It seems that for as long as I can remember I have been having to step outside of my comfort zone in order to keep up with the ever-changing demands of today’s society. What are today’s norms, are yesterday’s extremes. Stepping out of the box and experiencing new concepts and understanding the perceptions and experiences of others has been extremely enlightening. Acceptance of these concepts is not required, however the freedom of getting along comes from the understanding of the differences all people bring to the table in today’s environment. Rodney King’s declaration of “can’t we all just get along?” rings loud.
Now, add the diagnosis of Parkinson’s and the knowledge that a degenerative condition will be tapping you on the shoulder the rest of your life, stepping outside the box becomes a whole new experience. Stepping outside the box is a metaphor that means to think differently, unconventionally, or from a new perspective. As a care partner to a person with Parkinson’s, I have needed to look at so much from a different perspective. Parkinson’s itself is a new experience and requires all involved to take on out of the norm thinking.
When the diagnosis comes most doctors will give you a pamphlet and a pill and tell you to come back in six months. This happened to us. The difference is that my PWP didn’t sit still. She began researching, looking for everything she could on what a diagnosis of Parkinson’s meant. This research brought out different diets which changed the way we ate and what we ate. She learned about the benefits of exercise. She participated in research on forced exercise and how it relieved the symptoms of PD. As a care partner my role was to support which included making my own changes. Getting out of the box as a care partner included being involved and participating in appointments and being involved in advocacy and research.
I would have never thought twenty years ago our lives would be where it is today. Just as every person with Parkinson’s is different every experience as a care partner is also different. Many similarities but mostly different. Traveling the road as a care partner with a PWP for me has been a roller coaster. When I stand back and look at it, I can say with honesty that it is a great ride. A true “E” ticket at Disneyland? Yes, maybe, but you know when your favorite ride is closed for repairs brings a few bumps in the road. Parkinson’s, it’s a love hate relationship. Get out of the box and find how you can create new experiences and discover that you are not alone.