Will the sky clear up and the sun shine brightly?
By Wendy van Wijk-Lugthart (Wendy’s Parkinson Journey) – February 18, 2025
What If I Don’t Have Parkinson’s Disease After All? That question suddenly arose after what I thought would be a routine visit to my neurologist. After 7.5 years of living with a Parkinson’s Disease diagnosis, I expected nothing new—until my doctor questioned it.
I had been gradually reducing my medication and still feeling good. “You’ve remained stable since your diagnosis,” he said. “You’ve even further reduced your medication, you don’t have problems with sleep, smell or taste, and your facial expression hasn’t changed. I just want to be sure you really have Parkinson’s Disease by doing a DAT scan.”
“What else could it be?”
“I think of tremor dystonia and if you have that it stays with tremors, no other symptoms will appear.”
“But don’t you see other people who are doing like me?”
“Yes I see people as positive as you and doing something they like but in the years you see any progress.”
The thought was overwhelming. What was happening? Could it be that I didn’t have Parkinson’s after all? What would change? I needed to talk to someone. Still at the hospital, I called my husband first. After that I had the urge to reach out and call someone else. She took all the time I needed, listened with compassion, and reassured me. Slowly, I started to feel calmer. I hung up and drove home, hesitant to share the news, waiting anxiously as questions swirled in my mind: Had I been misdiagnosed? What would this mean for my future? Would I still be part of the Parkinson’s community that had supported me all these years?
And there I was in the hospital lying still in the DATscan. I got a little sleepy until it was finally over. As I left the hospital, anxiety crept in. The hospital had the results—but I didn’t. I needed to know. That same evening, I emailed my neurologist.
The wait felt interminable, but the next morning, I got my answer. The result? I still had Parkinson’s, but it was progressing incredibly slowly, with expectations that this trend would continue.
It took me a moment to process. Despite preparing myself for either outcome, part of me had hoped for a different reality. That moment of hope had sparked thoughts of a life without the limitations of a progressive illness. But as I sat with the news, I had an important realization—nothing had truly changed. I was still strong, still capable, still me. My experiences, my resilience, and my journey remained intact.
And, in a way, I felt grateful. My positivity seemed to have helped me, confirming once again that a positive mindset can slow the disease—at least, for me.
If you ever have doubts about your diagnosis, don’t hesitate to ask for a DAT scan. It should be mandatory for people under 60. When I was first diagnosed, my kids were just 9 and 10 years old. What if, after all these years, I had learned I never had Parkinson’s? Can you imagine what was going through my mind?
I don’t know how it is in other countries, but here, DAT scans are not part of the normal procedure. And that needs to change for at least people under 60.