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.