Wendy
B.A.
B.P.H.E.
B. Ed
O.C.T.
sister, friend, neighbour
wife, mom, grandma
… and… someone with Lewy Body Dementia (probably … likely … it is what it is)
I carried on taking carbidopa/levodopa for 18 months before I got to see a neurologist. My family doctor – wisely – advised me to try that medication to see if it made a difference. He knew it would take over a year for me to get to a specialist. He also knew that I lived a full life carrying for our critters, being a grandma, loving kayaking, biking, hiking and outdoor adventures. It would be a LONG wait …
It did not take long for the medication to kick in. I was so relieved to have my legs back – and to not be constantly alert to falling. At first I had a real boost to my memory skills. I was able to remember ‘yesterday’. I was able to read fiction again – keeping track of the characters and the plot. I was able to play piano again. I wasn’t back to the full function of what I could do two years previous. But happy to have some brain power back.
After about six months of being on medication AND having moved to an apartment in the city I noticed my brain power slowly slipping again. I went back to keeping a calendar/journal to remind me of what had happened over the past day, or week, or month … I started to simplify the music I was learning and playing. I went back to reading non-fiction short articles. I was maintaining a number of websites with complicated databases and purchasing options. I developed a routine of keeping detailed notes on what I had worked on, when, and how to code my changes.
By the time I was able to have my first appointment with the neurologist I was back into difficult cognitive constraints. I had a few problems with my muscles and coordination when I was coming up to time for medication. I wasn’t very happy with my first appointment. I was not able to hold onto the track of our conversation. I left with the echo of a continuous question – “What came first? Your cognitive difficulties? Or your motor challenges?” He was very persistent in repeating this question.
In retrospect (almost 18 months and three appointments later) I can identify with his frustration. I went into the appointment alone. I somehow had an expectation that there would be some kind of medical test scheduled to find out if I had Parkinson’s Disease. I didn’t take any notes. I didn’t take any written questions. I think I pretty much wasted his time. Later, at my most recent appointment two months ago, I learned more about his approach. He was not able to ‘see’ motor symptoms of Parkinson’s because I was already on medication. He gets frustrated trying to help people in that scenario. At my last appointment I was in the ‘off’ phase of my levodopa schedule. My symptoms (motor and cognitive) were easily recognizable. He was almost giddy… I do quite like him now. I take notes with me to summarize my last six months and with a list of questions. I share with him what I have been reading and ask him if I am reading useful research.
I learned that his question of ‘What symptoms came first? Motor or cognitive?’ is important. Research shows that having cognitive symptoms first which are then joined by physical motor difficulties is indicative of Lewy Body Dementia (LB). I learned that my observations point to my biggest current challenges.
Those are difficulties with:
* needing two to three hours a day of afternoon sleep time as my brain ‘turns off’ and even holding my head up seems way too difficult
* easily sleeping 20 hours after busy days (e.g. cottaging, family reunions)
* finding some days I do not seem to ever fully wake up (I spend the day in a fog similar to what it would be like if I was awake and it was the middle of the night.)
* having distinct ‘on’ and ‘off’ periods of alertness (some parts of the day, or some entire days I feel pretty much like my normal self, other times I go hours or days feeling like a zombie)
* some days I can read music, some days not
* some days I can read fiction, some days not
* some days I can work on a writing project, some days definitely not
* I have given up my webpage projects as I cannot stay predictively focused enough to know what I am doing
* when I speak in an ‘off’ period my words slur and stutter
* I struggle with extreme APATHY on ‘off’ days
That all adds up to a likely prognosis of Lewy Body Dementia. I have danced around this for these past two and half years. Telling myself not to catastrophize. Urging myself to not borrow tomorrow’s problems. Reminding myself that the only true test is an autopsy … which I am not interested in. I have spoken with my neurologist openly and appreciate his honest answers. I know that none of us is given any guarantees in life. And I know that every day being alive and present – is SUCH a gift.
I also know that I like to ‘know’. I like having the information that will help me to plan now for my future. I want to know what to watch for. I want to know what kinds of things I can do to help my brain last as long as possible. For me that means researching, facing the prognosis now, and then getting on with my day. Whether that be a lively and involved day. Or a quiet, low key, low demands day. It is after all ‘a day’.
Part of facing the prognosis will be writing about my experiences. I am curious as to whether I will be able to note the changes. After all it is my mind watching my mind lose its way…
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