Parkinsonian movement

What Hope Can Do

/ Shirleyjdietz / 2 Comments

I haven’t recorded all the things that Dennis has gotten through lately, and since they are remarkable they should be recorded.

We’re in a stage where the doctors seem to be done with him. No one is checking him or recommending new treatments. He has discontinued some of the supplements that didn’t seem to have much effect, but were costing a lot of money. It could be viewed as a discouraging time, but he remains outwardly hopeful and unperturbed.

He was a little unsure about the travel we had planned for the second half of July – it was ambitious. We went from our home in Wisconsin to Seattle, by car for “wedding week”. He wanted very much to be present to see this daughter get married so he did what he could to prepare, and tried not to put any trouble in the mix of all we had to do.

We spent five days driving out, in which we learned to get in and out of hotels, restaurants and restrooms with all our “stuff”. It was very different from being at home and I was unsure what that would do to him, but he adapted. There were a lot of times when the challenge of steps, inclines, small spaces, and long hours made him very tired. We had a wheelchair/walker with us but by the end of wedding week and the four day return trip, he was riding in the wheelchair most of the time. I was very worried that he might fall.

It was a good trip. We were relieved and amazed to be back home after two weeks away. He has recovered and not experienced any lasting changes from all the unusual routines. I thank God every time I think back on this time.

Yesterday morning, praying about the day ahead, God and I came to an agreement. Our new son-in-law’s parents were coming for their first visit to our town and I had arranged with a friend for a boat ride on our favorite lake. I knew it would be kind of weird for Dennis not to be there with us, but I questioned whether we could get him in the boat easily. Even he had said he would just stay home because it sounded hard. We had done this same excursion two years ago with different friends and it had been hard then. He has declined a lot since.

Back to the agreement. I felt that I should ask Dennis again if he wanted to go on the boat, and if he did we would plan on it and God would help us. As I suspected, Dennis wanted to go. Here’s how it went down.

We arrived at “Lunch on the Lake” and talked with Mr. Jacobsen. He allowed us to drive down the steep embankment, on their lawn, to get near their boat dock. Dennis used his walker to finish the distance and get out on the long narrow dock. It took a great deal of coaching and encouragement from all five of us to tell him where to hang on, which part of him to move next, how high to lift his feet, when to duck under the boat awning, etc… , and we were ready to catch him at any moment if we had to, but he made it. It was remarkable because this is a guy who often has trouble just getting in bed.

There he is, in the boat.

We had a good hour long boat ride and a nice lunch with our guests before we had to repeat the whole process in reverse. I think we all had a sense of accomplishment when it was over and we were in the car again. We did a little more sightseeing with him riding in the wheelchair, and by the time company left, he was ready for his overdue nap.

But, can you see what hope can do? Sometimes God gives us challenges and wants to see what we will do with them. With the challenge, he promises to help, to teach, to show up in some way to demonstrate remarkable things. I am so thankful we are not on this journey alone.

This guy. Hopeful.
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A New Season, Possibly

/ Shirleyjdietz / Leave a comment

For the last two and a half years since diagnosis, changes have been gradual. Most of them have been physical and of a parkinsonian nature. The shuffling, tremor that started in the right hand and now affects both, sometimes a tremor in the legs, incredible slowness of movement, a blank facial expression – all those symptoms have been the most noticed. Even with these things, Dennis has been mostly independent. He moves himself from one place to the other, gets to the bathroom without help, puts himself to bed, gets a snack when he wants one, and makes decisions to go to church or the chiropractor or to visit Mom or my brother.

Cognitively, he is able to think and remember fairly well. He brightens up when talking with friends on the phone and carries on a meaningful conversation, although slowly. Sometimes he snaps into his scientific mind and amazes people. He has become focused on a few subjects, which he follows by listening to YouTube podcasts on his phone. He has a list of prophets that provide daily updates and he often listens to the same one several times.

He doesn’t spend as much time researching his own disease, although he runs across something every now and then. He is more centered on the supernatural, hoping for a better chance with God than he has noticed with medicine. The most recent therapy which he is still receiving is applied kinesiology which includes chiropractic, muscle testing, light therapy, nerve stimulation, cranial-sacral therapy, and tapping, all from the same practitioner who also prays with him.

He was alone at home for one week in April while I took Mom to Florida for a memorial and family visit. He had my brother and Lurae, a neighbor, looking in on him and providing meals. He seemed to be fine with that. My brother remarked that he perhaps did things better than he does when he’s being waited on all the time.

But I think I notice, following that week, a tendency to sleep more during the day, and not as well at night. It looks a lot like depression, and why would it not? There is so little he feels he can do except listen to his phone. That gets tiring so he goes and takes a nap.

Last night he could not tell what the food on his plate was. He was trying to cut it up as if it was chicken, but to his surprise it was salmon. He had a lot of trouble getting food on his fork and reverted to using his fingers to eat the fish and green beans, which is okay with me, but messy. He took a spoonful of cranberry relish and thought he was putting it on his plate but no, he was purposely putting it on a napkin that he thought was his plate. I think the whole mealtime experience devastated him. When I asked if he was having more trouble with his eyes he said yes, and that he thought it was probably his brain rather than his macular degeneration getting worse. He was very resigned and quiet about it.

My question is, are we heading into a period of more noticeable changes that are taking away vital functions? I hope he will still be able to travel to our daughter’s wedding in July. He was so looking forward to that.

Going Cautiously into Summer

/ Shirleyjdietz / 1 Comment

I say cautiously because last summer is all too vivid in my memory. The plague of anxiety, the delusions, constant watchfulness and attempts to reassure, living in weird circumstances trying to avoid electricity and evil spirits. Oh my.

And then it went away, rather suddenly. It was as if he just decided he was wrong and didn’t feel any of the harmful sensations he had been feeling.

We have had a fall, winter, and spring of stable cognition and emotion. I am thankful. I cannot know for sure why it’s been easier. I guess I don’t need to know. We are continuing to do what we have been doing, in case some of that is helping. From time to time Dennis thinks of adding or subtracting a supplement, and if I don’t think it makes a lot of difference I don’t argue about it, although I do get tired of the chore of filling the daily pill bottles.

Dennis elects to stay home more and more. He doesn’t always go to visit the relatives when I go, or out to eat either. With COVID 19 restrictions he has gotten used to more inactivity – no church, no trips to library or grocery store. TV is his entertainment and he watches it so much he has adopted TV people into his family. I often find him with the TV on while he’s also listening to something on his phone. But he is interested in what he watches and refers to a lot of it as his “research” on various topics.

He’s done a lot of checking up on old friends from our days of teaching at Ambassador College. He calls and follows the trail from one person to the next, finding out how they are. He sometimes picks up his horn and plays something. He tries to take one or two short walks every day, or rides the stationary bike. He knows exercise is important but he often is more comfortable sitting still.

His biggest problems are the constant tremor in both hands now, overall weakness and instability, regulation of his bowel and bladder, some hypertensive spells, diminished sight and hearing, and the inability for planning or complex thinking. He does some of his own hygiene care, but I do have to shave him and remind him to shower and change clothes. He can get snacks from the fridg, but his meals are up to me most of the time. He’s okay by himself at home and I can leave him alone while I go to the garden or to Mom’s for several hours at a time. All in all, life is quite manageable.

Things I notice:

It takes him a long time to come to his chair at the table, pull it out, position himself in front of it, and put his body down. Long time = almost forever.

His skin problems are still severe. He is always scratching skin flakes from his beard, neck, head. His eyeglasses are always so dirty I don’t know how he sees through them. His shirts are always covered with skin flakes and unsightly.

The shuffling is his normal walk now. He’s started a forward lean that sometimes propels him forward faster than he wants to go. He looks old and frail when he walks, his hands shaking but not moving normally with his leg action.

His voice is hard to hear. He talks slowly, so slowly, and his words don’t have edges that make them easy to distinguish. I’m always saying “what?”.

He takes a morning nap and an afternoon nap most days.

So from day to day, not much has changed for the last few months – which is why it’s hard to think what to write. We are mostly praying that he will be able to go to Seattle for a wedding in August (youngest daughter) and another wedding in North Carolina sometime after that (oldest daughter). Travel is not something he looks forward to anymore so the planning will be challenging.

December: Monthly Update

/ Shirleyjdietz / Leave a comment

Thanksgiving has come and gone. December is almost over as well. This is our second winter since the diagnosis and I was thinking over the past year and comparing our present with the past.

Dennis is thinner, less physically active and a bit more dependent, but not drastically changed. I think I notice Parkinsonian symptoms increasing faster than anything else. His hand trembles almost all the time when he isn’t holding something or doing some motion. His face is rather mask-like and his voice is soft, monotone and often hard to distinguish. He always shuffles now, especially outside when he’s trying not to slip on snow or ice, but also in the house. And he is sooo sloooow.

Since the hospitalization last month he has not had any trouble with thrombosis – but, of course, he is on an anticoagulant. The doctor says he may have to stay on it indefinitely. He has had continuing trouble with his blood pressure being high and we are still working on getting that stabilized.

He has been much more content to stay at home by himself. He watches a lot of TV, talks on the phone to anyone who answers his calls, and does a lot of thinking (and a few naps). Yesterday I was even able to leave him at home while I took Mom to the doctor for outpatient surgery. He found his own breakfast and lunch without having to call me, which is an accomplishment for him.

One thing we have added is a membership in the senior fitness program at the hospital. He uses the stationery bike when we are there, usually for 39 minutes and then he is done. I have to instigate our trips there and I intended to be faithful at that but no, haven’t done so well.

December is his birthday month. In fact, his day is the day after Christmas, which means he’s always felt a little anticlimactic. It’s a good thing he doesn’t have expectations of grandeur. We usually have to remind him that it’s his birthday. This year both daughters are coming to celebrate with us. They have been faithful visitors since the diagnosis of Lewy Body Dementia. He will not have a hard time enjoying them since he is still quite good cognitively. I got him a couple of things too, but I cannot say what they are because I want them to be a surprise.

The thing that disturbs me most lately is that I feel emotionally distanced from him. I don’t know if it’s my problem or his, or a combination. Some days I spend time reading to him and that seems good, or I take him to exercise and to lunch, also good. But a lot of days I would rather spend my time elsewhere. His interests and topics of conversation are very limited and not very interesting to me. I feel like he talks at me, not with me. Once he starts it’s hard to get him to stop and I often just walk away without him seeming to notice at all. He just keeps talking. I seldom want to watch TV with him. I’m thankful I have a room to retreat to, where I can read or talk on the phone or watch a movie. I know I’m neglecting his social wellbeing, but I am not sorry enough to do something about it.

I have asked him to think about what he wants to do for our anniversary in mid-January. He isn’t saying much.

A Problem Walk

/ Shirleyjdietz / Leave a comment

10-2-2019

After several weeks of stability and no new problems developing, I was surprised by what happened today.

Dennis decided he should go for a walk. It’s been cold and rainy, making it easy to stay inside without really planning to avoid exercise. He realized his walks had been infrequent. He also has had trouble sleeping and staying asleep and thought the exercise might improve that problem.

I noticed right from the beginning that he was walking slowly. He had to be reminded every few steps to pick up his feet and walk instead of shuffle. We got to our turnaround point and he began to lean to his right and couldn’t straighten up. The steps got shorter and he said he had to stop for a minute.

I thought his posture might be making it more difficult to walk because at this point, he was leaning back and to the side, with his belly thrust forward and his knees always bent. It was very strange and he couldn’t correct it, but he insisted on “walking it out”. A few steps later he was locking up and hardly able to move so I ran back to the house for the walker with the sit down option. He tried to walk with it but soon gave up and sat down. He pushed himself backward, seated in the walker, all the way to the house. He even had trouble with that. It was very odd.

He was also puzzled, but decided that he had gone too far and had simply gotten tired. He was glad to be back in the house, resting in a chair that he could easily get up from.

This whole episode was very Parkinsonian in nature. I have thought that perhaps he was getting better, reversing some of his symptoms affecting mood and cognition. That may still be the case but this is a setback toward a movement disorder. It’s unsettling to me. I have been counting on him being able to move himself. If he loses that ability I don’t know if I can care for him without more help. Not good.

Exactly What?

/ Shirleyjdietz / 2 Comments

What exactly am I to do?

He came shuffling from the bedroom where he had gone to sleep and found me, still working on the computer. I dread the sound of him coming because I know he is going to tell me some new reason why he has to get out of this house.

“Do you see this?” He hold up his hand with the fingers curled nearly shut. “My hand was frozen like this. Locked. I couldn’t move it.”

His face has “that look”. Haunted, bleary eyed, almost motionless even when he’s talking and trying to be dramatic.

I don’t know what to say. “It’s a movement disorder, Parkinsonian problem. How do you want to remedy the situation?”

“There is no remedy. I have to get out of this place.” He teeters and catches himself as he turns and shuffles out again.

I think for a while and follow him into the dark room. We talk. I’m desperate. He’s desperate. In frustration I tell him to get his clothes on and get in the truck. I’ll take him somewhere remote and we’ll both sleep there tonight. He refuses my offer. The truck is not grounded, so it wouldn’t do any good.

He’s so good at throwing something crazy back at me, almost like a test, but he doesn’t think it’s crazy at all. “We need to call Mayo Clinic and see what they do for this. They’re here in the Midwest where there are lots of dairy farms with grounding problems. They probably have people with this and know what to do.”

This sounds ridiculous to me, and I know what Mayo Clinic will think when they see his diagnosis, but it is something I can do. I can ask. Will that satisfy him? I tell him they aren’t going to get back to him tonight.

He knows that. “They’ll probably just tell me to get away from the house.”

Yeah, probably.