Tremble Clefs Arizona is a non-profit 501 (c)(3) Charity
March 5, 2008, marked the beginning of the West Side Tremble Clefs in Sun City, Arizona. The Muhammad Ali Parkinson Center had asked Sun Joo Lee to establish a music therapy vocal group for people with Parkinson’s disease in the Sun City area. Seven members attended her first meeting. They were Bob and Helen Wagh, Mary and Jim Cogan, Elinor and Larry Haas and myself, Beth Lee. We shared our Parkinson’s stories, exercised our voices and quickly agreed that we had come to the right place.
Three years before, on April 15, 2005, I was diagnosed with Parkinson’s disease. I didn’t like the diagnosis but at least I finally knew what was wrong. It was also time to move from New York, to a place that offered the best Parkinson’s doctors, information and support.
By mid 2007, we were settled in Surprise, Arizona and I knew that this had been the best move of my lifetime. I was already seeing Dr. Holly Shill, a Movement Disorder Specialist, and was enjoying the many exercise classes offered by the Muhammad Ali Parkinson Center. When I received the flier announcing that a new music therapy vocal group was being offered, I was thrilled and immediately registered for this class.
March 5, 2008 was not only the beginning of the West Side Tremble Clefs, it was also a new beginning for me! Music and singing had always been central in my life and within the first two weeks of attending the music therapy group, I knew that my voice would return and music would again fill my life.
Word quickly spread about this talented, very dynamic director and the WSTC soon grew by leaps and bounds. Whenever Sun Joo asked for volunteers, one of the new members, Gregg Owens and I would volunteer. While working with Sun Joo, we talked about the growth of the Tremble Clefs. At the beginning of our next therapy session, Sun Joo spoke to the class and discussed some of the changes needed in order for the Tremble Clefs to move into the future. Sun Joo then asked everyone to vote for two leaders. Gregg and I were both voted in and we thanked everyone for their trust. We took the title of co-chairperson.
We had a unique group of people who were fighting the same disease, and we were becoming more and more like a big family. We needed those attending to share their ideas and volunteer their time. Gregg and I both knew that the best way to get volunteers was to have a one on one conversation with someone who we thought would be great in a particular position. Before long we had several volunteers. We created our Mission Statement which basically outlined our goals. Gregg worked with Don Dotts, head of the Original Tremble Clefs, to prepare a budget for the WSTC.
Bill Doherty volunteered to be our Treasurer and handle all the monthly financial issues. Denise Lestor played a very big role as activities coordinator. She maintained our membership list, attendance lists, concert schedules, fundraising events and more. As we grew, many new members offered their time to volunteer and life became easier for everyone.
There were two additional areas that Gregg and I felt needed our attention. We created the Welcome Team so that everyone was greeted and welcomed as they walked in to join us at our weekly practice sessions. Newcomers were introduced and music shared with them. And finally, the Care Team - anyone missing from practice, or a scheduled concert without someone knowing why, would be called to ensure that no one was sick or hurt.
Even though Gregg and I spent alot of time working with Tremble Clefs, we always made time to do all the things we enjoyed. Gregg enjoyed outdoor sports especially golf and baseball. He kept himself in good physical shape and in spite of having PD for 11 years he was very proud of catching a high line drive during one of his many baseball games.
I kept myself busy with art classes and exercise classes. I went to every “Walk the Fight” function, and created many posters that were carried throughout the walk I was also captain and co-captain for 3 years. I had never painted before, but I enjoyed painting my “own” version of Monet, and being creative putting together fliers for our many functions.
Gregg and I both loved singing and playing our guitars . Gregg was especially proud of having a 52 year old guitar that a friend had given him and it was a great honor for both of us to be invited to sing at one of the annual Jazz Concerts given by the PNA. I was also very honored to have a close friend submit a PERSONALLY DESIGNED QUILT In my name into the FIRST World Parkinson’s quilt project.
Our Parkinson’s continued to beat its own drum and both of us were scheduled to have DBS Surgery in the summer of 2012. Gregg was determined to have his surgery first, and he met his goal. I experienced some unexpected delays, but this allowed me the time I needed to work on the Parkinson’s song that I was writing and planned to dedicate to the Tremble Clefs.
I was part of this unique family, and I watched us grow, not only in numbers, but in the daily struggles and progression of our shared disease. The words in the verses of my song “We Go on Day By Day” reflect the progression, but the essence of the song is in the knowledge that we’re not alone, we’re in this fight together, so we stay strong and go on day by day.
I have been blessed and honored to have this song sung at many concerts and conferences. But when Gregg and I sang my song together, it was “our honor” to share it with all the patients and their families who were struggling with this same disease. A great honor in my eyes was having my song sung at the 2nd World Parkinson’s Congress and then having it played during the afternoon reflection sessions at the 3rd World Parkinson’s Congress. I had planned to sing my song at the second World Congress, but I was in the hospital and unable to attend. I called Karen Skipper the director of the Orange County TC and asked that her group sing it. Jim Histand was there to introduce the song and read my reasons for writing “We Go on Day By Day.”
When Gregg surprised us with his new song, “PD Song: PD is a Long and Lonely Road” we had another wonderful song to sing, enjoy and share with others. These songs helped Gregg and me fulfilled our dreams and meet our goals. Our songs were touching the lives of many Parkinson’s patients, and helping their families and caregivers to truly understand how this disease affects our lives.
Parkinson’s disease is not only progressive, it is relentless and often affects our speech. I’ve seen friends having a hard time expressing themselves and so I’ve added a fourth verse which I hope helps as we go on day by day. Especially to my friend Gregg who shared the position of Co-Chairperson with me for 9 years and shared all of the Tremble Clef moments I sing. “When you can’t speak the words you long to tell us. We KNOW, and we UNDERSTAND!”
by Beth Lee
Written January 2020
Since Gregg has moved to South Dakota and won’t be singing with us anymore, I’ve included some of his story with mine, and that is why this is called “Our Journey with the Tremble Clefs.”
Singers from the Original and West Side Tremble Clefs at a pre-Fight Night Event, March 2013.