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Teri my wife and my daughter Alea observed Parkinson type symptoms in me. Not much arm movement or rhythm when walking, balance a bit off and my morning newspaper didn’t want to hold still for me to read. It was time to get answers.
And so my journey with Parkinson’s disease began in 2007. I was first diagnosed with Parkinsonism but not Parkinson’s. I didn’t really understand all of this; the true PD flag was raised in 2007. I was started on Requip; it didn’t have any effect on me. So I switched to Carbidopa-Levodopa (Sinemet), considered the Gold Standard. The meds helped control the slurred speech, mild tremors and more. I thought it worked pretty well.
Once you’ve been diagnosed, educating yourself about PD is very important. Prior to the pandemic my wife and I attended numerous meetings, conferences, support and exercise groups. Since the pandemic Zoom classes and webinars are our means of staying in touch with others about PD. If there were one comment I would make - don’t get obsessed with PD and let it become the focal point of your life. Relax and enjoy; take each day as it comes. It will be a challenge, but try to do it.
Informing myself - hearing doctors speaking, attending support groups, seminars - helped guide us along the way. Teri was always with me and we would talk about what’s next and what options we had. Together now for 43 years of a wonderful marriage. Along the way I have been treated for these PD symptoms: tremors, freezing, dyskinesia, dystonia, low blood pressure, high blood pressure, constipation, foot drop, restless leg syndrome, fatigue, sleep disorders, acting out dreams, depression, poor balance, falling. Over time my health declined.
I heard about DBS - Deep Brain Stimulation - and listened to top physicians discuss this and some other possible remedies. DBS is a huge decisions. I found out I was a good candidate in the initial round, but would have to more extensive testing before I could be officially certified and accepted. I discussed DBS with Teri and other family members before I had the surgery in 2014. I had no problem with the surgery; it was a 3-step procedure. My daughter Alea shaved my head. And she shaved others in my family. I was surprised when I saw that my son Justin, Daniel my son-in-law and Andrew my 2-year-old grandson were ALL bald too. This support meant so much to me. My daughter not only shaved heads, she had a tee shirt made for me that said: “Bald and Ballsy.” I wore it into the operating room and announced to the surgeon “Go ahead - Make my Day!”
After the DBS surgery in 2014, my gait and balance improved and I had better voice and movement. Videos were taken prior to the surgery and again afterward. You could watch me in the before video; I was wobbling and found it hard to speak clearly. After the surgery, my video showed improved walking and that my speech had improved.
Over the years I have had some periodic adjustments of the DBS control unit to adjust to PD that keeps progressing too. Some tune-ups have been better than others. In 2016 I had my best ever tune-up; i could talk clearly. My walking and talking were much improved. I felt normal again.
In 2017 I experienced a problem with feeling an electrical impulse, like a tenz unit, behind my right ear. It took a year to get x-rays, MRIs and other imaging and to get someone to solve the problem. Finally as 2017 ended my DBS controller was replaced and I haven’t had any problems since. In June 2020 I had a heart attack and a pulmonary embolism that December. Each time within 2 or 3 days after I was home from the hospital I was outside exercising on my bike. In time I returned to exercising 2 or 3 times a day. I ride outside on a three wheel bike, adult tricycle; any of you who have ever done this know it takes energy and builds stamina.
When you think you may want to consider DBS go to a presentation or webinar with your caregiver or spouse. Check out the main companies making DBS units. Check statistical figures. Do you have to recharge the battery? How often? For how long? This is a huge decision so make sure you have ask all your questions and are comfortable with the answers.
In 2019, I joined a clinical trial of a subcutaneous pump putting Carbidopa-Levodopa into my body 24/7. This has eliminated all of my “off” times. Currently in 2021, I am taking part in another medical trial. A big advantage is that my PD medicine is provided by the research group.
I have the blank facial expression that only Parkies can have and that tends to hide my own positive attitude. I go to support groups, stay social, don’t hide, and share knowledge and experience to try to help and encourage others. This will be a lifetime journey. Within certain limitations we have tried to enjoy and appreciate the good times and look forward to more. Drug manufacturers seek to develop better medications for PD. Michael J. Fox, recognized worldwide, pushes relentlessly for more funds to do much needed research to find a cure. Muhammad Ali, also recognized worldwide, raised funds to help find a cure and to help people living with PD.
The path your body and mind take will be unique as everyone is different. Give it your best shot. Exercise is the best thing you can do to keep your body functioning, making endorphins, staying as strong as possible. Exercise is excellent for keeping a positive attitude.
I feel fortunate to have a wonderful wife and family that support my efforts. I have learned a great deal from the wide variety of people I have met over the years. I feel somewhat lucky I don’t have a more severe illness with deep pain or other terrible symptoms. I feel fortunate and try to concentrate on the positives. I think when you set daily obtainable goals, it challenges and encourages you. I also have larger goals that are harder and may be out of my control. My son moved to New Mexico about a year ago, but because of our current restrictions I haven’t seen him for a year and my goal is to see him in the near future.
Since I was diagnosed in 2007, we have tried to do positive things. I have fun, travel, see family and loved ones; I’m not just staying home and feeling sorry for myself. We are alive and kicking and we might as well enjoy life to the best of our ability. It is something that you really have to work at and if you do, you will receive a wonderful boost in your self-respect.
Since I have had PD for about 14 years, I have been moving on in stages. Recently I was diagnosed with the beginning stages of dementia. So now I have to deal with detailed mental challenges too. My physician has prescribed a skin patch of Rivastigmine and I have found that makes a world of difference. I now function better.
I plan on staying in a positive environment with my family, friends, support group, exercising and singing in Tremble Clefs. Teri and I say it’s just another bump in the road. We have to tackle it the best we can and move on; we don’t want to get stuck in a rut. I think of the Rolling Stones song “You Can’t Always Get What You Want.” I never could have kept going without the love and support of Teri, family and friends.
(Jim wrote about his experiences with PD for our Tremble Clefs Arizona Spring Newsletter, April 2021)
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.” The lyrics of Beth's song as well as Gregg's are on another page in "Our Singers."
Singers from the Original and West Side Tremble Clefs at a pre-Fight Night Event, March 2013.
PD is a long and lonely road, a slow and shaky time
Unless the friends you meet are very kind
Some are strong and some are good
Some have done the best they could
And some have tried to ease my troubled mind
Still I can’t help but wonder where I’m bound
Where I’m bound, I can’t help but wonder where I’m bound
I have been around this land just doing the best I can
Trying to see what I was meant to be
The friends that I’ve made are the ﬁnest that could be
It makes the trouble worth the pain
Still I can’t help but wonder where I’m bound
Where I’m bound I can’t help but wonder where I’m bound
If you see me shufﬂe by and you sit and wonder why
Don’t worry cause they are working on a cure
If they work long enough, we’ll ﬁnd out for sure
That PD and its pain are out the door
Now, I no longer wonder where I’m bound Where I’m bound
Now, I no longer wonder where I’m bound Where I’m bound
Someday the world I used to know will call me back and bid me go. Then my PD will disappear and life's meaning will be clear. But till that time, I'll sit and wait . . . Still loving every day and every one I meet. - Gregg
I retired from the Prescott Fire Department after 24 years of service. I was an avid hiker. I worked out regularly and built sets for a local theatre. For Tim Sheehan, life was good! However, on one of my weekly hikes in 2010, I noticed a bit of a drag in my left leg. No worries. I am right side dominant. I also noticed my left index finger and thumb tapping mildly together. I was mostly curious, no alarm. Because these symptoms persisted, I saw a neurologist who diagnosed me with cervical spine issues caused by age related arthritis that were a normal part of aging.
Fast forward to 2016. My wife and I relocated to Sun City Grand. The finger tapping and foot dragging were slightly more prominent. Relocation meant new doctors. My new primary care physician interviewed me and gently told me he believed I had Parkinson’s Disease. The local neurologist confirmed the diagnosis.
The Parkinson’s community in the west valley is quite robust. The Parkinson’s diagnosis did not mean I was going to fight the stiffness, gait irregularities, tremor, dyskinesia, facial masking and isolation alone. There are support groups, classes and exercise groups to help manage the condition.The diagnosis need not be devastating.
The group I most look forward to attending is the Tremble Clefs musical support group. North West Tremble Clefs, directed by music therapist Sun Joo Lee, which meets at the Sun City West Christian Church, 20803 N 151 Ave, Sun City West every Tuesday morning at 9:00 a.m. Tremble Clefs Arizona a 501(c)3 tax exempt organiz ation has had a presence in the west valley since 2008. The Sun City West site is new, only operating since summer.
Tremble Clefs welcomes anyone with Parkinson’s Disease and their caregivers. The group practices exercises to improve posture and strengthen voice as well as singing to help delay one of Parkinson’s onerous outcomes which is loss of normal vocal abilities. In a joyful supportive atmosphere Sun Joo leads the group through movement, stretching, beat keeping and vocalizing. Our voices strengthen. Our spirits, balance and memory improve. This therapy is fun! Many in the group live in Sun City Grand. You can learn about the benefits of music therapy on the TrembleClefsArizona.org web site. Anyone with Parkinson’s is encouraged to check us out. You can call new member contact Beth Lee at 623-556-6048 or just drop in and pay us a visit on Tuesday morning!
By Tim Sheehan
Tim was active in the West Side Tremble Clefs and stepped forward to lead the newly formed North West Tremble Clefs group which meets in Sun City West. Originally this article was published by the Estrella Publishing Company in “It’s a Grand Life magazine” in their December 2019 issue.
West Side & North West Tremble Clefs ready to sing - Tim is front row on the far right