Excerpt of Article by Jesse Chambers | AL.com
John Parnell, 34, plays guitar, bass and drums, has a recording studio in his house and has enjoyed a nearly lifelong love of music. “Making music in whatever form makes me happy,” Parnell told AL.com. However, ataxia is attacking the area of his brain that controls his motor function.
“Common and debilitating symptoms of ataxia include imbalance while walking, incoordination using the arms and hands, and disturbances of speech,” Dr. Harrison Walker of the University of Alabama at Birmingham (UAB) Department of Neurology, who diagnosed Parnell with ataxia in 2013, told AL.com in an email.
There are many different types of ataxia, and this can complicate efforts to properly diagnose it. There are “hundreds of different causes” for cerebellar ataxia, according to Dr. Talene Yacoubian, who said that some causes are “genetic (inherited)” and many more are “sporadic or acquired.” Those “sporadic” causes can include stroke, multiple sclerosis, vitamin deficiencies, alcohol abuse, medication toxicities, autoimmune disorders, tumors and infections.
Genetic causes for ataxia are “rarer,” according to Yacoubian. “There are perhaps 100-200 different genes that have been associated with ataxias, but the list of gene mutations that can cause ataxia is growing rapidly due to technological advances in gene sequencing.”
Parnell takes some comfort in the fact that the ataxia will likely not kill him or impair his cognitive abilities, but he and his wife, Erin, can’t be sure exactly how far the symptoms might progress. “I might end up in a wheelchair one day, but I might still have use of my arms,” he said. “I might end up in a wheelchair and not have use of my arms.”
Early warning signs of ataxia include “Incoordination or imbalance in the legs, incoordination of the arms/hands (and) abnormal speech,” Walker said. “The signs can be subtle at their onset.”
No cure, no great treatments
There are, at present, no “great treatments” and no cure for ataxia, according to Walker. “Depending on the cause” of a patient’s ataxia, “medications sometimes can be helpful for patients,” Walker said. According to Parnell, there are drugs that make his legs feel less heavy. However, the medicines have unpleasant side effects, such as grogginess. “I would rather suck it up and just deal with it than have to ruin my liver more than I already have,” he said.
Ataxia comes with a significant emotional and psychological toll for the sufferers and their loved ones.
Because ataxia lacks a cure or effective treatments, [symptoms] “often progress and [patients] have severe disabilities that limit their mobility, their ability to work, and their ability to care for family,” Yacoubian said.
“Understandably, patients with ataxia are under significant stress and often suffer from depression and anxiety,” she said. “Some of the ataxias can also cause cognitive impairment that adds to the disability.”
Family members and caregivers “are also under a lot of strain and can suffer from burnout,” Yacoubian said.
Not an uncommon symptom
An estimated 150,000 Americans are affected by genetic or sporadic ataxia, according to the National Ataxia Foundation.
Thanks to Jessie Chambers for writing the article; AL.com for committing its resources to the article; John Parnell for sharing his story; Dr. Harrison Walker, a neurologist at the University of Alabama at Birmingham, for contributing to the story; Dr. Talene Yacoubian, founder of the UAB Ataxia Clinic, for contributing to the story; Google for helping me find the article; and all the people who, directly or indirectly, made it possible for me to include the picture and text in this post.