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Musician with Ataxia Continues Playing

Excerpt of Article by Jesse Chambers | AL.com

2015-0426 John Parnell

(L-R): Pelham musician and family man John Parnell is an ataxia sufferer (Tamika Moore/tmoore@al.com); Dr. Harrison Walker, a neurologist at The University of Alabama at Birmingham, diagnosed Parnell in 2013; Dr. Talene Yacoubian founded the UAB Ataxia Clinic in 2014 2013 (UAB photos).

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.

Emotional hardship

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.

Credits

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.

Scott
Even after brain surgeries, chemotherapy, and radiation treatments to eradicate his brain cancer, Scott continued to work; continued to study; and earned professional certifications from the Project Management Institute, American Society of Quality, and Stanford University School of Professional Development. How were all of these achievements possible at a time when Scott was struggling with the hurdles of brain injury? The answers are in this blog.

2 Responses to “Musician with Ataxia Continues Playing”

  • Esther says:

    “we all need someone who inspires us to do better than we know how”–Anonymous

    A good friend of mine who has this condition never fails to inspire by his example. Thank You to all those as dedicated to living

  • pawan singh says:

    I liked your post.


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**** About The Author ****

During the past 13 years, I have been diagnosed with cancer, brain injury, balance issues, stroke, ataxia, visual impairment, and auditory challenges. I have overcome significant adversity! I can explain how to overcome your challenges. I am a very active Toastmaster and a motivational speaker.