Time Goes On

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.


He Is Retiring!

June 27, 2018

My thinking is overwhelmed. It is the night before the husband’s retirement celebration and I am nervously trying to think through all his medical concerns. I know I will be asked tomorrow about how he is faring and what news we have. It is complicated.

The doctor we talked to today spoke so fast and jumped from one topic to another without explaining the relationship. I had to go home and google the condition to understand much of what he was saying. It was like he was on speed or something. The short of it is that the husband does have a type of heart failure, but not the kind that’s caused by a weak heart muscle. It is the kind where the muscle can’t relax. It is stiffened, and that can be causally related to hypertension (which he has) or sleep apnea (which I think he has) or a few other things like A fib (which he doesn’t have). It can be managed by treating the symptoms. He is already doing that as well as he can.

That is not to say that he doesn’t have the other condition (NPH), but the consensus is that he should be seen for that diagnosis at Mayo Clinic when we go up north. If he has NPH, he will need the specialists they have there. My head is swimming from being on the internet all evening looking at sleep apnea home tests and CPAP machines and applications for an appointment at the Clinic. I don’t even want to figure out how these things are going to fit in the schedule of the next two weeks before I’d like us to be heading out. It’s too much.

Both daughters have their tickets for the family reunion. People are posting their plans to attend. I am just hoping to be there and not in a hospital somewhere with the husband. We talk daily with my mom and I can tell she is a bit skeptical and wonders if we can pull this off. I’m trusting my master planner has it all figured out, and I’m going to be okay with the circumstances, as he arranges them. I think I appear calm, generally, but the fact that I keep going to the refrigerator, or the cookie can is evidence of what is under the surface. Food doesn’t exactly help how I feel but I crave it anyway.

There doesn’t seem to be much time between trips these days. Trips taking the husband to work, trips to the doctor’s office, trips to Good Will, trips to the store. The good thing about having only one vehicle is that the husband and I are together a lot, coming and going places. We are talking in a different way, or rather about different things than usual. Instead of him talking about fans and ventilation (thumbs down in my book) we talk about how he feels about retirement, and the preparations for moving and other stuff I find interesting and necessary. This is a good thing.