Get Well Wednesday: The Parkinson Voice Project

APRIL IS PARKINSON’S DISEASE AWARENESS MONTH

Phillip and Tonja Cooper have been married for 35 years. Tonja is a LOUD Crowd® assistant at the Parkinson Voice Project. Phillip was diagnosed with Parkinson’s 7 and a half years ago and has been a LOUD Crowd® member at the Parkinson Voice Project since that time. His symptoms started years before his diagnosis.

WHAT IS THE PARKINSON VOICE PROJECT AND WHAT MADE YOU START IT?  

90% of people with Parkinson’s are at risk of losing their ability to speak and to swallow.  I knew that I could help.  Parkinson Voice Project’s two-part therapy approach helps this patient population REGAIN and MAINTAIN their speech and swallowing.

Left untreated, people with Parkinson’s are at high risk of losing their ability to speak which can then affect one’s ability to swallow.  Difficulty swallowing can be life-threatening and can lead to multiple hospital stays, feeding tubes, and aspiration-pneumonia.

WHAT ARE THE SIGNS OF PARKINSON’S AND WHAT CAUSES IT? 

The four primary symptoms of Parkinson’s are:  tremor, slowness of movement, rigidity, and impaired balance.  Parkinson’s is caused when neurons that produce a chemical called dopamine die or become impaired.  By the time someone has any symptoms of Parkinson’s, 60-80% of the dopamine-producing cells have been depleted.

IS PARKINSON’S HEREDITY?

The cause of Parkinson’s is unknown, but it is suspected that a combination of environmental and genetic factors are primary contributors.  While Parkinson’s is not hereditary, those with a family history of the condition are at a slightly higher risk of developing Parkinson’s.

IF DETECTED EARLY CAN PARKINSON’S BE PREVENTED?

I am not aware of any methods to prevent the development of Parkinson’s.  While there is no cure to this neurological condition, though, Parkinson’s CAN be managed with medications, intensive exercise, and reducing stress.

IS THERE A TEST YOU CAN TAKE TO SEE IF YOU’RE AT RISK?

This is a question for a physician.

PARKINSON’S PATIENTS OFTEN LOSE THEIR ABILITY TO SPEAK. HOW DOES PARKINSON VOICE PROJECT HELP?

Parkinson Voice Project’s speech therapy program as two parts:  SPEAK OUT!® followed by The LOUD Crowd®

SPEAK OUT!® consists of individual therapy with a speech-language pathologist that strengthens the muscles used for speaking and swallowing and teaches the patient how to “speak with intent.”  People with Parkinson’s must be INTENTIONAL in everything they do—including speaking.

The LOUD Crowd® is the “maintenance” portion of the program.  It consists of weekly speech and singing groups to help keep patients motivated to keep up with daily speech exercises and it also provides continued instruction, encouragement, and support by a speech-language pathologist.

Since Parkinson’s is a progressive, degenerative condition, it is crucial that patients receive ongoing, continuous therapy in order to maintain their speech and swallowing abilities.  A person with Parkinson’s never “finishes” speech therapy.  It’s something they will have to work on for the rest of their lives.

EXPLAIN HOW THE PAY-IT-FORWARD SYSTEM WORKS AT THE PARKINSON VOICE PROJECT?

People with Parkinson’s receive a speech evaluation and as much speech therapy as they need.  At the end of treatment, they are given an opportunity to Pay It Forward—make a donation to help the next patients receive treatment.  In other words, our clinic doesn’t bill insurance or charge for our therapy services.  We’ve provided all of our therapy services using the Pay It Forward concept since 2008.  No patient has ever been denied treatment at Parkinson Voice Project due to limitations in insurance coverage or finances.

HOW CAN PEOPLE GET MORE INFORMATION ABOUT PARKINSON VOICE PROJECT?

Please visit our website at www.ParkinsonVoiceProject.org.

Samantha Elandary is the founder and chief executive officer of Parkinson Voice Project, non-profit organization in Dallas. She holds a B.A. in communication disorders and english and an m.a. in speech-language pathology from the University of North Texas. She has spent the past 20 years dedicated to helping those with Parkinson’s preserve their speech and swallowing.

Samantha Elandary answers your questions on the next page.

 Is there such thing as “early detection” and if so, can symptoms be halted or at least slowed? Any chance of reversing Parkinson’s?

The primary symptoms of Parkinson’s are tremor, slowness of movement, impaired balance, and stiffness. Research indicates that intensive exercise (both for the voice and the body) can slow down the progression of Parkinson’s.  Medications help to relieve the symptoms.  In terms of maintaining one’s speech and swallowing abilities, early intervention is crucial. To find a speech-language pathologist in your area, visit www.ParkinsonVoiceProject.org.   

 Can repeated blunt force trauma accelerate the onset of Parkinson’s?

The cause of Parkinson’s is unknown, and every person with Parkinson’s has a different combination of symptoms. While Muhammad Ali was diagnosed with Parkinson’s and experienced speech difficulties, other athletes, who experienced the same types of trauma, have not been diagnosed. It’s a real mystery.

My mother is bedridden with Parkinson’s and I’d like to know if her neuropathy is directly related to the Parkinson’s – she can no longer walk or move.

Since every person with Parkinson’s is different, it’s difficult to know whether the neuropathy is related to the Parkinson’s.  Ideally, people with Parkinson’s will be evaluated and treated by a Movement Disorder Specialist. This is a neurologist who specializes in Parkinson’s. Parkinson Voice Project brings in experts from around the world to present for our ‘Parkinson’s Lectures Series’.

Topics have included how Parkinson’s is diagnosed; how to manage Parkinson’s medications; exercise; speech therapy, swallowing disorders, and many, many more. These lectures are live-streamed on our website and then recordings of the presentations are posted online. This is a great opportunity to ask the experts questions such as this one.

 My aunt has Parkinson’s. She lives in a rural part of North Carolina and we found the drinking water contributed to her diagnosis. This was based on several of her neighbors were diagnosed. Have you discovered any similar findings?

 It is suspected that Parkinson’s is caused by a combination of environmental factors and genetics. I am not aware of drinking water contributing to the diagnosis; however, this is another great question that could be asked during our ‘Parkinson’s Lectures Series’.  Visit our “Education & Events” tab on www.ParkinsonVoiceProject.org to view recordings of all the past lectures and to see which experts we’re featuring next. 

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