After being diagnosed and dealing with Parkinson’s disease, patient Kim Erickson of Stillwater and his wife, Lizabeth, decided to get involved helping other Parkinson’s patients become aware of new research.
The Ericksons recently applied to be a part of the Parkinson’s Disease Foundation Parkinson’s Advocates in Research (PAIR) program. The PAIR program creates a network made up of more than 200 people with Parkinson’s disease and care partners who are working to solve the barriers that delay new treatments. After an intensive training session the couple are now working on making other people in the Stillwater area aware of the advantages of clinical research.
Kim Erikcson was diagnosed two years ago at age 55 when he began to lose his sense of smell and developed tremors in his hands.
“I was diagnosed younger, and it’s progressing slowly but it is effecting me. I was an airline pilot and it’s made an impact on my career.” he said. “When you’re first diagnosed you have denial, think ‘why me’, and deal with depression. But we recently had a granddaughter who was born and we’re participating in research to protect her and other people and provide a positive benefit going forward.”
The couple currently attends support groups in Stillwater and are participating in institutional reviews with Park Nicollet. They help review clinical trials and participate in the trial set-up process providing the perspective of a Parkinson’s patient.
“We’re involved in research and it doesn’t always involve expensive medical treatments but genetic testing is one of the things we’re participating in,” Lizabeth Erickson said. “Genetic things can be as simple as a cheek swab that allows you to genetically analyze data. There is strong hereditary piece to Parkinson’s and we know it impacts our family too.”
Lizabeth Erickson said her husband’s Parkinson’s is currently treated at Struthers in Golden Valley. She added that the U of M Movement Disorder Clinic is another facility that has great Parkinson’s research and care.
“A lot of Parkinson’s patients need to go to a neurological specialists and it’s hard because most people are not aware of the research that is out there,” she said. “We can serve as a link to patients who may be missing the research and keep in touch with local physicians to make them aware of research that is currently happening. We can also help people consistently participate in research and find places to go.”
Research is important in the Parkinson’s disease fight because it affects many people. According to the National Parkinson Foundation website, 60,000 people are diagnosed with Parkinson’s each year. The total number of patients diagnosed in the U.S. is 1 million and it’s estimated that 4 to 6 million people suffer from the disease. Of these patients, Kim Erickson said about one percent participate in research. There is no cure for the debilitating disease.
“We need to keep people aware of the current opportunities,” he said. “Patients won’t have a cure unless people participate in research.”
Kim Erickson adds that the earlier people can get involved in research of the disease when they’re first diagnosed is beneficial. If someone participates early on there aren’t as many limitations with the disease. As it progresses, and certain medications are taken, people are sometimes disqualified from trials.
To get involved, the Erickson said accessing www.pdf.org and the Michael J. Fox foundation website can inform people about Parkinson’s research and the disease. Also, the couple is willing to be a connection for those living with Parkinson’s.
“We’d like to act as an avenue for people to get information for Parkinson’s Disease and figure out other resources that are available to them in the Stillwater area,” Kim said. “They can certainly contact us via email. You don’t have to identify yourselves and with our experience with the disease if we can’t answer your question we may know people who can.”
Stillwater Parkinson’s Support Group meetings offer educational speakers, friendship and support.
- Location: Boutwells Landing, 5450 Nolan Parkway, Oak Park Heights, Minn., in the 2nd floor community room.
- Days/Times: Third Wednesday of the month from 10-11:15 a.m.
- Contact: 651-351-2364
- Contact the Ericksons at firstname.lastname@example.org