What is Parkinson’s Disease?
Parkinson’s Disease is a chronic, progressive movement disorder resulting from a depletion of dopamine in the brain. To date there is no cure for this disease and no consensus as to what causes it. Managing the disease is complex as symptoms fluctuate and are unpredictable. Medications can cause psychological, emotional, and cognitive symptoms.
Some common Parkinson’s symptoms:
- Tremor – shaky limbs while at rest or during activity
- Rigidity – stiffness, muscular pain and cramping
- Slowness of movement – a shuffling gait, sudden stopping
- Postural instability – impaired balance and coordination, abrupt movements, increased chance of falling
- Secondary motor symptoms – fatigue, stooped posture, speech problems, diminished handwriting, drooling, lack of expressions or “facial masking.”
- Non-motor symptoms – dementia, depression, anxiety, sleep disturbances, compulsive behaviors
Why does Washington State need a supportive living residence for people with Parkinson’s Disease?
There are 30,000 Washington State residents with Parkinson’s disease and no two of them have the same symptoms. Approximately 1,200 Washingtonians are diagnosed each year. A needs assessment survey sent to 750 individuals identified either as patients with Parkinson’s or caregivers of patients with Parkinson’s in 2003 indicated a significant need for specialized housing and care services for this patient base.
It is very difficult for individuals to find the quality care they need and deserve. Typical assisted living facilities lack flexibility, resources and understanding necessary to interpret and respond to the many and varied challenges associated with the illness. Others deny access due to medical liabilities. Most are not physically designed so that individuals can successfully perform daily tasks or have access to things they enjoy doing. This leaves individuals feeling frustrated and misunderstood, which can lead to depression and an inability to thrive.
Dignity and compassion are not enough. Research shows that individuals of chronic illness live longer and feel happier when they maintain their privacy and have a sense of purpose. A supportive community environment encourages them to stay engaged, and ultimately fulfilled.
Most organizations that serve people with Parkinson’s disease are providers of medical care, education and support, or fundraising for research. This makes the Parkinson’s Project one of the few efforts in the nation seeking to help people who can no longer be cared for in their home live day to day with the disease. Below are links to some of those other resources:
Northwest Parkinson’s Foundation: NWPF is a Seattle-based non-profit organization that was instrumental in the founding of the Booth Gardner Center Parkinson’s Care Center, a medical and other Parkinson’s-specializing services center at Evergreen Hospital in Kirkland, WA. The NWPF was established to improve quality of life for the Northwest Parkinson’s disease community through programs of awareness, education, advocacy and care.
American Parkinson’s Disease Association/Washington Chapter: APDA supports and empowers people with Parkinson’s Disease, their families, and care-givers, through education, fundraising for research, sponsoring support groups, and networking with resource and referral agencies involved in the care of people with Parkinson’s Disease.
Michael J. Fox Foundation: The Michael J. Fox Foundation is dedicated to finding a cure for Parkinson’s disease through an aggressively funded research agenda and to ensuring the development of improved therapies for those living with Parkinson’s today. Its Web site is rich with information about research, existing, new and upcoming treatments (including deep brain stimulation) and how you can help raise money to help find a cure. See their Living with Parkinson’s page for good and clear information.
Parkinson’s Action Network: PAN serves as a unified voice of the Parkinson’s community advocating for better treatments and a cure. In partnership with other Parkinson’s organizations and a grassroots network, it educates the public and government leaders on better policies for research and an improved quality of life for people living with Parkinson’s.
National Parkinson’s Foundation: NPF works to improve the quality of Parkinson’s care through research, education and outreach. It’s Web site has information about what activities can help people with PD as well as how caregivers can improve the quality of care they offer.