PAR Spotlights... Young-Onset PD

Doug ReiD

Doug was diagnosed with Young-Onset

Parkinson’s disease (YO) at age 36. It has been 13 years since diagnosis. Doug co-leads PAR’s DBS support group.

Q: How long did it take before you received the correct diagnosis?

A: About a year before I was diagnosed, I had a slight tremor in my left thumb. I saw my primary care doctor who gave me a beta blocker. The tremor got worse after a year so I went to a neurologist who right away said this was classic Young-Onset Parkinson’s.

Q: What was your acceptance process? Was there denial?

A: I was not thinking about PD at all, so I was in total shock when I got the diagnosis. I fell into depression for a few years following. I had DBS surgery 3 years ago and now I often feel like I don’t even have PD.

Q: What unique challenges do you feel YO people have vs. those who are older?

A: Because we are a minority in the PD community, it can be difficult to find peers.

Q: What services or programs do you feel are missing for people with YO?

A: I would love to see a Zoom support group specifically for YO.

Q: What is the most common response or misconception when people find out your diagnosis?

A: Most are just shocked by my age. People view it as an older disease.

Q: What advice would you give to someone just diagnosed?

A: Reach out to the Parkinson’s community, get invloved. It truly is a great community of people. I haven’t met one PD peson who is a jerk. Get active - try to exercise each day.

Doug and Kirsti are a part of PAR’s Young-Onset Advisory Committee. One of PAR’s long-term goals is to increase our outreach to the Young-Onset community in Colorado. The experiences of the advisory committee will help PAR better understand what services and programs are most beneficial to the Young-Onset community.

KiRsti PeteRson

Kirsti was diagnosed with Young-Onset

Parkinson’s disease (YO) at age 46. It has been 7 years since diagnosis. Kirsti is part of PAR’s YO Committee.

Q: How long did it take before you received the correct diagnosis?

A: My first symptom was 3 years before I was diagnosed. I had cramping on my right thigh and right front shin so I went to an orthopedic surgeon. I saw additional orthos but they felt it was a pinched nerve. Finally, a family member noticed my gait issues and suggested seeing a neurologist, but it was not until I got to see a movement disorder specialist that I actually got my PD diagnosis.

Q: What was your acceptance process? Was there denial?

A: I almost felt relieved after all the confusion.I addressed it head-on and even shared with my friends and family by throwing myseft a Parkie Party. I may have been in a little denial about just how much things would change.

Q: What unique challenges do you feel YO people have vs. those who are older?

A: Often you are still working or have younger children. Having to quit work and stop driving at such a young age was really hard. Most friends can’t relate to your challenges.

Q: What services or programs do you feel are missing for people with YO?

A: I have been lucky to find plenty of YO groups. It just takes reaching out and asking around.

Q: What is the most common misconception when people find out your diagnosis?

A: That your symptoms should be much worse if you have it. I would often hear, “You look fine!” “You look so great!”

So much is hidden with PD that people don’t see - cognition, fatigue.

Q: What advice would you give to someone just diagnosed?

A: That it will be okay. Don’t just go by what your doctor says - be more inquisitive of what you are putting into your body. Pay attention to side effects. Don’t have unrealistic expectations and try to focus on the present. Live the best life you can right now.

Sunday, June 4 - 9:00am - Denver, CO - Washington Park

Sunday, June 11 - 9:00am - Longmont, CO - Sandstone Ranch

Added this year:

Saturday, April 22 - 11:00am - Casper, WY

Saturday, September 23 - 9:00am - El Jebel, CO

New this year!

Up For Parkinson’s!”

Parkinson Association of the Rockies will be changing the Vitality 5K registration to help make a significant difference for People with Parkinson’s, their families, and the Parkinson’s communities in Colorado and Wyoming. We will no longer be charging a registration fee. Instead, we are putting the POWER to fundraise in your hands. This is an opportunity to POWER UP your fundraising efforts and motivate your friends, family, coworkers, and team.

Out of town? Have to work? You can still join the cause online with Virtual Vitality.

POWER UP your fundraising! Fundraising Levels:

$75 - T-shirt

$125 - Fleece Throw Blanket

$250 - Travel Folding Chair

$500 - Prize ticket for the Grand Prize - Getaway Vacation Package (every $500 raised will earn you a prize ticket for the Grand Prize Drawing) For more information, contact Jess at JNagell@ParkinsonRockies.org, or call (303) 830-1839