Parkinson’s Initiative for Giving

The inspiration for the Parkinson’s Initiative for Giving was Dr. Rose Dagirmanjian.  Read her story to understand how she inspired me to do as much as I can for everyone living with Parkinson’s disease!

Dr. Rose Dagirmanjian’s Story

Those who knew Rose will tell you that she was an inspiration to everyone who met her.  She encouraged everyone to reach for the stars, and she never gave up.  She was feisty and stubborn, and so wonderful and fun!

I met Rose in 2009 when she came to one of the many educational lunch and learn Parkinson’s disease programs that I ran for the Parkinson Support Center of Kentuckiana in Louisville, Kentucky.  She had been diagnosed in 2004 with Parkinson’s the same year as my husband and she impressed me with her proactive and positive attitude toward living with the disease.

When I left the Center, Rose and I stayed in touch, enjoying lunches and meeting for breakfast periodically.  In 2012 I started my company, Parkinson Partners, LLC to be a patient advocate for people with Parkinson’s and their families, train home care agencies about PD, and to run PD support groups.  Rose loved my ideas and encouraged me to follow my passion.  I saw that she was struggling with her PD and she decided in 2015 that she wanted me to be her patient advocate.

That was the beginning of my two-year journey with Rose, serving as her patient advocate, confidante, and facilitator with her many doctors and therapists.  I went to every doctor’s appointment with her, every hospital stay, and tracked her symptoms and medication side effects.  I also created   a specialized care team as she was not able to continue to keep up with paying bills and communication with her long-term care company, and she needed medical management services from a senior pharmacist consultant.  We were all part of her surrogate family.  I was honored to work with her and help her through her very complicated and difficult journey.  Even during her most difficult times with PD, she would smile and laugh at little things.  She even decided from research she has done that she needed to learn to box to help her PD.  She boxed as best she could up until eight months before she passed away.  She also played golf during the same time frame.  She never let her PD stop her until it became impossible for her to continue.

She truly was amazing and she inspired me to start a fund in her name to help people with Parkinson’s disease.  Rose told me quite often “if I have to live with this terrible disease, I hope you are learning some things that will help others”.  She would ask everyone she knew if they had a patient advocate and if not, why not.  She believed that everyone should have a patient advocate to help them through their disease journeys.  I do too.

When Rose (I called her “Rosie”) passed away on October 1st, 2017, I decided I had to do something in her honor; to create a legacy for the world to remember what an incredible woman she was and how she wanted to empower everyone to live life to the fullest.

Rose Dagirmanjian started her life in Whitinsville, Massachusetts (near Boston) July 4, 1930.  Her parents were of Armenian heritage.  This fact played a huge role in the determination and perseverance that Rose showed in everything she did.  Her father had immigrated before WWI, however, her mother lived through the horrendous Armenian genocide.  During the genocide, her mother, a young girl, had been sent to the Syrian Desert to basically starve to death in an internment camp.  Rose tells the story of her mother being a pretty young girl who was “saved” in order to work as a servant for a Turkish family.  Her mother was freed at age 18 when the The American Red Cross found her and arranged for her to go to America.

Rose had three brothers, Phillip, Arthur, and Zaven; Rose was the baby born a few years later.  With brothers as her playmates, Rose was a tomboy and didn’t’ want anything to do with cooking or housework, but she enjoyed school and soaked up as much knowledge as she could all the way through college.

In her senior year, she heard Dr. Harold Hodge from the University of Rochester speak about the physiology of the bone.  She was hooked.  After that she was accepted into the graduate program at the University with a paid research associateship in the Department of Pharmacology and Toxicology.  Dr. Hodge and his staff had been working on the toxicity of chemical uranium since WWII and were part of the group at Los Alamos that worked on the atomic bomb.

Dr. Hodge became her mentor and Rose completed her master’s degree.  She then went on to complete her Ph.D. and got an incredible opportunity to do two years of paid post-doctoral work at the Babraham Research Institute close to Cambridge in the United Kingdom.  Rose says “the world opened to me!”

After work at Ohio State University for a short time and then The Department of Pharmacology and Toxicology at the University of Louisville offered her an associate professorship.  Rose moved to Louisville and continued to work at the University of Louisville until she retired in 1996.