My Nonprofit Reviews
Review for Multiple System Atrophy Coalition, Charlotte, NC, USA
The MSA Coalition
In 1994/95 I was diagnosed with MSA at the Hershey MedicalCenter in Hershey, Pennsylvania, although at the time the disease was called OPCA. Regrettably, most people only live nine years after diagnosis, with some lasting as long as 18 years. Some of these data were derived from researchers affiliated with the MSA Coalition, which has done a great deal to bring attention to this devastating and incurable disease. And believe me, anyone who suffers from ataxia and related symptoms has a very difficult time of it. In my case, the causal agency for my symptoms is now thought to be cerebral ischemia, TIAs, and associated cortical atrophy, and not MSA per se. The vascular problems have destroyed much of my coordination and are now severely impairing memory and cognitive functions. Indeed, it is unlikely that I will recall having written this piece in a few days or weeks.
The point is, MSA is very difficult to properly diagnose and nearly impossible to treat at present. It can mimic many conditions, such as Parkin's Disease and a wide range of other neurodegenerative processes. I lived for over 20 years under the MSA diagnosis, and there were sudden flareups that made it impossible to do much of anything. But unlike most MSA patients, I kept bouncing back. It would often take some time, but many functions eventually returned. That doesn't usually happen with MSA, although that umbrella term includes numerous variants. With me, the recoveries were probably associated with regeneration following multiple small vascular traumas, although I'm now at the stage wherein a letter like this can take some days to complete.
The MSA Coalition provided me with much information and hope over the years, with hope being the only thing that kept me going. And although it is no longer felt that MSA is the cause of my decline, I still feel kindred to those who are suffering from it. In truth, all neurodegenerative processes are struggles that few healthy people can imagine. One wakes up exhausted, dizzy, and unable to walk a straight line--on those days when walking is an option. I am blessed to be as able as I am, and my heart goes out to those MSA sufferers who know only the long gradual decline that characterizes the illness. My mind is now entering into a phase that often makes it impossible to recognize my own caregivers and doctors. Yet I feel blessed. I am part of a community that knows that trying is fundamentally important to finding meaning and joy in this life. We are not alone as long as there are organizations like the MSA Coalition to help us. We have our friends, our families, and each other. And no matter what the future might bring, those blessings give us reason to go on. Hope lives.