I don’t know about you, but all too often I find myself saying the phrase “best laid plans” in my head as I consider what I had planned for the day, versus the way it unfolded. Living with a movement disorder can often generate a ride of unexpected twists and turns for not only the person with the movement disorder, but care partners and adult children. Our best laid plans for a day of shopping may turn out to be a day where the medication is just not working as well, or the pain seems to have found a new decibel to ring in the body.
The reality is, as I am learning as I get older, there are things we can control and some things we cannot. But here’s the thing: even as we navigate the unexpected that can come up with a movement disorder, there are a few simple tools that never seem to fail:
Prepare but don’t over prepare. A simple list of no more than three things to accomplish at a time takes an overwhelming day and translates it into something doable. The list may have 30 things, but when I literally break it into chunks of three, I find I can breathe again and face the tasks head on.
Meaningful and intentional connection with someone reminds me that above all I am not alone in this world. Some days the connection can be with a loved one, some days it is eye contact with a stranger accompanied with a genuine inquiry about how their day is going.
Asking for help is a sign of strength and confidence, not weakness. Even the Little Engine That Could needed a little pick me up. Whether it is navigating the cognitive changes that can accompany a movement disorder or being a care partner looking at the ever growing to-do list, securing help in organizing the space around us can generate comfort and clarity.
There are many tools we can use to navigate the journey we are on. At PMD Alliance, we are right here with you, on this journey. We too experience the challenges of everyday life, and learn with you. Sharing with you the highs and lows, we offer expertise in a practical, honest and transparent manner. Life is not always what we plan. I’ve found using these few simple ideas can help transform the toughest days into a bite size tasty nugget that manages to leave me feeling satisfied.
Sarah Jones, MPA, MS Strategic Design
CEO, PMD Alliance