30 Days of PD: I’ve Found That We’re Not Alone

Photo courtesy of Traci Caldwell

Day 10 of 30

This is Traci Caldwell’s story:

My Parkinson’s journey is a little complicated. Unique, some may say.

It started July 2018 after I began a new medication that caused a seizure and left me with dystonic movements. Doctors said it would resolve after I stopped the medication, but it continued.

I had painful uncontrollable movements that forced my head to one side and a grimacing face, along with non-epileptic seizures. I went to many different doctors and got no answers, sadly. It was very frustrating and scary. My husband went with me to every appointment, every hospital visit, every test. He’s been there since day one. He was my voice when I had none. During these episodes, I literally had no voice. I’m unable to talk or communicate, but I can hear everything that is going on.

A year into it, I found the neurologist I see now. She tried me on Sinemet (carbidopa-levodopa) and my symptoms improved. I was so excited! Later, a DaTscan, which checks dopamine levels, came back positive. I will never forget the day I heard the words: “You have Parkinson’s disease.” I was devastated and completely shocked. I had never heard much about this disease, so I feared the unknown.

After receiving my diagnosis, I continued to have seizures and tried to find out what was causing them. I was referred to two different doctors who both said I was too young for Parkinson’s. I think some doctors look at my age and overlook my symptoms as stress. I often wonder if age wasn’t a factor if that would make my diagnosis more clearer.

Which brought me to DaTscan number two. That one came back negative. It was confusing and made no sense to my neurologist, who is currently treating me and my symptoms, which include tremor, lack of arm swing, dystonia, balance issues, and stiffness.

During this journey, I have found that there are many wonderful people in the Parkinson’s community and I am not alone. I will continue to fight for myself, to keep the faith, and never give up.

Parkinson’s News Today’s 30 Days of PD campaign will publish one story per day for Parkinson’s Disease Awareness Month in April. Follow us on Facebook and Instagram for more stories like this, using the hashtag #30DaysofPD, or read the full series.