For Carson City local Brian Reedy, dealing with Parkinson’s disease is just another hurdle in life, because though his limbs may be shaky, his positive attitude and humor is never something that wavers.
Reedy is best known around town for his work as a teacher at Carson High School for nearly two decades before he had to retire because of his illness. But, he hasn’t let Parkinson’s become a negative force in his life.
“Our days aren’t made by bad things that happen, they are made by how you make the best day happen,” Reedy said.
Parkinson’s disease is a progressive, chronic neurodegenerative disease that damages the dopamine-producing nerve cells in the brain. The depletion or loss of dopamine cells leads to less mobility and control over limb movements and symptoms often include tremors, freezing or slowness.
“People think Parkinson’s is a withering old man, slowly dying, but that isn’t it,” Reedy said. “We just have more challenges, but with the right mindset you can thrive. Most people with Parkinson’s don’t want pity, we just want to be understood.”
Reedy has been diagnosed with Parkinson’s for seven years, after sustaining traumatic brain injuries in a car crash nearly 10 years ago. He was on his way home near Edmonds Drive when a vehicle traveling 60 miles per hour took a blind turn and hit Reedy’s vehicle.
About a year later, his wife Lily noticed his arm wasn’t swinging when he walked. They went to the doctor, and later several neurosurgeons who didn’t diagnose it as Parkinson’s until about three years later.
“He had the symptoms, but no one was willing to make that decision because he was too young,” Lily said. “… When they said it was Parkinson’s it was a shock but almost kind of a relief too because we finally had an answer as to what was wrong. The unknown was much worse than the diagnosis.”
So from there, it was a learning experience, from figuring out exactly what the disease would do to Reedy to how to handle the new changes.
“It was more than just the tremors,” Lily said. “He lost 80 pounds in 10 months, his ability to multitask disappeared, his math skills disappeared.”
Reedy never hid from the disease. He said he was always upfront about it and often uses humor to talk about it with people.
“We decided to be upfront about it, so I told the school and students and the support I got was amazing and unexpected,” Reedy said. “The administration offered me all the support they had, I didn’t want any special favors but they were there to offer it.”
At the beginning of the school year, he would make jokes with the students about his disease and even had an extra credit assignment to see which student could come up with the best joke about Parkinson’s.
“Somehow my jokes were bad, but theirs were worse,” Reedy laughed.
But, he continued working through the early years of his diagnosis because of his love for his students and the purpose it gave him.
“As a teacher, I was able to ignite kids and give them the tools or people or connections (to be successful),” Reedy said. “Life as a teacher really filled my heart with the greatest sense of duty and it was a calling for me.”
Reedy attempted to continue working at Carson High School for several years before the disease became too much to handle with work.
“Three years after my diagnosis I couldn’t teach anymore,” Reedy said. “I realized our life together was more important than a career that I love more than life. But I love my wife more and I needed to do it for our quality of life.”
But in recent years, Reedy has decided not to let the Parkinson’s become the death sentence typically associated with the disease.
“The scary part, was (originally) I started to look online to see what Parkinson’s is and it freaked me out because it was all doom and gloom,” Reedy said. “What I tell people now about it, versus what it did 10 years ago is a world of difference.”
One key factor is replacing the things Reedy can no longer do with things he still can do with Parkinson’s.
“It is about replacing with things that give him self-worth because Parkinson’s is a disease of loss — cognitive and physical — but as a care partner it is important to help produce that sense of self-worth…because he is still quite capable,” Lily said.
But it still isn’t a walk in the park; he said there are some days that are still difficult; ones where he can’t get up because he is frozen in a chair or his feet swell too much where walking hurts.
“But then its like the next day when you can move again, you celebrate that,” Reedy said. “…I also have a really strong sense of faith and that gives me calm in the unknowns, I have a true belief that no matter what, it will be OK.”
The biggest factor with managing his disease was the introduction of forced intensive exercise.
“I really went downhill in the first few years of the disease because I didn’t know what I needed to do, all I knew was that I needed to fight,” Reedy said. “But then I started going to conferences and meetings and started to get information on what I should be doing… but the forced intensive exercise is what made the difference.”
“Parkinson’s is like a rubber band that is tightening more and more,” Reedy said. “(When you do) physical therapy or exercise, you do it with really exaggerated movements so you force that rubber band to stretch because it is pushing you beyond what you can push and it creates a better way to make life more effective.”
In the last few years, Reedy and his wife Lily have become advocates for Parkinson’s education nationwide and in the community.
For them, raising awareness about young on-set Parkinson’s is important- as that is what Reedy suffers from.
The two restarted the Carson City support group for those in the community with the same disease. The VA up in Reno had a support group in Carson some years ago, but had to cut it because of funding and the Reedys jumped at the chance to restart it.
“The group has a voice, they tell us what they want to see, do and talk about,” Reedy said. “We wanted to also keep a positive spin to it, so we don’t sit and complain. We listen, to the struggles, we get information and knowledge and we bring in resources to help.”
Today, the group has upward of 30 people who come together to talk, support and learn to live with Parkinson’s.
“It is a big family, there is incredible camaraderie,” Reedy said. “That is the part that lifts you up because there are people there that understand what you are going through, you have the knowledge and other’s stories that prepares you and gives you knowledge to share.”
In addition, the couple also has started a care partners support group so that those who care for patients with Parkinson’s can get some free time to talk with others who understand the difficulties.
“It is a time to share stories, there are lots of laughs and it is just a break from the normal,” Lily said. “Life can get really busy (as a care partner) but this is a way to connect and provide with people in a safe and open space.”
Lily said that even the simple coffee and conversation that the meetings consist of is a big deal for the care partners.
“It is a break and a time to set aside for just them so they do it regardless,” Lily said.
But their efforts haven’t stopped with the region’s boundaries; Reedy has been working to increase Parkinson’s policies throughout Nevada and the country. He has met with several state senators and even travelled to Washington D.C. to speak with dignitaries about enacting and improving policies related to Parkinson’s. They want to enact things such as funding and regulations to bring Telemedicine to Nevada and creating a nationwide database for neurological diseases so that providers can have shared information on Parkinson’s and other patients.
For him, life with Parkinson’s has become a daily question of what can Reedy do to improve his quality of life with the disease.
“I am scared to lose my physical abilities so I find more alternatives,” Reedy said. “If walking becomes more difficult, fine, I’ll ride a bike. But I am going to keep moving, keep laughing, keep my faith. I have seen this life as a blessing.”