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.