7/8/24
My Recent Absence: A Brief Explanation
It’s been a while since my last post. Here’s a brief list of reasons for my absence:
1. Deteriorating Touch Typing: My left hand has little control over key presses, often holding down keys inappropriately or not pressing hard enough for the computer to respond. I’ve resorted to ‘hunt and peck’ typing with my right hand, making writing a chore. Please excuse any typos.
2. Lack of Positive News: My Parkinson’s has progressed much faster than anticipated, resulting in a loss of energy. I’m doing less overall, including writing.
3. Website Maintenance Challenges: Maintaining a website can be burdensome. I greatly admire those who post regularly, even if it’s just once a month.
I can’t promise the situation will improve, but I wanted to provide an update on my condition.
Tracking My Symptoms
Frank C. Church, PhD, hosts an excellent website (Journey with Parkinson’s) that deals with the disorder. Among many valuable suggestions, he recommends that sufferers keep an ongoing record of their symptoms. I’ve expanded on this idea:
– I’ve created a spreadsheet listing my symptoms.
– Each symptom is assigned a value from 0 (no problem) to 5 (pretty awful).
– I update it approximately every week.
– I sum all the values and graph the results to track progression over time.
This method has been helpful in monitoring my condition and providing data for discussions with my healthcare providers. Here’s a snapshot of the latest update.
The symptoms listed in blue at the left are the ones that are supposed to respond to carbidopa/levodopa. However, for what ever reason – as is evident from the spreadsheet – I’m seeing no improvement in these, or any other symptoms. That’s unusual, but not unprecedented. My neurologist recommended that I try a dopamine agonist- ropinirole – and I’ve been on that for a month. But it too seems to have no effect.
One neurologist that I talked to suggested that sometimes these drugs don’t get from the gut into the blood stream. There is a medication – a patch – that might solve that problem, if indeed that’s why the drugs aren’t working, I’m going to try it and will post the results.