Remembering My Mom During Parkinson’s Awareness Month

Parkinson’s Awareness Month, observed in April, is an opportunity to increase awareness about the illness and its symptoms, as well as to support patients, their caregivers, and continued research. Parkinson’s disease is a long-term neurodegenerative disorder that affects predominantly dopamine-producing neurons in a specific area of the brain. Tremors, movement, balance difficulties, limb rigidity, delayed muscle action and sometimes loss of cognitive function can all be symptoms of this slowly advancing but devastating illness.

According to the Parkinson’s Foundation, more than 10 million people worldwide are living with Parkinson’s disease. Approximately 60,000 Americans are diagnosed with Parkinson’s disease each year; close to 1 million Americans are already living with the disease; and this number is expected to increase to more than 1.2 million by 2030.

This disease impacted my family when my mom was diagnosed with Parkinson’s over 20 years ago. We lost her in December as she succumbed to complications related to Parkinson’s. We are a close family, and it has been unimaginable for us to watch her decline from a vibrant, energetic, fit and engaged mom who raised 5 children and grammy of 8, to someone who has no control over her motor functions and full-blown dementia. Her once sparkling bright green eyes and her ability to charm everyone she met with her amazing smile, faded due to the physical and mental deterioration brought on by the Parkinson’s. Although I am grateful that she is no longer in pain, the family celebrations for the first time without her are truly bittersweet.

What I’m eternally grateful for, and one of the primary reasons I’m proud of our work at the California Biotechnology Foundation is that through the extraordinary efforts of her doctors, caregivers and the innovative research and development of Parkinson’s treatments and medicines, she spent most of her last 20 years being able to live life a robust life. Even with Parkinson’s she continued volunteering, gardening, skydiving and having more time with her family. Most importantly, my mom’s grandchildren got to spend more time with the wonderful, creative, evergreen influence that was their Grammy. She has had such an important impact on all of us, sharing rich family history and traditions and a love of both theater and science that still profoundly influences all of us today. I miss her desperately, but through Parkinson’s treatments she lived a longer, higher quality life.

While Parkinson’s disease is still incurable, life science discoveries continue to offer the promise of better treatments, and perhaps someday a cure. Just this month a report was published on efficacy of stem cells to treat Parkinson’s. Scientists now have a better understanding of what’s happening within the brain and how to help slow down the progression of the disease. Other treatments of Parkinson’s disease symptoms has come a long way including deep brain stimulation and focused ultrasound, which can help alleviate symptoms. Researchers are also trying to find ways to reduce alpha-synuclein, a brain protein linked to Parkinson’s, and to diagnose the disease before symptoms show up.

Visit these links for more information about understanding Parkinson’s disease, living with Parkinson’s, resources and support, and advancing research and treatments.