My overwhelming emotion every day, even on the hard days, is gratitude

Mike and Heidi's story: Finding gratitude when MSA changes everything

For Mike and his wife Heidi, living with multiple system atrophy (MSA) has meant adapting to a life they could never have anticipated. As this rare and rapidly progressing neurological disorder increasingly affects Mike's independence, the couple have had to navigate new challenges together, finding strength in family, gratitude and the moments that matter most. 

When everyday changes became impossible to ignore  

For years, Mike had been noticing small changes in his physical abilities. Tasks at work were becoming more difficult, he was losing strength and balance, and he was stumbling more frequently. At first, he dismissed these changes as signs of getting older or being out of shape. 

His wife, Heidi, also began noticing changes. At their son's baseball games, Mike increasingly struggled to climb the bleachers, something he had previously done with ease. The turning point came when Heidi noticed him leaning against the kitchen counter, using his knees to support himself while standing.  

Looking back, Mike acknowledges that he had overlooked the warning signs for too long. "It was a collection of things that I put up with for way too long because, tough guy, whatever, don't need this checked out."  

At Heidi's encouragement, Mike finally sought medical attention, describing the range of symptoms he had been experiencing. "No one put it all together until that day, I laid it all out for our general practitioner," he recalls.  

This led to further examinations and a diagnosis of probable multiple system atrophy (MSA), a rare and rapidly progressing neurodegenerative disorder impacting movement, coordination and balance, speech, and automatic bodily functions such as blood pressure and bladder control.¹  

In the early stages of MSA, people typically experience a wide range of symptoms and patterns in how the disorder progresses.² At this stage MSA, Parkinson's disease, and other Parkinson's-like disorders can look similar and can be difficult to distinguish due to common features.³,⁴,⁵  

Often people see many different doctors, including urologists and cardiologists, for symptoms like loss of bladder control or issues with their blood pressure. This can mean it takes longer to get a referral to a specialist and arrive at the right diagnosis.⁶  

There are currently no approved disease-modifying treatments for MSA, with care focused on managing symptoms and supporting quality of life.⁷ 

Navigating a changing reality together  

The rapid progression of MSA can profoundly impact the daily lives of patients and their care partners. As movement and other symptoms worsen, people living with MSA may become unable to perform normal daily tasks and require full-time care, placing increasing physical and emotional demands on their families and care partners.⁸  

Since his diagnosis, MSA has progressively affected almost every aspect of Mike's daily life. Activities he once enjoyed, such as walking his dog, travelling independently and gardening, have become increasingly difficult.

"Walking isn't a natural thing anymore. It's an active event that I have to think about," Mike explains.  For Heidi, the progression of Mike's condition has meant taking on an increasingly demanding role as his care partner. One of the greatest challenges is the unpredictability of his symptoms. Some days Mike struggles to get out of bed or move safely around the house, while on others he may feel well enough to accompany her on an errand.  

"There's no real way of knowing what kind of day it's going to be or if it's going to be somewhere in between," Heidi explains.  

Alongside her work and household responsibilities, Heidi must constantly consider Mike's needs and safety. Even simple outings require careful planning, while everyday tasks can become overwhelming.  

As someone who describes herself as a perfectionist, Heidi has had to learn to let go of expectations and focus on what matters most. Where she once would have carefully folded freshly washed towels, she now considers it an accomplishment simply to get the laundry done.  

"Good enough is good enough," she says.  

For Heidi, this shift in perspective has been an important part of adapting to her role as a care partner, allowing her to prioritize what really matters while learning to ask for and accept help from others. 

Finding strength in family and gratitude  

Despite the challenges, Mike remains determined to make the most of the time he has with his family. His wife and their two adult children are his greatest sources of strength, and his priorities have shifted towards cherishing the moments they share.  

"I don't care about bucket lists. I mean, I want to do things that are fun, but I just want to spend time with important people."  

Despite the profound impact of the disorder, Mike does not want his story to be defined solely by its challenges.  

"My overwhelming emotion every day when I get up, even on the hard days, is gratitude."  

For Mike and Heidi, that gratitude, alongside their love for one another and hope for future advances in research, continues to shape how they face life with MSA together.