Over Twenty Years in My Parkinson’s Care Partner Journey
My name is Angela Robb and I met my husband who has young onset Parkinson’s disease in 1995. I actually didn’t meet my future husband face to face but met him in an America Online (AOL) chat room! Karl sent me an Instant Message and made me laugh. Over the next two weeks, we chatted online and spoke on the phone getting to know one another. During one of these phone calls, Karl disclosed that he had young onset Parkinson’s disease. I had heard of Parkinson’s during my high school human anatomy course. The thing that struck me was that Karl was so young! My course had only mentioned that Parkinson’s affected older people. Karl’s revelation was curious to me but didn’t stop me from wanting to meet him face to face.
From digital to personal
Our first date went well and I distinctly remember his smile, laugh, and passion for life. The only hint that Parkinson’s was a part of his life was that his medication wasn’t working well, so I gave him a ride back to his apartment building after our dinner. Nine months after our first date, Karl proposed to me and I immediately accepted! I loved Karl and wasn’t going to let Parkinson’s ruin my opportunity to be with the man that I love. As, I always say - I love the Man, not the disease!
Last November, we celebrated our twentieth wedding anniversary with our first trip to Hawaii. Karl and I work from home in our own business, which is a publishing company that has released two books about living with Parkinson’s disease. We decided seventeen years ago to start our own business which allowed us to continue working but also the flexibility to cope with the ups and downs of living with Parkinson’s, for both of us.
Stay active and engaged
We try to live our lives focused one moment at a time. Young Onset Parkinson’s seems to be progressing for Karl at a very slow rate. Our strategy for living well with Parkinson’s is to continue to be active by exercising, using complementary therapies massage and Reiki, keeping up to date with advances in treatments, and participating in a monthly Parkinson’s café for support.
Has it been difficult for you or a loved one to maintain hobbies?