'I Developed Parkinson's Disease in My 30s'

Growing up, we had a family friend who was like a grandmother to me. When I was 12, she was diagnosed with Parkinson's disease and I can remember watching her as the disease progressed. She was always in good spirits and she was very vibrant; she would tell me, "Yeah, I have Parkinson's just like Michael J. Fox." I remember her trying to dance and making sandwiches but shaking and having a lot of trouble with it. Yet she never let on that it was very difficult for her. My mom would take her to physical therapy and she would cuss about it because she didn't like what the therapist was challenging her to do.

She died when I was in college, but to this day, that memory still makes me laugh. Her spirit was so amazing. So I was actually very aware of Parkinson's disease from a young age. I get chills thinking about that now.

My first inkling that something was not right with me was probably in graduate school. I would try to lift myself out of bed after taking a nap, and it would feel so difficult. I began to regularly feel very tired and very heavy; like I was a ton of cinder blocks. I would think, "This is not right," and then continue on. I attributed it to school being rigorous and because I was always active, I would just go to the gym and work out more.

I did not connect the dots at all and I didn't pursue it passionately during that time, because I didn't have the money to. It wasn't until I was an intern in graduate school r and had some wiggle room financially that I could pursue it. I was in South Carolina in 2003 and a different symptom occurred: muscle cramp.

Tyaisha Blount Dillon Developed Young Onset Parkinsons
Captured by Shantel photography

You can't really walk with muscle cramp so I knew I had to get it seen to. That was the beginning of a nightmare story of trying to get diagnosed.

I was very athletic, and I still am, so my physique did not look like someone who was ill. Doctors would tell me that I wasn't sick. But why would I come and tell them I was having trouble walking if nothing was wrong? That was a very difficult time for me. Doctors did not necessarily believe me and I didn't think there was any support for me. Plus, I was young and wanted to be social, and doing that with my symptoms was hard.

The fatigue and muscle cramp were the symptoms I dealt with for a long time, but there was progression with those. The muscle cramps started in my right leg, but eventually, years later, my other side was affected.

It took so many visits to doctors to diagnose my condition. I don't even have an estimate. I saw doctors, rheumatologists, orthopedic specialists, and specialists in muscular dystrophy before I even reached a neurologist. I even had a biopsy to see if I had muscular dystrophy. I was very close to having back surgery that I now know I didn't need.

But I didn't find out what was causing my symptoms until 2013 and that was because I was pregnant with my son. Prior to that I had already been pregnant and lost the baby, so there was an urgency in trying to diagnose me. One of the things that was recurring early on was that I had elevated serum creatine kinase levels, but doctors had to figure out what that meant. The early diagnosis had been Dopa-responsive dystonia (DRD) with parkinsonisms, but after looking at my medical history up until the time I was pregnant and taking a number of neurological tests I was diagnosed with young onset Parkinson's disease. One neurologist had even noticed that the way I dragged my foot was typical of the typical of young onset Parkinson's.

I was 35 when I got the diagnosis, but I had lived with the symptoms for a long time and made peace with them. Before I got diagnosed, and after I lost my first baby, I knew that I had to make a change and take better care of myself. There was a point in 2010 where I could barely walk, and at that stage had been told that it was suspected muscular dystrophy. So I researched that disease, Rhabdomyolysis and Parkinson's disease, because my symptoms related to all three. I was very lethargic and size 16, which isn't necessarily a bad size to be, but I wasn't working out much because it was so painful.

I didn't know what was wrong, but I focused my research on those three illnesses and looked into the kind of game plan I could develop to get myself healthier, and I created my own exercise regimen and began eating lots of green leafy food. So, the doctors had seen profound improvement in me already before diagnosis. I was walking better and getting stronger, and when I was finally diagnosed in 2013, I began taking the medications carbidopa/levodopa and Mirapex regularly and that just took my improvements up a notch.

Tyaisha Blount Dillon Developed Young Onset Parkinsons
Captured by Shantel photography

My health since 2013 has been up and down, and that's mainly been because stress exacerbates Parkinson's disease. In 2013, I was living in Missouri. It was a slower life, which I didn't like very much, but it allowed me to take care of myself.

Then my family and I moved from Missouri to Atlanta in 2015 and I went back to a very intense, very stressful job. I got to a place where I declined. I felt like I was getting close to where I had been in 2010, because of the nature of my job and being a mom. So now, I am self-employed.

I know that young onset Parkinson's disease progresses differently, but exercising regularly from an early age and early diagnosis helps. I have also had Deep Brain Stimulation surgery, which is a type of brain surgery that places electrodes in specific areas of the brain to help manage tremor and other movement symptoms. If I keep going on the same trajectory I hope to be very functional as I get older. And, I have goals. My son is eight so I have a goal that if he is playing baseball in college, I am going to go and I won't be using any assistive devices. I don't allow myself to imagine anything else.

At first I didn't feel like there was a need to share my story, but then I understood that there is an inspirational piece to it. I co-wrote an anthology to share my story and I would like to write a book, and even have that turned into a movie to help share information about Parkinson's disease to a broader audience. That's really my ultimate goal. The African American community doesn't perhaps think a disease like Parkinson's will impact us, but it can. Hopefully Tyler Perry will give me a call!

I would like people to pay attention to their bodies a bit more, because I think that's something young people don't always do. I wish I would have known to eat better and take care of my health a little more. I'm not saying to be obsessively worried, but pay attention to your body.

And, if you do find out that you have an illness, it's not the end of the world. You just need to take a look at yourself and develop ways to fight through it. The Parkinson's Foundation has helped me so much with resources and tools, but there might be support groups or other organizations depending on what people are facing. I want others to know that there are ways to get through it. When someone has something like Parkinson's, the dips can be devastating. People may feel at the time that they cannot improve. But I am living proof that you can.

Tyaisha Blount Dillon lives in Atlanta, Georgia with her family. You can find out more about support for Parkinson's disease at parkinson.org.

All views expressed in this article are the author's own.

As told to Jenny Haward.