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 this world. I was a honored to work as a midwife “catching” babies for over 15 years. A collection 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, what wisdom might they hold?   My favorite picture of Mother Teresa’s hands, those that were of great service, was deeply inspirational.  I could only 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 other 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 in new ways and are weakened by Parkinson’s Disease. New skills and challenges for a new time of life.  I have reached a level acceptance with this new time of my life. 

However, it is a new diagnosis that I am struggling to accept. 

Dystonia – abnormal contraction of muscles.  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 sometimes 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. 

Since being diagnosed with Parkinson’s I have been attending boxing classes that use high intensity interval training to provide a workout 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 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 rare to have it affect the hands. 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, I have just started to embrace the shift to “Act 2.” 

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 the reality that I am feeling….. disabled.  I am grieving my losses. I want my function back. When will the loss 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 castles 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 keep 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 soon they will help?  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 or JUDGE to 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.  

Kat Hill is a Co-Founder of the Women's Parkinsons' Project. She was diagnosed with Young Onset Parkinson’s Disease after delivering over 800 babies in her career as a Nurse Practitioner and Midwife. She is an ambassador for the Davis Phinney Foundation and is publishing her first book, titled “Being Well.”
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