What It's Like Dealing With Ever-Changing Parkinson's Symptoms

It seems like there are about 100 symptoms you might encounter when you have Parkinson’s disease, and of course, everybody deals with a different set.

What is Parkinson’s Disease?

(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 a blog, parkingsuns.com, in 2015), I’m surprised that issues that irked me at one point (for example, bladder urgency) faded away after awhile, 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 constipation and 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!