Thread by @MayoClinicNeuro

"I am Jamie Bryson, I just turned 40 years old in April of this year. In April of 2021, I was diagnosed with #YoungOnsetParkinsonsDisease (#YOPD). I am an endurance athlete. I regularly compete in #Ironman and other triathlon events, road cycling events, & mountain biking events.

I live in the Dallas area w/ my wife, 3 boys (ages 12, 9, and 4), and 2 dogs. In November 2021, shortly after my YOPD diagnosis, I also discovered that I had a mass on my kidney and underwent surgery to have it removed in December.

The mass was in fact cancer, but it was caught super early (by accident) so I did not need any further treatment beyond surgery, although I did have to return to the hospital a couple of weeks later with an internal bleed and had COVID at the same time.

I developed a very strong and disruptive tremor in my left leg in March 2021. This led me to a neurologist who diagnosed me with #YOPD. This was an extremely difficult diagnosis for me and my family.

Being told you have #Parkinsons at age 39 when you are working to support a family is devastating. I immediately had a picture in my mind of what the disease looks like in older people and I wondered how long I would be able to live a somewhat "normal" life.

I wondered how long I would be able to continue doing the things I love like triathlon and cycling. I was afraid that I would not be able to continue working and living life as I did.

I decided to apply to @MayoClinic because I did not like the answers I was getting from the neurologists and movement disorder specialist that were treating me in Dallas.

I felt like I was being treated like any other Parkinson's patient and like they were not being proactive and aggressive with my treatment. I was not willing to accept that. I wanted a doctor who would take an interest in me as a person, and not just treat my symptoms.

I wanted a doctor who would support me and help me continue pursuing my goals as an endurance athlete. I also wanted to be involved in cutting edge research and to participate in clinical trials. I wanted a doctor who would be as aggressive as I am in fighting this disease.

I found what I was looking for at Mayo Clinic. The facilities are top-notch and the people there are all incredible. I have told people that Mayo is like the Disney World of hospitals. All the nurses and techs that I interacted with were very friendly and made me feel cared for.

Dr. Rodolfo Savica is exactly the doctor that I was hoping to find. I cannot even express to you how much he changed my life just by meeting with me and talking to me. I found hope at Mayo Clinic.

I found a doctor who I know is in my corner and who is supportive and encourages me to go after my dreams. He took an interest in me and assured me that he is going to do everything he can to figure out how to slow down or stop this disease.

I know that my journey at Mayo has just begun, and hopefully I will get to return to participate in an exciting clinical trial in the near future.

I left Mayo with a totally different outlook on my life with Parkinson's. I left Mayo with hope that I am going to be ok, and I will be able to live my life and do the things that I want to do for a long time.

I also left with hope that there are people working very hard to find a way to stop this disease, and I feel like there will be a treatment that will be available to me at some point in the not too distant future.

One of the things that Dr. Savica and I discussed, was how I was going to use the medication to help me compete in endurance events. We made a medication plan for me to use when I am racing.

I was at Mayo in February of this year and on April 3 of this year, I competed in an Ironman 70.3 in Galveston Texas. That is a 1.2 mile swim, a 56-mile bike, and a half-marathon, all back to back. I am happy to report that I finished that race with a respectable time of 6:34.

Since completing the Ironman 70.3, I have been training for my next race, which is the Leadville 100, also known as The Race Across the Sky. Leadville is a 100-mile mountain bike race across the high-altitude, extreme terrain of the Colorado Rockies which will take place 8.13.22.

I can't think of a better way for me to #keepclimbing than attempting to ride my mountain bike 100 miles with a total elevation gain of over 13,000 feet at high altitude. This is the race of all races.

A true test of endurance, perseverance, determination, and grit. Despite the challenges that I am facing, I am going to fight back. I am not going to let Parkinson's or Cancer stop me!

Before I went to Mayo I felt frustrated that doctors didn't see me as more than just a set of symptoms to manage. I did not feel that way at all at Mayo Clinic. The doctors and staff there made me feel seen, and I felt cared for as a whole person.

If you are not happy with the care you are receiving, or you want a second opinion, then you should seek out the best, and Mayo is the best. Mayo has changed my life, and I think that it could change yours too." @jamiebryson