Who Am I?

I used to have a fairly clear idea of who I am. Always upbeat and involved in my community, my church, and my children’s school, and extracurricular activities. I led a very busy life. I was the first to volunteer or always be willing to offer help. A caring friend who wanted to make life joyful and full of laughter by contributing as much as I possibly could.

I was a brownie leader, member of county Girl Scout Council, Den mother, and Cub Scout Pack Treasurer, Religious education teacher, church council member, Story Hour volunteer, PTA committee member, class mother for both my children, kindergarten teacher and part time care giver to my mother in law and all in the same year!

My house was organized and relatively clean because as my husband often joked, I was rarely home. I still had plenty of energy and enjoyed every moment feeling as though I was making a difference. I loved the interaction with all the various people I came in contact with on a weekly basis. Even a diagnosis of Lupus didn’t slow me down often.

Parkinson's changed my lifestyle

However once I developed Orthostatic Tremor Syndrome and then was diagnosed with Parkinson’s everything suddenly changed. The overwhelming fatigue and physical limitations made it impossible to stay active. Already retired, I had become involved in our new community to a lesser degree. I had volunteered as a Book Buddy tutoring first graders who needed extra help with reading as well as being the Chair of our community's LMOA association and a library volunteer for the preschool story hour.

When the fatigue and physical side effects took over I was devastated. Not being able to fulfill my obligations was demoralizing. I felt that I had lost my sense of worth and purpose. I am sure I became less than pleasant to be around and started withdrawing from many social activities I had previously looked forward to. I had lost my positive demeanor and often did not want to even return phone calls.

We continued with our history and wine tasting groups although I sometimes had to cancel due to exhaustion, pain, or an off day. Some friends understood but others did not. As I lost mobility, often historical sites were not handicapped accessible and I could not participate. Many of the vineyards were also too difficult to maneuver. My new normal became hard to accept.

What could I do?

I became apathetic for a while and wondered what had happened to change my basic personality. I knew I had to find new opportunities to volunteer in some way to regain my self esteem. Since apathy is the enemy of living a fulfilling life I had to find other ways to volunteer that perhaps didn’t require as much physical involvement.

My first commitment was to an online support group where once a month I could share with other Parkinson’s patients. I also became active on the My Parkinson's Team site. It is more of a social community, but there is some information about symptoms and some informative articles as well.

One of the very best things for me was being welcomed into the Health Union community as a writer and moderator. Being able to possibly help others with Parkinson's is something I value and it has given me back the positive person I had been. I will always be grateful for this amazing group of people and all that they do.