Shaking and baking: finding laughter through tears, my diagnosis of Parkinson’s disease

Within a single twelve month period I lost my beloved mother to cancer, started menopause and was diagnosed with Parkinson’s disease.  The shock, grief and reality of being middle-aged collided with the realities of being mortal.  It was a lot to take in.

I thought it was the mixture of grief, sleep deprivation and stress that was causing the trembling feeling in my gut, the occasional head bob and hand tremor. I had cared for my mum as she fought Non-Hodgkin’s Lymphoma that had metastasized to her spine.  My husband and I were also immersed in raising three children with two teens at home.  I had a busy career as a midwife and was the director of our busy hospital based practice.  I had delivered over 800 babies and was looking forward to hitting the 1000 mark.

Though the tremors came first, the hot flashes demanded precedence.  It was easy to ignore the trembling as I dripped with sweat multiple times each day.  I quickly learned to dress in layers and warned the nursing staff not to be alarmed if I was sweating through my sterile drape as I delivered my patients.  After all, menopause is a right of passage for all women, right?  I was trying to learn grace with the process even though I felt way too young to be menopausal (I was 48).  I wanted to be a role model for my daughters, modeling how to navigate the aging process.  I could handle this.  I decided to call the hot flashes “power surges” (rather than “taking a dive into the fire pits of hell,” which is how it felt). Maybe the trembling and occasional tremor was part of the hormonal shift, or stress, or thyroid imbalance?  I would give it more time, surely it would resolve.  Life had other ideas.

IMG_5265 (1)

A few months went by and my right hand tremor started to literally wave at me in my face.  Hmmmm …….. maybe it was time for a check up. I saw my primary care who referred me to a neurologist specializing in movement disorders.  Within ten minutes of the entering his office he told me he was fairly certain that I had Parkinson’s disease but that time would tell and to come back in three months.  WHAT? All I could mumble was, “It can’t be Parkinson’s, I am only 48 years old.”  He assured me that it indeed could be.

Of course I knew what Parkinson’s was. My dad had it, two of my uncles had it.  All of them diagnosed later in life.  As a nurse practitioner, I had studied the neurologic system and the associated diseases.  How could this be true?  I had too much to do to have an incurable and progressive disease, kids to get through college and weddings, an aging and infirm father to help care for, my 1000 baby to deliver, travels to plan.

I took a medical leave from my practice and waited for my follow up appointment.  I cried, I raged, I slept (a lot), I read, I exercised, and ate healthy yet the tremors persisted.  I felt acceptance slowly creeping in.  It was a huge turning point for me when the diagnosis was confirmed.  It was a self-defining moment.  I could not change the diagnosis; I could only define how I would react to it, this was a choice.

Part of me wanted to stay at home, control everything I could to minimize any exacerbation of symptoms, hide so I did not have to show anyone my trembling.  But, I knew that was simply not how I wanted to live.  SO out I went, hand shaking and brow sweating.  I learned to laugh at it, even when I still wanted to cry.  I shared with my closest family and friends that I was “shaking and baking” my way through midlife.  It stuck.  Over time the laughter became more authentic, the choice to laugh more automatic.

I have learned to define my days, my life on my terms.  I DO NOT define myself by how many or how intense my symptoms of Parkinson’s are. I can have a fantastic day with or without intense symptoms.  I will not give my power of self-definition to a disease.

I laugh a lot.  I have permanently retired from the career that I dearly loved.  I have learned to watercolor. I strive to be of service to others.  I spend time with my family and friends.  I am deeply grateful for my life.  I am three years into my Parkinson’s journey and I shake and bake and carry on.