Finding Joy Behind the Mask of Parkinson's Disease

I have been living with Parkinsons disease for ten years. It is degenerative neurological disorder for which there is currently no cure, and at this time the progress of the disease can not be slowed down. At best the symptoms can be managed.

What are the symptoms of Parkinsons Disease?

Classified as a 'movement disorder', Parkinsons disease is characterized by muscle rigidity, hand tremors and slowing of movement. Many people with Parkinsons disease in its more advanced stages also have impaired balance, a stiff facial expression, shuffling gait, muffled speech, and small, cramped handwriting. Some experience memory loss, others struggle with disease-induced depression


My memories of D-Day ("Diagnosis Day") remain viable. "You have garden-variety Parkinson's Disease," announced the neurologist casually, leaving me fighting back tears as I tried to maintain a dignified front. "Garden variety Parkinson's disease?" I repeated to myself then, and for months after, as I tried in vain to deny my new reality. I devoured copious bits of information on disease progress, impact and management and in the hope that knowledge would empower me. Instead, it filled my mind with images of a future truncated by rapidly-spiraling physical and mental deterioration. I was utterly devastated .

Fighting the Good Fight

As the initial shock began to wear off I resolved to fight this strong adversary with every fiber of my being, and to uphold my joyful disposition, despite the challenges ahead. the E

The Effects of Parkinsons Disease

My movements have become slow and deliberate and my fingers clumsy. My handwriting is now illegible, even to me, and I scratch my head in bewilderment as I try to decipher what I've written. But as the disease marches on, striving to gain victory over my body and mind, I have learned to see humor in illegally places. I now use voice-activated software to type because my fingers move stiffly and slowly over the keyboard. The software exists that my name is 'Patel' not 'Adele'. My body moves slowly, like a movie stuck in slow motion … sometimes I want to yell out "Hellooo! I'm still in here!"

I tread cautiously down the stairs, holding tightly on to the banister. I notice that my children are watching me in case I should fall, and I see concern in their furtive backward glances. Slight unsteadiness has gradually crept into my new reality, and I no longer remember how it felt to scurry down the stairs. I begin to realize that I am living with disability, which has insidiously crept into my life

Tak king Charge

Taking charge of my couch-potato self I hired a personal trainer. Wonderful! I lost weight and felt energized, such that I enthusiastically began to scour travel magazines for adventure-style vacations. But my formidable opponent sneaked in and tempered my newly-acquired agility.

So I joined a dance class devoted specifically to people with Parkinsons disease. For one hour each week my inhibitions take flight as I move with rapture and abandon, and momentarily forgetting what brings me there

… until I look around at some of my fellow participants and catch a glimpse of my future. I allow my imagination to run free as I weave stories about the people behind the expressionless masks and unblinking eyes that identify the individual with more advanced Parkinson's. This one might have been a professor professor … that one an aeronautical engineer … another a classical guitarist. The expression of dazed simplicity conceals their emotional and intellectual depth as the Parkinsons mask freezes their once-automatic facial expressiveness.

And the Parkinson's Shuffle is still the most popular dance step amongst this crowd.

Hoping to delay the inevitable for as long as possible, I ingest an impressive array of medicines. I remember how I used to watch little old ladies fishing for their pillboxes in their crammed purses. I am now one of them – except that I am slightly alone (unfortunately!); nor am I old (though I hope to get there!).

My greatest fear is the possibility of losing my intellect – for me this would be the ultimate insult (but would I know?). Even now, simple words elude me, so I try to describe what I am trying to say when I can not find the word. It's there … on the tip of my tongue, but it does not come to me until (if I'm lucky) someone else figures it out. So a cardinal becomes a 'red bird' and a weeping willow 'the tree that criesa "

Living With Parkinsons Disease

It helps to be able to laugh at myself. How else can I deal with forgetting simple words, or being called "Sir" on the telephone because my voice has become deeper and softer … or being relegated to the male section of the choir?

I may be joyful, but I am also human. There are feelings and fears that drift in and out of my psyche … the trepidation that permeates my being when I picture myself with advanced disease … the sadness that pervades when I remind myself that my beloved grandchildren will never know the person I was … the anger I try to suppress each time my body betrays me … the shame I experience when passers-by assume that I'm stealing a handicapped parking spot … the embargo of holding up the line in the grocery store as I fumble in my wallet … the anxiety I feel as I walk slowly down the stairs, holding on to the banister so that I do not fall.

When frustration builds and I need a good cry – I have a loving husband and good friends who open arms soothe my soul. And – always – a visit with my wonderful grandchildren guarantes unadulterated joy.

Until recently I had shared very little of my inner world with my five children, despite the close relationships we enjoy. In part, I did not want to burden them, but a lesser altruistic reason was that I wanted to be viewed as strong … brave … uncomplaining. But then I realized how this was preventing us from achieving the integrity that emanates from openness and authenticity. And – to be fair – there was a part of me that wanted my children to know and understand my experience.

And so we laugh together and cry together … and I quietly thank my lucky stars for the many wonderful people in my life who walk this road with me and give me every reason to be joyful.