Parkinson's Disease Association of San Diego

Provides in-home respite care, information and referral, transportation/escort services, countywide support group network, semi-annual educational symposia, therapeutic singing, nurses training, and supports promising research.

Why do we exist?

Our Mission Statement is: Parkinson's Disease Association of San Diego improves the quality of life for those affected by Parkinson's. We exist to develop and provide essential educational and supportive services to the Parkinson community of San Diego County including diagnosed persons, caregivers, family members, and health care professionals who work with Parkinson's patients.

We also support promising local research projects for innovative treatments for Parkinson's disease, and for a cure to this chronic, progressive, and devastating neurological disorder. In the past, we have funded more than $425,000 of San Diego-based medical research in the field of Parkinsonism.

The Parkinson's Disease Association of San Diego is the only not-for-profit organization in San Diego County that is dedicated solely to providing support and services to people with Parkinson's, their families, and the professionals who treat them.

What have you accomplished?

Many of our programs are unique as well.  For example, our Subsidized In-Home Respite Care Program, established in 1989, was the first such program in the United States.  PDASD contracts with home health care agencies throughout the county to provide trained, bonded respite workers for up to 8 hours a week.  These workers offer companionship, and assistance with activities of daily living to the person with Parkinson's while the family caregiver makes use of a few hours of personal time for grocery shopping, medical or dental appointments, or recreational and spiritual pursuits, whatever is refreshing and revitalizing for that particular person.  PDASD underwrites approximately 70% of the cost of these respite services.  Unlike other respite programs in the area, all of which have a time limit for participation (usually one year), PDASD's Respite Care Program allows families to use it as long as necessary, for example, until the person with Parkinson's dies or is moved to a residential care facility.  As the disease progresses, and the need for help increases, PDASD is there to provide that help.

Our new Financial and Legal Wellbeing Workshop Series, inaugurated in the fall of 2005, consists of four workshops designed to ease the financial burden of Parkinson's patients and family caregivers by providing education and information services about key financial planning and legal matters.  The application of this information can assist the family in maintaining its financial wellbeing as well as navigate the complex maze of legal compliance issues through the potentially long process of the disease.  The workshops deal with Lifestyle Issues such as Employment issues, Caregiver Support sources, Income Tax issues, Tax Planning, and Healthcare-related issues such as Filing for Disability, Veterans Benefits, and Advance Directives.  Investment Strategies for the family facing a possible significant loss of income are covered, as are Risk-Sharing Issues such as Medicare Integration and Long-term Care Insurance.  Also included are End-of-Life Issues like Estate Planning, Durable Powers of Attorney, and Living Wills.  These seminars provide those who attend the series with a useful, expandable reference manual.  This helps guide each family through the maze of legal and financial decisions that must be made when a diagnosis of Parkinson's disease has been received.

Although age is a prime risk factor for Parkinson's, and many patients are diagnosed in their 60s or later, people as young as their 20s can also be affected.  (Actor Michael J. Fox's diagnosis of Parkinson's has helped to focus public attention on the early-onset form of the disease.)  Families with young children and teenagers are thus affected, as well as older families.  Someone you know at work, at your place of worship, or in your neighborhood may have a parent, a spouse, or a relative who has Parkinson's disease.  Someone you know may have the disease himself.  Until tremors and walking difficulties become apparent, or problems with speech begin to manifest, it is not always possible to identify a person with Parkinson's.

At least one million Americans have been diagnosed with Parkinson's; in San Diego County alone, about 15,000 people have the disease, and another estimated 35,000 ' spouses, family members are affected by their diagnosis.  According to the Parkinson's Action Network, a new case of Parkinson's disease (PD) is diagnosed every nine minutes.

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