Just before my Parkinson’s (PD) diagnosis the world was in the midst of the COVID crisis. This was a blessing in disguise for me. Sort of. It allowed me to refocus my time and energy to my adult kids who live with me. They are both on the Autism Spectrum. High -functioning, but in need of management in their daily lives. This was and still is all-consuming. My “Ordinary world” was and still is pretty much all about them and my changing role as their mother.

Forty years of my life has been spent working in theatre and film where I did production, management, special effects and more. In the immediate lead up to the COVID crisis, I managed a small space museum for five years. This was volunteer work, not my vocation, but I grew up very interested in space so I loved the time I spent at the museum. 

To be truthful,  I would do anything for my kids, but spending time at the museum was also an escape from them and my responsibilities at home. They are the most important people in my life. But when your “kids” are well past eighteen and are not “fully-cooked” it can really wear you down.  I could feel very oppressed by it all. You know the instructions on airplane flights telling you to put the mask on yourself first, then your children? That. That is what I was trying to do when I escaped to the museum. Get oxygen and some respite.

It is painful to admit that. But being a single parent of two neurodivergent teenagers (now in their 20’s), is very demanding. They needed and still need me to be their advocate and case manager. I have been managing all their finances, their day to day life needs and medical needs which have also been substantial due to other medical conditions they have. 

I have a desperate need for my life to be in order and make sure my kids have daily living skills down. It has plagued me to think about dying someday too soon before my kids are fully launched. It’s pretty much an obsession because both my parents died at age 65 and I am now 60. My own health issues, mainly Sjogren’s Syndrome and Fibromyalgia, have really interfered with my ability to manage our daily lives because of unpredictable pain and fatigue. Now add the diagnosis of Parkinson’s. I was not ignorant about Parkinson’s Disease (PD). I knew it was a lifelong degenerative disease. I knew enough to worry that it would dominate my life and change my ability to further help my kids. 

This worry is now ruling a large part of my existence and I need to get control of the situation. There’s no room in my life for any unforeseen problems. Getting my kids launched is daunting enough and fills out the schedule of my “Ordinary Life”.