My diagnosis day was devastating — but not the end of the story

I am certain that anyone who has ever heard the life-shattering words “You have Parkinson’s disease” remembers exactly where they were when their old life ended. I know I do.

For me, it was July 28, 2013. That was the day my old life abruptly ended. Everything I thought I knew about my future had to be dismantled, recalibrated, and painstakingly rebuilt.

Earlier that week, my general practitioner’s receptionist phoned to say that my doctor wanted to see me. She gave no indication why. On the morning of the appointment, I slowly got myself ready. My husband of 18 months drove me because I was no longer able to drive safely. By then, the rigidity, stiffness, and muscle weakness predominantly affecting my left side had invaded my body. My balance had become precarious, and my legs felt like weak matchsticks that could buckle at any moment.

During the appointment, my doctor explained that he’d received a letter from the local neurologist and asked whether I’d also received a copy. I hadn’t. I was completely baffled.

He took a slow breath before reading it aloud. Then came the sentence that changed my life forever: “This patient’s DaTscan showed she has Parkinson’s disease.”

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Everything around me dissolved into a meaningless blur. I could hear my doctor’s voice, but the words no longer made sense. The room seemed to shrink around me. The air grew heavy, time slowed, and an overwhelming melancholy threatened to suffocate me.

I knew absolutely nothing about Parkinson’s disease. My mind instantly filled the silence with terrifying possibilities. Was I dying? Would I end up in a wheelchair? Would I ever work again? Would my husband leave me? Was there anything worth living for?

The answer to that last question is yes, there was. Just six months earlier, I had given birth to my beautiful baby girl. But instead of enjoying those precious early months of motherhood, I found myself trapped inside a broken, increasingly unresponsive body. I was supposed to be caring for this tiny new life, yet I had reached the point where I needed someone to care for me. How could I possibly meet her needs when I was struggling to meet my own?

Those thoughts reverberated through every fiber of my being. The future seemed terrifyingly uncertain.

When I got home, I collapsed onto the sofa and sobbed. I let out a guttural wail. The only thought looping through my mind was, “My life is over.”

I was only 28. This wasn’t supposed to happen to me.

No longer an invisible enemy

Disability had never featured in the future I had imagined. I had been on an upward trajectory, fueled by ambition, determination, and dreams that suddenly felt impossibly out of reach. In the space of a few minutes, everything I had worked toward came crashing down. Surely there had been some mistake. This had to be a nightmare. I simply could not accept this version of reality.

Sadly, as the days turned into weeks, it became painfully clear there would be no waking up from this nightmare. This was my reality now. Once fiercely independent, ambitious, and full of life, I had become a hollow, deeply forlorn version of myself. The fire that had always burned so brightly inside me had been cruelly extinguished, leaving behind someone I barely recognized. Those around me struggled to reconcile the energetic Shamsa they had always known with the woman now standing stiffly before them.

Trapped inside my own body, I could no longer move with any fluidity. No matter how desperately I willed my limbs to obey me, they simply refused. It was as though my body was on strike.

Eventually, something important changed. A few months after that devastating diagnosis, I had a quiet realization. I finally knew what was wrong with my brain and body. It wasn’t psychosomatic, multiple sclerosis, or postpartum depression — all of which had been suggested before my diagnosis. I finally had an explanation.

I was no longer trying to describe an incoherent jumble of bizarre symptoms. I understood why my body had been spluttering, struggling, and short-circuiting so catastrophically.

Then it dawned on me: I finally knew what I was fighting. Parkinson’s was no longer an invisible, nameless force silently sabotaging my body from within. It had revealed itself. Knowledge, I realized, was power. If this disease had declared war on me, then I needed to fight back. My first weapon came in the form of one tiny, utterly inconspicuous tablet called Sinemet (carbidopa and levodopa).

Six months after my diagnosis, that little pill passed my lips for the first time. As it slowly began to work, the concrete encasing my limbs loosened slightly — not much, but enough to remind me that this would not be the end of my story.

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.