Parkinson's Awareness Month 2021: COVID Edition
During an average week of advising people’s academic life journey, I encounter several people who have no idea what the road ahead looks like. If we really think about it, why would they?
When someone is young or taking an untraditional path, how will they magically learn how to navigate it without guidance?
Are we to assume that osmosis is enough to diffuse perfect clarity to the uninitiated? Nevertheless, when we mentor others, we create knowledge. This spotlighting is what Parkinson’s Awareness Month means to me as an advocate.
Sharing a road map
People who are new to Parkinson’s need a road map of what to expect. They need a guard dog to guide and protect them. You can be that person who helps others make a difference in this post-COVID Parkinson’s world we are set to inherit.
For example, some things are easy to fix. Take my anxiety over the flashing red light of voicemails. There is a need in our worlds for providing immediate satisfaction. However, if I’m helping X, I can’t help Y. Still, the light blinks.
Now, I just throw a cloth over it. I still answer it, but as soon as possible isn’t immediately. Hence, my Parkinson’s anxiety vanishes. What easy help hacks can you offer? How did you get through the tough stuff?
Telling your story
Since post-Avalanche Day 1, I knew that it was my responsibility to use my talents to assist people with their journey. When my neurologist confirmed my diagnosis, I began to tell my story.
Since that time, I have gained about 5 years of experience, knowledge, wisdom, and destinies. You, too, have gained much that can help others.
In my fifth Parkinson’s Awareness Month, I’m no longer as naïve to the jabs and kicks this condition throws at me. I’ve heard the voices of my fellow travelers. I feel the tears you cry, the loneliness that consumes you, and the pain you experience.
It would be nice to find a way to stop our suffering and go back to pre-Avalanche Day 1 or further, but yeah. Nothing is as it once was, nor will it ever be again. And yes, we had this knowledge before COVID lockdown and our future release.
Adjusting to reality
I’ve been thinking lately about Post-COVID Day 1. What will we have to show for our time? For my students, will they have grades to show for this? My wife has a beautiful garden to show for her time.
I read around a hundred books. Some people fixed up their houses. Other people made sourdough bread. An unlucky group of people will come out of this with depression and even PTSD symptoms.
Most of us have a bucket list in our heads, while the more obsessive of us scribbled one out on both sides of a piece of paper. That’s me, I’m that guy!
But here’s the thing: A lot of people will find that their bucket list isn’t grounded in reality. What happens then? If the reality doesn’t equal the real, then a ripple effect will occur. Are we prepared to help people adjust to this?
Awareness month tips
Thus, I ask you to think about 10 things as spring blooms, the vaccines are administered, and we give tulips and expression during Parkinson’s Awareness Month.
1. Enjoy the tulips!
2. Share your story. Tell someone your Parkinson’s awareness story. The more people empathize and understand, the better chance we “warp speed” neurological cures, too. Help direct others to foundations that make a difference.
3. Spread awareness. If there’s a local event for Parkinson’s awareness, find a way to be there. Take others with you. Be a force for positive change.
4. Get your vaccine! The most optimistic places in the world are clinics administering the cure to people who lived in fear for so long. I kid you not, I almost cried when I got mine. What’s more, I wasn’t the only one. The optimism is palpable and contagious! HOPE!
5. Find support. Parkies, caregivers, family, friends, and medical professionals all matter. If you know someone feeling down or you are feeling like you’re in a dark place, get help. Many people can help, even if you feel it’s only a case of “the blues.” Find someone. You deserve appreciation. If you want to make an OK person even better, do or say something nice for them.
6. Start a project. You have time until the masks come off and social distancing vanishes. Now is as good a time as any to start a project, read a book, walk on a treadmill, or master something. Life is more than Facebook, video games, and TV binging, even if those are fun, too. Then again, our website features many activities for people in different stages of Parkinson’s. Why not try some?
7. Encourage others. If you’re on Facebook, why not share words of encouragement or care emojis to people going through rough times. Even being a keyboard warrior can show people they matter in tough times.
8. Connect with people. Reach out to people via phone or Zoom to say hello. Think about something that you can do when it’s safe to be together again. Make some good plans, even if it’s only time together at a restaurant.
9. Create positive change. Just like with Parkinson’s, COVID created a new normal. The past isn’t coming back, but we can have a positive future. What can you add to this?
10. Be yourself. Remind people that Parkinson’s isn’t a month or a day. We live this 24/7. That said, people need to know about our permanent housemate. Find ways to allow yourself to “just be you". Sometimes it’s about not discussing the elephant. Other times it’s about pushing through the fatigue to be active.
I know it’s not easy, but we can help each other get there. I believe in all of you and thank you for all you do for Parkinson’s world.
Do you live with any sleep disorders (eg. insomnia, RLS, sleep apnea) in addition to PD?