Patient Stories

Just Keep Swimming - Joy M.

Joy ​M. first started swimming when she was 3 years old. S​he had a typical childhood until she turned 11, when she started having difficulties with movement and balance. Ultimately, she was diagnosed with a cerebellar tumor and had surgery to remove it, followed by extensive physical therapy. Joy was able to walk and move around independently until her 20s, when her ataxia symptoms became more prominent. Despite this, she was able to live on her own, care for a dog, and swim for nearly 30 years. 

In the past 5 years, her condition has deteriorated to the point where she now requires assistance with many tasks, and relies on a wheelchair or walker. However, she remarkably is still able to continue swimming freely. Her routine involves being in the pool 3-4 times a week, and swimming various styles, including breaststroke and freestroke. In addition to swimming, she walks in her nearby park with assistance from her father, cycles at home, and goes to physical therapy twice a week. Joy enjoys the feeling of swimming through water, and hopes for advances in ataxia treatment to continue the sport as long as she is able. 

Hanging in the Moment - Adam Payne

Adam Payne has always been active - he grew up cycling, and was just beginning to discover rock climbing when he was diagnosed with ataxia. His symptoms first became noticeable when he was about 22 years old. While working as an EMT, he started having trouble with tasks including holding a stretcher and walking backwards.

 

After the diagnosis, Adam took a break from climbing for nearly fifteen years, and solely focused on cycling as a way to keep active. However, after being introduced to Kareemah Batts, who founded the Adaptive Climbing Group, he was convinced to try it out again. This time, he was hooked. He started climbing once a week, then twice a week, until eventually he was training four days a week.

Eventually he started to compete in national adaptive climbing competitions, and was able to place third in the 2014 ABS Paraclimbing Nationals. Due to his high national ranking that year, he had the opportunity to compete for the US in the Paraclimbing World Cup in Spain. While he didn't win that event, he remembers it as the first time he truly felt like an athlete, and that what he was doing was important to people other than him. 

 

Adam Payne training for his next competition. Source: Paraclimber.

Adam has continued to compete both nationally and internationally, most recently placing 8th at the 2018 Paraclimbing World Cup in Austria. A shoulder injury has prevented him from competing as frequently as he used to, but he continues to practice whenever able. Adam believes his rock climbing abilities have improved his overall strength and potentially slowed the progression of his disease. His next goals include qualifying to compete in the next Paraclimbing World Cup, and placing in the top three.  

Death to SCA - Lorraine and Howard Lerner

"Death to Spinocerebellar Ataxia," Howard Lerner. Source: Howard Lerner Art.

Lorraine Lerner first started noticing her ataxia symptoms in 2001 at work, when she had trouble trying to sit down at her desk. Shortly after, she went to a neurologist who asked her to undergo an MRI. The results showed atrophy in the cerebellum, and he guessed early on that she had some form of spinocerebellar ataxia (SCA). Several years later she received a diagnosis of SCA 2, an inherited form of the disease.

After her diagnosis, Lorraine and her husband, Howard, began to look into potential treatments for SCA. She started physical therapy and participating in clinical trials. However, as there is currently no cure for SCA, Lorraine has gradually lost her ability to walk and requires the assistance of aides for almost all daily tasks. 

In an effort to raise awareness of the disease, Howard has used his experience as a visual artist to showcase their experience with SCA. As depicted in the piece on the left, he has used letters cut out of old record album covers to convey a sense of urgency, similar to a ransom note in a kidnapping. According to Howard, "people living with ataxia are also kidnapped by the disease, and only with the collective actions from scientific research and public awareness do we stand a chance for a rescue mission."

The woman playing an accordion in the painting is based on his wife, Lorraine. Her brain is very disorganized, seen by the images of a cowboy playing a guitar with different songs and a revved-up airplane, both interfering with her ability to play properly - akin to how people living with ataxia feel in their day-to-day activities. The cerebellum is not clearly seen; instead it is placed behind the grey cat who is protecting the organ from further atrophy. 

Howard uses the word "Death" instead of "Cure" to indicate how, more than anything, he wants to get rid of the genetic mutation that is slowly killing his wife. As he describes, "The story of Lorraine's disease has 10 plagues, similar to the Exodus story in the Bible: 1) Loss of Eyesight, 2) Loss of Speech, 3) Loss of Swallowing, 4) Loss of Balance and Inability to Walk, 5) Loss of Family and Friends, 6) Loss of Having Children, 7) Loss of Continence, 8) Loss of Coordination, 9) Loss of Focus, and 10) Loss of Life."

While their experience with SCA hasn’t been pretty, Lorraine and Howard continue to hope for advancements in treatment and actively look into new research studies. As Lorraine often says, “ Just keep going.”