By Dorothy, Paraneoplastic cerebellar degeneration, United States, February 29, 2020

Sandy, then and now

On behalf of my brave sister Sandy, I want to raise awareness of this horribly disabling syndrome, Paraneoplastic Cerebellar Degeneration. There has been very little research done on this syndrome, which foreshadows, or predates, the presence of cancer. As if cancer isn't bad enough, my sister has suffered in ways that most cancer patients won't. This is rare, and no two cases are alike. Our journey for answers began at UCI Medical Center, CA in 2017, brought us to the Mayo Clinic in Rochester, MN in 2018 and ultimately she was treated for cancer at Roswell Cancer Institute in Buffalo, NY within 9 months of the onset of her symptoms. Sandy lived in California at the time of her diagnosis, she was a strong, independent advocate for her family and friends, loved to travel and bring joy to so many others. Now, over 18 months since her cancer treatment and despite intensive therapies, she still struggles with activities of daily living. She is currently wheelchair bound and completely dependent on others for her basic needs.She resides in a skilled rehab facility near her family in NY state. Some people wait years until the cancer is found. And in the meantime, the impact on their neurological function debilitates them for life. This journey for answers is elusive and so frustrating. Sandy is a loving sister, aunt and friend to so many. This illness has affected her life in the worst way, and her story deserves attention.

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