visit to the specialist

Yesterday John saw a Parkinson's specialist at Medical University of South Carolina, Dr. Bergmann. In our last visit, he said he wanted neuropsychological testing before he saw John again. John had that testing at the end of May, and I was upset when the psychologist presented the results as showing that John was not significantly impaired.

Dr. Bergmann viewed the test results quite differently. He said that a 37 point difference between verbal and performance IQ was not something you would see in normal Parkinson's. He said the block design test is the canary in the coal mine for Lewy Body Disease, and that was John's lowest score. He also thought John's 40th percentile on letter and category fluency was signficant.

He increased John's sinemet (to one 100/25 four times a day) to help his increasing Parkinson's symptoms but told us to be careful about dopamine discontrol syndrome and said that punding is particularly characteristic of Sinemet. He said to John that he needs to understand that one of the symptoms of the disease is lack of insight and that he needs to trust me.

Dr. Bergman didn't increase the Aricept above the 5 mg. John is taking. Dr. Bergman said that Aricept tends to makes the Parkinson's symptoms worse so he keeps the dose low, and that its positive cognitive effect builds up gradually over several months.

quick update

I drove 4 hours each way to take John to his doctor's appointment yesterday. We actually got home at a decent hour but I spent the evening trying work out tickets for Christmastime with frequent flyer miles. I thought I had it, but in the end it didn't work--very frustrating.

The Parkinson's specialist looked at the neuropsych testing results and he said of John's lowest score: "This test is the canary in the coal mine for Lewy Body." He told John he needs to understand that his judgement is impaired and trust me. I'll tell the story with more details this evening.

house renovations

I sent out 5 or six emails the end of last week looking for leads about house renovation. So far one call, and it is an interesting one from a designer. The man doesn't have particular experience with home design for disabled persons (though he said he had worked with such issues in institutions) but he said he has 50 years experience in design, contracting, architecture, and engineering (he is now semi-retired). I asked him to define what he would do for us and he said he would want to examine the house carefully and take measurements, discuss with us in detail what we wanted, including explaining our alternatives for different cost and quality, and then produce a design for us. Once we have the design, if we wanted his help with finding contractors, etc., he would give us a proposal and we could choose whether we wanted to contract with him for that. I asked him how much having him do a design would cost, and he said $500 to $800. That's worth it just for what we will learn, whether we use his design or not.

John liked my description--he felt that because this man wouldn't be trying to sell us something he would be able to tell us whether the house is really suitable for what I'm thinking we could do with it. So finally I'm making progress. Though meanwhile the roof of the house we live in how is leaking, when I thought I had solved that problem.

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.

asking for what I need

I've been pushing John to pay more attention to feelings, both his and mine. Somehow it feels right to push right now, even though I don't think it is going to work. Instead, I'm beginning to see a middle ground that we can actually get to, at least for now.

I'm going to need to learn to ask for what I need, which has always been a weakness of mine.

Here is an example. We were driving the other day and I noticed an ironman sticker on the car ahead of me. I said if I ever do an ironman (long triathlon) I am going to be very tempted to get a small tattoo of the ironman symbol. John said "I hope you won't, that would be such a bad example for the kids." I was silent for a while and then said "I am a person too." He wanted me to explain that and then said I had the right to do what I wanted but he still hoped I wouldn't because he thought it would be such a terrible example for the kids. I'm thinking that instead I could have said: "See my feelings--I'm feeling sad that I probably won't ever be able to live my dream."

If I'm willing to tell John exactly what to do, he will be able to do something to meet my needs for longer. That is better than nothing. A wise priest once told me that where we can hope to get (though it is very hard) is to learn to enjoy the little bit that a limited person who is close to us can give us, instead of resenting what they can't give us.

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).

moving/renovating

The comments on yesterdays post have me focusing back to the issue of whether we should move, which I put aside before we went away and haven't gotten back to except to ask some questions of the realtor who manages the other house.

Our current house has living room/kitchen/family room/bedrooms on the main level plus a big finished basement, in which John has an office. But he comes in and puts everything down in the kitchen and family room. I've been trying for a year to get him to bring some order to his stuff, with only brief success. So part of my wanting to move is to force us to organize and simplify and get rid of some of our excess stuff.

The other house is the first house we lived in here. We still own it, but it is rented to students until May 9, 2009. It has an attic with a bedroom and bath, a main floor with kitchen, den, dining room, living room, one bedroom and bath, and a basement with three finished rooms and one unfinished room.

It is the basement level that I would like to make into a handicapped accessible space for John. The basement is above ground on one end, walk in with no steps from a carport (under a screened porch). The layout is two long rooms side by side with windows and then a square central room with the bathroom on one side of it plus a separate walk-in shower and a sink on the other (at one point it was an apartment with its own kitchen). The stairs up to the main level are in the central room. The floor plan drawing below is from when I first moved there and I suspect is not accurate, but it gives a sense.

I'm imagining that the long room with the best windows (bottom right on the plan) would be John's sitting room, with a really comfortable recliner, TV, computer, and probably a daybed set up to serve also as a sofa. The central room would have a kitchen/work table and lots of shelves and a small refrigerator and microwave, maybe a bed. The other long room would be our son's bedroom when he is home from college.

I start thinking about it and I get daunted. Moving would be so much work. I might make a handicapped accessible space for John and then end up not keeping him at home. But I do know that whenever the time comes when I am alone I don't want to be in the current house, I want to be in the old house. And I would really like to move while John can help. He was initally dubious about the idea because he remembers the finished basement of the old house as not very nice, but he has become more positive.

I tend to focus on trying to find an architect or contractor because that feels like the easiest first step. I want to have someone look at the space this summer and give me an opinion about whether it will work well or not. Both houses are paid off and I just got a home equity line of credit on the current house so we have some financial flexibility.