It seems like there are about a hundred symptoms you might encounter when you have Parkinson’s disease, and of course, everybody deals with a different set. (Did you know that Parkies are at increased risk for dandruff?)
When I look back at what I’ve been through (I was diagnosed in 2012 and started keeping track of my experiences in this blog in 2015), I’m surprised that issues that irked me at one point (for example, bladder urgency) faded away after a while, only to be replaced by some other problem (e.g., insomnia). I typically find a way to deal with the new challenge so it’s no longer an issue, but then another arises to take its place, and usually, I must find a way to deal with that. I call it the Whack-a-Mole method of disease management.
For example, drooling. In the spring of 2015, drooling was a bothersome symptom for me. I’d wake up in the morning with an utterly drenched pillow. I blogged about it and invented a lot of jokes. For example: “My husband now says that sleeping in the same bed with me is drool and unusual punishment.” Another: California was going through a drought at the time, and people were unable to water their lawns. I blogged that if someone would pay my airfare from New York, I’d volunteer to sleep face down on their lawn and nurse it back to life.
Yet within a few months, drooling stopped being a pitfall for me. I haven’t had any drooling incidents for years. (Note: this was one situation where I didn’t do anything to stop drooling; the problem either went away on its own, or it might have been fixed by a change in my medicine.)
Insomnia proved a difficult dilemma to overcome. Some 90% of people with Parkinson’s suffer from one form of insomnia or another. In my case, I’d wake up at 2:00 a.m., famished, full of energy, and unable to sleep the rest of the night. My solution was two-fold: (1) regularly work out with heavy weights at the gym, to make my body tired; and (2) eat a healthy, substantial meal before going to bed: usually grilled chicken breast and lots of raw vegetables, both of which take my stomach a long time to digest. No alcohol (drat!) and no starches like pasta or potatoes, because they give you an energy boost a few hours after you eat them, which you don’t want in the middle of the night.
I am happy to report that these days I look forward to going to bed. I sleep soundly and wake up in a good mood. Getting out of bed in the morning with an upbeat attitude signals for me that I am happy with my life.
Dry mouth, an under-reported Parkinson’s symptom, affected me early on, but was easy to counter: just have a bottle or thermos of water with you to keep the pipes lubricated. For added benefit, squeeze some lemon or lime into the water container, or add slices of cucumber.
I also experienced constipation once. This was a major event that lasted a week. I got out of that by adding ground-up flax seeds to my morning cereal, and now constipation is a thing of the past. (As usual, I invented a lot of jokes when I was dealing with this [fecal] matter, and I posted them on my blog. Here’s one: What do New Yorkers call a bird that poops on you as it flies overhead? A stool pigeon.)
Thus I’ve worked my way through a lot of symptoms in my Parkie life, and I feel that I have the upper hand. My current challenge concerns my gait. These days when I wake up in the morning, I stumble about with a festinating gate until my meds kick in. This was fine until last week, when we replaced the tiles on the floor of the master bathroom. The white, faux-marble sill on the door separating the bathroom from the bedroom is now over an inch higher than it was before; it practically looms over the bedroom carpet next to it, looking like the Wall in the Game of Thrones. In my pre-dawn, festinating-gait daze, I trip and stumble when my scuffling slippers collide with the new sill in the doorway. But I know I can fix this. I just have to be more conscious when I climb out of bed, and I must walk like a normal human being – that is, walk as I used to walk before the multi-fingered calamity known as Parkinson’s disease set up shop in my noggin.
What new symptom will strike me next? I don’t know. I feel the whole process is like a drama series on Netflix. Tune in next week!
