By Josh Friesen
Providing full-time care to a loved one with Parkinson’s disease is a 24/7 job.
Medication administration, mobility assistance, medical coordination, financial planning, household management, meal preparation, transportation — caregivers shoulder a wide range of responsibilities to meet the physical, emotional, medical and logistical needs of those for whom they care. For many, the responsibilities can be physically and emotionally taxing, and caregivers can often neglect their own needs.
Through the establishment of the M.A.R.Y. (Mobilizing Assistance and Resources Year-Round) Fund, Carol Herron is helping the OHSU Parkinson Center care for the caregiver. She was inspired to establish the M.A.R.Y. Fund after seeing the care her late sister, Mary Anne Herron, received after her Parkinson’s diagnosis.
“Parkinson’s became very real in my life,” Carol said. “Mary Anne’s caregivers were amazing.”
The M.A.R.Y. Fund offers reprieve and support to OHSU Parkinson Center patients and their caregivers. Along with funding social worker positions in the center, the M.A.R.Y. Fund helps patients and caregivers cover unforeseen expenses, lending assistance in the form of grocery gift cards, transportation expenses and hotel stays, among other things. The fund also encourages caregivers to use the respite to tend to their own medical needs.
“The M.A.R.Y. Fund has been a godsend,” said Joseph Quinn, M.D., professor of neurology in the OHSU School of Medicine and director of the OHSU Parkinson Center and Movement Disorders Program. “We care for about 1,500 people with Parkinson’s disease, about 100 people with Huntington’s disease, and then a number of Parkinson’s variants and other conditions. It’s a big, big clinic operation, and there’s a lot of need out there.”
Those needs vary greatly. Rachel Lynn, LCSW, a clinical social worker who is a member of OHSU’s Outpatient Neurology team, recalled several times the M.A.R.Y. Fund was used to support patients in a variety of ways. One patient had an old mattress that affected their sleep, and Lynn was able to purchase and deliver a new mattress. Another patient’s income was paused when their labor union went on strike, and Lynn was able to help cover rent. Another patient’s wheelchair was too cumbersome for their caregivers to maneuver, and Lynn was able to send them a lightweight transport chair.
The M.A.R.Y. Fund supported all of it.
“Funds like this are usually for things like prescriptions, medications, research — never for social work,” Lynn said. “So when this fund came, I was just doing my little happy dance that Carol values social work so much because it is so important to people’s overall health.
“I always share with a patient where the funds came from and Mary Anne’s story. Everyone I share that with really appreciates hearing that.”
“The M.A.R.Y. Fund makes it possible for our team to meet those needs in a way that no other resource can.”
Joseph Quinn, M.D.
Establishing a legacy
Mary Anne grew up in Oregon the second of four siblings — with Carol being the youngest. Their father graduated with a medical degree from the University of Oregon Medical School — which later became OHSU — in 1931. Mary Anne followed in her mother’s footsteps with a career as a medical technologist.
Carol remembers Mary Anne as loyal, adventurous and a quick learner. She was often found with her face buried in a book, but she enjoyed company and would read wherever the hub of activity was. Moreover, she kept close, lifelong friendships. Carol recalled the many road bicycle trips she and Mary Anne embarked on together through Oregon, Washington, California, Vermont and Canada.
“She was a quiet person, but she was consistent, and she was loyal,” Carol said. “So, if you made it in with her, you were probably in.”
When Mary Anne passed away June of 2021, Carol used funds she inherited from her sister to establish the M.A.R.Y. Fund in her memory. Her legacy has already left a lasting impact on the patients and caregivers of the OHSU Parkinson Center, and Quinn is excited for the opportunities the support opens in the near future. The center is developing programs to further help caregivers by connecting them with care navigators and providing respite care so caregivers can see their own primary care providers.
“While we doctors are focused on medical care, we lose sight of the fact that paying rent and buying food are more urgent than having diagnostic procedures or taking medicine,” Quinn said. “The M.A.R.Y. Fund makes it possible for our team to meet those needs in a way that no other resource can. We are all grateful for this wonderful and unique gift.”
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