Project Helps Parkinson Patients Regain Their Voices

kera - Parkinson's disease is a neurological disorder that is often associated with hands that shake uncontrollably; a loss of balance; arms and legs that become rigid and difficult to move.

There's also a less recognized symptom- a loss of understandable speech. As we mark this Parkinson's Awareness month we want to tell you about a North Texas project that is helping Parkinson patients recover their voices. Shelley Kofler reports it's also saving their lives.

Imagine thinking you are talking loudly enough to be heard, when your voice is barely a whisper. You begin a conversation only to have your words tumble out unintelligible and garbled. Your breath support grows so shallow you can't produce a full sentence.

That's what happened to Earl Duniphin as his Parkinson's disease progressed. At the age of 61 he'd spent 10 years unable to communicate. Here's how Duniphin sounded in 2009 as he described feeling alone, invisible and shut-off from his family.

Earl Duniphin: (Mumbling) I was going just downhill.

His wife Ann says Duniphin felt invisible, shut off from family and friends.

Ann Duniphin: He was just miserable as anybody would be. His own mother didn't want to try to talk to him.

Some 89 percent of people with Parkinson's suffer from problems similar to Duniphin's. Many lose their voices and the ability to swallow as their brain cells produce less dopamine which is needed to control muscles and movement.

Speech therapist Samantha Elandary says that can ultimately lead to death.

Elandary: The same muscles we use for speaking we use for swallowing. The main cause of death for people with Parkinson's is aspiration pneumonia. Food, liquid, saliva going down the wrong way to the lungs and making people sick.

Elandary says for many years therapists and doctors watched almost helplessly as their patients' voices and conditions' grew weaker.

Then Elandary discovered a breakthrough.

Elandary: I learned about a treatment that focused on teaching Parkinson's patients to speak louder, how to project their voices. It was administered in an intense manner four days a week for four weeks.

Excited about the possibilities Samantha Elandary began teaching the voice exercises at her home as she raised money and support needed to launch the non-profit Texas Voice Project.

Now after more than five years Elandary and therapists with the project have treated more than 450 Parkinson patients. Nearly all of them have regained their voices after learning how to compensate for their bodies' loss of dopamine.

Elandary: Parkinson's is characterized by reduced amplitude. You think of everything kind of smaller: smaller walking; smaller writing; smaller voice. So people with Parkinson's have to over-exaggerate all of their movements in order to compensate for the characteristic of reduced amplitude.

Two years ago Earl Duniphin entered the program and went from incoherent mumbling to having a conversation with his mother for the first time in a decade.

Earl: My mother for the first time in ten years could hear me and talk to me. My family could hear to me. The words are more concise, much clearer. They understand me. I feel like a human being.

His wife Ann says the transformation is miraculous.

Wife: It's been so long since he had any friends. He'd not had hope. There hasn't been anything like hope in so long.

Elandary says the program rejects no one with Parkinson's and there are no upfront costs. At the end of their treatment patients are asked to contribute what they can so others will be helped.

Right now the Texas Voice Project is the only program of its kind but Elandary hopes to change that. Her team in Richardson is reaching out, training speech pathologists from around the country. They're hoping to restore the voices and quality of life to more people with Parkinson's.

Elandary: It's actually very sad. If you look around the country at other places Parkinson's patients are losing their ability to speak. But it truly can be treated.

Link: http://www.texasvoiceproject.org/