Many museums

We have evolved a pattern. It takes John until about 10:30 am to be ready to head out, so I go to the supermarket or my daughter and I go to the coffee shop in the next block to check our email. It is somewhere between 11:30 and noon before we get out of the subway at our destination, and then we stop for a light lunch before going into the museum.

Today we went to Schloss Charlottenburg . My particular interest was section of the palace that is a museum of prehistory and early history, including what remains in Germany of artifacts from Troy (many were taken by the Soviets and have not been returned). Our daughter was interested in the Palace as an example of reconstructing historical sites and so she and John toured the palace. I am less interested in palaces and our son and I went to a museum across the street called Sammlung Berggruen showing mostly Picasso and Klee. There were some Klees that made me gasp.

We met up again at an icecream shop that was advertising milkshakes. The kids just wanted to come back to the apartment so they got off the subway at our stop and John and I went a little further to see Nicholaikirche, the oldest church in Berlin. It turned out to be closed for construction, as a number of important sites still are in what was the eastern half of the city. We did stop into another church which was a museum for the architect Schinkel. I saw something that said Berlin and Pottsdam between them have over 300 museums, and I believe it.

Our son isn’t as interested in museums as the rest of us, but if we respect his wishes some he is willing to go along. He wants to see the Natural History Museum so we will make that our first priority Tuesday. He wanted more time there than a quick trip this afternoon.

Our apartment is half a block from Berlin’s Konzerthaus, so this evening we went to a symphony concert of Beethoven and Bruckner by the Rundfunk-Sinfonieorchester. The student rush tickets for the kids were 10 euros but it cost considerably more for John and me. Our seats were in the front row of the first balcony behind the orchestra, which is a fun place to sit because you can see all the conductor’s gestures. We had quite a close view of the musicians as well, which John particularly enjoyed. I told the kids this was a life experience but they could leave at intermission if they wanted to and they did, but they seemed very focused on what was going on while they were there.

In Berlin

John admitted to getting something wrong yesterday and I actually am beginning to get to the point of feeling sorry for him. It has taken me a while—he and I both tend towards acting like we know it all, and I suppose I’m particularly intolerant of my own faults in him. So I used to be just glad when he admitted I was right. In this case he was convinced that American Express traveler’s checks were the best way to bring money on our trip. That was true 20 years ago, but American Express has lost out to Visa in Europe and ATMs have changed access to money when traveling. John has never been good at adjusting to the world changing, and that is getting harder for him. It actually didn’t work out too badly—the place that he found to cash travelers checks will waive the fee if you cash a large enough amount and we will do that next week to get the cash we need to pay for our apartment in Prague.

Once we had figured that out yesterday we went to a very interesting anthropological museum in the suburbs, at the Museumszentrum Dahlem. It was lunchtime by the time we got there—I was ok with that (and we found a Chinese food stand for a quick cheap lunch) but our daughter was frustrated. She is very interested in museums, may want to make that her career, so she wanted lots of time in the museum. She wants not only to see everything but also to read everything. She and John go at about the same pace, so that works well. Our son is having trouble sleeping and was tired so he and I left early. I think he finally slept better last night.

Settling into Berlin

John and our son had trouble sleeping last night, but we still had a better day today. We went to the Brandenburg Gate and saw an interesting variety of memorials—to the slain Jews of Europe, to those who died trying to cross the Berlin wall, and to Soviet soldiers in World War II. The picture below shows John and our son at the Holocaust memorial.
Then John and our son headed back to the apartment and our daughter and I took a long walk in the Tiergarten, the downtown park.

John fell during their walk back to the apartment. He said he just caught his toe on a smooth pavement. He was very slightly scratched but otherwise fine, but it clearly scared him, with good reason. I don’t know if a walking stick would help him balance—he bought two hiking sticks some years ago and has said he found them very helpful for hiking, though I haven’t seen him use them much. The difficulty at present is that any problem happens so rarely.

John went to the supermarket and a wine store after going back to the apartment and then in the evening we all perked up enough to take the subway to a Turkish open air market. We got dinner in that area at a Greek restaurant, but even that was expensive. We are very glad we rented an apartment rather than staying at a hotel.

Berlin

I’m writing posts on my laptop to upload to Blogspot when I have an internet connection. I think when I post them I will back date them to when I wrote them, so don’t be surprised if suddenly several days of posts appear. The person who manages our apartment told us that the nearest internet café is a couple of kilometers away. Which surprises me, because we are in a fairly lively part of Berlin, just off a square called the Gendarmenmarket.

John and our son didn’t try to sleep much on our flight across the Atlantic, my daughter and I tried but were more frustrated because we didn’t succeed very well. We changed planes in Frankfurt and so got into Berlin about 3 pm. We took a taxi to our apartment, which is very satisfactory. Once we got our keys and put down our bags I wanted to go out and buy food, so that we could have supper in the apartment. We were tired and that seemed less of a strain than going to a restaurant, plus I wanted breakfast food for the morning as well.
The apartment manager told us where to get a transit pass, so we focused on that as something else we should do right away. I said to John that he should go get the transit passes and I would go buy food, which was in walking distance. I knew I would be frustrated with what he brought back if he went to the supermarket. And I didn’t want to figure out the subway system and ask the questions needed to buy the passes. That was my big mistake, letting him do something because I didn’t want to do it myself. I just didn’t think, didn’t step back from John’s tendency to focus on something and feel it has to be done immediately.

There were several choices— there are three day transit passes with museum discounts or a seven day group rate transit pass without the museum discount. It is also possible to purchase at museums a three day pass for admission to many different museums. John was going to a tourist information center so I told him what the different options were and assumed they would be able to tell him what would work best for us. But he didn’t ask, instead he just bought the three day passes because the seven day didn’t have museum discounts. They were very expensive, over $40 a person. I was frustrated when he got back because when they turned out to be that expensive I thought the seven day ones would have been the better deal.
John said “You need to tell me exactly what you want me to do.” I’m learning that lesson the hard way. The trouble is, when he goes off he says he can do it, it is only when he comes back not having kept it all straight that he says I should have told him what to do in more detail.

It may yet work out. We started out today at our highest-priority museum, the Pergamon museum, which it turns out both is within walking distance and doesn’t give the discount with the transit pass. The passes are good for three days starting when they are validated, and we didn’t validate them today. There is plenty to do within walking distance. So perhaps we didn’t need the seven days. We certainly didn’t have to buy the passes when we first arrived, considering that we didn’t use them today.

John did fine in the museum, in fact I brought our son back to the apartment around 4:30 pm when he got tired. John and our daughter finished out the Altes Museum and went to the numismatic collection as well. There was one more museum where our one-day passes were good, but we did well.

I seem to be the one who is the most tired, trying not to fall fully asleep while writing this. I pushed to eat supper in the apartment again—going to a restaurant seemed too stressful to me.

RECRUITING FOR DEMENTIA STUDIES:

"Studies of Thinking and Memory in Healthy Older Adults and Patients with Dementia."

Hi Pauline here.

I’ve been in touch with the Center for Translational Cognitive Neuroscience at Bedford VA Hospital, In Bedford, Mass. They do memory studies usually involving patients with different types of dementia and also require healthy older adults (65-85) to serve as controls. A typical experiment requires the participant to view a series of items, either pictures or words, on a computer screen, and then be tested on their memory for those items.

Regarding the need for LBD patients, they said they would potentially be interested in working with this group- in fact, they had had run a few studies a few years ago with LBD patients the recruitment sort of petered out so the study has been put it on hold for a while. A bit of work would have to be done to the experiments so that they could run on the laptops in use these days, but they said it would be worth the effort if they could get at least 5 or so willing LBD participants.

Usually the studies take between 1 and 2 hours, and there are 2 types of studies- EEG studies, where they record an EEG while the participant takes a memory test (compensated at $25/hour), and computer-based studies, which are run on laptops (and thus are very portable) and are compensated at $10/hour.

Right now the tests are only at that facility in the Boston area, but I’m going to talk to them about remote access…I mean all they need is an EEG and a laptop. I know these kids are computer savvy enough to figure it out. So for all the readers out there…here is an opportunity to get involved in the cure. Call Josh at 781-687-3360. Tell him you are interested in the studies on LBD. (And that you read about it here!) If you can talk him into using a local testing clinic in your area, then we as a small clutch here should be able to provide enough testing candidates.

Remember they want healthy older adults (65-85) also as controls, so if you are carrying your Lewy down for the tests, you might as well take them too.

You may visit their web page here.

Posting will be spotty

We leave this evening for Europe--a week in Berlin, one night in Dresden, and five days in Prague before returning to Berlin for one more night before flying back to Massachusetts. I hope to post occasionally during the trip but will not try to post every day while we are traveling.

We already had this trip planned before John was diagnosed, but it has become more important as an opportunity to do things as a family while we still can. We are renting apartments in Berlin and Prague, which I hope will make the trip less stressful. John has been doing very well the last few days, just occasionally strugging to try to do something like make a rental car reservation for our return (he wanted to check out something beyond what I had found but found only the same price).

We have already been away from home for a few days but in a familiar vacation house. I don't know whether in a new place he will be more disoriented or whether the excitement will inspire him.

retirement and disability

I thought John might do better once the semester was over (May 12) and he was no longer working, but it didn't get any better. He was busy moving out of his office and trying to clear out his home study. Now that we are on the first part of our trip he seems to be doing better.

When I first raised the possibility that he had Parkinson's, I asked him if that that was the case whether he would want to retire early so he could enjoy more of his retirement. He said he wasn't ready to think about that. Within a month he was talking about retiring on disability but continuing to teach one or two on-line courses. As we explored what disability payments he might be eligible for it became clear that it was better not to work at least the first year in order to qualify for disability. He also felt he got much worse the first month after diagnosis and then stabilized once he went on Sinement. So now he has given up on the idea of being able to teach on-line, though he does have a research project he wants to continue to try to do. I hope he will be able to enjoy working on that, whether he can complete it or not.

I found it surprisingly hard to find good information about the best tactics to take when applying for disability. John first filed for disability retirement from his job. He was a state employee and the state rules are that you are eligible for disability if you can no longer do your particular job, even if you can still do other kinds of work. He started the process of filing early, though it took a long time before all the paperwork went in. The personnel office told him it was ok to file while he was still working, that they understood that people held on longer than they should. The state disability pays him his retirement as if he had worked until 65, but he has less than 20 years in the system (28 years are needed for full retirement) so it isn't that much.

When he first was hired full time for the state he had signed up for private disability insurance (at that point it was with Traveler's insurance company). We had half forgotten about it but it was a deduction from his pay and was still in effect. We got the paperwork for that sent in just before we left on this trip. If that is approved it will pay him something like $600 a month until he is 65.

The next step will be to file for Social Security Disability, which would particularly help us because we have two kids still in school (one is 15, one turns 18 in June). The standard is stricter for Social Security Disability, you need to not be able to do any job. Our local neurologist said that it is easier to get with Parkinson's than with other disease and that he will support John's case. The Parkinson's specialist said expect to be turned down and have to get a lawyer. I've seen a number of people in on-line Parkinson's group say they got it the first try. Our lawyer recommended a lawyer who specializes in Social Security Disability and I may see if I can pay just to meet with him and get suggestions before we file for the first time. I don't want to hire the lawyer to do it from the start--we can do the first applicaiton and then if John is turned down maybe we give it over to a lawyer.

different

John says he just feels different, his body feels different than a year ago. I asked about carrying things up the stairs and he said that there were things he couldn't do helping our daughter move out of her room yesterday that he would have been able to do six months ago. It makes me sad. He is determined to make the most of his situation so he doesn't admit to grief. I am glad he is not depressed, but it is lonely to be mourning alone.