Our story begins in early 2017, around my son‘s 1st birthday. My son was sick so my parents decided to make the drive to Athens, OH to spend time with the sick birthday boy. My parents lived in Brandon, FL so we only saw them a few times a year. It had been about 5 months since their last visit and I immediately noticed some changes in our dad. Some background on my dad: he grew up playing football and went on to play both high school and college football. Ever since I can remember, he lifted weights, boxed, biked, ran and tried various martial arts. For a 66-67 year old man, he was in excellent physical condition.
Over the course of the week, I noticed my dad’s hands trembling, a raspier tone in his voice and a rigid gate. Nothing much was said about the changes we noticed in our dad, however, the next week my dad told me that he had seen various doctors regarding similar changes he had been noticing (ENT, primary care, urologist). Each of the doctors scratched their heads because dad’s test results were as expected and they recommended he see a neurologist. After numerous tests, etc, the neurologist gave a misdiagnosed it as parksinons disease.
The next 6 months are a blur. Our dad‘s health continued to decline and the parkinsons medication that the nuerologist prescribed seemed to have little to no effect. Because he had so many additional symptoms that are not typical parkinsons symptoms, we all questioned the diagnoses... and all the while, my dad‘s symptoms continued to get worse. Finally, after seeing numerous neuro-specialists, he was diagnosed with Muliple System Atrophy (MSA) (formally known as Shy-Draggers Syndrome and sometimes referred to as atypical parkinsons). If you’ve never heard of MSA, you are not alone - it’s a disease that shuts down the brains communication to systems within the persons body. they include speaking, breathing, chewing, swallowing, releasing one’s bladder and virtually all muscle movements. The symptoms “early on” include dry mouth, not having the ability to sweat and night terrors.
As a result of the brain not telling his body what to do, he ultimately got UTIs, pneumonia and blood clots. He ended up in the hospital for 16 days where he then lost his fight to MSA on March 14, 2019 and became yet another MSA warrior. Our family feels robbed of precious years with this wonderful dad, husband, papa and brother and we are not alone. There are no survivors! We encourage each of you to go to the MSA coalition website (www.multiplesystematrophy.org) to learn more about this fatal neurological disease that is unfortunately under studied, under funded and misdiagnosed.
This is only my story as my mother, brother and my dad‘s sisters have yet theirs to tell. We all thank you all for your support.
