Susan’s Story, a soon-to-be-released documentary about a woman and her family living and dealing with Fronto Temporal Degeneration, Early Onset Alzheimer’s Disease and Progressive Aphasia, makes a clear statement that in our lives we are all connected. Russ Kirkpatrick of Kirkpatrick and Kinslow, the documentary film-makers goes into the lives of Susan Suchan, her daughters, Heather and Emily, her sister, Nancy Weber and Nancy’s husband, Terry as they each and collectively face the struggle of a loved one with a degenerative brain disease.
What makes me aware that there is less than six degrees of separating me from Susan is the fact that I work with her sister, Nancy Weber, who is a Brain Injury Case Manager at the Neurologic Rehabilitation Institute. As Nancy became more involved in Susan’s disease and took on greater responsibilities with her husband, Terry, as caregivers she would bring vignettes of Susan’s life to work. Eventually, I got to meet Susan a couple of years ago and through these brief meetings and through Nancy and Terry I became more aware of Susan’s mission to “Bring a face to the disease” and her desire to “…speak now to those who have no idea about the disease (Fronto Temporal Dementia) before I can no longer talk to them…”. Susan is active in the Alzheimer’s Association and the Association for Fronto Temporal Degeneration. She travels to speak at national conferences and tirelessly connects with others living with the same disease through the internet. Her advocacy is a platform to increase awareness and bring a focus on these diseases to promote change.
Nancy refers to Susan’s disease as “losing her best friend” and looks to the completion of the documentary as one might consider completing a photo album of intense memories that she and Susan have shared throughout their lives. There is something very important that is shared through Susan’s Story about life and about loss which is best heard through the voices of Susan and the people closest to her talking about the mutual experience. Until the documentary is released in 2017, there is a brief trailer posted on Susan’s Facebook page which is worth watching. Click here to see the trailer.