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Read Time 13 min

People with Parkinson’s Profile: Amber Hesford

Amber Hesford was only 35 years-old when she was diagnosed with Young Onset Parkinson’s in 2018. Her sons were seven and nine. To help her cope with her diagnosis and find community, Amber’s dad suggested she share about her journey on the social media platform TikTok. In the past four years, her audience has grown to nearly 100K people from all over the world. 

“I don’t know where I’d be mentally and emotionally without it,” Amber shares. “The outpouring of support has been incredible. Just finding people going through the same thing has made such a difference for me.”

When Amber heard that the Brian Grant Foundation was going to attempt Portland to Coast, a 130 mile relay across the state of Oregon, to raise awareness about the diversity in the Parkinson’s community, she wanted in.

“As a single mom, as a Latina woman, as a young person, it’s so hard to find people who look like me represented in Parkinson’s literature. But we’re here! We exist! I really wanted to show that,” Amber said. 

Amber had a lot of reservations. She describes herself as “completely sedentary” and works in an office. She would also need to travel from her home in El Paso, Texas, take time off work, and arrange care for her children. 

Her supporters on TikTok rallied behind her 1000%, even making donations to BGF’s fundraiser on her behalf. 

Amber walked the first leg of the relay, a 5.21 mile walk across inner-city Portland that began at 4:10am. While training for the race in the weeks prior, Amber had rolled her ankle, and she needed to stop to have it rebandaged about halfway. She also battled severe dystonia that left her with cramping feet. 

“It was surreal,” Amber says now, a week after the relay. “I really didn’t think I would make it, and I was so nervous that I’d let the team down.”

Amber recounts befriending a random stranger also competing in the relay, a woman named Ethel who just happened to be keeping pace with her. Talking with her through the first leg gave Amber the strength she needed to finish the first five miles. 

“That’s always been my experience though,” Amber says. “I’ve always had incredible people show up for me when I don’t expect them too. I’m very lucky.”

Her second leg of the relay was 3.8 miles and began at 11:15pm. Amber donned her reflective vest and lights and walked into the night.

“I was really scared, but so determined to do it for the team. You don’t expect to form bonds with people that quickly, but I’ve already told all of them ‘you’re not getting rid of me, you’re stuck with me now!’ I wouldn’t have made it through that second leg without Jenny and Todd.”

Jenny Wilhelm and Todd Vogt, fellow team members, took turns walking with Amber to keep her going, even though both had already completed legs earlier in the day. Amber recounts being “totally exhausted,” hardly able to put weight on her leg, but feeling so determined to get to the finish line.

“After I got back home, I felt like ‘You want me to go back to work now? Do you know what I just did?’ It was completely life-changing,” Amber says. “Normally, I have terrible fatigue. After completing the relay, I was bursting with energy even though my body was so fatigued. I just felt incredible.”

Team Grant finished the 130-mile relay with hours to spare, but Amber says that wasn’t her biggest surprise during the experience.

“We were all so glad to finish at all, I don’t think any of us thought we would finish early. But my biggest surprise was actually meeting Kevin and Jenn,” Amber laughs. She shares that as a single mom with Parkinson’s, she assumed she would never meet anyone who would want to “take on the disease.”

“I don’t want to be a burden to anyone,” Amber says. “But I watched Kevin and Jenn and the love they share. They met after Kevin had been diagnosed, and Jenn just loves him, you know? When he was doing his legs, Jenn would stop breathing until he was done. They just adore each other. I realized maybe that really is possible for me.”

After documenting herself undergoing Deep Brain Stimulation (DBS) in 2021, battling COVID directly after, and completing a 130-mile relay with a team of people also living with Parkinson’s disease, Amber agrees that maybe she’s almost brave enough to start dating again. If and when she does, she promises to chronicle her experience at @notthefakeamber on TikTok. 

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