Caring for Mother: Early-onset, Other Dementias, Memoirs, Other Dementias, Parkinson’s Dementia.

By George Ackerman, PhD, JD, MBA, MS, Florida, US

My mother, Sharon Riff Ackerman, suffered with Parkinson’s and dementia for fifteen years. The last four were the worst and contradicted the doctors’ self-confident pronouncement, “No one dies from Parkinson’s.” She passed on January 1, 2020, and my wife and I started togetherforsharon® as a family to keep her memory alive and especially to share the message of Parkinson’s Awareness and hope for a cure.

Despite it being too late for us, I did not want to disappear and give up. In my despair, I discovered a new, unwavering strength. After my job duties, I devoted myself to researching books and articles, searching throughout the Internet, consulting with medical professionals, and advocating. Yes, these efforts helped me deal with my grief, but they also helped me learn about the complexities of Parkinson’s and attendant illnesses, like dementia, the latest research, and the stories of countless others touched by the disease. This work brought into my life a whole new world of inspiring individuals who were also fighting and never giving up until we find a cure.

And so I became an advocate. I started by sharing my mother’s story, my family’s journey, and the impact Parkinson’s had on our lives. I’ve “gotten myself out there,” speaking at local events, writing articles for newspapers, contacting experts, and, with my passion and determination, inspiring others.

With other dedicated individuals, I’ve organized fundraisers to support research for a cure. I’ve met scientists and researchers who are tirelessly working to unravel the mysteries of Parkinson’s. I continue to pour my heart into these efforts, resolved to honor my mother’s memory by making a difference for others battling the same disease.

I recently published my memoir/help for others book on my experiences with my mother and her PD and dementia. In A Son’s Journey: From Parkinson’s Disease Caregiver to Advocate, I share my sad story to tell others and advocate for awareness because I believe we can reach a cure.

Through my advocacy and the power of storytelling, I believe I have helped change the narrative around PD, bringing awareness not only to the physical challenges faced by those with the illness but also to the emotional toll it takes on families.

Building a Website and Podcasts

The togetherforsharon® website has a vast amount of resources—collection of interviews, partners, and other materials. And we also distribute, free, our memory bands at live Parkinson’s awareness events to remind people of the great need for more research and a cure.

The togetherforsharon podcast is hosted by my wife, Grether Ackerman, who, with me, was also my mother’s caregiver. We started this podcast to help promote those diagnosed, advocates, and individuals who are changing the world for Parkinson’s awareness and hope for a cure. I have interviewed over 500 people throughout the world who are associated with Parkinson’s in some way.

These people include those who have been diagnosed with PD and are living with it, both celebrities and “regular” people. Others are caregivers, physicians, leading scientists, and researchers. And others are passionate advocates independently and as part of organizations and institutions. I keep discovering new fighters throughout the Parkinson’s community, and they are all willing to share their experiences and thoughts in hope for a cure. It is too late for me and my family, but my mother lives and shines on through others.

I started a second podcast called “Q and A with Sharon’s Son, George,” in which I appear individually with authors and others on the topics of Parkinson’s disease and dementia and help promote their work to the world. And I am honored to be invited to join AlzAuthors. Together we can bring positive change to this important topic.

Sadly, Parkinson’s disease is the fastest growing neurodegenerative disease throughout the world. We need to put an end to Parkinson’s, and through advocacy and by joining with those in and outside of the PD community we can accomplish this mission. An exciting step in the right direction, for the first time in US history, is House of Representatives’ approval in December 2023 of the National Plan to End PD. This bill is slated to go to the Senate in 2024. Passage of the bill will provide for greatly needed help for many and grants for research and innovations to end PD and will change countless lives for the better – those diagnosed, caregivers, and researchers.

The Mission

I believe no family or individual should go through what my mother and our family did because of PD. Those living with Parkinson’s, Alzheimer’s, and dementia should never feel like they are alone. Together we can help end the stigma that often accompanies these diseases.

A great deal of the stigma exists because of lack of awareness and results in damaging effects on the sufferers. These include desire not to see other people because of possible embarrassment, low self-esteem, depression, panic, and overall decreased quality of life. My mother suffered from all of these. The National Plan noted, “Stigma associated with the diagnostic labels of dementia and mild cognitive impairment can have a significant and negative impact on interpersonal relationships, interactions with the health care community, attitudes about service utilization, and participation in clinical research. The impact of stigma also extends to the family caregivers of individuals bearing such labels.”

So many people are on journeys of suffering from these devastating diseases throughout the world, and their voices need to be heard. This is a global fight. The fight needs all of us together. Together our voices are so much stronger. I will never stop fighting and advocating until we find a cure.

About George Ackerman

Dr. George Ackerman (Sharon’s son) is from Brooklyn, N.Y. Now residing in Florida, he works in the fields of law, police, and education. George lost his mother, Sharon Riff Ackerman on 1/1/2020 due to Parkinson’s Disease.

George wanted to honor his mother and continue to help in the Parkinson’s awareness cause and did not know how to bring change. He started TogetherForSharon® with his family for the purpose of keeping his mother, Sharon Riff Ackerman’s, memory alive, and to share the message of Parkinson’s Awareness and hope for a cure.

Today, togetherforsharon® reaches thousands of individuals across the country for PD Awareness. George currently interviews individuals throughout the Parkinson’s community including various foundations, caregivers, and Parkinson’s warriors to help share their stories and causes on their podcasts.