I have to write about this because I am so conflicted. Is this really as crazy as it sounds or is there some validity to what my husband is thinking and experiencing. I know he really is experiencing something – but is it LBD or what a normal person would experience if they were extra sensitive?
This week a big Excel Energy truck came to our driveway. The husband had called in a complaint about low voltage. He has been developing his theory about why our smoke alarm has been going off at 4 am. He has added, as proof, any instance of alarms going off in any building in our development.
When we started having trouble with the TV he watched in the previous condo that also became part of the low voltage problem. He is sure the TV in our new condo has problems because of low voltage.
The other night he came back from dinner at a restaurant and was “abnormally tired” the minute he stepped in the house. He decided it was electromagnetic waves, energy gone rogue in the house, that was dangerous. He didn’t want to sleep in the house. He didn’t want me to sleep in the house. He was panicking and woke me up to tell me how scared he was. The fact that he had to call me more than once to wake me was his evidence that I was already affected.
I couldn’t think of anything I could do except pray with him.He did finally sleep but remained convinced he was being harmed. His nerves are super sensitive and he knew something was wrong.
We lived through the night. In the morning he didn’t say much but he wanted to stay out of buildings, both our condo and my mother’s, away from the energy fields that weakened him.
That morning as I worked in the garden he called me, all excited. He had figured out the problem. After drinking some milk and eating some peanut butter, his thinking had cleared and he remembered eating “Cajun potatoes” the night before at dinner. He was sure they had enzymes in the spices that caused his tiredness. Of course.
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Author: Shirleyjdietz
Endless Discussions
5-27-2019
Yesterday, because I was visibly sad, the husband and I had several conversations about our relationship. I tried to tell him, without being harmful, why it is that I have trouble deciding to take him seriously, or relying on his decisions and assessments. I know it must be hard to hear that kind of thing. I don’t think he understood and he still thinks that I am wrong in taking his LBD diagnosis into consideration. He thinks everything points toward his recovery.
We had discussions about the CO alarm at 4 am, which he is sure is because of variations in the power grid. We should call the power company and have them do something about it – I don’t know what. We had discussions about tithing the proceeds from the sale of the house, about how to identify where the Lord wants tithe administrated, about who can decide these things. We had discussion about the supplements he ordered and wants to return, thinking he doesn’t need them because he is no longer on blood pressure meds. There is no trace of who to get that money ($250) back from that I can find, and he is useless in tracking things on his phone or computer.
He went to church – two services – yesterday to hear piano player Huntley Brown. He sang his heart out and greatly enjoyed the music and worship, but was totally worn out by the effort. He got tired in the morning just making one side of the bed. Somehow the tiredness became my fault for helping him do it. Aunt Lois is also tired all the time because I help her too much, keeping her from getting stronger.
In many respects he is like a child in an old man’s body. I can tell when he is coming by his slow, shuffling sound. He always appears very old and slow. He does unusual things, like standing up in church and directing the music, waving his arms but he is innocent and entirely abandoned in his actions – no shame, but joyful and unaware of strangeness. He doesn’t care what others think or how they perceive him and that is the child part. I don’t want to take that from him, but it puts me in the position of being a caretaker over someone who is not quite “with it”, rather than a partner in an equal relationship. I have to be the one who considers all sides of an issue and whether to affirm or deny his course of action.
In all our discussions, I primarily wanted to be understood but I don’t see that it happened. To his credit, he was always sincere and soft spoken, which was helpful. I took a walk late in the evening and encountered Den and MP, who joined me. They listened to me and I was comforted just to know that someone cared about my tears and would let me talk.
I struggle right now with a sense of displacement. The house has been sold. We are to leave Mom’s condo and set ourselves up in the other one. We need to decide whether to get our stuff in Greensboro transferred up here. We need to start paying rent. Everything about our situation seems to have changed and I’m trying to sort it all out. I need God to reassure me that we are here for a reason and that we are still in his will and plan for us. I have attitudes and feelings that I’m not comfortable with but don’t know how to dispel.
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Taking a Vacation
I took one. It was planned last year, involving expense and arrangements with other people so I could not easily change the plan, although I considered doing that. To be gone for seven days required more effort and stress for others than I had thought it would.
I am glad that I had the foresight to ask youngest daughter Esther if she could come to stay while I was gone – to keep her father company, and to help her grandmother not feel the whole weight of socialization. I also wanted feedback on my own observations and assessments. I don’t always know if I am seeing what I think I’m seeing, or if I’m just being impatient and somewhat biased because of my closeness to the issue.
There were hard moments for both of them – Esther confirmed this – but overall she did a great job of making him happy, helping him feel guided and informed. She gave him tips on calming himself, on exercising with dance, and being lighthearted and silly as therapy. They talked. They did things together. It was good for him and good for their relationship. I am grateful for all she supplied, but also aware of the cost for her. Taking solo vacations is probably not something I will be doing a lot.
However, we can take vacations together, the husband and I. And that will be another adventure, I’m sure.
What Will Today Bring?
That is what I think to myself each day as I wake and take stock of the time and where the husband is. Today he was asleep initially, got up once to visit the bathroom, and then went back to bed until nearly 10 am. Even Mom was wondering about him and asked me how he was – was he alive?
As I watched him get out of bed, he told me he wanted to see David Kelling, the chiropractor. He was pretty sure that what he ate the night before was not good for him. He had decided that the meatballs must have had pork in them and he wanted to find out if David knew how long it would take for him to purge himself of the effects. The effects had mostly to do with his fatigue, and sleeping longer than usual. “Clean” and “unclean” has increased relevance to him since watching one of the TBN preachers on the subject.
He decided that fasting was the order of the day for him, but he did want to pray with me for the meal I was having for breakfast. He remarked about how different it was for him to be praying for my breakfast, but his fast – that it would be a good one. For several minutes I was able to distract him with news of people we had known in Florida, but soon we were back on the subject of health, only it was now my health. According to his observation I thrash around in my sleep a lot, and he is unable to wake me lately, to get me to stop.
Behind this topic is his supposition that I have REM sleep disorder, which means I’m just like him only a few years behind in my progress. My symptoms should move me to take more magnesium, quickly.
He was able to sit and lift one leg up onto the opposite knee without using his hands to pull it up. He is doing this the last couple of days, meaning that he is improving his strength and flexibility. Everything he does better than the day before is because his therapies are working. Everything he does worse is because of something he did wrong – the wrong supplement, the wrong food, not enough exercise… The fluctuations are never because of LBD and its usual course. Sometimes he looks sad and he may be thinking of the LBD, but he does not acknowledge it.
I looked at his blood pressure log yesterday and noticed that he hasn’t recorded anything since 12 days ago. This was an obsession not too long ago, needing to be done every time he “felt” any change. I don’t know if he’s forgotten or if he believes his pressure is normal now and no longer needs to be monitored – since he stopped taking all his medications. Yes, he did that. Dr. Chambers told him it wasn’t the smartest thing to do since he still had some high readings and having a stroke would put an end to all his other therapies. He didn’t agree. He is getting better.
In spite of getting better, he has come out for help putting on his shirt, and just came out to tell me what a terrible time he had putting a different belt through his belt loops while trying to keep his shorts on.
He has taken to heart what he heard from another preacher on TV, about being selfless and thinking of others. Twice this week he has insisted upon riding in the back seat of the car and letting Mom have the front. He makes sure it gets talked about.
Trying to Sleep
Bedtime is often early – 7 or 8 pm – after an early dinner. Around 9, just when I think I will have some undisturbed time to read or write, I will hear him get out of bed and shuffle to the door and peer around the corner at me while I sit at my desk. He will do a silly little wave and announce his first wake up of the night.
Tonight, he came out and sat down next to me as I wrote. He waited until I looked at him and then told me that he wanted to talk to me. Conversations that start like this are often ones I don’t like.
What he wanted was for me to document “his phase” that he was in. It’s a problem that happens at night and this is how he describes it. It’s tension that keeps him awake, a bit like restless leg syndrome. He feels that his blood pressure is high and that he needs to have more magnesium water. He wants very much to sit and resolve this tension but knows that he must do something active to resolve it.
I suggested he take his blood pressure to verify what it was, but the act of getting up and putting the cuff on to take the reading was something he said would cause more tension. He didn’t want to do it but finally relented if I would go get the cuff and put it on him. (And yet he knew the next thing he needed to do was his high intensity exercise, which involved moving too. He admitted the contradiction.)
His blood pressure reading was 167/95 with a pulse of 49. He got up to do his exercises, which consist of mostly arm movements and a little bit of squatting for four minutes, but I doubt he spent that long at it. He insists that it be recorded as his hands begin to tingle, and he feels the stimulation up the back of his neck, and of course, he gets tired and breathes a little heavier. All this is important to note because it shows that you don’t have to have a lot of exercise to get what he calls “nitric acid dump”. This is an exercise protocol he learned from an online coach named _______. After exercise his blood pressure was higher 183/106, pulse 58 which he predicted would happen. After resting for a while and drinking more Mg water his pressure was back down to the pre-exercise reading.
From reading, he has a mental construct of what he thinks is going on in his body. Taking his blood pressure puts pressure on his bladder. Autophagy starts taking place a certain number of hours after he eats and makes him have to clear his throat and spit, makes him have to urinate, makes him need more and more magnesium. Something makes him feel that the whole process is speeding up and requiring more magnesium. He measures how much he thinks he needs by how much he is drinking. He used to sip on one 16 oz. bottle of water with 300 mg. magnesium per day and possibly another one during the night. Now he is asking for at least two and sometimes three. He asks because measuring the minerals is difficult for him. He shakes and spills some.
He believes the night time spitting and urinating are signs of autophagy, which is most certainly clearing the misfolded proteins out of his brain. He feels like a scientist, taking part in a ground breaking experiment, which must be recorded. (I don’t know how to explain the drama involved in his every move, every word of this life changing stuff…)
Faithfulness
04-03-2019
So tired.
Last week we went to church and sang “Great Is Thy Faithfulness”. As he began to talk to us, the pastor wanted three people to tell of God’s faithfulness in their lives. I always jump up at this kind of invitation. It’s not that I have it in mind to say a particular thing, but I know God has been faithful and I should say so. I stumbled around a bit, explaining the difficulty of moving to a new area and then getting word that my husband has dementia. It has had its depressing moments, circumstances that we weren’t happy about, but we go through each day, able to find the goodness of God toward us. I said something to that effect.
As I finished, the husband raised his hand and said, in his “Lewy voice”, “and I wouldn’t have it any other way”. I know what he meant by that. We have talked it over numerous times. He has felt an actual friendship with Jesus and had dreams (I think he would call them that) where he’s been given words to think about and investigate. Jesus knows he’s a scientist and loves to figure things out, so he gives the husband clues, that lead to more clues. If he gets stuck and doesn’t know what comes next, he asks and waits until Jesus tells him more. He’s very touched by this friendship and gets emotional relating the details.
It’s never been his choice to have this diagnosis, of course, but knowing that God has allowed it for a reason, he is accepting it. The resulting relationship with God, and with friends and relatives, has enriched the experience beyond what he would have expected in life. In that sense, he really wouldn’t have wanted it any other way, because it probably wouldn’t have happened any other way. God knows how to make happen what we need to have happen.
It’s All Connected
3-30-2019
This is a list of links to articles that the husband has been reading and discussing with his brother for the last couple of months. I intend to read them one or two at a time and try to summarize what they mean, in addition to what they mean to him.
His research often starts with a symptom he’s experiencing and trying to understand. He uses google on his phone and reads, then he forwards the link to his brother who is a retired university biologist. One article will lead him to another one, and there is always a connection to be made to the next thing. Sometimes I can see his reasoning and other times I think he’s stretching things a bit. A common thread is that he believes many of his symptoms have something to do with magnesium deficiency.
Magnesium is needed for so many functions on the cellular lever that a deficiency could affect any organ system in the body. He believes correcting the deficiency could reverse the damage in the brain that causes diseases like AD and LBD. That’s what he’s trying to do.
http://www.LBDA.org The Lewy Body Dementia Association, nonprofit, national
https://www.aging-us.com/article/100690/text#fulltext This is the article about reversal of cognitive decline that gives the husband hope
https://www.ncbi.nlm.nih.gov/pubmed/11850416/ this is where the interest in magnesium began
https://www.sciencedaily.com/releases/2011/01/110110103832.htm all about nitric oxide’s influence, enhance NO may prevent inflammation
https://www.fasebj.org/doi/abs/10.1096/fasebj.31.1_supplement.1035.4 he tries to figure out why eating cheese gives him a sensation in his head
http://milkgenomics.org/article/magnesium-milk-overlooked-mineral/ about how milk is a good source of magnesium and how magnesium has to be present for vitamin D to be processed
https://www.ncbi.nlm.nih.gov/m/pubmed/1390610/ soy beverages decrease the bioavailability of Mg and Ca
https://sciencing.com/red-clay-22940.html red clay interest him, however magnesium levels are low in clay because of leaching
https://draxe.com/10-bentonite-clay-benefits-uses/ the uses and actions of bentonite clay, a source of magnesium and a chelating agent for heavy metals
https://www.drperlmutter.com/bone-broth-benefits/ nutrients in bone broth such as collagen and other proteins contribute to skin health and gut health
https://www.ncbi.nlm.nih.gov/m/pubmed/10454449/ magnesium and autonomic cardiovascular regulation, hypertension
https://mail.google.com/mail/ca/u/0/#starred/FMfcgxwBVzsNPrgBfflvCRmRJSpkvsfg?projector=1&messagePartId=0.1 pdf of magnesium rich foods
https://www.thoughtco.com/laughter-therapy-verse-of-the-day-66-701910 laughter promotes health, use in relieving depression
https://www.rnareset.com/products/remag-magnesium-solution?variant=13899661319 magnesium in a more bioavailable form from Dr. Carolyn Dean – ReMag
http://researchpub.org/journal/jbpr/number/vol1-no2/vol1-no2-2.pdf Rapamycin and autophagy as potential treatments for AD
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4203545/ autophagy contributes to limiting viral
pathogens
https://mail.google.com/mail/ca/u/0/#starred/FMfcgxwBVzrDtTxvLjhzbxfQDNnddRxD?projector=1&messagePartId=0.1 dietary buffers for dairy cattle – no clue why this is relevant
https://triggered.clockss.org/ServeContent?rft_id=info:doi/10.1124/mi.8.5.2 the brain, PTSD, TBI
https://mail.google.com/mail/ca/u/0/#starred/FMfcgxwBVzrCxWxJpDWHlDzrwLfNNQrV?projector=1&messagePartId=0.1 this is a good one on magnesium deficiency, why it’s widespread and dangerous.
https://www.dietdoctor.com/renew-body-fasting-autophagy doctor get Nobel Prize for discoveries about autophagy. Fasting and autophagy to rid body of damaged/broken cellular components
https://www.healio.com/optometry/nutrition/news/print/primary-care-optometry-news/%7Bf857ffe3-f195-4455-9040-4f353e311c9b%7D/pilot-study-data-indicate-macular-degeneration-responds-to-nutrition the role of nutrition and supplementation in macular degeneration
https://draxe.com/varicose-veins/ Varicose veins, home remedies and nutritional advice
https://www.viviscal.com/hair-care/magnesium-for-hair-growth/ magnesium deficiency can lead to hair loss and scalp problems, dietary and supplemental Mg can have positive effect on hair growth
https://articles.mercola.com/sites/articles/archive/2017/11/26/fasting-powerful-metabolic-therapy.aspx magnesium for maximum heart health
https://www.youtube.com/watch?v=kZFa-yw3znE Dr. Carolyn Dean on magnesium
https://www.youtube.com/watch?v=TDAjQFPiAIs&feature=youtu.be Dr. Carolyn Dean on fibromyalgia and CFS
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4455825/#__sec7title Magnesium basics, importance of Mg in numerous body functions
Why This Blog
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
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
He’s a Scientist
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.
Hope in the Face of Dementia 