing.

A Wakeful Night

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2-20-2019

Yesterday, the day of the husband’s doctor appointment, I wanted to encourage him not to be weird, not to ask the doctor to read his reams of research printouts, not to tell stories about Jimmy and Rosalyn (the Carters), not to talk about his wonderful brother who takes him seriously, and the list goes on … But when I sat down hoping to have this conversation with him he was all about his difficult night in which he lay awake from 10 pm to 3 am, hearing from God – that it was his time to write a book and share the secrets that have been revealed to him, mostly about magnesium. The title is already decided: “Wake Up and Smell the Peanut Butter”.

We did have a good talk, and we prayed about the appointment and everything else that we pray about.  I really wish he would write about his experience. That is not a crazy idea and would be interesting, but he has challenges that make it difficult. I ended up suggesting that he dictate his writing and I offered to edit it for him. He had wanted to ask that but was dramatically grateful that I offered before he had to ask. He also asked that I co -write his book, telling the story from my point of view, like Jimmy and Rosalyn did. I think he said that was God’s idea too.  (Another thing I wonder at – he emailed Linda Ronstadt to tell her the problem with her voice going away was because of magnesium deficiency.)

The Elephant

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Part of my problem as a writer is that I often feel like a minor player in someone else’s drama. Even if they don’t write their own story, I feel like I’m stealing if I write about it.

In searching for reasons why he was diagnosed with Lewy Body Dementia just weeks after his retirement, the husband has wondered if he is supposed to share his experience with others. Could it be he is meant to encourage others in some way, even though he is pretty sick about this whole thing? He actually says he might start a blog, or write stuff down as he thinks of it. For several reasons, I think the chances of him writing anything are slim.

For one, he has a history of brilliant ideas that never see action. I don’t see his diagnosis changing that.

Reason two – he doesn’t have experience expressing feelings. He has them, but they don’t usually bother him or beg to be shared. He would like to share things now, but they end up coming out in long, convoluted histories of his life journey accompanied by tears, and a tone of desperation and sadness. He’s doing it a little better now, but the first couple of weeks were tough and any compassionate person who had time to listen patiently ended up crying with him and giving him a hug.

Reason three is simply that writing is work and work isn’t something he’s looking for. Too much mental work makes his head spin.

It’s true that my story has a lot to do with his story but, of course, I tell it from a very different perspective. He reads what I write. I wonder if I will be able to write what I really think or will I change the narrative because of the effect it might have on him?

Interestingly, the two things that have helped the husband and I know each other better in the last few years are our “together” prayers and my blog/journal. I guess in each instance I tend to be more open, truthful and informative. In each instance he feels less threatened by my words because they aren’t spoken to him – they are conversations with God or my readers. He listens better. And the same goes for him when it comes to telling God his thoughts and concerns – one might as well be honest. When he prays, I learn things about him that he doesn’t think to tell me.

It certainly isn’t that I don’t want him to write his own story, from his own perspective. I do. But not writing about this part of my own life has been hard. The vague feeling that I couldn’t write about this big thing happening to us, has made me not write much at all. Somehow, when there is “an elephant” in the room, so to speak, writing about anything else takes second place to wondering about the elephant and what it’s going to do next.

That elephant is on my mind most all the time. I might as well write about it. Probably have to. Just sayin’…

Thinking It Over in September

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Now September is more than half over. As often happens when a large, mind-consuming task is done, I’m left wondering what to do next. All the things that I haven’t thought about while concentrating on our trip to Mayo Clinic, are probably still there needing to be attended to, but I’m not sure I’m remembering them all.  That is my most frequent prayer, that I would be reminded to do things at the right time – that nothing would fall through the cracks.  Things that do fall through the cracks unnoticed create bigger problems later.

We are becoming a little more devoted to our keto eating plan now that the husband is motivated to protect his brain cells, keep those mitochondria healthy, and all.  It is a good diet for neuro-degenerative conditions, as well as cancer, diabetes and heart issues. Since I wrote about his condition of Lewy Body Dementia I have received lots of suggestions of things to try and things to avoid. We already know about some of them but will probably try them all eventually – none are ridiculous, or lacking in a good success story. 

Which brings me to the point of how different this disease can be from one person to the next. Each individual kind of paves their own way down this path. There are some common traits, but even those come and go.  While it is interesting and hope producing to read stories of cures and great improvements, it can be equally devastating to read about unsuccessful outcomes. I would rather think that the husband’s story is his own and it’s not been told yet. Let’s just live well and watch what unfolds.

We can do this.

Thank you to all our friends who have responded lovingly, given us encouraging words, and have let us know that you are praying for us. A health threat is a bad reason to be drawing attention, but because of it we are newly aware of people out there who care.  I think that we could relieve your fears for us if you could be around Dennis for a while. I think you would be reassured that he is still himself, and thinking well. Circumstances are troubling, but God pays no attention to circumstances since they do not control him in any way.  It only makes sense to us to trust God and try to think like he does.

Tomorrow we are making a fun trip to the nearest “big city” of Duluth, MN. We are seeing some friends and then going to my favorite department store, Sam’s Club (lame, but true). We are looking forward to it. This weekend is Fall Fest in Hayward. It’s also the start of the Feast of Tabernacles. We intend to enjoy both. Life is good. We are not downcast. But don’t any of you stop praying, okay? Just sayin’…

Post-Mayo Clinic

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Thinking it Over

We’ve had a little over 24 hours now to sit with the weight of the doctor’s words, process them, test how our involuntary reactions are stacking up. He didn’t tell us what we wanted to hear most – that the husband’s problems could be fixed with surgery. It wasn’t NPH, normal pressure hydrocephalus. It was, or is, a form of dementia called Lewy Body Dementia.

I won’t go into the details of the condition. You can find it in Wikipedia or by putting it in the Google search bar or by clicking this . It’s not high on the public awareness scale but it is the second most common form of dementia, right behind Alzheimer’s. Everything has an acronym, so LBD is what it’s called. There is research, there are educational resources, there are support groups, but no cure as of yet.

The doctor spent time explaining thoroughly how he arrived at the diagnosis. He told us exactly how he wanted to treat the symptoms and what things should be done as far as lifestyle changes. We were already doing many of them so life will not change greatly for us. There are a couple new medications, and a few new cautions. Not much is different except now we know.

We are going to be okay. The husband is okay. He likes telling people it hasn’t affected his sense of humor at all and I always agree – it is as bad as it always has been. He is still very much himself, as most of you know.  At Mayo, he did quite well on his cognitive tests, and he will discuss complex things at times and have no trouble at all.  I would say that he is more emotional, more compassionate and understanding of others, more grateful and aware than in the past, simply because life has given him a jolt that enables him to see pain and struggles in the lives of those around him.  I think he feels held and loved by God more because he needs it more.

He is looking for any way that God might be able to use him. You know how men are (well, a lot of them anyway), they want to feel useful and not dependent. He wants to share his story and encourage others. He wants to call himself the Demented Disciple (not my idea).  We’ll see how that works out.  It is however, going to be an experience that we go through together as a family so I know I will have to write about it as a caregiver in order to stay mentally, emotionally and spiritually healthy. I don’t think it’s going to be easy.

I missed a day in my September blogging challenge, but since I’m making my own rules I’m going to ignore that.  The tests yesterday at Mayo were interesting. I may write more about them when I feel more in the mood to inform. The ride home was pleasant and we were glad to get to Hayward around 9 pm. That’s it for tonight.