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Living With Multiple System Atrophy

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Released: August 11, 2026

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A caregiver partner shares the story of his wife’s journey with MSA, from the uncertainty of early symptoms to the reality of diagnosis with a progressive neurodegenerative condition, and shares a message urging HCP awareness and compassion.

Rodney Lee Rastall
Rodney Lee Rastall
MSA Caregiver Perspective

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Key Takeaways
  • Multiple system atrophy (MSA) is often misdiagnosed as a more common progressive neurological disorder such as Parkinson’s disease, leading to extended uncertainty for patients and caregivers.
  • Increased awareness of this rare condition can improve recognition of symptoms and their manifestations, which typically include problems with movement, swallowing, and speech issues.
  • Caregivers for patients with MSA bear a tremendous burden in support of their loved ones; their own support needs should not be overlooked by HCPs.

My wife started showing symptoms of multiple system atrophy (MSA) years before she was diagnosed. She started moving more slowly, taking little shuffling steps, and becoming clumsy. She fell crossing a street she had crossed a thousand times and broke her hand. Her speech became more indistinct as well. She became more removed and depressed, with a lack of desire. However, she consistently denied anything was wrong.

At the time, these seemed like disparate problems. Our primary care provider never asked a question. Nobody was “putting 2 and 1 and 3 and 5 together.”

Then, in 2019, at a family event, she tried to reach over to catch our granddaughter running out the door and fell over like a telephone pole. She maintained she was fine and just wanted to rest. Knowing what we know now, that she had experienced a stroke, we should have gone to the ER. 

After the event, we went to the hospital, and that began our journey of trying to figure out what was wrong. She was treated for a broken rib, anemia, and severe dehydration, but after she was stabilized and considered ready for release, she could still barely walk. I asked, “Have you checked to see why she cannot move?” She was having real difficulty moving, and investigating the cause was almost like a revelation to them. Our insurance dictated she be discharged before any test results came in. I had to basically carry her into the house that day. I did not know how I was going to care for her long term at that level of dysfunction.

The next day I was called to have her readmitted as soon as possible, and we were told she had had a stroke. I asked the neurologist if the stroke was responsible for her movement problems, and he said no, that she had several ministrokes but not enough for the level of impairment we saw. “So what’s wrong with her?” I asked. "We can run some more tests.” None had been planned to my knowledge; I had to dig for answers and advocate for testing and treatment.

Months later, she was diagnosed with Parkinson’s disease. We went almost a year thinking she had Parkinson’s: that was the identity she had and what we were living with. At each appointment, the neurologist would say, “Stand up. Take a couple of steps. You are doing great. See you in 3 months.” Meanwhile, at home I could see she was rapidly getting worse, despite having a variety of medications to treat her variety of symptoms.

I wish that healthcare professionals (HCPs) at that time had been more thorough. It is not enough to judge a progressive neurologic disease from a few steps in an examination room. Ask what is happening at home. Ask about falls, swallowing, speech, transfers, driving, blood pressure symptoms, medication response, and how much help someone needs with basic daily tasks. Ask the caregiver as well, because they may see a very different picture than the one the patient reports.

No one referred us to a specialist. I did the research on my own to find a movement disorders specialist. It took months to get an appointment because he was one of the few in our area.

When we finally saw him, he asked just half a dozen questions that no one had ever asked before. He asked her to stand up and close her eyes. He gave her a little push, and she almost fell. That was when he told us, “You do not have Parkinson’s. You have MSA.”

What changed with the MSA diagnosis was that we had an answer. After a little research, we soon understood this was a disease with an expiration date; not only is it terminal, but there is no current treatment to extend life expectancy. I avoided telling her it was deadly. I knew she would search for an answer when she was ready. It took a long time to acknowledge the outcome together, and it was very sad when we did. There are no miracles that happen with MSA. In a strange way, knowing what was wrong, despite the terrible outcome, took some of the stress off.

But I had no idea what would lie ahead in terms of the difficulty of taking care of her.

HCPs can help by giving families a realistic picture of what may come next without overwhelming them all at once. I wish someone had sat down with me, looked me in the eye, and said, “This is what your life is going to be like.” I needed the hard news delivered in a soft way. I needed more than a brochure. I needed a reliable source of information, a person to call, and guidance about equipment, swallowing, nutrition, mobility, caregiving, and end-of-life decisions.

The burden of MSA just got progressively heavier. My wife went from driving to using a walker, then a wheelchair, then getting out of bed only to transfer to the toilet. Toward the end, she just stayed in bed. We installed a ramp and a chair lift so she could remain at home. Once, the battery went out in the chair lift, and we almost could not get her upstairs. That showed us how dependent our lives had become on a single piece of equipment.

When you tell a family that their loved one has MSA, recognize that you have just laid something really, really heavy on them. Say, “We know this is bad news. I am so sorry,” but say it with conviction.

HCPs may not be able to stop the disease progression, but they can help families plan ahead. Do not wait until the patient can no longer climb the stairs to discuss a stair lift, a downstairs bedroom, a wheelchair, a hospital bed, or transfer equipment. Do not wait until the caregiver is physically overwhelmed to teach safe lifting and turning.

My wife’s swallowing became more difficult, and she lost almost half her body weight. She initially said, “I do not want to get a feeding tube,” but she changed her mind. The PEG tube saved her life, but it introduced a whole new level of responsibility for me. There is a learning curve with PEG tubes, without a doubt.

HCPs can help by monitoring swallowing and weight early. Ask about coughing during meals, difficulty swallowing pills, avoiding certain foods, taking longer to eat, and recurrent choking. Make referrals before a crisis. When discussing a feeding tube, recognize that it is not only a medical decision, but something that profoundly changes daily life for both the patient and caregiver.

We had home visits from rehabilitation and speech therapists, but the criteria to continue these therapies required that she show improvement. If she did not improve, the therapy would be discontinued. But nothing gets better with MSA. Everything gets harder.

For a disease like this, success should not always mean improvement. Sometimes success means maintaining function a little longer, preventing aspiration, reducing falls, preserving communication, or teaching the caregiver how to manage safely.

Caregivers need to be treated as part of the care unit. Ask, “How are you managing?” Ask whether they are sleeping, whether they have help, and whether they understand what to do next. Then listen to the answer. Compassion makes the caregiver feel heard, not alone, and cared about. It is hard to remain positive and put on a happy face when you are in such a sad situation.

An online caregiver group made all the difference for me. The other caregivers were my people. We were a small tribe, but a dedicated and supportive tribe. They taught me how to turn my wife, how to change a diaper, and how to handle tasks I was never taught by the medical community.

My message to HCPs is simple: get MSA on your radar. Look for the pattern: slow movement, little shuffling steps, unexplained falls, poor balance, indistinct speech, swallowing difficulty, autonomic symptoms, rapid progression, and a response to Parkinson’s treatment that does not seem to fit. Listen when the caregiver says the patient is declining faster than expected.

Someone may walk through your door before they ever reach a movement disorders specialist. You may be the person who recognizes that the symptoms line up, asks the question no one else has asked, and gets that patient referred sooner.

MSA is rare, but for those it affects, it takes away a mother, a wife, a partner, and the life a family once knew. Earlier diagnosis may not change the eventual outcome, but it can give patients and caregivers an explanation, a plan, access to support, and time to prepare. Please cast a wider net. Put the symptoms together. Refer promptly when the course is atypical. Get this disease on your radar.

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