Parkinson's specialist

The Movement Disorder Specialist we saw in Charleston has moved to Washington DC to work for the FDA, so John's local neurologist recommended a specialist in Atlanta, which is a lot closer. We saw him yesterday and were not happy with him.

It was an interesting experience for me because the doctor was taking the approach that John's Parkinsonism was mild and he didn't yet show all the signs of Lewy Body Dementia. John's response was to argue with the doctor that he is more impaired than the doctor realized (John had been working on his Social Security Disability appeal so he had been thinking in those terms). For me, having John acknowledge what I'm finding hard outweighed having the doctor ignore it. The doctor just didn't seem to be interested in subjective experience, only in the measurable symptoms. He made a big deal of how smart John was (having read the neuropsych testing report from May) as if he didn't expect to see Parkinson's patients who are smart. I finally said if John was 80 we would think he was doing great but this isn't what we expected at 63.

At the beginning of the appointment a nurse took John's vital signs and medication information and then sent him back to the waiting room. The doctor himself came out to the waiting room to get John and introduced himself to John. But the odd thing was that the doctor didn't acknowledge my existence when I got up and walked with John. Initially when he asked John questions I didn't speak up because I thought it important for him to see where John got confused. But he never did ask me for my perspective, though I did start giving it anyway.

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.

Neuropsychological testing

I guess that neuropsych testing isn't very reliable on college professor types. John's memory has always been bad and has gotten significantly worse in ways that really worry me. But in the testing he scored high average in new verbal memory and superior in new visual memory. The only thing he scored impaired on was basic spatial. He scored superior on higher language, average to low average on attention. His results were very randomly scattered from average to superior, but ADD testing from more than 10 years ago makes it clear that he was that way then too.

After the psychologist presented the results to us, I burst into tears and said: "Then why have I had to take over all the planning and organizing?" We talked about some examples and she said she could see it is frustrating for me, I should try to remember that John can't help it, it is the disease. I said "these test results seem to say he can help it." She said "No, no, no,..." without really explaining how she reconciled the test results and our experience (John was supporting me that it has gotten significantly worse in the last year). In part the psychologist was saying that he already had problems functioning in the areas I am frustrated about so it didn't have to get much worse to be a big problem. But the tests don't even show those problems he already had.

I guess I think he outsmarted the tests. Or perhaps it is an example of the fluctuations that are characteristic of Lewy Body Dementia or the phenomenon I have seen called "show time" when the person with LBD can rise to the occasion and look good in the doctor's office or for company when usually they are a mess. John presented himself as sociable and having a good support network when I see him increasingly isolating himself except for three friends and me.
Marc asked in the comments how John was diagnosed. Very much just by the clinical judgment of the doctor--clear Parkinson's symptoms plus REM sleep behavior disorder. John reported episodes of confusion, I reported difficulty with complex tasks, and in the doctor's office that day he couldn't spell a four letter word backwards. Is it dementia at this point? Not the way the term is casually used, but if dementia is defined as cognitive impairments that interfere with social or occupational functioning then it is--John could barely keep up his job through the end of the semester. Is it Lewy Body? He definitely has Parkinson's symptoms as well as REM sleep disorder and increasing problems with memory, organizing, and planning, so even if some doctors wouldn't diagnose it yet it is headed in that direction.

I'm very upset about the testing--even now the next morning the tears come up in my eyes when I think about it. I feel like the objective tests say everything is fine, when my experience is that we no longer have a partnership, I am now having to be a caregiver. I'm having to do all the thinking and planning and organizing for us as a family and for John with doctors. I'm afraid of being accused of overreacting. I'm afraid no one will believe me because the tests show something different. Not being believed is a particularly sore point for me. More practically, I had hoped the doctor would prescribe Alzheimer's medication that would help, but since he wanted the test results first will he decide medication is not needed based on these test results?

The other thing that upsets me is that every strategy the psychologist suggested was something I have tried to get John to do for years with no success. He won't make lists of things that need to be done. She told him that no way should he be walking around the house trying to get things done while listening to books on tape or All Things Considered on headphones, that he can't multitask. The only compromise I've ever been able to get him to make on that is to turn it off when I come into the room. We didn't talk today about sleep but that is another area where he has terrible habits he has been unwilling to change--these days when I get up at 5 am to go swimming I usually find him asleep sitting upright in a kitchen chair in front of his computer (never having come to bed). The sleep doctor is going to get an earful from me in July.

realizing something was wrong

Pam here, starting the process of telling the story of our journey with Lewy Body Dementia.

Last fall I was getting more and more frustrated with my husband John. He messed up some travel plans. Our daughter had gone away to school, leaving us with an empty nest, and he never seemed to suggest making plans to go out to dinner or take a hike. I was eager to clean up the chaos in our house now that we had more time. I made progress with my part but he kept not getting to his part and and telling me I needed to give him more time. He seemed to be moving more and more slowly. He even ate slowly. I would get frustrated by how long it took him to buckle his seatbelt and start the car. He thought I was really unreasonable to complain about that, and he had a point.

We made a quick trip to Massachusetts in January and stayed with my mother. She commented that John shuffled--she was worried he would trip because he didn't pick up his feet. I said he seems to be uncertain about his balance, but even then I didn't focus on it as a problem that we needed to talk to a doctor about. As he said, he had always been slow and disorganized.

The turning point came when I said something to my therapist about John eating slowly. I said his hands moved as if he was suppressing a tremor (though he didn't have one at that point). My therapist remembered my mentioning my mother's comment about John shuffling and put two and two together and asked if I had thought about Parkinson's Disease. I said I thought I was pretty knowledgeable about neurological diseases as one grandfather died of ALS. (I'm afraid I'm a terrible know-it-all.) But I did go home and look up Parkinson's on the internet, and I was stunned. I had no idea that about a third of the time Parkinson's doesn't start with a tremor. Slow movement was exactly what John had. And he had been struggling for nine months with a frozen shoulder, though he attributed it to a fall in the bathtub.

The problem was, he had prostate surgery scheduled in two weeks. How could I bring up something so difficult when he was already facing scary surgery (just laser removal of the enlarged part of the prostate, but that was plenty)? So I decided I shouldn't say anything until after he had recovered from the surgery. I started reading about Parkinson's, and I began to worry in particular that John had many of the symptoms that predicted people more likely to get dementia.

But then about a week before the prostate surgery we were out for the evening and he said something about being worried about his balance. I said I had some thoughts about that but he probably didn't want to hear them until after the surgery was over. He thought about it and when we were driving home he said he did want to hear. I said I thought he fit the symptoms of Parkinson's. I started telling him a list of symptoms, and when I said "only swings one arm when walking" he said "Bingo!"

He had an appointment the next week with his family practitioner so I went with him. We listed symptoms and the doctor examined him carefully. The doctor asked us if we had a theory and we said Parkinson's. The doctor said he would schedule an MRI to rule out other things it could be, but those were less likely. And somehow he got John an appointment with the neurologist in our small town the next day!

I was hoping to get clearer information before our kids came home for spring break, but I didn't expect an instant diagnosis. But we got one--the neurologist said to John: "You definitely have Parkinson's disease." I thought I already knew that, but to have the doctor say it hit me hard. The doctor said he sends all his Parkinson's patients to an academic medical center for further evaluation. John didn't have time to think about much but his job, trying to finish up his semester of teaching when everything took him twice as long. I had a full time job as well, but I was obsessed with wanting to learn more, since that gives me some feeling of control. I did a lot of research on Parkinson's, and I joined the Yahoo groups both for Parkinson's Caregivers and LBD Caring Spouses.

It took a while to get the appointment with the specialist set up, a little over a month later we went to see Dr. Bergmann at the Medical University of South Carolina. Driving down to Charleston the day before, John and I talked about Parkinson's but also specifically about Lewy Body Dementia. I explained to him that when people hear dementia they think Alzheimer's but dementia is a broad term for any cognitive problem that interferes with daily activities and can look quite different depending on what kinds of thinking are affected. I said I saw him having problems with executive function, with organizing and planning. He has always been weak in those areas, but I was beginning to be able to separate out in my mind that it was getting worse.

Dr. Bergmann asked lots of questions and he looked at the MRI, which John had brought on a CD. John talked about the physical symptoms, but I also talked about his crying out in his dreams every night and about my having to take over travel planning. Dr. Bergmann asked John to spell the word "world" and John did. He then said: "now backwards." John started: B-A-C-K-W, and then the doctor explained that he meant to spell "world" backwards. John couldn't do it. Dr. Bergman tried him on a four letter word and he couldn't do it even with several tries.

Dr. Bergmann said to John that he definitely had Parkinsonism, but the question was which form. He said the symptoms weren't conclusive yet, but in his clinical judgment John had a form of Parkinson's with dementia. I asked how that related to Lewy Body Dementia. He said that is the formal name for it. He recommended the Lewy Body Dementia Association Web Site but he said that some of the information, such as the life expectancy of 6 to 7 years, reflected a group of patients diagnosed further along in the process. Again, I thought I already knew that it was going to be Lewy Body Dementia but it still came as a terrible shock to have a doctor say it.