Ann sometimes forgets that she cannot simply stand up.

In her mind, she is still the woman who moved across states to help raise her grandchildren, who traveled every year with her Navy “bootcamp” friends, and who walked to church on Sunday mornings. So there are moments—small, quiet moments—when she sees something across the room and thinks, I’ll just grab that. And then her body reminds her. Her muscles do not answer the call the way they used to.

It started subtly. Three or four years ago, she noticed she wasn’t walking quite right. There were urinary accidents on the way to church—embarrassing and confusing. Her balance felt unreliable. At first, none of it seemed connected. Maybe it was neuropathy, maybe just age. But Ann felt in her gut that something wasn’t right, and she started searching for answers.

The local neurologist told her it was neuropathy and left it at that. Ann didn’t accept that diagnosis. “It is more,” she insisted.

So Ann did what she has always done in her life—she took initiative. She referred herself to Vanderbilt, nearly three hours away. At that point, she could still walk. She could still make the drive.

It took about two years from those first appointments until she received a diagnosis. When it finally came, it came bluntly: “You have MSA, multiple system atrophy” the doctor told her. “You have about five years left to live.”
 

From diagnosis to acceptance

Ann had never heard of MSA. The physician hadn’t provided a gentle explanation, or a roadmap of where to go from that diagnosis. Just a timeline and a door closing as they left the room.

That evening, Ann called a family meeting and explained what little she knew. Her daughter-in-law immediately began researching while still on the phone, typing frantically and reading anything she could find to learn more. What they found was disheartening - MSA is rare, progressive, and incurable.^1,2,3 It has symptoms that overlap with Parkinson’s disease, including slow movement, rigid muscles, and poor balance, but it’s not Parkinson’s.^1-2,4-8 The decline for people diagnosed with MSA can be swift and unpredictable.^1-4

Ann remembers doing her own research, too. But the more she read about MSA, the less she felt she understood. “It was so unknown,” she said.

That’s partially because MSA is an orphan disease, which means it only affects a very small percentage of the population. For example, in the U.S., only about six out of every 1 million people will be diagnosed with the disease annually.¹ However, due to the age of onset for MSA, typically between 55-60 years,^2,3,6 that number increases to approximately 30 out of every 1 million people over the age of 50.^1,5
 

MSA is characterized by a complex and progressive set of symptoms that impact movement, balance, and autonomic bodily functions, such as blood pressure and urinary functions.⁷ The rapid progression of MSA can profoundly impact the daily lives of patients and their caregivers. MSA has no formal treatment guidelines or currently approved treatments.^2,6,8,9

Ann did become aware of available clinical trials at the time she was diagnosed. After qualifying to participate, she joined one, and then another. She still has hope—not only for herself, but for others diagnosed with MSA or those who will be diagnosed in the future. Slowing the disease would mean giving precious time back to everyone whose life is being shortened by this condition.

Today, Ann believes she is in the final stage of MSA, but what she doesn’t know is how long that stage will last. That uncertainty—the not knowing when she might become fully bedridden—is one of the hardest parts.
 

Finding a new normal

Before MSA, Ann was fiercely independent. No one worried about her. Now her husband has retired to care for her full-time. Family members rotate in and out, passing what they jokingly call “the baton” of caregiving.

They renovated the bathroom early—adding grab bars and converting to an accessible shower—while she could still walk. That foresight has allowed her to remain in her home even as her motor skills have deteriorated.

Ann tries to be as normal as possible. She sits at a table during the day and does her puzzles, reads the paper, and preserves her routine. She and her family carefully ration energy, protecting mornings so she doesn’t exhaust herself too soon. There are no “bad days,” she insists, just errors.

She and her husband still watch television together every night. They maintain a schedule and find joy in small, ordinary moments.

Her grandchildren treat her as though she doesn’t have a disease. They used to run and jump into her arms with bear hugs, but they have learned to be gentler in showing their affection.
 

Choosing joy

One burden she didn’t know to expect was how illness changes other people. “It scares people,” she says. Some friends drifted away - maybe they didn’t know what to say, or maybe they didn’t want to witness decline. But others stayed—like Nancy, the neighbor who comes by almost daily, and Ann’s Navy “bootcamp” buddies, women she met at eighteen, who still gather on group Zoom calls to stay connected.

MSA has taken her balance, her autonomy, and eventually it may take her ability to sit at the table and do her puzzles. But it has not taken her will. It has not taken her humor. It has not taken her belief that every day—no matter how limited—still belongs to her.

When asked what she would tell someone newly diagnosed with MSA, her advice is simple: enjoy your life. Get outside. Breathe the fresh air. Prepare your home for what is coming. Keep moving while you can.

“You have choice,” she says softly. And every morning, Ann chooses to stay seated at the table, sunlight on her shoulder, grandchildren in the next room, and find joy.