I have recently been working on series in mixed media – acrylic, watercolor, stamp, and collage. With golden wings and flower crowns these angels symbolize the mystical, the spiritual, transcendence.
Perhaps one day I will transcend from my weary limbs to appendages that serve a different purpose. Dawning wings that allow for freedom of movement, not stuttered by tremors, cramping or pain. “Looking for angels, calling all angels, seeking angels” all messages that resonate with me. I would welcome aid from the spiritual, the metaphysical, the extraterrestrial, the magical.
Perhaps this deep seeded wish is a sign that change is near. Or, perhaps the wings are what I will imagine as my hands, now that mine are less able.
Flamingos became a part of our family story when my cousin and I insisted that my Uncle Wayne find a new way to mark his crab pots. All we found in the bay marking the pots were plastic milk containers that all looked alike. It took my cousin and I hours to find our family pots off the coast of Camano Island. To solve this issue, I sent him bright plastic pink flamingos to attach to his crap pot buoys. This began decades of gift exchanges. The more outrageous the better. My aunt even devoted part of her otherwise “Sunset magazine worthy” garden to display a flock of questionable flamingo garden decor. She and my uncle have been on the receiving end of countless gifts from friends and family who have joined in the playful exchange.
Wayne is my mom’s first cousin, not really my uncle, he is my cousin. My grandmother was his father’s younger sister. Mum and her siblings grew up with Wayne and his brother. They were two plus years apart in age and shared many family dinners and holiday times together. I use the term uncle as an affectionate nod to way I care about him. I have been lucky to spend a great deal of time with he and his family, especially on Camano Island, where they spend Summers.
My “uncle” Wayne was diagnosed with Parkinson’s disease nearly twenty years ago. He will turn eighty next month. His birthday is the day after mine, November 24. Over the years I have watched him valiantly fight to maintain his independence as the disease has slowly stolen his muscle control and much of his mobility. He had a surgery called deep brain stimulation twice to help relieve some of his symptoms. Yes, BRAIN surgery. He also takes medicine every 3-4 hours to help him maintain mobility. Walkers and scooters help him to navigate the landscape of his life. He has a recumbent bike that he rides as often as he can. It is an exhausting existence to observe, yet he does so with courage and little complaint. He is quick to offer a joke or witty remark, he laughs often, AND he continues to show up despite the challenges. We share a new level of appreciation for one another, a deeper understanding. We share more than a family tree, more than our flamingos. We share our diagnosis of Parkinson’s.
When I decided to participate in a fundraising walk and gathered my team, I named our team, Team Flamingo. Flamingos are a unique bird, bright in color and survive in the most extreme climates, they thrive in the muck. They stay in large family flocks and are very social. Just like Uncle Wayne and me trying to thrive in the muck of an uncurable brain disease keeping family and friends close. The pink flamingo never fails to bring a smile to my face.
This year I participated in my fourth Sole Support Walk raising funds for Parkinson’s Resources of Oregon (PRO). This organization is the umbrella agency that coordinates support groups in Oregon and is a phenomenal central place for anyone to access information about providers, support, respite and social work services. They support the Young Onset Happy Hour group that I co-founded. It was the third year of Team Flamingo. We raised just over $5000. It was a great event full of family, community, laughter, exercise and music. The flock was strong with many other young onset women who share my challenge and make it worth the fight. I am so very grateful for all that participated, donated, cheered for and loved me through another year.
Despite the muck …..WE WILL SURVIVE AND THRIVE.
We use our hands to function well in the world; to put on our clothes, to feed ourselves, to care for those we love. I have used my hands to help mamas bring their babes into the world. I was honored to work as a midwife “catching” babies for over 15 years. I had a collection of photographs of old weathered hands hung on my office wall. Hands fascinate me; what stories might hands hold? What special touch were they a part of? Hands of the aged showing their wear intrigue me, drawing me into what stories they hold. My dream that one day my life, and the work done with my hands, might hold a story worthy of sharing.
After leaving my practice as a midwife, my hands have been busy in new ways– I call this part of my life “Act Two.” In Act Two, they have learned to mix and play with watercolor. They have learned to jab, cross, hook, and upper cut; boxing with the heavy bag, speed bag and mitts. They tend a garden, make jams and can tomatoes; craft wreaths and sew. They move when delighted or excited by lively conversation. They also shake and are weakened by Parkinson’s Disease. New skills and challenges for a new time of life. I have been learning acceptance.
It is a new issue, a new diagnosis, that I am struggling to accept. Both hands are now changing as the muscles spasm and do not work with each other. My fingers, especially the middle fingers, fail to close into a fist. When I sleep, they might clench and are hard to open when I wake. In the car I often appear to be giving people “the finger” while driving because I can’t curl my fingers around the steering wheel. I am beginning to explore adaptive tools to let me continue to drive.
Dystonia– abnormal contraction of muscles.
Since being diagnosed with Parkinson’s I have been attending boxing classes that use high intensity interval training to provide a workout which elevates my heart rate and focuses on balance. We box, jump rope, do push-ups, run stairs, use the treadmill and swing battle ropes. In the last few months, it has been difficult to put on my boxing gloves and punch the bags. Using the jump rope has become nearly impossible because I can’t hold the handles properly. Exercise is a lifeline for those with Parkinson’s disease. This high intensity work out is one of the only things that is proven to help slow the progression of the disease, I consider it my “medicine.” Dystonia is painful and it is becoming more difficult to exercise.
I love my hands and treat them with respect and kindness. I soak, stretch and flex. I slather them with essential oils and rich lotions. I get massage and acupuncture as often as I can hoping to make them feel better.
All this care and they do not work as they used to.
I have made a living with my hands. My second act has been empowered by things I CAN DO if my hands work. I have loved the symbolism of hands and now it is my hands that are the most disabled part of my body.
I understand intellectually that it is the lack of dopamine in my brain that is causing dystonia. Dystonia is a diagnosis separate from Parkinson’s. It can happen to any muscles in the body. My hands, arms, shoulders and torso are affected. Many people with Parkinson’s get dystonia in their feet. It is more common in Young Onset Parkinson’s Disease. The irony that I have used my hands in my profession, I have learned to paint and to box in retirement and now I am slowly losing the ability to continue is devastating to me.
I do not feel ready for this challenge.
It is only in the last year that I have been more comfortable with my new role, retired midwife and empty nester. How long will I be able to use my hands to paint?
I am not ready to give up the use of my hands.
I am stunned by feeling….. disabled. I am grieving. I want my function back. When will it stop? Is this the end of many dreams?
I desperately want to someday cradle grandchildren, to take care of my loved ones, to continue to care for myself into old age. I want to make baby quilts, teach my grandchildren to paint, build sand ca
stles and crochet. I am 52 years old and not ready to need help cutting up my food, carrying my cup of tea, getting dressed and driving.
I feel despair. I am trying to continue to move my body and use the parts that hurt and don’t work well. I’ve started new medications but, have yet to feel relief. Perhaps they will work soon? Maybe new medicines will be developed? Maybe the cure will be discovered? Hope is a powerful ally. However, the reality is that dystonia is affecting my spirit to feel hopeful.
Pain is a constant partner and a challenge for me – deep aching and prickly hot nerve pain that starts in my hands and radiates up to my shoulder and neck. Many nights I take a dose of muscle relaxants to help me sleep. I am actively practicing meditation and mindfulness. I work to accept the sensations. It is a new challenge to not REACT to or JUDGE but to simply BE with the sensations. I work very hard to avoid the dark place of “this will only get worse.”
I try hard to remember that each day that I wake is an opportunity and I am grateful to be here. But sometimes, the dark sets in and the waves of grief overtake me.
Today is one of those days.
What a whirlwind! June 4 – 7 was the Fifth World Parkinson’s Congress in Kyoto, Japan. Nearly 3,000 people gathered to hear about the latest research about Parkinson’s disease and hear from some of us living with the disease. I was incredibly honored to present with my friend, Nancy Peate, a talk about Resilience. A robust group of us from Portland attended the conference. I will never forget looking out into the audience and seeing so many familiar faces in a county thousands of miles from home.
My dream of presenting to an international audience was realized.
We shared our stories and a how we live with a progressive, incurable brain disease and how we find gratitude and joy. No big secrets were revealed but we shared a philosophy that is working for us and others were eager to hear our message. It felt powerful to speak the words to people from around the world.
It was a remarkable feeling to have people seek us out. Some had seen a video we submitted to the Congress and wanted to learn more about our stories. One couple came to our talk then attended our round table to learn more about our stories. Another woman from Australia had been a midwife and whose story is similar to mine. We became fast friends, are keeping in touch and making plans for 2022.
Nancy and I also had the chance to host World Café discussions as well as a round table. I found these to be a highlight of the conference. To have discussions in small groups about topics relevant to us with others who share our diagnosis and many of our challenges felt powerful. We discussed questions pertinent to navigating life with a diagnosis and how we might change our dialogue with ourselves, our communities and our health care providers.
Taking full advantage of our travels, we explored Kyoto. I found the city to be filled with kind and extremely polite people. It is also a city full of spiritual nooks to reflect and worship. I have visited no less than 10 shrines and temples. A group of us hiked a mountain under thousands of vermillion torii gates. We climbed over 50 stories of stairs and roughly 4.5 miles in heat and humidity. It was a long and challenging hike which allowed for some introspective moments.
I realized that I am deeply grateful. Grateful to be alive, to have friends and family that love me. I am grateful that I have had the opportunity to meet so many strong people from around the world. I am grateful that I have a message that others share.
Another reflection was about one of the lectures I attended at the congress. I have been needing to slow my pace down and take inventory of all the things I am saying “yes” to. The speaker suggested making a TO BE list, not a TO DO list. I loved this. Like so many of us, I have spent a lifetime with to do lists. My new goal is…
to BE more and to DO less.
It is necessary with Parkinson’s to listen to my body’s need for rest and balance it with intensive exercise. Many days this may be enough, just being is enough.
My time in this beautiful city afforded many moments of stillness spent sketching or observing others. Stillness, being, is important and I will work to find more of this in my everyday life at home. If so many in the Japanese culture can integrate worship and reflection into their everyday lives, certainly this Western woman can find some ways to find more stillness.
I also know that I will continue to work on my message. We hope to be invited again to the 6thWorld Parkinson’s Congress in Barcelona in June 2022. My partner and I may even start drafting a book about our experiences.
Who knows what the future holds, but the now is full of wonder and gratitude.