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Jason is a second generation Kopacz with Parkinson's. Team Kopacz is supporting an end to PD before the next generation of has to go through the uncertainty of a PD diagnosis!
On July 1st, 2014 during Jason's first appointment at the University we knew there was something fairly serious but couldn't imagine that YOPD was the diagnosis. My doctor was very honest, you have something neurological going on….it’s going to be a long process, but you should be prepared that PD is the best case. PD is the best case as compared to ALS, MS or a brain tumor! How can that be! My grandma wasn’t diagnosed until her late 60’s, and Jason was only 36! We have 4 young kids, careers and plans for the future! We went home that night knowing that our lives had been thrown upside down and had to accept it. Yes, we needed to accept the brutal reality of my pending diagnosis. Accepting allow us to move on and start the fight. That same day we went home and dusted off the elliptical in our basement. From that day we have done kickboxing, personal training, HIIT classes, strength classes, Peloton and running multiple times per week.
Since diagnosis, Jason has run multiple marathons, completed the Dopey Challenge, qualified for Boston Marathon and lost 80 lbs! But as he was getting stronger the side effects from the medication were also getting worse. Dyskinesia and Dystonia are the main side effects from taking carbodopa/levodopa and very common for YOPD’ers. To provide some relief to the side effects Jason started the Deep Brain Stimulation (DBS) candidate process in February of 2020. Last August the testing was completed and it was determined that he is a good candidate for this treatment. For Jason, DBS surgery was a three-step process, first step is placing the stimulator in right side of his brain, 2nd step is to place the signal generator and battery pack in his chest and the third step is the place the stimulator in the left side of his brain. The 1st and 3rd surgery are long, 8-10 hours laying awake on the table with Jason's head secured to the bed while placing the stimulator in the Globus Pallidus Internus. Throughout the process Jason volunteered for a couple different research opportunities at the University of Minnesota
The University of Minnesota is recognized as a Udall Center of excellence for Parkinson’s research. After spending a few days with the research faculty, We better understand the challenge that lies ahead for this group! Jason spent two days hooked up to numerous machines that collected data from my brain that will support improved programming of the DBS signal generator. This was a long and painful couple of days because most of the time he was not taking his medication which made him extremely stiff and tired. Throughout the process there were many times Jason wanted to stop the study and take his medication, but he knew that his pain would benefit the PD community and bring everyone closer to a future without PD.
Everyone's fight against PD is not linear and each day is different than the day before. We have accepted my diagnosis of PD but we will never be comfortable knowing there is more work to be done. Jason approaches his daily fight with a blend of hard work, humility and optimism that Team Kopacz can influence a better tomorrow for everyone! Especially those with Parkinson’s!
Individual gains can only be achieved through support of a strong team. Team Kopacz Foundation is our support system and motivation on days we don’t feel like pushing through.
On July 1st, 2014 during Jason's first appointment at the University we knew there was something fairly serious but couldn't imagine that YOPD was the diagnosis. My doctor was very honest, you have something neurological going on….it’s going to be a long process, but you should be prepared that PD is the best case. PD is the best case as compared to ALS, MS or a brain tumor! How can that be! My grandma wasn’t diagnosed until her late 60’s, and Jason was only 36! We have 4 young kids, careers and plans for the future! We went home that night knowing that our lives had been thrown upside down and had to accept it. Yes, we needed to accept the brutal reality of my pending diagnosis. Accepting allow us to move on and start the fight. That same day we went home and dusted off the elliptical in our basement. From that day we have done kickboxing, personal training, HIIT classes, strength classes, Peloton and running multiple times per week.
Since diagnosis, Jason has run multiple marathons, completed the Dopey Challenge, qualified for Boston Marathon and lost 80 lbs! But as he was getting stronger the side effects from the medication were also getting worse. Dyskinesia and Dystonia are the main side effects from taking carbodopa/levodopa and very common for YOPD’ers. To provide some relief to the side effects Jason started the Deep Brain Stimulation (DBS) candidate process in February of 2020. Last August the testing was completed and it was determined that he is a good candidate for this treatment. For Jason, DBS surgery was a three-step process, first step is placing the stimulator in right side of his brain, 2nd step is to place the signal generator and battery pack in his chest and the third step is the place the stimulator in the left side of his brain. The 1st and 3rd surgery are long, 8-10 hours laying awake on the table with Jason's head secured to the bed while placing the stimulator in the Globus Pallidus Internus. Throughout the process Jason volunteered for a couple different research opportunities at the University of Minnesota
The University of Minnesota is recognized as a Udall Center of excellence for Parkinson’s research. After spending a few days with the research faculty, We better understand the challenge that lies ahead for this group! Jason spent two days hooked up to numerous machines that collected data from my brain that will support improved programming of the DBS signal generator. This was a long and painful couple of days because most of the time he was not taking his medication which made him extremely stiff and tired. Throughout the process there were many times Jason wanted to stop the study and take his medication, but he knew that his pain would benefit the PD community and bring everyone closer to a future without PD.
Everyone's fight against PD is not linear and each day is different than the day before. We have accepted my diagnosis of PD but we will never be comfortable knowing there is more work to be done. Jason approaches his daily fight with a blend of hard work, humility and optimism that Team Kopacz can influence a better tomorrow for everyone! Especially those with Parkinson’s!
Individual gains can only be achieved through support of a strong team. Team Kopacz Foundation is our support system and motivation on days we don’t feel like pushing through.