For 34 years, my Thurston spoke out on behalf of male breast cancer, using his experience to educate others about a disease that is considered to be “statistically insignificant.” Less than one percent of breast cancer occurs in men. His position? “I am not statistically insignificant, and I will use what is left of my life to raise awareness. I had cancer, but cancer never had me.”
Multiple System Atrophy, a rare disease, has about 1,900 cases diagnosed yearly in the United States. There is no cure, only treatment of symptoms. MSA is particularly difficult to diagnose because symptoms develop slowly; the pieces of the puzzle come together only as a neurologist specializing in MSA completes the picture.
MSA is a neurological illness that causes the degeneration of nerve cells in the brain that control movement, balance, blood pressure, heart rate, speech, swallowing, sleep and other activities considered to be automatic. Degeneration is the key word. People diagnosed with MSA generally live seven to 10 years post diagnosis. Thurston lived 18 months when the diagnosis became clear, causing me to look back to events and disorders that eventually led to the delayed diagnosis.
His first symptom, beginning in 2010, was a sleep disorder. Violent dreams disturbed his sleep, dreams that he acted out, cursing and yelling, even throwing himself out of bed. Called RBD (REM Sleep Behavior Disorder), can cause injury to the patient or to his bed partner. Terrified one night by his uncontrollable violence, I slept in another room. Once diagnosed, medication eliminated this symptom.
Four years later, Thurston was diagnosed with a paralyzed vocal cord. Surgery restored his voice, but in one month, it disappeared again. He also experienced difficulty swallowing. One year later, Thurston began to struggle while navigating his way from light into darkness. He fell a number of times walking from the brightness of our den into the darkness of our bedroom.
We saw a neurologist after this symptom appeared. After a thorough examination, the diagnosis was early stage Parkinson’s disease. Then Thurston began falling after standing from a sitting or reclining position. After falling three consecutive times in five minutes, I called 911. Several days in the hospital resulted in a diagnosis of orthostatic hypotension, when the blood pressure drops severely, causing falls.
I remember the neurologist’s words when I notified him of this new symptom: “We may be dealing with MSA. I’m referring you to my associate.” I felt dread in my heart and cried as I researched MSA. It was not a pretty picture. The neurologist who specialized in MSA confirmed the diagnosis in March 2016.
Post diagnosis, Thurston developed congestive heart failure and received a pacemaker when his heart repeatedly stopped beating one evening. Progressive physical weakening over the next 10 months led to his death as his heart failed and eventually stopped on Aug. 2, 2017.
The only thing that never weakened was his precious spirit – always appreciative and thankful, always encouraging, always loving, always sweet and able to find humor. Our final 18 months were intimate in the ways that truly matter, drawing us closer as we faced our “till death do you part.”
The constant ache of loss plagues me. During this season of gratitude, however, I have deep joy for the life we shared and for the gentleness of his spirit.