My PD Story

I was diagnosed with Parkinson’s disease (PD) in a strange way. I was at a pain clinic getting a steroid shot in my back when it was suggested that I should see a neurosurgeon. I agreed, so an appointment was made. When I met him, he kept looking at my hand. After a few minutes he stopped talking and said he wanted me to see a neurologist for an EMG (a diagnostic test that measures muscle response). Not being sure what that was I said OK, and another appointment was made. 

When the neurologist appointment came, I met her and before the EMG I was asked many questions and went through a series of tests. Not really knowing why, but knowing there must be a reason, I complied. Finally, I had the EMG, and then a cognitive test. 

She took very detailed notes the whole time and excused herself for a few minutes. When she came back, she said we had several things to talk about and proceeded to tell me that I had Parkinson’s.  

My reaction was what it might feel like if you were hit in the face with a football. I never saw it coming.

The neurologist was very kind and explained what led to the diagnosis. It turns out the neurosurgeon noticed my tremors and sent me to her thinking that she needed to look further. It took me two weeks to process this information. 

I was in complete denial but after that, I was able to take a physical therapy (PT) class designed for Parkinson’s called BIG movement. It has changed my life. It has been the best thing I could have ever done. 

My outlook is positive, I am boxing now, I walk confidently, my balance is better. I participated in my first research study, the Parkinson’s Foundation genetics study, PD GENEration, because this hits as close to home as you can get. I want to do whatever I can to help find a cure so that hopefully no one in my family or anyone else’s family ever has to go through this experience.

I wanted to participate in this study for a couple reasons. The first was for my family. I felt it was important to find out if I had a genetic link to PD they wanted to know about. Once I submitted my genetic sample, I asked each person in my family if they wanted the results and told them I would respect their answer with no judgement. The second reason was for myself because having Parkinson’s has opened my eyes to just how much I have never known or understood, and more information could only help me.

It felt great to participate in this study because I felt that I was being proactive. For me, anything that can help get answers is one step closer to hopefully finding a cure for this disease.

I will tell anyone who is newly diagnosed, don't feel bad if you get angry, or are in denial, that's a normal response. In my area there is a wonderful group that I connected with that we meet once a month and share news about research we have found, diet, PT, anything. It’s great because we all understand where we are coming from without having to explain. 

Parkinsons is hard but you don't have to travel that road alone even if you have family at home who help you.