“Life isn’t easy”: how coronavirus is affecting women with Parkinson’s An edited version of this post appeared in Parkinson’s Life today.

One of the first things that I noticed after being “sheltered at home” was that not having a daily schedule disrupted my exercise routine.  As a person with Parkinson’s, that had a greater effect on how I felt than anything else.  Some of my symptoms got worse.  I wasn’t sleeping well and within a few weeks, the days started blending together.  Some days I woke up and literally did not know what day it was.  

Eventually I was exercising more than before

As the weeks went on, and through the magic of Zoom, my boxing for Parkinson’s class and my yoga classes were meeting in the virtual world,.  Eventually I was exercising more than I had been and my endurance increased. 

But, though it did help, Zoom is not a complete substitute personal interaction. I miss being with other people, going to the gym, dinners out and going to movies and theater, my manicures, haircuts, shopping, and all of the things that I do with my friends and family.  Classes and meetings on Zoom are great, but it is not the same as being together. 

We have been reading to our grandchildren through video chatting

There are a few really good things that have happened because of Covid-19.  We have been reading to our grandchildren through video chatting and have even played games with them.  A quick on line search will show you many free resources such as the one shown here. We may not be able to hug them, but we can have some special times with our grandchildren.  We have also had family video chats where our grandchildren in Los Angeles and Chicago have been able to see and talk to each other.  These activities help reduce the anxiety of isolation, of being cooped up at home.

Younger women (and men) who may be working remotely from home now, and not just those with Parkinson’s, now have the additional burden of balancing work and taking care of their family full-time.  It is a lot to bear. When working at home, it is difficult to do their job, while also making sure their children are doing their schoolwork, or are otherwise occupied and cared for. It can be overwhelming.   There is precious little time to take care of themselves, increasing  stress levels that affect how they feel each day. 

A big thing that I and others find missing is the ability to reach out to other women with PD.  With the stay-at-home isolation, we have lost our personal connection to others with PD.  It has been shown that women, more than men, really need the support of their PD peer group.  We go to support groups to make connections with other women.  The support for one another in our community is tremendous.

 Sunday Mornings with Twitchy Women

Here, too, while we can’t get together physically, we can find  find partial substitutes in the virtual world.. In that spirit, we took the non-traditional local support group that I had been running and made it available women with Parkinson’s literally everywhere;  in March we started   Sunday Mornings with Twitchy Women  to reach out to women with Parkisons around the world.  We meet every other Sunday morning at 10:00 Pacific Time for about an hour, with a different speaker/topic each session.  The feedback has been very positive.  It is helping  women fill a need to talk to others with PD AND giving them a respite from some of the stress brought on by the Pandemic.  It’s not the same as getting together physically, but it goes a long way towards making us feel better.

Sunday Mornings with Twitchy Women can be found at https://twitchywoman.com/events/