Two years

It is about two years now since we realized John had Parkinson's disease. He was diagnosed as soon as we saw his family practitioner and sent to a neurologist and then to the Movement Disorder Specialist who said Lewy Body Dementia.

John is doing better than I had expected. Our son, who isn't very observant, said he thought John hadn't changed significantly in those two years. The changes I see are that John is slower and gets confused more easily. But he is still taking care of himself except for wanting help putting on his socks and he still doesn't have hallucinations. He did a driving evaluation with the occupational therapist at the rehab hospital and passed. I think our new renovated house has improved our lives--he can deal with his sleep issues by watching tv or listening to books on tape in bed or sleep on his back and snore. We have a caregiver/cleaning person twice a week who does her best to keep his chaos under control. I'm happier anyway now that I have my own peaceful space.

He is in somewhat more denial about the cognitive issues, but he admitted recently he can't handle financial matters and the like when he asked for my help with a situation where he has been dropping the ball for years--serving as executor of the estate for some people who were important to him when he was young. I thought he had withdrawn a year or so ago but it turns out he didn't. I will play the illness card on that one--tell them he has early dementia and doesn't like to admit it. We also have arranged for an accountant to help aunt Florence with her finances so she doesn't keep asking John for help.

John and I talked a little about how he is doing better than I expected after two years. He wondered how much of it is due to his taking coconut oil and MCT oil? No way of knowing. He does have impaired glucose tolerance, so if some dementia is a kind of diabetes in the brain he is likely to be in that group. And that is what the oils are supposed to address by providing ketones as an alternative fuel for the brain.

We saw John's neurologist yesterday and the doctor was pleased with John's muscle tone. John is working with a better physical therapist and she has even motivated him to do some exercising on his own. He has even gone out for a walk a couple of times in the last few weeks. I just wish he didn't have such a tendency to decide to go for a walk or to go see his aunt Florence at dinner time.

John is home

John went to Spain with our son, who is studying abroad there for a month. They traveled together for a few days and then John went to Madrid alone for several days. Going to the Prado was on his life list. He had an international cell phone, and called me for help with several problems. The biggest one was that he missed his plane back from Madrid to Malaga and could only reschedule for four days later. By then he was ready to come home but Delta said the flights were very full so I persuaded him to go see our son in Ronda instead of spending his days trying to stand by for an earlier flight. He's glad he went but was very glad to be home.

He has terrible sleep patterns and has not been willing to try to change them. In recently months he usually falls asleep and sleeps most of the night in an office chair in front of his computer. Then he goes to bed for a few hours around 7 am. He has a chair that reclines and has a footstool and two different laptops but he likes to use the laptop in the privacy of his downstairs office. Last night he pinched a nerve in his arm and today has only partial use of his left dominant hand. I had to help him get dressed. So I expected that he would be at his worst when he got home from holding it together for a trip but he has ended up even worse.

When he is around me leaving anything hard or complicated for me to deal with, it is hard for me to imagine that he can travel alone. But he can still pull it together when he needs to. And he has lived all his life with making a lot of mistakes because of ADHD and is used to it. I discovered he hadn't put the registration paper in his car when it came in April (though he put the sticker on his license plate). He commented that he had made that mistake before.

Today's last straw was when he reported "we have a big problem," the sewer pipe had backed up into our downstairs bathroom. Guess who cleaned that up.

bedmaking

We have one of those air adjustable beds, and my side had a slow leak for months. Finally it got bad enough that I faced the problem and disconnected and plugged the air hose on my side to see if the problem was the bladder or the pump. Turned out the problem was the pump and so I called the company and they sent me a new one (for a small fee--we had some warranty left). I've been waiting for someone to help me move the bed to install it for a week, but finally gave up and John did it with me. We actually did better than I feared with moving the cedar chest and the bed.

Then we changed the sheets and put on a new comforter cover, and that was where John had a hard time. Some of his problem was fine motor skills like buttoning the comforter cover, but where he commented on his difficulties was that he got confused with the process of putting on the cover. My method is to turn the cover inside out and lay it on the bed, attach the comforter at the corners, reach inside the cover and grab the far corner, and then turn the cover right side out with the comforter inside. It does sound confusing when I write it. It is a lot easier to do with two people than alone.

sleep doctor

A belated report on our appointment with the sleep doctor on Monday.

A year an a half ago I had urged John to get a sleep study, because he would occasionally gasp and snort as if he was struggling to breathe. That study showed that he was having 3 apnea episodes an hour--not frequent enough to need treatment. The doctor said to come back in a year and see if it had gotten worse.

By the time John got back, our key concern was not the sleep apnea, but the REM sleep behavior disorder (RSBD). A year ago John was waking me up every night crying out in fear or anger in his sleep. He hadn't hurt me, but he had hit at me a few times and I didn't feel safe. He had been taking Imipramine to help him sleep and the Movement Disorder Specialist wanted him off that because it makes the RSBD worse. John wanted a substitute medication to help him sleep and the specialist said he should see a sleep doctor for that. The medication most often used for RSBD is Klonopin (Clonazepam), which would help him sleep but can make sleep apnea worse.

John didn't think he could do without a sleep medication (in addition to Clonidine) but he ended up weaning himself off the Imipramine about a month before the sleep study. The RSBD became less of a problem because I started moving to another bed as soon as he woke me, but also became less frequent once he was off the Imipramine. The sleep study showed less apnea than a year and a half before. The sleep doctor started focusing on telling John he slept ok even in the sleep study, he should just try to go to bed within 30 minutes of the same time every night.

I pointed out that our main concern had been the REM sleep behavior disorder. That hadn't showed up in the sleep study, which the doctor thought not surprising. I do think it has lessened considerably (though I still move to another room because of John's snoring). We agreed that if it wasn't bothering him or me it didn't need treating, but John asked for and got Klonopin for occasional use when he does need something to help him sleep.

sleep

When I got up this morning around 6 the dishwasher was still warm, so John must have finished loading it in the middle of the night, after sleeping in a chair for a while. He went to bed sometime after I got up. I got home from running and took a shower about 8:30 and he asked me what time it was. I thought he was getting up but when I went back to the bedroom an hour later he was asleep with a pillow over his eyes. I went to work then so I don't know when he got up.

In one sense it isn't a sleep problem because he isn't tired during the day. But he is sleeping later and later, which gets in the way of his being able to get things done. The exercise class he liked was at 10 am and I don't think he has gotten back.

The specialist said John shouldn't watch TV late at night because it would draw him away from sleeping. John said he doesn't have any other time to watch TV, since I don't like it on. The specialist said "Surely there is another solution for that."

I'm not sure whether to take the attitude that now he is retired he can follow any schedule he wants or to worry that increasingly disorganized sleep patterns will lead to problems.

cutting back medication

A few weeks ago the sleep doctor told John to cut down on the Imipramine he had been taking to help him sleep. John said he was going to put off doing so because he was afraid he wouldn't be able to sleep. Today when he looked at my notes for the Parkinson's specialist on Wednesday, he said he had cut his dose in a half a week or so ago and then a few days ago stopped taking it altogether. He thinks he is feeling less stress so sleep is now less of a problem. He has also cut back one of the two medications he was taking for prostate enlargement. He is still taking six prescription medications, but he has dropped two and reduced one. It is all a good sign.

beds

This is an example of how I get tangled up trying to figure out the answer when there isn't any. The question is whether we should replace our queen bed with twin beds so I don't feel so endangered at night by the REM sleep behavior disorder. But would we get rid of our queen bed?

We have one of those air adjustable beds (a sleep number bed), and I'm fed up with it because my side leaks sometimes (I think the valve sometimes closes properly and sometimes doesn't). I haven't faced calling up the store to get someone to come fix it. It may be out of warranty but it is possible to replace individual parts so it can be fixed to good as new for a fairly low cost. But the problem is only occasional, so I am afraid if they come to fix it it work fine that day and they won't be able to tell what is wrong. Because of his acid reflux and shoulder problems, John has the head of the bed elevated, which I hate because it puts a weird bend in the bed. Will they say that is the problem?

I want to move in a year, and have separate bedrooms then. If we do that do I want to keep the queen bed or have something smaller? My bedroom in the house I want to move back to is fairly crowded with a queen bed. When we move we will have an extra good quality twin bed with trundle. For me to have just a twin bed seems a bit odd, though I really don't need more room (no dogs). But it seems silly to buy a double and have to buy all new sheets.

When we move would we buy John a twin or double air adjustable bed? It has been helpful with his shoulder problems and it seems to me that as it gets harder for him to move around in bed it would be a mistake for him to have the queen bed. Or should he have the queen bed when we move, so it feels like I will still join him there sometimes, and then some day if needed it will be replaced by a hospital bed? Or do we just give him the extra twin, since part of the plan is to get him a really comfortable recliner since he already falls asleep in a chair and spends most of the night there.

It would be possible to not take on the larger issues but just swap our queen bed with the twins in the basement guest room (one is a trundle but pops up and is fairly sturdy). But even that would be a lot of work and it won't help the problem of John waking me up by talking or yelling.

One of my strengths is looking ahead and considering all the ramifications of various possible decisions. But in my present situation I get paralyzed when I do that. Then I'm afraid people will think I'm making a mess of things by thinking too much.

REM sleep behavior disorder

John does not have hallucinations or paranoia (yet), but the prospect of psychosis is very real to me because I really do feel endangered in bed at night by the REM sleep behavior disorder. A few nights ago I woke up just before he hit out at me, though he connected with my body pillow, not with me. He doesn't wake up, doesn't remember a thing in the morning.

The sleep doctor is going to put him on Klonopin, which is supposed to help, but only after he has a sleep study, which couldn't be scheduled until the beginning of September. If that doesn't work I think it will be time to just sleep in separate rooms. If we were going to bed at the same time I would do it now, but it doesn't seem as necessary when we usually don't overlap in bed more than two hours (he falls asleep in a chair, while I get up early).

Sleep Doctor

John had an appointment with the sleep doctor today. A year and a half ago I got John to go to this sleep doctor and he had a sleep study which showed very mild sleep apnea, not serious enough to treat. The doctor wanted to do another sleep study in a year, but this visit was more motivated by the Parkinson's specialist we saw in April, who wanted John off the Imiprimine he has taken for sleep for many years because it makes the REM Sleep Behavior Disorder worse. John has always had trouble sleeping, and the combination of Clonidine and Imiprimine is the first solution that has worked for him long term. The sleep doctor wanted a new sleep study before changing the medication and that can't be scheduled until early September. He said he would then try John on Klonopin and assured John that that would help him get to sleep.

With the specialist in April, John said he was willing to try to change his terrible sleep patterns, but now he has decided he is too set in his ways. He falls asleep in a chair around midnight watching TV or reading or using his computer and doesn't come to bed until sometime between 3 and 5 am. He also drinks a half a bottle of wine about three nights a week, starting about 10 pm. I hadn't expected him to change his ways--my thought instead is to get him a really comfortable recliner so that he sleeps in his chair in a more comfortable position. The wine is clearly problematic but it is his major hobby so he isn't going to give it up. He drinks late rather than with dinner because I don't drink and am somewhat uncomfortable when he does (I think it makes him less aware of other people's needs and feelings). If the doctor had pushed the point I might have volunteered that John should have his wine with dinner instead, though I wouldn't have liked that. The sleep doctor did raise the issue of alcohol disrupting sleep but he backed off when John asserted that he doesn't see any difference in his sleep between nights when he drinks and when he doesn't.

We see the Parkinson's specialist at the end of July so there will be chance to run this all by him before making any changes. I don't have strong feelings about what needs to happen. Because of the REM Sleep Behavior Disorder I'm just as glad not to overlap in the bed very much with John (I get up at 5 am to swim two days a week, between 6 and 6:30 other days). When John does wake me up crying out and thrashing in his sleep I just move to another room.