Multiple System Atrophy, or MSA, is a rare complex neuro-degenerative disorder that affects around three people in one hundred thousand.[1] If you have already been diagnosed with one of the two types (parkinsonism or cerebellar) you are most likely already aware of not only this fact, but many of the others that construct our understanding of this disorder. If you are newly diagnosed or the caregiver of a person with a diagnosis then you are likely confused, afraid, bewildered, and quite possibly frustrated. Be aware: You are in good company and not alone in these feelings. This blog is about addressing those feelings in an informed and real way, from the patient’s perspective.
As patients of MSA-c/p we each arrive at a point of acknowledging our clinical diagnosis. The first step of that acknowledgement for me was feeling all those emotions and more when the doctors says, “It would appear that you have MSA.”
After a few days of ruminating on the doctor’s words, and of course, Googling to find information, a realization stuck me hard. I could resist the knowledge, reject the doctor’s professional assessment, succumb to the sad emotions, and the sense of being a victim to an invisible enemy. That is a normal “fight or flight” response we have as humans. Or I could open my arms and embrace this new knowledge and accept it into my life.
For me, I have chosen to acknowledge and accept MSA as a part of me and to Live Into It, rather than live due to it.
Living into MSA implies accepting the reality and all the ambiguity that comes with it.
Living into MSA means setting aside the feelings of pushing back against it, rejecting, fighting, or denying it.
This is not to say we give up or give into the disease. Rather, I am recognizing that there are very talented and intelligent people working very hard at trying to find inroads to this disease: cures, responses, and therapies. I am trusting that organizations such as MSA-Coalition with their dedicated team, will alert us to new research findings and medical trials.
I realized that everyday that I could spend pushing back or searching for a cure or a miracle drug was a day lost to the disease and not a day lived in the present. In a sense, MSA was out to steal the only real thing I had going for me — time.
The research facts are clear about answering how long. The answer: Not long enough.
The one question every one of us who have been diagnosed has asked is, “So what’s the prognosis? How long?” The doctor waffles in response, “It’s hard to say.” That is the first piece of ambiguity I sought to slay. The research facts are clear about answering how long. The answer: Not long enough. For me, that information was the most powerful motivator in helping me to shift my view toward focusing on the present and living into MSA.
Kyle Bryant[2], author of Shifting into High Gear (2019) and a patient living with Frederick’s Ataxia, regarded his reality as an opportunity to “thrive … and live in the moment” (p. 168).
Living into MSA implies that you see this as a rare opportunity — as rare as the disease itself — and live in the present, control the destructive ambiguity, and to become comfortable with new person you are and are about to be.

[1] Oritz, F. et al (2022) report the prevalence as 0.6 -0.7 cases per 100,000 for MSA-P & 3.4-4.9 cases per 100,000 for MSA-C
[2] I will share more about Kyle Bryant and his inspiring story in a later blog.
*Kyle Bryant's photo is from promotional material for the movie,
The Ataxian (http://theataxianmovie.com/rider-bios/ )
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