Although the subtitle of Lori’s Lessons is What Parkinson’s Teaches about Life and Love, it isn’t really about Parkinson’s disease. Parkinson’s is just the platform for Lori’s attack on the most difficult problem of her life. I first learned this two years ago when Bob emailed me about writing the Patins’ story. He said: “It isn’t really a story of Parkinson’s but a story of fighting anything thrown at folks and the kind of attitude, help and processes that all combine to deal with any challenge. Parkinson’s is just the platform.”
If I had to sum up all that I admire about Lori in one word, that word would be attitude. Her attitude is remarkable. She is absolutely forthright about telling people her limitations and needs but is never a drama queen. She doesn’t feel sorry for herself. She is determined to make the best of her life and if she doesn’t find the right way to do it the first time, she will find another way. “I am absolutely determined that this is not going to get to me. I will not let Parkinson’s control my life. My destiny is still in my own hands.”
Bob explains, “I was trained long ago in the world of work that you can use any situation to your advantage if you approach it the right way. In this case, with Parkinson’s, we say to ourselves, “We acknowledge that this is ugly, but how do we actually make it work for us?” How do we force ourselves to get into a mindset that says that we can turn this ugly situation to our advantage by thinking about it creatively?”
Lori has thought really creatively and draws upon every resource to take
a 360-degree approach to her problem. Her attack on Parkinson’s is like a wheel crushing down on the enemy. She uses medicines (the rational approach), the spiritual approach, friends and family (the community approach), diet exercise and sleep (the physical approach) and the assistance of caregivers.
I did not aspire to be a caregiver, but that is what I have become. I have balked and struggled, but I want to do my best to help two women, one very young and the other very old.
Last year I became a caregiver for my 17-year-old daughter when she was diagnosed with epilepsy. Two days after we got back from dropping her off at college, my 92-year-old mother had a stroke, and later a heart attack and a bleeding ulcer. Now I am taking care of my dear mother too.
From Lori and Bob, I have learned that caregiving is a love story. She says Bob reminds her of the gospel song: “He walks with me, and he talks with me and he tells me that I am his own,” even though this of course refers to a much greater love and power than the human. You give care for someone because you love her or him. You take on the task rather than delegating it because this is not a job. It is life.
Caregiving is a dance where the person giving care and the person receiving it wrap their arms around each other and move in time together to the music. Bob says that it is important for the person being cared for to respond with love. “You must love the people who love you. Their love and care demands reciprocity. You can’t just expect or demand or even accept their love and care without convincing them that you love them back. If nothing else, just tell them.”
The dance of caregiving is not a grim duty. The caregiver both gives and receives joy, as does the person being cared for. Lori advises: “Make constant ‘deposits’ into your energy bank accounts with hugs, sunrises, and laughs. They will allow for big withdrawals when you get hit with the unexpected.”
in my next blog.
Lori Patin brings so many wonderful qualities to her struggle against Parkinson’s – strength, persistence, determination. Still the quality that impresses me most is her attitude. Now attitude is a very difficult quality to pin down. The best way I can describe Lori’s attitude is to show a great example – her attitude towards hallucinations, a common side effect of Parkinson’s meds.
“One funny thing was that I started having hallucinations,” Lori told me. “I know that sounds really quite odd that I find those funny, and my family certainly was not laughing, but I wasn’t scared at all. I would get to talk to my father who has been dead for years or to my brother who lives in Ohio. Or I would see lots of animals, dogs, coyotes, even a zebra. Once I told Aly that she was in the living room delousing a zebra. You have to laugh at that one. These hallucinations weren’t transparent; they had form and shape and were as three dimensional as you or I. They didn’t scare me because I knew they were hallucinations, partly because it wasn’t logical to have my dead father in the family room or a zebra in the living room and partly because I just knew it was not real.”
Lori’s Lessons is a memoir and it isn’t. While it does tell the story of Lori Patin’s life and of her long battle against Parkinson’s, that is not really what it’s about.
In a nutshell the story is that after fifteen years of Lori vs. PD, Parkinson’s was winning. Lori lay in a coma. Her family and friends thought the best they could hope for was for their sweet wife/mother/friend to come home in a wheelchair with a nurse. Instead she is playing golf and dancing.
Parkinson’s does not go into remission. Except for Lori. Seventeen years after being diagnosed, she is better than she was twelve years ago. Recognizing that she has been blessed with a miracle, Lori believes God wants her to do something with her story. She wants other people to know how she did it. She wants to inspire them to believe that they can do it too because she did.
Not that she is promising remission. Her doctor, Michael Rezak, MD, PhD, is a nationally known Parkinson’s specialist. He has seen nothing like it before and knows of no other example in the literature.
And Lori’s story is not just for Parkinson’s patients. It is for anyone who faces a major challenge. The principles she uses to fight PD work against other all-encompassing problems.