I apologize for the decline in blog posts over these past few weeks. Right now, my time is not my own. I've been helping taking care of my mother who has a progressive brain disease called Lewy Body Disease (LBD). If you are like most, you've never heard of LBD. Although the pathology of the disease is different, it is easiest to describe the disease as a combination of Alzheimer's and Parkinson's. Even though she is not in the end stages of the disease, she does require around the clock care and help with daily living activities.
Two weeks ago, my mother had shoulder surgery to remove bone spurs. She had this same surgery a year ago on the other shoulder, so I was well aware of what to expect the days after the surgery. However, her disease has progressed significantly since last year and I expected things to be a little more challenging. To help my dad out, I invited my parents to come stay with us.
The day's post surgery were quite interesting, to say the least. My mom's delicate brain is highly effected by pain medication, couple that with her lack of coping skills and general confusion and she was incapable of doing anything for herself. Prior to the surgery, the small things she could do with just a little help, like getting on her pajamas, going to the bathroom or holding a glass of water, she couldn't do at all. We made it through the week and she is now off the heavy pain medication and back to her normal confused self.
This week and next week we are travelling back and forth to the Mayo Clinic several times for my mother's annual research appointments. When she was first diagnosed with the disease, she was asked to take part in the only research study of live patients with LBD. Historically, diagnosis of LBD was only done after someone had deceased and an autopsy performed on their brain. Because the symptoms mimic those of Alzheimer's and Parkinson's, usually, people with LBD are misdiagnosed. My mom actually had a brain biopsy performed which was necessary to make the diagnosis. As part of the on going, research she agreed to annual neuropsychological testing, as well as three different scans of her brain, an MRI, PET and a new experimental research scan called a DAT scan.
Yesterday was the first of four appointments at the Mayo, starting with an MRI in the morning and then neuro-psychological testing in the afternoon. I remembered from last year, the first thing they ask (my mom) when checking in for all of the appointments, is to recall your full name and birth date. Last year, she had difficulty with this, so I decided we should practice in the car. I asked my mom, “what is your birth date”? There was silence. So I asked again, and she said, “October.” I prodded a little more for the date and year, and although she was trying to think of it, she did not remember. My dad and I coached her and had her recite her birthday several times and then she said she didn't want to, “wear it out.” I also had her practice saying her full name, as last year, she recalled her maiden name not her married name.
Upon checking in for her MRI, just as I remembered, they asked my mom her full name and birth date. Before recalling the information she introduced me as her sister (which she has done in the past). I think she was stalling, but the nurse prompted again. She said her first name and her birth date, correctly, but did not say her middle or last name. That was good enough for the nice nurse this time. After the MRI was done we had a bit of a break and then my mom had her neuro-psychological testing while my dad and I had a family interview.
The day ended rather emotionally as my mom was asked to both print and sign her name on three consent forms. This activity is extremely challenging for her. It is quite amazing actually to watch her attempt to write her own name, something she has done countless times. To help her, I printed and signed her name on a post-it note for her to copy. The first attempt was better than expected, she misspelled both her first and last name, but it was mostly legible. The second attempt was a little worse than the first, although you could make out her name somewhat. The third attempt, was unbelievable, when she went to print her name she spelled it Aaetwatl, her first name is Sharon. As she often does when a task is hard, she started to cry and gave up. We let her take a break, while my dad signed a few forms and then I held her hand and helped her sign her name one last time.
We return to the Mayo on Thursday for the DAT scan, then Monday is the PET scan and Tuesday we meet with her neurologist to discuss the results of the testing.