“What’s happening to me,” my mom queried one day after falling down a flight of stairs. Dad had found her at the bottom of the stairs, her head gashed open and several bones in her hand broken from the fall. She hadn’t felt dizzy, she had no warning, she just lost her balance.
This was the beginning of fall, after fall, after fall. It was always the same story, no dizziness, no warning, just repeatedly losing her balance. This was also the beginning of our perplexing journey to find the root of what was causing our mom to fall so often.
Our visits to many doctors offices, including neurologists and gerontology specialists, in Buffalo, New York, resulted in a diagnosis of Parkinson’s Disease. But it just didn’t seem to fit, and any medications prescribed never helped.
Then, my sister Kim came across an article in a Caring Today - a magazine for caregivers. As she read it to me, we both concurred that we finally had our answer. This little known disorder perfectly described our mom’s symptoms. Unfortunately, it meant she could have a serious neurological disease called Progressive Supranuclear Palsy (PSP). She had every symptom – frequent falls, vision problems, slurred speech, and difficulty swallowing foods. We noticed major slowing down and a shuffling gait, something we came to affectionately refer to as the “Bernie shuffle.”
We tried to bring some levity to the increasing limitations upon her, but as we returned to the doctors with our new found insight, we were met with an unhearing audience. These specialists were not familiar with PSP. Our frustrations mounted as her condition became worse, and her still active mind became increasingly encumbered in her body that no longer wanted to work.
We watched mom’s life and freedom being stripped away. She had always been vibrant and active. She did all the right things to keep herself healthy. Mom ate healthy foods, took nutritional supplements, exercised, walked, and didn’t abuse her body with unhealthy habits. She had always been there for all of us, whatever our need. Mom was our solid rock; one on whom we could depend.
Now, the roles were becoming reversed and mom was dependent on us for everything. She fell many more times, breaking her neck and a hip. She endured multiple surgeries and weeks of rehab in nursing facilities. Her life narrowed and she was confined to a lift chair and a hospital bed, as we struggled to keep her safe.
Finally, after three frustrating years, my sister Kim decided that we should take mom to the Cleveland Clinic for an evaluation. We made the appointment, booked our hotel, and planned on being there for three days of testing. To our amazement, the neurologist did a “doorway diagnosis,” and mom, dad, Kim, and I were out of there in 40 minutes! The neurologist recognized PSP and referred us to the Foundation for PSP | CBD and Related Brain Diseases (also known as CurePSP) in Maryland for much needed information. They have been a huge blessing to us with booklets, newsletters, education, and support. What a relief to finally have the name for this horrible illness, and answers to so many questions!
We learned about getting hospice in to help, a ChatterVox to amplify mom’s weakened voice (dysarthria), a thickening agent to make swallowing easier, and many ideas to keep mom safe. Dad became mom’s main caregiver, as she increasingly needed 24/7 care. We all helped out as we were able so he wouldn’t end up in caregiver burnout. Their home began to look more and more like a nursing facility as the disease progressed.
Despite it all, dad and mom never complained. They were an example to everyone of suffering well. They endured PSP with dignity, with faith in God, and with graciousness of spirit, as PSP deteriorated mom’s body, dulled her emotions, and slowed her mind.
In many ways, we grieved the loss of our precious mom while she was still alive. We also honored her while she was still alive. Rather than waiting to honor her in a eulogy at her funeral, (which we also did), we wrote and spoke our tributes to mom on significant occasions in her life. On her 78th birthday, as the whole family gathered around, we expressed our gratitude and appreciation to her and blessed her for all she had sown into our lives.
At times, we laughed hysterically together. At other times, we cried and openly shared with mom the realities and expectations of her illness. We knew she would have wanted it that way.
We cared for mom, in her home with the help of hospice, until her death. The final two weeks we kept a constant vigil with mom as all the family, relatives, and friends came and went. We took turns spending the night, singing, praying, holding, and having wonderful times of closure with her.
We are grateful to CurePSP, the Cleveland Clinic, and Hospice of Buffalo, for meeting us at our point of need. We so wished we had known earlier what it was our beloved mom was struggling with. Much pain and suffering could have been spared. Now our passion is to increase awareness of PSP, so that others can be spared the anguish of not knowing what’s happening to their loved one.
Mom was a giver and had a servant’s heart toward others, and her legacy of living continues after her recent death. She was an organ donor, and also donated her brain for research to the CurePSP Brain Bank, known as the Eloise H. Troxel Memorial Brain Bank at the Mayo Clinic in Jacksonville, Florida. They recently confirmed the diagnosis of PSP for us.
One of the ways my mom’s legacy continues to be life-giving happened on February 16, 2008. Seven bands gathered in Tonawanda, New York to belt out the blues for twelve hours straight to benefit CurePSP and the American Cancer Society in support of one of my friends who lost their mother to cancer.
We all celebrated mom’s 80th birthday - her last - this past summer. It had been five years since that first major fall that forever altered our lives. Her death was as much filled with love as her life was, and her homecoming was a celebration of a life well lived!