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
I live my life on “high alert,” waiting for the next Parkinson’s disease symptom to blind side me. Most recently, the culprit was “freezing of gait” (FOG). One minute my walker and I were moving in concert up and down the aisles of a big box store; the next, my feet suddenly stopped moving forward, despite my obvious desire to keep walking. It was as if they were glued to the ground.
Standing like a statue, my hands tightly gripping my walker, I felt invisible. How else could I explain why other shoppers zip around me without so much as an “Excuse me,” let alone an offer of help? Admittedly, I brought this situation on myself by insisting on navigating the store using my walker rather than one of the battery-powered scooters available to shoppers who need them. I thought it was a good opportunity to test my endurance, but failed miserably – freezing after completing only two aisles. No matter how hard I pushed, pulled and swore, I could not get my feet “unstuck.”
Thankfully, my husband, Tony, was only a few aisles ahead of me. I phoned him to explain my situation and ask him to bring me an electric scooter so I could make my way through the store and out to our car. Never knowing when my body might breakdown is what keeps me from venturing out alone, and that’s a good thing.
My freezing episodes tend to occur during “off times” when my body needs more carbidopa/levodopa to keep moving. They often are brought on by specific situations like when I start walking, step through a doorway, attempt to turn a corner, and approach a chair to sit down. Depending on where these episodes occur, how long they last, and the end result, freezing can be frustrating, annoying, embarrassing, and disabling, as it often precipitates a fall leading to serious injury.
A common symptom in advanced Parkinson’s, FOG is related to many contributing factors, including longer disease duration, more severe disability, levodopa treatment, and urinary and cardiovascular symptoms. As scary as these episodes are, there are many ways to manage FOG including adjusting your medications, using tools like sensory cueing, and using a walking aid. At a minimum, wearing supportive, well-fitting shoes with a closed toe and heel will keep our feet from sliding around inside our shoes and our toes from curling under. The best long-term treatment option for Parkinson’s freezing is non-pharmaceutical and non-invasive. Its focus is on working with a Parkinson’s physical therapist to retrain your brain.
Do not allow this symptom to diminish your mobility, independence and quality of life — convincing us to withdraw from activities that give us pleasure and instead remain at home where we feel “safe.” Speak to your neurologist or physical therapist to see how they can help you learn strategies for getting “unstuck” and better managing freezing episodes.
As always, a great blog. Certainly a nightmare for you to have to experience, but you share it in a way that is inspirational for those who don’t have the strong mindset you have to withstand these challenges. It is one of many things that makes you so special.
Love you dearly, your my inspiration!
Thanks for being there for us “shake, rattle and rollers” I am newly diagnosed. …..4 weeks ago..have read your book….thanks, Nancy