How Casey Kasem Can Inspire People with Parkinson’s To Save Their Voices

By Samantha Elandary, Founder and CEO, Parkinson Voice Project

As we mourn the loss of a man whose distinctive voice filled our weekends with laughter, leisure, and anticipation, let’s take this time to honor him by encouraging people with Parkinson’s to be proactive and save their voices.

The morning started out like any other—my alarm went off, I exercised, and then turned on the television to watch the morning news while I got ready for work. I stopped when I heard, “Casey Kasem dead at 82.” I have fond memories of being a teen in the era of American Top 40. My sisters and I used to rush out of church to our car and turn on the radio so we could hear which artist moved up to number one. Upon hearing the news of Kasem’s death, I couldn’t help but to think about what his final months might have been like with no voice. This past December in a New York Daily News article, Kerri Kasem, the daughter of Casey Kasem, reported: “This is a man we saw every single week, talked to him every single day on the phone until he lost his voice.” As we mourn the loss of a man whose distinctive voice filled our weekends with laughter, leisure, and anticipation, let’s take this time to honor him by encouraging people with Parkinson’s to be proactive and save their voices. 

For the past seventeen years, I’ve dedicated my professional life as a speech-language pathologist to restoring the voices of those with Parkinson’s—yes, I said restoring—because it IS possible to save a voice that appears to be deteriorating as a result of this neurodegenerative condition. From the recent media coverage about celebrities who have Parkinson’s, though, you might think that voice loss is an unstoppable side effect.

An AARP Special Report (June 2014), used adjectives such as “slurred speech,” and “a hushed voice” to describe Muhammad Ali’s communication. The article also stated, “Ali has become increasingly private in recent years as his ability to speak has deteriorated.”

Last August, in an AARP interview, Linda Ronstadt revealed that she had Parkinson’s and stated, “No one can sing with Parkinson’s disease, no matter how hard you try.” AARP published a follow up to this story which allowed me and other experts in the field an opportunity to explain the characteristics of voice and swallowing disorders related to Parkinson’s and to reiterate the value of speech therapy.

In addition, numerous articles in various media outlets have described changes in Michael J. Fox’s voice. In November 2010, an article from Mail Online reported, “He rarely gives interviews, as the Parkinson’s impairs his speech…” And last April/May 2013, an AARP piece noted, “Though Parkinson’s has weakened his voice…”

Traditional speech therapy does not work with Parkinson’s...
The key is early intervention—the sooner patients enroll in voice therapy, the better their chances to regain the strength of their voices.

Since I started treating individuals with Parkinson’s in the late 1990s, there have only been three patients I evaluated with idiopathic Parkinson’s who couldn’t be helped. Two of the patients had undergone a bilateral pallidotomy, a neurosurgical procedure that destroys brain cells and can severely impact the speech mechanism (this procedure is not usually performed anymore). The other patient had not spoken—not a sound—for over five years. Unfortunately, it was too late to help her. However, every other Parkinson’s patient has been a candidate for successful voice treatment. Those with mild-to-moderate impairments can usually regain normal speaking skills; those with severe challenges can typically regain basic communication skills—like talking to family on the telephone. The key is early intervention—the sooner patients enroll in voice therapy, the better their chances to regain the strength of their voices.

It is also pertinent for patients to work with a speech-language pathologist who has the skill-set to successfully treat voice issues related to Parkinson’s. It did not surprise me at all in the recent AARP Special Report to read that Muhammad Ali “never has been a big fan of voice and speech therapy.” Traditional speech therapy does not work with Parkinson’s. This is why in 2005 I created Parkinson Voice Project, the only nonprofit organization in the country solely dedicated to preserving the voices of those with Parkinson’s. Our SPEAK OUT!® and LOUD Crowd® programs are highly effective and voice improvement almost always occurs within the first week of treatment.

Since its inception, Parkinson Voice Project has conducted more than 25,000 voice treatment sessions. Something unique about Parkinson Voice Project is that we don’t charge Parkinson’s patients for voice therapy, and we don’t bill insurance. The program is funded entirely through donations and a Pay-It-Forward system. This past year, with generous donor support, we moved into a new 6,800 square foot voice clinic—there is no other treatment facility like it in the world of which I am aware. The voice clinic is a second home to hundreds of Parkinson’s patients and their family members who attend regular individual and group voice therapy sessions.

Through my seventeen-year journey in working with the Parkinson’s population, nothing gives me more happiness than to hear the testimonials from patients and families as to how SPEAK OUT! and The LOUD Crowd have impacted their lives. Parkinson Voice Project recently received a donation in memory of one of our patients. Along with the donation was a special note which read, “Your treatment to my husband returned his voice and his self-esteem and made the last few months of his life a joy.” What an honor it is to help preserve one of life’s most precious gifts! I urge Muhammad Ali, Linda Ronstadt, Michael J. Fox, and the more than one million Americans living with Parkinson’s to save their voices today.

For more information 
about Parkinson Voice Project, visit www.ParkinsonVoiceProject.org
or call 469 375-6500.