NPH

A New Normal to Be Enjoyed

/ Shirleyjdietz / Leave a comment

9-24-2019

We are continuing in a pretty pleasant place for several weeks now. There have been no big changes, no unusual delusions or fears – just a slow and steady movement toward a routine and a “new normal” life.

It has allowed me time to finish the garden and do some canning and freezing. I’ve become more regular at cooking meals and even sharing mealtime with family once or twice a week. I’ve bought a few things for the house, which some people call “nesting” and we’ve settled into our two bedrooms. It works fine to separate us at night since we like different temperatures and wake at different times. I get much better sleep this way. This is all possible because Dennis’s back pain has resolved and he is able to manage himself by himself. He is able to get in and out of bed, adjust his own blankets, and get to the bathroom without my help.

Also, another delusion was discarded yesterday. It has started to bother him recently that he misses so much of any conversation. He was investigating buying new hearing aids of the old analog style, ones that wouldn’t be beaming microwave radiation into his head. Somehow he convinced himself that the tube going into his ear was just a sound tube (which it is) and that it was perfectly safe to put his old hearing aids back in. Some articles I’ve read do express concern about the small amount of EMF emitted by the part of the hearing aid worn behind the ear because they are worn for so many hours every day. I am not directing him to those articles.

He has decided to go with a mustache and beard instead of trying to shave every few days. Last week we went into town and he got a professional haircut and beard trim, something he has hardly ever done. I have cut his hair ever since we were married so it was kind of a treat for me too. I thought he looked pretty good.

He reads a little bit again. He watches TV a lot – only shows that don’t upset him. He takes short walks without the cane or walker, eats his meals without trouble, and has been much easier to converse with. He seems a little more aware of his appearance. His blood pressure has been lower on a regular basis. All this is good and we will enjoy it as long as it lasts.

Is any of this due to taking magnesium, following a largely keto diet, and being healthier? Is it a slow healing in answer to prayer? Is it only a fluctuation in the course of LBD? I don’t really know and am wondering. Time will tell.

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He Is Retiring!

/ Shirleyjdietz / Leave a comment

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.

Is It NPH?

/ Shirleyjdietz / Leave a comment

June 13, 2018

The husband is so excited that there might be an explanation for his decline of late, and more than excited that there may be something to reverse it. He spent hours tonight watching videos about NPH by people who’ve had it and doctors who have treated it. It started like this…

Yesterday at the doctor’s office they did the routine things, weight, BP, EKG and then Dr. Sanchez came in and started talking with him about how he was feeling, what medicines he was taking, etc… I listened as he gave the doctor a “sort of” picture of his fatigue, discomfort, etc… but there came a spot where I had to tell the doctor that it was worse than what he was hearing. The husband doesn’t take walks, sleeps whenever he’s not moving, has no energy and all that.

After discussing sleep apnea and other possible causes of the complaints, the doctor asked me “Does he shuffle when he walks?” And of course, he does – like a woman nine months pregnant. Well, then he asked a couple of other questions and Dennis told him about his memory problems, and his urinary urgency, etc… and the doc said “You’ve got NPH.” I had never heard of it. It’s very interesting. And this doc knew a lot about it, even though it’s not very common, because his father had experienced it and been treated successfully.

NPH stands for normal pressure hydrocephalus. Hydrocephalus that we usually see is with babies who have the large head because of the excess fluid around and in their brain. But something like that happens with some adults too, usually people over 60. The treatment for this, no matter who has it, is to place a shunt to take the fluid away so it doesn’t cause pressure on the brain. The three outstanding symptoms that almost everyone has are the shuffle walk, the memory loss, and the urinary problems. The test for it is a spinal tap. They remove some fluid and often the shuffle walk is gone. They compare the walking ability before and after and see if it improves. Isn’t that strange?

The doctor also wanted routine lab work, which we are both having done tomorrow, since I also have some ordered for my yearly physical. He will also get an echocardiogram and will have to make an appointment with his primary medical doctor. He has appointments with the dermatologist and the dentist next week so we are going to be busy going to doctors (not to mention I might have to go with Scottie for her procedure too).

We don’t know for sure that it’s NPH, but the husband has such a strong feeling that he does that he will be really disappointed if he doesn’t. If he does, this is pretty important. We’ve been feeling bad and a bit scared at how rapidly things have changed for him and praying for the wisdom and help to change things. We always thought it had more to do with his weight and inability to lose but maybe we’re being shown something we had never thought of or known about. Kind of exciting, except for the fact that there is also quite a risk with brain surgery.

There’s a lot online about NPH so if you want to follow along with us and be knowledgeable, just google it and you’ll find lots of info. I’ve been happy about the way Dennis and I have worked together lately, to manage the move, the changes in health, the prospect of retirement and lower income – we have a three way talk with God every morning about everything we can think about. Just saying that we pray doesn’t adequately describe it. It has been so good for us. We don’t know what the path ahead holds for us but as long as God is marking out the way, we are not afraid to follow.