I invited a few friends to write posts because each person’s PD story is different and we learn from each other. The following was written by my friend Joanna. She was diagnosed with Parkinson’s in 2013. Her title for this post is Believing. I call it Positive Thinking.
In late spring of 2013, I found myself in a new phase of my life’s journey with the uninvited companion of Parkinson’s. I decided we needed to accept each other and find some kind of peace. I would do my best to learn whatever it brought into my path, but I would never let it take over. And if I could discourage an extended stay, I would be delighted. My first line of action was to let everyone in my circle of family and friends know about this change for me. The support I asked for was to point me in the direction of anything that would make me laugh – movies, jokes, books, TV shows, cartoons. This gave them a way to help me without eliciting a pity party.
Laughter is healing. I learned this from Norman Cousins when I was in my twenties. Now it’s a scientific fact and I can join in proving it. (Confession: I spent a lot of my life until my 50s often depressed and stressed, so I’m a latecomer to this practice.) My primary healing strategy is to insure that I have as much joy in my life as possible. It isn’t easy by a long shot - when I can’t sleep or when I unwittingly settle into despair and discouragement, old habit trails; when my body won’t function the way I want it to – fumbling with buttons, tremoring multiple letters as I type a message. I can easily succumb to a sense of powerlessness, allowing negativity to finds its niche. To counter this requires vigilance. I stay acutely awake to my emotions so I can guide them back to joy. Sometimes, it’s as simple as reminding myself of what I treasure in my life, of the sunshine or wisps of fog, of my family with all its foibles, of my good friends, old and new, for the birds at dawn. Other times I am grateful that what the doctors call progression of this dis-ease is slow and it surfaced when I was closer to 70. And then again, some of my symptoms can also be ascribed to normal aging in a body that has rarely experienced regular exercise. It’s all a matter of perspective.
When my constellation of symptoms – loss of smell, dizzying low blood pressure, creeping stiffness, fatigue and tremors – was named as Parkinson’s, I actually was relieved. I realized it could be much worse. With a name, I could begin a search to understand my options and choose how to deal with it. My biggest relief was accepting low blood pressure medications to minimize my swings and sways. At first, I was willing to try some of the Parkinson’s meds, but they lowered my blood pressure even more and so had to stop. Currently, I take 1 mg of Azilect. I have to confess it is mostly because I love the name. But I also like that it is preventive – supporting my fading dopamine to stay fully engaged for as long as possible. When I first got my meds, I put them on my small altar and asked that they be blessed for their work with me. I believe in calling on all the energies and spirits to join me in this healing journey, however this healing takes shape. I may not get to a physical cure, but I’m definitely working for spiritual and emotional healing.
When I began my research, I was overwhelmed with the information available. I had to stop for periods at a time. It was depressing and left me dizzy and hopeless about sorting through it all. I was intrigued by some of the stories, but not convinced one way or another; skepticism and suspicion a familial tendency. My first move when learning I had this condition was to sign up for a Parkinson’s dance class. My neurologist had wisely handed me this information along with drugs. Dance took, the drugs did not! I’m not a joiner by nature, but I sensed this was something I should pay attention to. Choosing to do this would be positive action. I would not be a victim. And then, I fell in love with the class. I felt great kinship and belonging. And I had such fun, in touch with the little girl in me, that joyful and adventurous five year old.
A few months into the diagnosis, a friend told me about Bianca Mollé and her cure from Parkinson’s following a regime of Qigong. I knew about Qigong but never got myself into a class. A friend in the dance class lent me a book by Mollé about her journey to Qigong. He also strongly encouraged me to start with a 10 day retreat. Realizing the powers that be were guiding me to this exploration, I took a leap of faith and signed up for my first retreat, with four more to come over the ensuing years. I am deeply grateful I took this leap. Zhineng (Wisdom Healing) Qigong has given me a framework to understand my body; a non-medical approach to healing and how to be pro active at home in managing my health. To be perfectly honest, I struggle with the discipline of routines, so I’m off-and-on the qigong practice wagon, as my life’s rhythms shift and change. But it’s given me the foundation I was looking for, an approach to living and such a deeper understanding of who I am in this incredible universe. It is with me everyday. Fellow Parkinson’s seekers at my retreats also told me of Howard Shifke’s website and his recovery from Parkinson’s. Though I have not followed his recipe, it too includes qigong. I enjoy checking into his blog periodically for a shot of his wisdom and encouragement. I’ve discovered many informational sites, but can only take in so much information at a time. I will periodically read mailings from Parkinson’s groups involved in medical research. I am happy to participate as a guinea pig in non-drug research. But I don’t want to make this my life’s obsession.
Knowing myself, I cannot commit to an unrelenting and rigid program of activities uni-focused on Parkinson’s recovery – be they walking, boxing, ballroom dancing, biking, yoga, qigong. I want to enjoy my life without heavy regimentation that serves as a constant reminder. I may get to some of these activities eventually. I know that when I do Qigong, my body feels great. Resting also makes me feel good. Sometimes, I even forget I have this condition. I can laugh at the challenge of carrying a cup of coffee across a room without splashing, too much. My laughter brings me energy, lightness of being, improved balance, more dopamine for the brain (even if not directly into the substantia nigra where tremors et al originate).
Living well is the challenge, my goal. Dying with a happy heart, with grace and joy is my destination…regardless of what condition I may have. For me, the most important task is to go with what life presents with no illusion that I can be in control of anything more than my attitude and approach. I do not fear death. I fear a life not lived. That Parkinson’s has happened along is part of what I deal with everyday – some days better, some days not so better. But I am constantly learning about myself and that’s about as alive as one can be.
We each have to find what works for us. That’s the beauty of this condition. The challenge is stepping up to our uniqueness and enjoying our life in all its dimensions of good, bad and brutally ugly. I live with the paradoxes. There is no other choice.
