Page created by: Havoc Calls

Hello. My name is Connie Hurla and I want to share my husband's story as told from my perspective. Shawn Hurla was born on July 4. He told me when he was very young he didn't understand why everyone didn't have fireworks on their birthday. Shawn grew up in Lenexa, KS, quiet suburb of Kansas City. At the time, his house was only one of a handful of homes in his subdivision so there was a lot land, trees, and creeks to play in and grow his love of the outdoors and hunting.

A year and half ago, Shawn was having symptoms such as losing a lot of weight, loss of his motor skills allowing him to tie his shoes, button his jeans or pull on a sweatshirt. His face had developed a mask-like feature, his gait had become unsteady, his handwriting smaller and we were worried. He had recently been going to a doctor to correct the medicine for high blood pressure and that doctor also noticed something wrong and referred Shawn to a neurologist. This was around Thanksgiving 2014. On Christmas Eve, he had his appointment and based on their observations, there was definitely something wrong but we would wait until the New Year to start the tests including an MRI.

January 2015, Shawn went through all the tests; all of the things we were scared of, brain tumor, cancer, ALS, MS, were eliminated. The docs still weren't sure but suggested it might be Parkinson's. They put Shawn on a low dose of Sinemet; they said that was really the only way to determine if it was Parkinson's because it would either work or it wouldn't. In Shawn's case, it did work and it seemed like a miracle because rather quickly he went back to the way he was before any symptoms. This particular Neurology office did not focus on Parkinson's disease so they referred us to the Regional and National expert in Parkinson's and Movement Disorders local to us, Kansas University Medical Center, and Doctor Rajesh Pahwa,

Unfortunately, we didn't get to see him directly; he only accepts the worst of the worst cases and everyone has to be referred and have a story. However, we did see a colleague of his, Doctor Ford. When we met with her in March, Shawn had developed on/off periods with the Sinemet. She declared he was under-medicated and doubled his dose. She also stated she was concerned he had Parkinson's Plus and of course, because of Shawn's age of 44, it was Young Onset Parkinsonism. She said she was absolutely referring us to Dr. Pahwa because of Shawn's age and tried to get a first available cancellation appointment for us. We could sense her concern for Shawn.

We saw Dr. Ford again in May because we couldn't get in to see Dr. Pahwa until August. When we did, he indicated Shawn was on a very high dose of Sinemet and wanted to know why. He did not change Shawn's medicine at that time but changed the timing of when Shawn took his doses to help prevent the on/off episodes and lessen some of the medicine side-effects he was having. We asked Dr. Pahwa about the PLUS diagnosis and what stage Shawn might be at but he suggested it was strictly early-stages Parkinson's but he reserved the opportunity to change his mind later.

Because we knew of Michael J Fox having Parkinson's, we checked out his Foundation. We were amazed by all of the strides we have learned that the Michael J Fox Foundation has made in Parkinson's research and therapies. We are blessed to access some of the information and services they provide and are happy to contribute to the advancement of research. It is for a great cause and ran by like-minded individuals and there is great community support. Hopefully, this foundation and others like it will come together to find a cure in the very near future.