Dancing in the Rain: Lessons Learned on my Personal Journey with PD (more at www.PDPlan4Life.com) Copyright 2013-20 Sheryl Jedlinski
By Shery Jedlinski
I went for a physical therapy (PT) evaluation seeking confirmation that the long-term gains I achieved through daily exercise were disappearing. How else could I explain why everything takes me so much longer to do and I feel like I accomplish less and less in a day?
Much to my surprise, my evaluation results revealed that not only have I not declined, I have actually improved in every area but one when compared to my results on the same tests administered two years ago by the same therapist. In a few categories, I exceeded average scores for healthy women my age.
“You even look better than I’ve seen you look in years,” my therapist told me.
Why then, if I am more able, am I not more productive? Have I gone from being an overachiever to an underachiever? Am I completely out of touch with the reality of my condition? Or, is there more to the story than meets the eye?
In this situation, the fluctuating effectiveness of levodopa to control PD symptoms is significant. Over time, it wears off more and more quickly, triggering an “on-off” phenomenon that erodes our precious “on” periods, when our meds work best and we function most normally. “Off’ periods now may last several hours at a time, focusing my attention on what I can’t do, rather than what I can. I go from normal movements to freezing gait with no warning, like a light switch with only “on” and “off” positions.
During my last PT evaluation two years ago, my daily “off” episodes were far fewer and shorter than they are now, and did not interfere much with what I wanted to do. I got around without assistive mobility devices, until I experienced several falls and opted for walking sticks. That held me until last month, when I traded my signature sticks for a rollator walker.
Having to use a walker to negotiate my own house is hardly my idea of a good time. Without it, however, I know that I couldn’t do even half the things I do now. Through PT, I’ve learned that using a walker is not in and of itself enough to increase my stability and reduce my fall risk. I constantly work at improving my technique — keeping my feet under the seat, staying inside rather than trailing behind the walker, and holding onto the hand brakes. My long-term commitment to daily exercise has enablied me to maintain the strength, endurance, and flexibility to take advantage of how the walker can help me minimize the negative impact of “off” periods.
Going forward, my therapist will develop an individualized treatment plan to help me stay as active and independent as possible, and help make “off” times work for me by:
I welcome any and all tips that will get me through my challenges during “on” and “off” times.