Michael J. Fox Foundation Introduces Educational Videos for Parkinson’s Patients, Caregivers
The Michael J. Fox Foundation (MJFF) has introduced a series of educational videos about Parkinson’s disease, as well as a video offering advice to those caring for people with the disorder. November is National Caregivers Month.
Called the Whiteboard Series, the short illustrated segments are designed to enhance understanding of Parkinson’s and current research activity, the MJFF said in a press release. It also is designed to motivate the Parkinson’s community to get involved.
The series, which has a different narrator for each segment, has four parts: “What is Parkinson’s Disease?,” “How Do We Get to Cures?,” “The Answers Inside Us: Parkinson’s Genetics,” and “Participate in Research and Help Speed a Cure.”
Up to a million people in the United States live with Parkinson’s, according to the first video, and about 60,000 new cases are diagnosed annually. Although age increases the risk of developing the disease — average age at diagnosis is 60 — some patients are younger than 40.
The segment discusses the need for laboratory tests and other diagnostic tools, saying that physicians currently rely on medical histories and exams, looking for classic motor symptoms such as resting tremor, stiffness and slowness of movement. The video also points out that, beyond walking and balance problems, Parkinson’s can also cause constipation, sleep issues, cognitive changes, depression, and loss of the sense of smell.
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While each patient has a unique case and mix of symptoms, all patients have in common the loss of dopamine cells, which coordinate movement and enable feelings of motivation and reward, the video explains.
While some researchers think Parkinson’s is likely caused by a combination of genetics and environmental factors, no straight line can be drawn between cause and effect. Still, according to the segment, genetics research offers the best opportunity to discover paths to treatment.
The video also discusses the need for individualized treatment regimens, and encourages patients to use the Foundation’s 360 Toolkit, which offers advice on living with Parkinson’s.
Another video briefly unspools the complexity of drug development. For example, the video states that it takes more than $1 billion and up to 30 years to bring to market a single central nervous system drug. Even after a series of research steps culminating in clinical trials, only one in 12 prospective drugs is ultimately proven safe and beneficial to patients. The video also discusses the foundation’s research investments and priorities.
The segment on genetics centers around the foundation’s belief that advances arising from genetics research offer some of the best chances of developing therapies to help Parkinson’s patients. It also includes stories from patients who have undergone genetic testing.
The final segment, narrated by a journalist who has Parkinson’s, urges patients to participate as research volunteers. Currently, fewer than one in 10 do. Because 85 percent of clinical trials face delays, and 30 percent don’t get off the ground, many more volunteers are needed, the segment states.
In a separate video called “Ask the MD: Caregiving in Parkinson’s Disease,” Rachel Dolhun, a neurologist and movement disorder specialist who is the foundation’s vice president of medical communications, offers advice for caregivers, including maintaining open lines of communication, staying organized, making sure the patient’s home is safe, and considering other living arrangements before patients can no longer be cared for safely at home.
Dolhun also offers self-care tips for those living with Parkinson’s patients, including maintaining independence, taking breaks, establishing strong support systems, knowing limitations, and prioritizing one’s own health.
The foundation funds research aimed at the development of improved therapies for Parkinson’s patients, as well as ultimately curing the disease.