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PRO - The History of Parkinson’s Resource Organization
The concept of Parkinson’s Resource Organization came about on an airplane ride back from New Orleans, Louisiana where I attended a Parkinson’s symposium and came away with more questions than anyone seemed comfortable answering.
On the trip back to Los Angeles I had an epiphany that I shared with my seatmate, saying, “I know; we’ll call it 'Children of Parkinsonians,' our acronym will be COPS, and we’ll be out to arrest Parkinson’s." My seatmate had no idea what Parkinson’s was, and for that matter, in 1989 nor did I. I only knew my mother and my fiancé (who later became my husband) were both diagnosed with it.
I chose about 13 of my friends to join me in brainstorming sessions to determine if it was a good idea to start another Parkinson’s Organization. There were five major ones at that time. We had representatives from American Parkinson’s Disease Association and National Parkinson’s Foundation come to discuss with us why we might consider joining forces with them. It was apparent that there could be no autonomy for us to build what we thought covering the needs of families affected by Parkinson’s were; we wanted a clear and unbiased mindset on how best to help people with Parkinson’s and/or their families.
In 1989-1990 there were many support groups but there were none that were for me. I was the adult child of a person living with Parkinson’s, and I was soon to become the spouse of a person with Parkinson’s. Where was I going to go to discuss my issues and concerns? This, we thought, would be our niche. We would advocate for, educate, emotionally support, and supply respite to the caregivers of people with Parkinson’s.
On December 17, 1990, we were incorporated, registered with the Internal Revenue Service as a 501(c)(3) non-profit charity, and registered with the Attorney General of the State of California.
By 1995, people with Parkinson’s were asking us if we could create meetings for them like the ones we had for our caregivers. They also were concerned because 1) they were not children, or 2) they didn't have children, or 3) their children were not interested, they were. At first we suggested that they work with the other organizations to get what they wanted; however, their persistence moved us forward to creating “educational” forums that were meetings opened to the people with Parkinson’s as well as the caregivers. We tried to keep the meetings centered on “Quality of Life” issues, family planning, and “Life” issues rather than bringing in drug representatives to discuss the latest in drugs available. We also stayed away from doctors speaking to the group unless they could discuss “Quality of Life” issues. With all of this, it was incumbent that we change the name of the organization. So we had a contest among our Newsworthy Notes Newsletter readers. Trudi Licht from Palm Desert won the name contest with Parkinson’s Resource Organization, and from Granada Hills, CA, won the contest for the logo, which is the sun burst that includes the words Hope, Encouragement, Support, Education and Inspiration.
Our focus remained around having Board and Advisory Board Members that were laypeople as well as professionals that practiced in areas that would inure to the benefits of everyday living with this disease.
- Legal: Estate planning, long term care planning both in the way of insurance as well as the foundation for public subsidy, wills versus trusts, conservatorships, powers of attorney, powers of attorney for health care, planned giving, SSI and SSDI, and veterans' issues.
- Insurance: Long-term care insurance–for the caregiver as the person diagnosed with Parkinson’s was no longer eligible, medical insurance including supplemental, life and disability insurance, and viatical settlements.
- Financial Planning: CPAs, wealth managers, bankers, and trust officers.
- Caregiving and Care Management: In-home service agencies, assisted living facilities, board and care facilities, skilled nursing facilities, independent living with a care menu, personalized referral services for care options, and geriatric care managers.
- Medical Professionals: Using an integrative approach and specializing in movement disorders/neurology, vision, incontinence, nutrition, speech and swallowing, hearing, occupational therapy, physical therapy, chiropractic, and alternative medicine.
- Hospice and End of Life: Hospice care, end of life care practitioners, mortuaries, crematoriums, and funeral homes.
- Science: Brain and tissue banks, for donation of brain tissues and body parts for the development of better science and proof of disease diagnosis.
Now, instead of building a Board of Directors that practice in the areas that would inure to the benefits of everyday living with this disease, we’re building the Wellness Village.
Working so no one is isolated because of Parkinson’s and working to find choices in creating your ultimate quality of life.