On Monday, June 1 Marcia and I went to NYC to meet with Dr. Honig, her neurologist. We usually go every 3-4 months, but it’s been about 5 since our last visit as our April appointment had to be moved. For the last several appointments, we’ve had discussions about Marcia’s medications. Are they still the right medications, is the dosage correct, etc….What I’m finding out with AD is much of what Marcia takes is really trial and error choices. In November, we started on a drug called Keppra, which is meant to control the seizures that hospitalized her last October. Apparently it works great as I forgot to give Marcia her ½ pill evening dose the night before her appointment. Monday morning she had several of the myoclonic tics that plagued her over the last two years. These “tics” are not serious, but on this morning, it made it very difficult for her to take her medication and I had not seen them with this frequency or severity since the morning of her seizures. Thankfully, about 20 minutes after she took her pills, the “tics” stopped. Dr. Honig said it’s pretty clear the medication works.
Dr. Honig then did the normal physical examination, including asking her several questions. He and I both think she generally knows what she wants to say and knows the answer to his questions. She just cannot articulate them. Marcia can’t really say anything more than a one word answer and that word is more often than not, unrecognizable. This was not a surprise to me as I’ve seen the steady degradation in her communication skills. However, he noticed two things that were different, or had changed since our last visit. First, he noticed an asymmetry to her walk. Marcia’s left arm and right arm did not move with the same rhythm or motion and her walk was not as fluid as it had been. He also noticed more stiffness in her muscles. After looking at the lab reports from her spinal tap in 2010 in conjunction with these physical changes, Dr. Honig said he believes she has Lewy Body Dementia (LBD) in addition to Alzheimer’s (and Primary Progressive Aphasia).
I’ve read up on LBD over the last week or so, and frankly I’m not sure what to think. Everything about these neurological diseases are mostly hypotheses. We will never know for sure what Marcia has until her brain can be examined under a microscope. Not everyone has all the symptoms used to describe these diseases and they can show up differently in each person. I sort of feel it’s up to me to draw my own conclusions. I joined an Early Onset Facebook support group a few weeks ago (1500 members), and it’s pretty clear, based on what others post and comment on, that I’m not the only one who feels like we are making our own diagnoses or would like to know more definitively what our spouses, parents, siblings are suffering from.
LBD is hard to diagnose in the early stages as it looks a lot like Alzheimer’s in that there progressive cognitive declines. But LBD also has Parkinson’s-like symptoms related to motor skilss, like slowness of movement, difficulty walking and lists “runny nose” as a common feature. Marcia does have these physical challenges that aren’t easy to describe by AD alone, and we go through a LOT of tissues. But hallucinations, violent behavior and depression are often used to describe LBD, and Marcia doesn’t have these symptoms. Like AD, LBD is caused by a build-up of proteins in the brain, just a different protein leading to a different spectrum of disorder. Dr. Honig says people with AD can have LBD, and people with Parkinson’s are known to have LBD too.
So what does this mean? Like AD and PPA, there is no cure for Lewy Body dementia and it’s progressive. There are medications to help control LBD, but they have some potentially significant side effects. My guess is that it just means that language, cognition and now motor skills will all continue to decline, and there’s nothing we can do to stop it.