Five things Victoria can do to help Parkinson’s patients stay independent

Learning you or a loved one has Parkinson’s disease can be devastating news.

Learning you or a loved one has Parkinson’s disease can be devastating news. Parkinson’s can ultimately rob someone of their independence, their dignity and much more. It can also mean significant changes for a spouse or caregiver as they adjust to a new role.

Parkinson’s is a complex neurodegenerative disease that includes loss of dopamine in the brain. The exact causes are unknown, but likely involve a complex interaction between genetic and environmental factors. Symptoms include tremors, difficulty with movement and fine motor skills, depression and, ultimately, loss of balance and impaired cognition.

Approximately 13,300 British Columbians live with the disease, and this number will only increase as our population ages.

The good news is that Parkinson’s is one of the most treatable neurological conditions. Most people are able to control their symptoms for many years by working with physicians to find the right therapy. However, people with advanced Parkinson’s become frail and combinations of medications need to be delivered in the right dosage at the right time to maintain independence and quality of life. The difference between optimal versus ineffective therapy may be the difference between independent living and a hospital or nursing home.

In B.C. we are fortunate to have access to excellent programs and supports, including the University of B.C.-based Pacific Parkinson Research Centre, which is a Centre of Excellence for diagnosis and management of Parkinson’s. We also have excellent programs in Surrey, Kelowna and on Vancouver Island.

Key to effective treatment is early diagnosis. There is no single test for Parkinson’s, and many other conditions may mimic the disease, so a comprehensive exam by a neurologist with additional experience in Parkinson’s is required. Unfortunately, patients can face long waits of up to 24 months, which often means delayed treatment and unnecessary disease progression. Once diagnosed, patients often find health professionals such as nurses and physiotherapists lack knowledge of Parkinson’s and best practices. This means patients can receive improper treatment in emergency rooms, hospitals and care homes.

For all of these reasons, Parkinson Society British Columbia has developed a five-point plan to better co-ordinate and increase access to critical supports and services and deliver better care.

Parkinson’s already costs the B.C. health system about $112 million in annual direct costs and we believe we can help reduce future impacts by making strategic investments we estimate will cost less than $2 million a year. We forecast that admissions to hospitals and long-term care will be significantly reduced by developing a B.C. strategy — adding staff to existing Parkinson’s programs, funding specific training for allied health professionals, expanding the deep-brain stimulation program and funding levodopa/carbidopa intestinal gel for selected advanced Parkinson patients with no other options to maintain their independence.

Funding levodopa/carbidopa intestinal gel to a small number of advanced Parkinson patients is an example where strategic funding may be cost effective to the healthcare system as a whole. A short video on our website, tinyurl.com/ParkinsonGel, shows the incredible impact this therapy would have for the estimated 10 to 12 B.C. patients per year who would benefit.

By taking action in five areas, the province can help those with Parkinson’s lead independent lives for as long as possible and reduce their overall impact on the healthcare system.

Jean Blake is CEO of the Parkinson Society B.C.; Dr. Martin McKeown is UBC/PPRI chairman in Parkinson’s research, director of the Pacific Parkinson’s Research Centre and a medical advisor to Parkinson Society B.C.

 

 

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