An interview with Karen Skipper from the Orange County Tremble Clefs – Living Well with Parkinson’s, One Song at a Time on November 20, 2023 by George Ackerman, Ph.D, J.D.
Biography
My name is Karen Skipper and I am a Board-Certified Music Therapist. I have been practicing music therapy in Orange County, CA for over 40 years and have had the privilege of being the Director of the Orange County Tremble Clefs for over 20 years.
Can you tell me more about your organization?
The Orange County Tremble Clefs program has existed in Orange County California for 25 years under the umbrella of several Parkinson’s organizations. Two years ago, the Orange County Tremble Clefs became a 501c3 nonprofit whose goal is to provide music therapy for people with Parkinson’s.
There are no requirements for our group except an INTEREST! Participants don’t have to have a great voice to join or even any previous musical experience.
We do a variety of music – everything from Broadway to country, pop to traditional!
Caregivers and families are invited to take part in rehearsals and performances.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion is the result of working with the amazing singers in the Orange County Tremble Clefs. Even though there is currently no cure for Parkinson’s, our singers join together 4x/week and make music to improve their communication and breathing and to experience the support and benefits that group music making provides.
Our singers often ask, “What will happen to Orange County Tremble Clefs when a cure is available for Parkinson’s Disease?” The answer is, it will be a singing group for people formerly diagnosed with Parkinson’s disease. Our singers are using music to stay strong and hopeful until that day comes.
What type of goals do individuals with Parkinson’s have when working with you?
Our Purpose:
We are a community of people with Parkinson’s disease who have a desire to sing and explore the therapeutic value of music.
Our goals :
To enhance and maintain vocal and physical skills through vocal exercise and movement
To promote interaction and communication within the Parkinson’s community: caregivers and family as well as patients.
To share our music with others and promote a better understanding of Parkinson’s disease.
Our program is FREE thanks to your donations and generous grants from supporting organizations.
What type of training and how long are the programs?
The Orange County Tremble Clefs program currently offers sessions in English, Korean and Spanish. Our sessions are all facilitated by Board-Certified Music Therapists who have received special training in the unique challenges faced by people living with Parkinson’s disease.
We offer six sessions per week, ranging from 60 – 90 minutes. Some of our sessions are In-person and some are via Zoom which allows us to include singers from all over the United States and, in fact, the world.
Our singers also enjoy a weekly “virtual” Happy Hour where they share their concerns, questions and victories in living with Parkinson’s disease.
What effect can it have on an individual with Parkinson’s?
To answer this question, I asked our singers what some of the benefits they experience have been. Somewhat surprisingly is that none of the singers mentioned “improved singing ability” in their answers to this question.
Some of the effects that our singers reported were; an increase in the ability to use appropriate facial expressions (no Parkinson’s “mask”), a louder/stronger speaking voice, a sense of community and a feeling of “not being alone”, and a feeling of importance when we do concerts and educate the community about Parkinson’s and advocate working towards a cure.
What would you like to see as a future goal for your programs?
Statistically, in Orange County, CA, there are 7000-10,000 people with Parkinson’s disease. In the United States there are statistically almost 1,000,000 people living with Parkinson’s disease. worldwide, there are an estimated 9.4 million people with Parkinson’s disease.
My goal would be to use the Orange County Tremble Clefs program to connect as many people as possible in keeping their voices strong and their morale high as they look forward to a cure that will make this disease a thing of the past. Our Zoom presence enables to connect with people with PD all over the world and the opportunity to connect with the global PD community has given our organization the opportunity to reach more people.
What events do you participate in?
Our organization frequently sings for community groups, not only providing entertainment but also educating the public about Parkinson’s and offering encouragement to others who might not know about our program.
We also participate in community events such as Parkinson’s Foundation “Moving Day”, and a fundraiser for the Michael J Fox Research Fund, “SoCal Ride for Parkinson’s”.
We sing at these events and have “teams” that raise funds for the work that these organizations support. The Orange County Tremble Clefs are members of a local Chamber of Commerce and we have a presence at numerous Symposia and Community Health Fairs on our “home turf”.
We recently had 15 singers who attended and performed at the World Parkinson’s Congress in Barcelona, Spain.
As the Musical Director, I frequently speak at community events and at Support Groups about the benefits of therapeutic singing and other music therapy interventions for people with Parkinson’s.
Our singers also advocate with their Physicians, therapist’s and peers to encourage them to take advantage of the benefits that therapeutic singing offers.
How does this also assist the caregivers?
I asked our Care Partners who attend the OC Tremble Clefs meetings about this questions. Here are some the answers I received from care partners:
*My loved one has clearer speech enabling better conversations and stronger throat muscles.
* Tremble Clefs helps me better understand some things that can be done to slow the progression of PD.
* Participation in Tremble Clefs improves my loved one’s mood.
*Interaction with other care partners at OC Tremble Clefs offers me support as a care partner.
*Participation in Tremble Clefs helps me understand the realities of the feelings my partner experiences as a person with Parkinson’s.
How can someone get in touch? What is your website?
Our website is https://octrembleclefs.org/
Our mailing address is: Orange County Tremble Clefs, 14252 CULVER DR., SUITE A, #286, IRVINE, CA 92604
Phone 1-949-278-2512
How can others also become advocates for awareness?
Anyone/everyone can write to their Representatives to ask for increased funding to find a cure.
Anyone/everyone can contact the Orange County Tremble Clefs, Parkinson’s Foundation, PMDAlliance, Davis Phinney Foundation, American Parkinson’s Disease Association, etc. to learn more about PD.
Anyone/everyone can enroll to be a part of the Michael J Fox PPMI Study https://www.michaeljfox.org/ppmi
to help researchers find out why some people get PD and some do not.
In your opinion what is the key to effective advocacy?
I think PASSION and MAKING NOISE are the two most effective ways to be an advocate. Being present in the community and getting the attention of decision makers can also be effective.
How can we better fundraise to support a cure for Parkinson’s?
Contact Representatives to make more money available for research for a cure.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
Our singers said that Tai Chi, Support Groups, Ballroom Dance, Physical Therapy, Walking/Swimming/Regular rigorous exercise are helpful in living with PD.
Why should people who don’t have Parkinson’s care about this?
If they don’t know someone with PD, they WILL! It might even be them. PD is the fastest growing neurologic condition in the world.
Have you had any family members or relatives affected by Parkinson’s disease?
Not to my knowledge
If you had one song that would tell us more about you or represent your life, which song would it be?
From our singers:
“You’ve Got a Friend”
“Blame It On the Parkinson’s” https://www.youtube.com/watch?v=tW6V3z16hpk
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
From our Singers:
“Hang In There” “Don’t Give Up” “Build a Strong Team” “Keep a Sense of Humor”
“Make Every Day a Day of Importance”