The winding path from a Parkinson’s diagnosis to accepting it

Was it really Parkinson’s disease? What else could these symptoms be? Could there have been some mistake? Is this just a crazy dream that I’ll wake up from? What will the future look like? Why us?

I could probably go on all day, using up my maximum of 800 words and quoting the hundreds of questions that ran through my head in the days and months following my husband’s diagnosis of early-onset Parkinson’s disease. But I think you get the idea.

Soon after Arman, my husband, began experiencing extreme bouts of slowness, stiffness, and fatigue, I had a pretty good idea of what his diagnosis would be, but it took a while for a neurologist to officially confirm it. During the time that we waited and ultimately heard the words, “All signs point to early-onset Parkinson’s disease,” I’d already started to feel a sense of anticipatory grief, knowing that something bad was looming ahead of us.

I needed even more time to learn to manage these intense feelings. Grief is not a linear process, and some days were better than others. Feelings of loss can vary not only daily, but even hourly on certain days, and often moment to moment on the harder days.

Recommended Reading

January 17, 2020 Columns by Dr. C

In Search of Acceptance: Starting Small

Today, 15 years in, I still experience waves of grief, and I likely always will. I’ll probably continue to be sad for Arman and all that he’s lost. When I feel that sadness and anger begin to slowly tiptoe back into my life, I redirect my thoughts to all of the good that Parkinson’s has brought into our lives. For example, Arman has been afforded the luxury of time with our children as they grew up, something he may have missed out on because of his busy career as a cardiologist.

I’ve come to realize that constantly wondering “Why us?” is an unproductive use of our time and energy. Of course, it’s normal to ponder that question at times, but it’s so important to get out of that mindset and move on quickly.

No more questioning reality

I knew that acceptance was a critical next step for myself, my husband, and my three young children. As with all things parenting, I knew that my kids were watching and learning from us, and I needed to be mindful and methodical about our approach to dealing with Arman’s symptoms. If we learned to accept Parkinson’s, it’d be easier for our children to do so as well.

Taking the time we needed to continue building on our already resilient marriage and family life was crucial to holding us all together tightly; falling apart was not an option. Arman and I adopted a positive mindset, an essential piece to our complicated puzzle.

I realized I had two choices in the matter:

1. I could fight the diagnosis and live a sad and angry life.
2. I could accept our fate and enjoy a wonderful life in spite of it.

I used to think that if we accepted Arman’s diagnosis, we were conceding defeat. But the more we fought acceptance, the harder life became. Instead of fighting, we’re accepting our reality and meeting it with the maturity required to handle it. When we were finally able to move past that thick, heavy fog of grief hanging over our lives, we felt like a weight had been lifted, and we were free to live our lives again.

When we reached the threshold of acceptance, it was a significant adjustment. At times, it felt like I was giving in or giving up as the feelings of grief and sadness moved into acceptance. This threshold was marked by a shift in our mindset, a realization that fighting the diagnosis was only making life more complicated.

Some days, I felt like accepting Parkinson’s was allowing it to beat us. It gradually became easier and more natural to accept as time passed, and we found ourselves focusing more on living our lives and less on the disease’s impact.

The process of acceptance in any difficult situation must be your own. No two people will be able to achieve it on the same route. The most crucial aspect of the journey to acceptance is to remain on the path, follow the twists and turns, and continue moving forward, traveling away from grief and sadness. It’s OK to look back, too, because it’s incredible to see how far you’ve come. And one day, you might just realize how natural acceptance has become.

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.