Dancing in the Rain: Lessons Learned on my Personal Journey with PD (more at www.PDPlan4Life.com) Copyright 2013-20 Sheryl Jedlinski
By Sheryl Jedlinski
Living with Parkinson’s disease (PD) has taught me many life lessons, including the importance of having a plan for every eventuality… like what to do when my meds wear off prematurely. This paid off big time on a recent shopping expedition with a longtime friend. Halfway through one level of a large mall, my feet started cramping and I could walk no further, not even with the aid of my walking sticks. Jenny suggested we sit for a bit, which I gladly did. Concerned about my health, she asked if this happened often, and whether my PD was getting worse. “It is a progressive, incurable disease,” I wanted to say. “By definition, it gets worse over time, not better.” Instead, I brushed it off as no big deal, which we both know is not true, as I allow nothing to interfere with my shopping.
Jenny wanted to call mall security and have them bring a wheelchair for me, but I refused. “This is my mall,” I explained firmly. “I’ve shopped here since it opened almost 40 years ago, and I know every inch of it like the back of my hand. I come here when I am happy and I come when I am sad, but always on my own terms. Leaving in a wheelchair is not one of them.”
Jenny nodded, knowing this was not the time to challenge me. I stood up and walked a little further until my feet began to cramp again. At this rate, we would be lucky to get back to Jenny’s car in time for breakfast. Fortunately, after the last time this happened to me, my doctor outlined a “rescue” plan to get more meds into my system and working as quickly as possible. Now was the time to activate the plan. I chewed an additional PD pill, washed it down with lots of water, and sat for 15 minutes. Meanwhile, Jenny stood beside me looking sad, grieving for my losses and upset that I hadn’t kept her up to date on my condition. It was precisely to protect her, I explained, that I hid the sordid details of my illness, reserving this level of sharing for friends who also have PD.
The bottom line is that 18 years into my journey with PD I still have many more good days than bad, and the good ones are better than the bad ones are bad. My meds control my PD symptoms well enough that I can do the things that make me happy and live a fairly normal life.
If you are having difficulties with your medicine wearing off too soon, or experiencing other problematic symptoms or side effects, let your doctor know. There are many adjustments that can be made to our daily drug regimens based on our unique needs.