Life after stroke: Living with and researching spasticity

At age 18, Sophia Dempsey had a stroke.

During a routine day in 2010, the then-college student felt ill and decided to stay home from class. Her boyfriend at the time, Joe, didn’t hear from her the next morning, so he checked on her and found her unresponsive. She was rushed to the hospital where she remained unconscious for two weeks. When she woke, she had little control over her body – and little hope of recovery.

“Initially, the outlook was extremely negative,” Joe, now Sophia’s husband, says. “[The doctors] explained that there had been quite a lot of damage done to her brain and that those parts of the brain could never recover.”

Facing an uncertain future, Sophia left the hospital to continue her post-stroke journey. As she acclimated to her new situation, one debilitating challenge emerged among others: spasticity, or muscle stiffness and tightness,¹ that became severe enough to crack Sophia’s arm splint in half. Spasticity can result from damage to areas of the brain and spinal cord – a possible consequence of stroke – that control muscle and stretch reflexes.²

Sophia’s care plan, developed in partnership with her health care providers, has been instrumental in helping her address spasticity, reflecting the importance of managing post-stroke symptoms. And with current and potential research strategies, the future of post-stroke spasticity care is evolving – but there are still gaps in understanding the condition and how to help people identify and tackle it.³
 

One area of need in spasticity research concerns the lack of a universal definition of the condition and therefore inconsistent disease-measuring,³ which makes finding the right care plan for people such as Sophia difficult. Dr. Gavin Williams, practicing physiotherapist and associate professor of physiotherapy rehabilitation, Epworth HealthCare and University of Melbourne, says he and his team have consolidated more than two dozen existing clinical practice guidelines – trying to bring consistency to approaching and administering post-stroke spasticity care.

Aleksej Zuzek, Ph.D., medical director of U.S. Medical Affairs at AbbVie, says his team is working to address another gap in post-stroke spasticity research: the lack of awareness among stroke survivors and care partners that recovery from spasticity relies on prompt diagnosis and management.

Due to the slow nature of spasticity progression, Zuzek says stroke survivors and their primary care providers can be more worried about the occurrence of another stroke or how the patient’s brain and blood vessels are working, otherwise known as their cerebrovascular health. But Zuzek says it’s essential they also be aware that spasticity can severely limit functionality if not identified early – as Sophia has experienced. That’s why his team is focusing on equipping health care providers and patients with tools that promote spasticity education, ultimately helping them find the right care plan for them that helps combat the condition.

“[Spasticity] is nothing really, really scary at the beginning; that’s the problem,” Zuzek says. “We need to better educate patients to get them into the right hands so they get the appropriate care.”

Zuzek emphasizes that early intervention for spasticity is integral because after a stroke, the brain learns how to operate without the parts that were damaged by the stroke. But that can become more difficult over time. He says evidence supports early intervention as beneficial to early stages of brain plasticity, or the brain’s ability to change in response to experience or injury.⁴
 

A decade after her stroke, Sophia can walk, stand, wash her hair and dress herself – daily activities that were not possible before investing time in physical therapy and other strategies. And beyond day-to-day tasks, Sophia has done more than she ever imagined she could do, including continuing her love of travel with Joe.

“We are having good lives at the moment,” Joe says. “I think we’ve been incredibly lucky that Sophia has come as far as she has.”