JFK Johnson Rehabilitation Institute’s Parkinson’s Choir or ParkinSINGS in Edison, NJ

Studies show that singing can help maintain strength in the muscles involved in speech and voice in people with Parkinson’s disease. Additionally, scientists have found that singing may reduce anxiety and improve overall quality of life. Through a Parkinson’s Foundation community grant, Hackensack Meridian JFK Johnson Rehabilitation Institute provided the Parkinson’s community with a fun way to exercise voice, speech and swallowing muscles ― through singing!  

In August 2019, ParkinSINGS, a choir for people with Parkinson’s disease and Parkinson-Plus syndromes, was established. Led by choir director and speech language pathologist, Alyson Chananie, and musical director/pianist, Frank Saverino, the group exercised their speech and voice mechanisms during weekly rehearsals. On average, 12 members with Parkinson’s participated in vocal warmups, learned new songs and rehearsed musical pieces from a variety of genres, artists and decades as well as performed in a variety of venues. 

The group sang for an audience of therapists who work with people with Parkinson’s disease at an educational symposium and performed in the opening ceremony for New Jersey’s Moving Day in September 2019.  They performed an 11-song set during a holiday concert with the New Jersey Symphony Orchestra and recorded an at-home performance of “Somewhere Over the Rainbow” to share with healthcare workers on the front lines during the COVID-19 pandemic. 

Meet Donna

I was diagnosed with Parkinson’s in 2013. In 2018 I started experiencing swallowing issues, as well as increased cognitive issues and my doctor suggested I make an appointment with a speech therapist. A good friend suggested I talk to her daughter who is a speech therapist at JFK Johnson Rehabilitation Institute, which specializes in Parkinson’s. My conversation with Aly, and the information she provided, helped me set a course of action going forward…. Aly told me about a singing program she wanted me to join. I told her that I couldn’t sing at all, but she asked me to at least come to the first meeting. I’m glad I did. Being part of the ParkinSINGS choir has been an incredible experience.

Not only does it help keep my voice and vocal chords ‘in shape,’ it has also helped build up my confidence. When asked if I would consider doing a solo at our winter concert, I said no way, but then I thought about two other members who did solos at the 2019 Moving Day Event, and it was their courage that inspired me to take that risk. Music is soothing, therapeutic and relaxing. There’s no better way to forget about our limitations due to Parkinson’s, even if it’s just for a little while, than being part of ParkinSINGS ― it’s a support group meeting with a fun twist.

Research and Beyond

In August, the program began collecting information about communication, level of happiness, how much PD affects quality of life, swallowing capabilities and voice. Voice measures were also obtained including maximum decibel level, maximum phonation time, fundamental frequency and clinician’s observation of voice, speech, fluency and prosody. 

Next, we will administer our final quality of life and/or obtain final objective voice and speech data. Our hope that we find a positive correlation between participating in this singing group and the areas we previously assessed. Through personal comments and anecdotes, we can say with confidence that quality of life has improved in many participants.

Participating in live and recorded performances for the public, the members of ParkinSINGS were not only moving muscles, using cognitive abilities and contributing to their own positive quality of life, but also bringing joy to and increasing awareness in their family, friends, and care partners, local healthcare workers serving the Parkinson’s community, and audience members living with Parkinson’s. It is our wish that we may continue to provide these services to our patients free of charge. We hope to reach more patients by communicating our mission and advertising to local neurologists, physiatrists, therapists, and Parkinson’s support groups.

The George Foundation’s Singing with Parkinson’s in Roswell, GA

Singing with Parkinson’s, Atlanta’s first therapeutic choir for individuals with Parkinson’s disease (PD) and similar diagnoses, has been providing Neurologic Music Therapy services to the Parkinson’s community of Atlanta since 2018. 

This free program incorporates evidence-based therapeutic interventions designed to address vocal and oral-motor symptoms of PD, while also providing musical community for participants and their caregivers. Since its foundation, the choir has grown to include almost 20 regular members who participate in weekly rehearsals and perform in solo concerts and at community events.

Among these members is Brent, who was diagnosed with Parkinson’s in 1997. A former elementary school teacher and pianist, Brent had to give up his work and his musical outlet as a result of his motor and speech symptoms. In the spring of 2019, Brent discovered Singing with Parkinson’s when the choir performed at his PD support group in Duluth, GA. “At the end of the performance there was a delightful invitation to join the choir,” recounts Brent, “Which immediately I did!” 

Since that day, Brent and his wife have been active choir members, meeting for weekly rehearsals with other singers with PD and their caregivers and joining the choir in a variety of community performances. Both note the positive impact that music therapy has had on Brent’s speech, as well as the emotional benefits that a musical community provides. “Working with the vocalizations has been such an asset to provide extra support to my speech exercises,” says Brent. “Getting to know new people [who] . . . share the same challenges has been very rewarding. It has definitely been a great extra benefit to add new friends, to socialize outside the rehearsal and add fun to our daily routine.”

The program is designed and directed by board-certified music therapists with additional training and certification in Neurologic Music Therapy. Data taken after every rehearsal has documented measurable progress in participants’ oral motor functioning, including improvements in breath support, articulation and speech pacing. The choir continues to build its membership and engage in community outreach via local performances and presentations, and music therapists with the George Center for Music Therapy continue to advocate for access to Neurologic Music Therapy at local and regional events. This free program is made possible through the generous support of the Parkinson’s Foundation.

Singing with Parkinson’s meets every Tuesday and is currently holding virtual rehearsals for the duration of the coronavirus pandemic. For more information about Neurologic Music Therapy and/or how to join this free choral program, contact Claire Morison, LPMT, MT-BC, at claire@thegeorgecenter.com  or 678-701-1203 ext.4.

HeartSprings Art and Choir Studio in Fargo, ND

Today I don’t hear the voices of hope and healing come tumbling out of the upstairs choir room. The sweet sounds of “Hallelujah” usually resonate through the hallways of HeartSprings Community Healing Center with choir director Michelle Gelinske accompanying with grace and power, voices in unison; one purpose, one heart. During the COVID-19 pandemic our task became to get the voices online. Can we really do a choir online? 

In a short amount of time and with a young incredible assistant we quickly adapted to an online music room. We had to change our website so we could take online fees; pay for Zoom business so we could host hour-long meetings and add a new microphone so people could hear Michelle sing and speak along with the choir. It was a mad dash, but we did it! We were able to bring not only the choir, but art and other exercise programs to our Parkinson’s community that were waiting for their “medicine” of moving their legs, hands, and voices! Plus, they just wanted to see each other and say “Hi, are you OK?”

Through the years the Tremble Clef Choir has touched many lives of those living with Parkinson’s. Not only has it affected participants, but their families and the Fargo-Moorhead community. Practicing techniques such as breath control and vocal projection, hesitant voices are strengthened. Improvements are also noticeable socially and emotionally. With weekly practices and many performances, the choir has created a community in which to come together, share, perform, grieve and heal. 

The Tremble Clef Choir began meeting in the fall of 2010 at HeartSprings in Fargo, ND, with Michelle Gilenske as volunteer director. The choir began as five members and their partners has now blossomed to 25. Michelle directed the choir as a volunteer for five years before receiving compensation for her efforts. This speaks volumes about her character and generosity.  

The choir’s first public performance took place at the Plain’s Art Museum in 2014 and has since become an annual event taking place in December. In 2015, the choir began receiving invitations to numerous locations to perform. The Tremble Clef Choir often travels to local assisted living facilities and retirement homes. These performances have brought tremendous joy to residents, family and friends. With a Parkinson’s Foundation community grant and under the direction of Michelle, the Tremble Clef Choir has continued to grow.  

In 2017, Michelle was honored at the 44th Annual Woman of the Year awards by the YWCA of Cass Clay in the category of Health and Wellness for her continued work and dedication. Her love for music and helping others is inspirational. Her kindness, knowledge and ability to positively affect others leaves a lasting impact. We are extremely proud of her accomplishments and grateful for her outstanding work. 

The impact in which the choir has had on the lives of those involved and effected is truly profound. This can be seen in the relationships formed, the enthusiasm created and the outpouring of support. Earlier, a choir member had passed away and his sister wrote the following letter: “I want all of you to know how much he loved each and every one of you, and how much joy his singing with you brought him. I also want to thank you all for the wonderful tribute you shared at his funeral. Your voices raised in song brought much comfort to us all.”  

That is what community, singing , kindness and compassion does. The choir has been a joy and a blessing. Join us online at heartspringscenter.org!

Growing up, my parents insisted that my sisters and I write thank you notes after a birthday or holiday and what seemed like everything in between. We were taught to say please and thank you after every encounter throughout the day. To say our prayers and to give thanks at each meal and each night.

When I count my blessings, my amazing mom and dad are at the top of that list.

They raised four daughters together — four fiercely independent, determined and caring women. They sacrificed so much for us — to ensure our education, health and that we had a nice home and nice things. There was always love, acceptance, humility and kindness. And gratitude.

When the time arrived for my parents to finally retire and perhaps splurge a bit on themselves for a change, that was not how the cards were dealt.

Not long after my dad retired from a 46-year engineering career at Boeing, he was diagnosed with Parkinson’s disease (PD). While the news was not what we expected, it was not a significant surprise. We knew something was different, something was off. We chalked it up to a change in pace since leaving the workforce, to a bit more anxiety due to having his grandchildren’s energetic little feet running around the house.

Although it was not what we envisioned, our family faced this challenge head on. We all learned as much as we could and assumed our roles in the process. My mom quickly became my dad’s staunch ally and advocate. She left no stone unturned in terms of looking for the best doctors and the best overall course of care. We all know this disease requires care partners, the often unsung heroes coordinating and orchestrating behind the scenes.

My sisters and I did everything possible to support my dad and my mom. My sister Margaret worked at a recreational facility — so she was the movement expert. My sister Julie is a nurse — so she was the medication expert. My sister Carrie is a speech pathologist — so you can certainly guess what her expertise entailed. I was the researcher. So I jumped right in, signing up for Parkinson’s Foundation resources, subscribing to newsletters and volunteering with a local Parkinson’s group in Dallas, TX. We were all so thankful to have each other to navigate through this together. Even through the darkness, what a gift it was to have our gratitude for each other.

Living out of state while my dad’s health continued to decline was excruciatingly difficult. But I made frequent visits and was able to spend an incredible amount of quality time with him during his last few years. I will never forget one morning, after helping him get dressed, I was on the floor tying his shoes and he looked down at me with the sweetest smile spread across his face. I smiled back and he said to me, “You are such a good girl.” He and I both knew our roles had been reversed.

This amazing and strong man, who had tied my shoes for years when I was little… I was now the one taking care of him. We all were. Our whole family banded together to ensure my dad had every resource and ounce of assistance that we could provide. He loved us unconditionally and we loved him back with that same endless, unwavering love.

As my dad’s Parkinson’s worsened, it was extremely difficult to watch. Here was this man, this invincible, otherwise healthy man who deserved to be enjoying his retirement. Instead, he was losing mobility and becoming less and less independent as time went by. Lewy body dementia, that terrible companion that can manifest with Parkinson’s, began to take its toll. While we did our best to keep him active and moving, he eventually started using a wheelchair and soon it became too difficult to keep him at home with my mom.

Going to visit him in the nursing home for the first time was an absolute punch to the gut. I was physically sick as I left and had not ever cried as hard as I did that day, until the day that we lost him. Those words are still hard for me to say three years later… we lost him. But really, we lost him even years before that to Parkinson’s.

I share all of this to paint the picture of how Parkinson’s impacted him and our family. But, there is light in the darkness. We had so much to be thankful for during this whole process. We were proud of the team we became. We showered him with love and support. We were so proud of my dad. He never complained, never made a fuss, never wavered. He fought valiantly and courageously, but humbly and quietly. That was his nature.

Besides gratitude, the resounding theme throughout this entire process was humor. My dad had a wit and an unassuming charm about him. He was the person you would want to sit next to at a party or event. He made all of us laugh, including his doctors, nurses, therapists and so many others along the way. Even as his brilliant mind was slowing down, the wit and humor seemed to find its way out. For that, we will always be so grateful.

Bill Heidger was thoughtful and kind. He was selfless and humble. He was driven, determined and organized but yet also had such an easy-going nature. He was an incredibly hard worker, and also knew how to unwind and have a great time. He was just an all-around wonderful person with such a kind and caring heart. He was always there, loyal, steady and ready.

May we all be grateful for anyone like my dad who has been in our lives. And may we all try to be that person for others.

Find resources to help support your loved one with Parkinson’s by calling our Helpline at 1-800-4PD-INFO (1-800-473-4636).

Unfortunately, Parkinson’s disease (PD) has been a part of my life story for quite some time. In 1985, I gave up on my dream to go to Nashville to work with The Nashville Network so I could move back to New Jersey to care for my parents. They had both been diagnosed with Parkinson’s. For the next 10 years, I was their primary caregiver.

My parents were vibrant, active people before Parkinson’s. My father, John, was a successful production manager of the control panels on the Gemini, Mercury and Apollo space missions, which is why I was deeply saddened the day I walked into the kitchen — many years after he retired — and he introduced me to his co-worker, but all I saw was an empty chair. My mother, Peggy, was a great basketball player and a runway model in her youth. She worked hard as a secretary and loved to go to Long Beach Island, NJ. She also eventually suffered from delusions. It still saddens me that she was never really able to enjoy the limited time she had with her granddaughter, my first-born, due to the fact that she couldn’t recognize her.

Despite being prepared to help my parents cope with motor symptoms typical of Parkinson’s, I was surprised when they both began to experience non-motor symptoms including hallucinations (seeing things that aren’t there) and delusions (false beliefs). At the time, I didn’t know that PD associated psychosis affects more than half of people with Parkinson’s over the course of their disease.

In 2014, Parkinson’s reared its ugly head again, when my sister was diagnosed. Where once she was full of life and quick-witted, today her personality is overshadowed by seeing things that aren’t really there. Frequently, she will see a snake on her hand, men in the trees outside, dogs at the door or even barbershop quartets in the wall.

Caring for people who see or believe things that are not real can be emotionally draining. My best coping mechanism is to sing. In 2015, I wrote and performed a song at an event hosted by Light of Day, a non-profit dedicated to Parkinson’s. Performing was cathartic.

Soon after, I was told about a clinical trial for a medication, Pimavanserin (brand name: Nuplazid), that specifically treats hallucinations and delusions associated with PD psychosis. Although my sister did not have access to this medication in its trail phase, I jumped on the chance to share my story as a caregiver with the expert panel that deliberated the recommendation of the drug’s approval to the US Food and Drug Administration (FDA).  

After 30 years of feeling helpless while dealing with PD associated psychosis, I felt empowered to be a force for change. I was overjoyed that my story was heard!

Thankfully, the first treatment for PD associated psychosis was recently approved by the FDA. We’re still uncertain how the medicine will help my sister’s current PD symptoms, but at least there is hope.

I share my story to raise awareness about the prevalence of PD psychosis and the impact it has on people with Parkinson’s, caregivers and their families. My advice to others is to learn more about non-motor symptoms and to talk to your loved one’s doctor. Reach out for support and know that you’re not alone.

Read Psychosis, A Mind Guide to Parkinson’s disease to learn more

“There is a large population of women out there, as well as people with Young-Onset Parkinson’s disease (YOPD), who are still of working age, that need our help,” said Susan Brister, Parkinson’s advocate from Lilburn, GA. “The Parkinson’s Foundation has found a niche in reaching these communities to offer the resources they need.”

Susan lives with YOPD and hopes that her appearance in “Better Lives. Together .” the Parkinson’s Foundation public service announcement (PSA) will spread awareness about Parkinson’s disease (PD), especially among underrepresented groups.

In the 16 years since Susan was diagnosed, she has learned to adapt to the challenges of Parkinson’s with grace and a healthy dose of humor.

“Parkinson’s taught me to take life a little less seriously, and that living with a disease with no cure doesn't have to be as bad as it sounds,” said Susan. “Parkinson's will change your trajectory in life but doesn't have to define who you are.”

When Susan was 34, working in a stressful corporate job with a newborn and a two-year-old at home, she noticed that something was not right with her fine motor skills.

“I remember ordering wide grip pens from my office’s supply company because my writing has gotten so bad and so small,” said Susan. “I had my second child in 2004, and when it came time to write thank you cards for baby shower gifts, I couldn't do it. My writing had become illegible. I had to hire a couple of high school girls to write the cards for me.”

Shortly after that, Susan noted that she was struggling to perform simple tasks like scrambling eggs or brushing her teeth. She decided it was time to seek out a neurologist.

“It was my seventh wedding anniversary in 2005 when the doctor told me ‘I think you've got Parkinson's disease,’” said Susan. “My mind immediately went to a vison of an elderly person shaking with tremors and I didn't want to think about it, but the doctor said, ‘I encourage you to get another opinion.’”

Shortly thereafter, Susan’s diagnosis was confirmed by a second doctor, and she began to consider what lifestyle changes she would need to make.

“My manager gave me a role that was more flexible and less demanding in terms of life-work balance, but at the same time, less responsibility also meant less pay and I was used to having the opposite. I was always proud of being a strong female leader in my industry, so it was quite difficult to accept.”

By 2009, managing work with PD and two young daughters had become untenable. “The stress exacerbated all my symptoms,” said Susan. Turning in her business cards was especially hard: “I felt like I lost my identity,” said Susan.

Instead of being discouraged, Susan, now a full time stay at home mom, had new business cards printed. “The cards had the job title ‘Best Mom in the World,’” said Susan. “It was my tagline because it’s what my daughters always call me.”

Today, Susan’s independent daughters are quick to help with her Parkinson’s-related challenges. “My youngest one has nice penmanship, so she helps with writing letters or paperwork at the doctor’s office. My older daughter has an intuitive sense of when I'm getting frustrated with my ability to explain something to someone like a doctor or mechanic. She’ll just say ‘Mom, hold on, I'll do this for you,’ and she'll step up and explain what I’ve been struggling to articulate. She takes the ball and runs with it. I'm really proud of both of my daughters for that support.”

Susan stays active to keep her PD symptoms in check through yoga alongside a trainer and taking evening walks with her husband. “It's our bonding time,” she said. Susan also enjoys spending time with her family watching her younger daughter play softball and her older daughter play volleyball.

Susan also does her part to support young women with PD, offering a listening ear to those considering deep brain stimulation (DBS) surgery. “My social worker contact will call me and say, ‘hey Susan someone is contemplating getting surgery, are you willing to talk to them?’ My first response is always ‘yes, don't even ask, just give my number,” she said. “I didn't have a real person to talk to when I was preparing for surgery in 2017, and if I did, it would have been an elderly man, which wouldn’t have been helpful for me.”

Susan’s advice to people who are newly diagnosed with PD is straightforward. “It gets easier to talk about it and deal with the longer you have. In the beginning it is very emotional because you think the worst, but get medicated, get a good doctor and take your medications on time and you will improve your quality of life.”

Watch our “Better Lives. Together.” public service announcement