An Empty Seat at the Table

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We need everyone’s voice in the fight for a Parkinson’s cure.

As I advocate in memory of my mother, Sharon, who lost her battle with Parkinson’s, I’ve faced unexpected challenges. The fight for awareness and a cure has not always been inclusive, especially for those of us who have lost loved ones to the disease. But our voices still matter and are still powerful in this fight.

While we cannot bring back our loved ones, we can unite with those currently battling Parkinson’s and their caregivers to push for a cure. We must persist, even in the face of negativity, in honor of those we’ve lost. It's time to bring awareness to the voices that have been shut out of this conversation and use our loved ones’ memories to support others and advocate for a cure.

An Empty Seat at the Table is a behind-the-scenes look at the obstacles faced in my journey and a call for those left behind to continue to use their voices to fight this disease in the name of those lost to PD so they will never be forgotten. It is also a compilation of interviews in memory of loved ones lost to PD and artwork by Parkinson’s artists as a way to visualize the struggles of the loss of our loved ones and the difficulty that we sometimes face advocating in their memory.

This book is about voices. Ours and our loved ones that were lost to Parkinson’s disease. Their battle may be over, but ours, as those left behind, are still going strong. You will experience a mixture of artwork and interviews in memory of loved ones and a call for those left behind to continue to use their voices to fight this disease. Sadly, I have found we are not all truly a family in this fight for a cure. Since my loved one passed, there is not always a seat at every advocacy table for me anymore and it is heartbreaking, because we need everyone, together, to push toward a cure.     Contents Introduction: A Journey Together............................................................... 1 Chapter 1: In Memory................................................................................ 4 Caregiver to Advocate................................................................... 4 Lasting Impact.............................................................................. 6 A Voice for the Voiceless................................................................ 8 In Memory................................................................................. 14 Chapter 2: The Forgotten Ones................................................................. 17 F . . . Parkinson’s......................................................................... 18 Still Grieving Today.................................................................... 19 Lack of Grief Support for Past Caregivers.................................... 21 There is Still Hope for Our Voices............................................... 23 In Memory................................................................................. 27 Chapter 3: Are We All in This Fight for a Cure Together?.......................... 31 Advocacy is Open to Two Groups............................................... 32 Not a Seat for Me or Others Like Me........................................... 33 Never Forget............................................................................... 41 Thanks but No Thanks............................................................... 41 Wider Awareness Needed............................................................ 47 Pharmaceutical Companies......................................................... 47 Politicians, Celebrities and More . . . Oh My!............................... 48 Celebrities.................................................................................. 48 Politicians................................................................................... 52 A shout out and a call out?.......................................................... 57 Advocacy Awards and Publishing................................................ 59 In Memory................................................................................. 64 Chapter 4: Skepticism Within the PD Community.................................... 67 A Continued Lack of Inclusion................................................... 68 Doubt About Our Efforts........................................................... 69 In Memory................................................................................. 78 Chapter 5: The Dark Side of Social Media................................................. 82 Global Advocacy......................................................................... 82 Evils of Facebook Even Within Advocacy..................................... 83 Support Within Social Media...................................................... 91 A More Supportive Support Group............................................ 94 In Memory................................................................................. 96 Chapter 6: Hope Pushes Us Forward......................................................... 99 World Parkinson Congress........................................................ 100 The Plan to End Parkinson’s Disease......................................... 103 In Memory............................................................................... 110 Chapter 7: Keep Fighting in Their Memory............................................. 114 Togetherness Brings Us Closer to a Cure................................... 114 Trying to Bring Positive Change, Always................................... 116 Join the Fight............................................................................ 117 Lead the Change....................................................................... 125 The Dream of a Foundation...................................................... 126 Don’t Lose Yourself in the Fight................................................ 128 Mental Health.......................................................................... 128 Burnout.................................................................................... 129 In Memory............................................................................... 131 Chapter 8: Conclusion............................................................................ 133 In Memory............................................................................... 135  

Artwork Credits

I wanted this book to express the importance or artwork, talent, and how so many turned to art due to PD for coping, support, and just creating such beautiful work that truly bring this book to life. I am forever grateful to these incredible artists, support them, and please reach out as see their art for awareness and hope for a cure. Artwork in this book has been provided by artists with PD, advocates, and most importantly, my friends. All artwork has been reprinted with permission of the artists. Figure 1. Ruth Derbin-Knowles, The Empty Chair Biography: I have been enjoying (not) Parkinson’s for over twenty years of life. Painting is new to me, but I believe it helps reduce my Parkinson’s symptoms more than supplemental medications to “decrease my off times” ever have and no horrible side effects. It’s no surprise art therapy is known to help people with Parkinson’s. Lately much of my time is spent creating Neurographic Art—it is a meditative and intuitive artistic process that links the unconscious and conscious minds. Artwork: An “empty chair” represents an object that could be seen, touched, and experienced physically, to come to terms with the emptiness, grief, and trauma. A lone dark wooden chair with a green seat stands against a neutral-toned background. The brush strokes are visible, and the painting presents a simplistic yet evocative composition. Figure 2. Nina Junker, View of a Table Biography: I am a pharmacist from Germany diagnosed with Parkinson’s disease three years ago at the age of forty-seven. My reaction to the diagnosis was quite proactive. I joined social media for the first time in my life and use art to express myself. Artwork: View of a table from above, all chairs but one are facing the table. It is marked with a square which also separates it from the rest of the picture. Figure 3. Dr. Janet Shipton, The Empty Chair Biography: At the age of forty-seven in 2018, I got a diagnosis of Younger Onset Parkinson’s disease. My lifelong passion for art and its therapeutic benefits has intensified since diagnosis, and I enjoy sharing this through workshops, exhibitions, and public speaking. Artwork: I’ve tried to capture “the empty chair” through using charcoal and pastels to give an impression of light coming through a window. The light casts a shadow of the chair like the loss of a loved one casts a shadow over the lives of those that are left. Figure 6. Kendall Fosbenner, A Lack of a Seat at the Table for Advocacy Biography: My name is Kendall, and I have been battling Parkinson’s disease for twenty-two years now. Parkinson’s, although it is a very difficult disease to have and live with, it has been a blessing. I no longer take anything for granted, as it affects every second of every day of my life. It has also helped me find the inner strength to continue my journey in life with this disease. You can either lay down and let it take over your body or you can stand up and fight back! Art has given me my life back! Artwork: In this piece, I tried to capture the loss of the loved one with Parkinson’s disease by showing the empty seat at the table, and how incredibly tough it is for the caregiver and family to move forward. Still trying to carry on their legacy to help advocate for others with the same disease. Figure 13. Linda Silver, A Community of Tulips Biography: I have always been an artist. Ever since I can remember, my happiest times have been creating art. My love of art carried me forward to obvious career choices: an illustrator for Hallmark Cards, a self-employed graphic designer/illustrator, and an art director for local and national companies. I was born in the Bronx, New York. Over the years, I have resided in Kansas City, Missouri; Anchorage, Alaska; and Cleveland, Ohio, but I have spent most of my life in southern New Jersey. After being diagnosed with Parkinson’s disease in 2019, I returned to my love of painting: using color, movement and fluidity has helped me in so many ways! Art is important therapy. I enjoy working on what inspires me and I hope to inspire others to follow their dreams too! I’m enjoying my life despite Parkinson’s. Artwork: We are individual flowers—but like the roots in this field of tulips, we are intertwined. We raise our heads above the earth, supported by the sturdy green stems of family and friends. We are connected by the same root system; we have Parkinson’s disease. When one of us goes away, an indelible hole is left in the PD community—but our roots remain intact and strong.