My name is Paolo Tatafiore. I'm 60 years old, born in Italy, now a permanent resident of the U.S. I will soon become a citizen. I used to be a concert pianist. You can check out some of my performances on YouTube. Two years ago, the first symptoms of a movement disorder started showing up out of the blue.

While performing on stage I was making mistakes I had never made before, and I realized that there was something wrong with my right hand. I was losing control of the fingers. A few months later (in October 2020) I developed a steady tremor in my right arm, that radiated to my right leg and neck. Muscles stiffness and twitching also affected the same areas. I had to give up concerts completely.

The next step was obviously to visit a neurologist. He diagnosed me with Parkinson’s disease (PD). I was devastated. My life disrupted.

At the moment, I receive care from a team of doctors at the University of Miami, a Parkinson’s Foundation Center of Excellence. I take a lot of medication in order to try and keep the tremor at bay. Without it I'm just a useless shaking mass of flesh and bones. My current neurologist is Danielle Shpiner, MD. She is one of the best doctors I have ever met. Patient, compassionate, excellent listener, she has all the knowledge and has answers to all questions. She is up to date with the cutting edge research.

We are now discussing the next steps for me to be put on schedule for a deep brain stimulation (DBS) surgery that will hopefully substitute the most part of the medication in controlling and eliminating the tremor and other symptoms.

She put me in touch with social workers of the University and they introduced me to Parkinson’s Revolution. I want to do my part helping raise funds for initiatives that help the Parkinson’s community.

A book inspired me to exercise consistently to help with my symptoms. It has been about two years, and I have been taking long brisk walks every other day (two or three miles), alternating with short slow walks the remaining days. Sometimes instead of walking I bike ride on the boardwalk in front of the beach. I take a day off every now and then if I feel exhausted.

After two years I can say that the tremor has stopped in the right leg and the twitching has reduced to a minimum. They remain in the right arm though, which is not as much affected by walking and biking. I am now intensifying exercises with and without weights for the arms and neck and I hope to slow symptoms in the arm too, because I think that I have been able to reverse the symptoms in the leg. I can't find any other explanation. If it were the medication that produced the reversal, it would have done something for the arm as well. That didn't happen.

My advice for people who are new to Parkinson’s is to not rely on medication alone. Medication is a temporary suppressor of the symptoms. Everyone knows that there is no cure for Parkinson's disease at the moment. The only proven thing that keeps the disease at bay is exercise. Don't get discouraged, get out and shake it!

It may be hard at first but be consistent and you will get results. If you get stiff while walking, don't give up! Keep doing it, it takes some time but then the muscles will loosen up and you will walk better. It will improve your mood too, as opposed to sitting in the house and getting depressed!

Get moving with your community at a Parkinson’s Foundation fundraising event near you!

Register for Parkinson’s Revolution

Find a Moving Day near you

University of Texas Southwestern Medical Center’s Parkinson's Boxing Program in Dallas, TX

When Dr. Sam T’s doctor told him about the Parkinson’s Boxing Program, he readily agreed without knowing what to expect. “I had been working with a trainer for a few weeks and was happy to have another outlet for exercise” Dr. T said. “My first thought was this would be strictly an exercise class, but it turned out to be much more.”

The 12-week community boxing class is designed for people living with PD and their families. Thanks to the Parkinson’s Foundation community grant and the donation of space at the Preston Hollow United Methodist Church, we are able to provide this class at no cost to the participants. There are two classes per week consisting of high intensity boxing activities: heavy bag work (allowing for punching sequences), cone drills, and strengthening exercises focused on the lower extremities and core.  

The class utilizes students from The University of Texas Southwestern Medical Center Department of Physical Therapy to help coach, guard and encourage the fighters. This program is beneficial for the boxers as it is a high intensity exercise built on community, which is good for the body and the mind. In addition, we expose and train physical therapy students to grow into excellent clinicians who are better prepared to serve those living with PD. “I want to thank the student volunteers who came to encourage and help us. They were enthusiastic and made the time fly by,” Dr. T said.

The Parkinson’s Foundation community grant supports the Dallas PD community. Although the changes in strength balance, and mobility have been exciting, the feedback of the participants on what they gain from the community atmosphere has been so encouraging! “The other people in the class became friends. We were able to discuss our symptoms and problems in ways only someone with PD understands. Those friendships became as important to me as the exercise itself. I benefited a lot from the program and recommend it for others who have PD, ” Dr. T said.

The outcomes have been remarkable as expected, as we track the fighter’s progress before and after the program. We have seen substantial improvements in functional strength (floor to standing transfer), dual task parameters (walking while counting), self-selected walking velocity, backwards walking, and dynamic balance.

We plan to continue to raise money through grants and donations to continue to run this program in the Dallas area! We feel as though it is beneficial for the fighters and the student coaches.

Tampa JCC and Federation’s Tampa Bay Parkinson's Disease Newly Diagnosed Wellness Initiative in Tampa, FL

The Tampa Bay Parkinson’s Disease Newly Diagnosed Wellness Initiative is a collaboration between the Tampa JCCs and University of South Florida, a Parkinson’s Foundation Center of Excellence, to improve the lives of people impacted by Parkinson’s. The program helps those newly diagnosed with Parkinson’s participate in this established comprehensive Parkinson’s wellness program. With more than 250 participants, the program provides an inclusive and welcoming environment for Parkinson’s patients and their families.

It provides a multi-faceted approach to help those with PD focus on hope and possibility with dignity. Activities include weekly exercise classes; bi-weekly support groups for people with PD, the newly diagnosed, caregivers and frequent educational programs where Parkinson’s Foundation resources are shared and distributed. In addition, there are social programs planned by program participants, which encourage individuals, family and friends to feel active, connected and empowered in a strong, welcoming and Parkinson’s-education community.

“I was diagnosed with PD after my children expressed their concerns with my difficulty moving, my facial expressions and my speech. They attended my appointments with my primary doctor and neurologist. I was living in south Pinellas County with little access to programs in support of PD. We heard about the programs offered by the JCC in Tampa so I moved to Tampa to be able to participate in these programs. After four months of active participation I get many positive comments from family and friends about the significant improvements in my physical appearance, movements and speech. I currently see a personal trainer twice weekly and participate in boxing. I also do chair yoga and Nia once a week. I attend Tremble Cleft which has significantly improved my speech. And the boxing has improved my stability and mobility. In addition, I participate in the PD Support group which has helped me mentally and emotionally. I currently attend these programs at both the JCC on the Cohn Campus & the Bryan Glazer Family JCC facilitates. I am very appreciative for the improvements to my lifestyle as a result of all of these programs.”
- Richard Montalbano, newly diagnosed, new participant 

“The program has proven to be extremely valuable in my overall battle daily with Parkinson’s. My mental outlook has improved as a result of this class. I feel more confident in my daily functions requiring balance and strength Moves we are required to do during class support post rehab exercises I do daily to maintain my quality of life. Bottom line is the program is an integral part of a daily ritual of movement to maintain both mental and physical well-being.”
- John Mollner, newly diagnosed, new participant 

“I feel very blessed to have access to this Program and the wonderful staff that administer and run it. I regularly attend three to four classes a week. I find that Tai Chi, Rock Steady Boxing, and Tremble Clefs have quite a bit of complimentary activities and approaches that help to strengthen the benefits that I get from each class that I attend. During my last appointment my doctor was so impressed with my breathing that he said it was the best breath that I had ever taken with him. He said, ‘keep doing what I have been doing with the program.’ I have seen a big improvement in my ability to manage my disease and function better since starting the program.”
- Wayne MacLaughlin, newly diagnosed, new participant 

“I want to thank the JCC for welcoming us.  I take three classes and I feel that each class gives its own benefits.  The benefits in coordination, motion and balance play a great part in keeping my mobility on a positive level.”
- Ted Mook, newly diagnosed, participant of 3 years

“This is a valuable resource for people with Parkinson. I have greatly benefited from the Tai Chi class and now the new Tremble Clef program has helped me strengthen my vocal cords through singing. I was diagnosed six years ago. I have been coming from 25 miles away to participate. 
- Robert Packard, participant of two years

Find a local Parkinson’s wellness class in your area. See the full list of Parkinson’s Foundation Community Grant Recipients.

The Poise Project’s Poised for Parkinson's in Candler, NC

We are looking forward to building on the success of "Poised for Parkinson's" in the Southeast with renewed support from this 2019 Parkinson's Foundation Community Grant. This is an Alexander technique (AT) based course for people living with Parkinson's and their partners to learn how to bring these practical skills into their daily lives. 

“We hope that everyone living with Parkinson's and everyone who is living with them gets this course at some point. It would be wonderful if people could have it at diagnosis,” said Monika Gross, Executive Director.

We have Alexander teachers here in North Carolina, as well as around the country and world, who are eager to be trained to deliver this new replicable program to their local communities. This summer besides the granted trainings in North Carolina, we will also be training teachers in this course in California, and in the fall, in Chicago and in Hungary and Switzerland. 

“We are excited to keep growing and developing the footprint for this course, and to be able to offer people living with Parkinson's and the care partners who love them these powerful Alexander technique-based skills as a way to enhance their own self-care, agency, and integrity in the face of the daily challenge of living with Parkinson's."
– Monika Gross, Parkinson’s Foundation Community Grant Recipient

Meet Chuck & Alice, Chapel Hill NC "Poised for Parkinson's" course participants

"What impressed me the most was feeling at ease, even with Parkinson's, which is sometimes hard to do. Knowing that Alice was there too, and we were doing the same things, that we understood each other better, especially in light of how Parkinson's was impacting our lives, and our marriage. I felt that this course built on itself so beautifully, so well. Each lesson built on the previous one, and continuing to go back and revisiting helped reinforce a lot of what we were doing... I would definitely recommend this." – Chuck 

"I really liked that I could participate with him. I learned a lot for myself, but it really helped me understand better about Parkinson's. Why sometimes he needs more time or can't quite connect in some ways. But now we're connected on that. We share this together. ... I've been taught skills to help him, but he has to do it himself." – Alice 

Meet Jim & Monica, Asheville NC "Poised for Parkinson's" course participants. 

“Physically I've benefited. I think that I can do many more things than I could when I started. I'm more positive, I'm more confident. I have hope for the future. I think that mentally I've improved. I'm more aware of what's going on. I'm more interested in my surroundings. I've started doing things again instead of using it as an excuse not to do things… learning that different way that inspired my confidence. My only regret on this class is that I didn't know it and I couldn't get it three years ago.” – Jim 

“Knowing that, one, you are not alone, and two, you can face this with the knowledge that you've gained, and try to improve. Anyone who has any physical impairment, you feel like you cannot do it yourself. But we feel with all the knowledge that we've gained in the classes I think that it has improved his mental state as well. Neither one of us are blind to the information. We can share it more.” – Monica

Invertigo Dance Theatre’s Dancing Through Parkinson’s in Culver, CA

Since 2011, Invertigo Dance Theatre’s Dancing Through Parkinson’s (DPT) program has provided dance classes to people with Parkinson's disease, neurodegenerative and aging-related disorders at sites near Los Angeles and Culver City. The classes promote connection, community, physical movement, mental clarity and joy.

Jeanie was diagnosed with Parkinson’s almost eight years ago and participates in both classes. From the warmups, brain teasers, ballet barre and seated and standing choreography, the combination of music and dance helps participants move and stay active. Although medicine can help, exercise is incredibly helpful to manage the symptoms of PD. “I have very few tremors, my posture is relatively erect, my mind is still sharp, I feel confident being in public. I have challenges, but because of Dancing Through Parkinson’s I know that I can overcome them and deal with them if I keep moving and dancing,” Jeanie said. 

Dancing Through Parkinson’s creates community and offers its 100 dancers a safe space to overcome challenges related to PD. “In our DTP classes there are no mistakes, only solos,” said Laura Karlin, Artistic Director. Through DTP classes, participants experience movement in a non-judgmental, positive community. No matter what movement ability, anybody can participate in a class. It is a unique and extraordinary program where everyone, regardless of disease progression, is included, valued and benefits from the class. Caretakers and family members are also encouraged to join. In our DTP classes, everyone can have fun and stay active through dance. 

“I know that I have a community that supports me. We lift one another up, share ideas, and care for one another regardless of what we bring to the dance floor. And the best part is, we get to take it all home with us and realize that the tremors, rigid muscles, and other discomforts can be assuaged if we keep moving. Stay active, stay positive, and keep coming to class because there’s always a reason to dance! Thank you, DTP, for saving my life!”
– Jeanie, Parkinson’s Foundation community grant participant

In the future, Invertigo plans to reach more communities in Los Angeles by offering bi-lingual classes in Spanish. Our Dancing Through Parkinson's class was featured in Spanish on Telemundo, "Enfermos de Párkinson “danzan a su propio ritmo" on February 6. 

We also plan to reach more people and make our program more accessible through virtual DTP classes. During the COVID-19 pandemic, staying connected through digital platforms has become increasingly important. We are currently working with Teaching Artists to develop a new online program to allow DTP dancers to take classes from their own homes and to stay connected to their DTP teachers, who have been a source of inspiration and support. Our hope is to increase our online presence and foster greater access to and awareness of the offerings of our program.

We hope to grow our DTP program by increasing the number of sites as well as presenting and teaching at more PD conferences and events. In the past, we have taught and presented at events. As we grow, we will continue to be involved in the PD community and contribute even more.

Rock Steady Boxing at the MAR-JCC in North Miami, FL

The MAR-JCC, located in North Miami Beach, FL, currently offers the Quality of Life – Senior Wellness Program (TQOL) for seniors through a supervised and monitored comprehensive fitness and exercise program. The TQOL offers seniors with Parkinson’s with a daily program specifically tailored to them, developed in conjunction with the Parkinson’s Foundation. 

Rock Steady Boxing at the MAR-JCC launched in August 2016. The program exceeded anticipation, from an estimate of 40 to the now more than 150 boxers. For the past two years, all new participants have been neurologists’ referrals. Although these physicians have never seen our facility, they see the improvement in their patients ― boxers in our program. 

Based on that improvement and patient testimonials, anyone newly diagnosed with Parkinson’s is prescribed PD medication and referral to our program as a recommended part of their PD treatment. From the doctor’s office straight to Rock Steady Boxing at the MAR-JCC. This unprecedented success continues to reaffirm the profound need for this program as well as the need for its expansion. 

Rock Steady Boxing is offered in more than 900 gyms worldwide. This program uses the mechanics of boxing in an “arduous hour” for those with Parkinson’s by focusing on PD symptoms including balance, stiffness, tremors, coordination and soft voice syndrome. This is accomplished through non-contact boxing, punching a heavy bag, doing footwork, stretching, resistance exercises and aerobic training. The MAR-JCC, an affiliate of Rock Steady Boxing with staff members certified in the program, replicates the program’s proven techniques.

Rosh was one of our first boxers, a 48-year-old a hospitalist. Two years later, in 2018, he retired from practicing medicine due to his PD. He had recently lost his father and having to stop practicing medicine was an added hardship. He is one of the most motivated boxers in our program and given his overall good physical condition and willingness to be of service. We suggested he become a certified coach. He would be a tremendous asset to the program. Coaching would help him stay busy and he would also serve as a motivation for other boxers to become coaches. In June 2018, Rosh went to the two and a half day training and became a coach. Since then, he volunteers as a coach twice a week working with our Chair Boxers. Immediately after, he does his own one-hour workout. 

Another boxer is Marc, a 79-year-old retired dentist who initially came to our program in a wheelchair assisted by a trusted aide. At first, Marc kept to himself. The first part of his class involves stretching exercises with all the chair boxers working together while sitting down as a group in a circle. Then a warm up session, with each boxer working individually with an aide, instructor or volunteer. 

This is where the magic started. Rosh began to work with Marc. Week after week, he would work with him. In time, Marc became comfortable with Rosh, who gained Marc’s trust. Marc became more present and outgoing and embraced the challenges posed by Rosh. Rosh transitioned Marc from a wheelchair to a walker and in time from a walker to a cane. 

Marc felt encouraged, supported and confident to walk ― by himself ― several times back and forth across the basketball court. The first time it happened, everyone stopped their workout to contemplate Marc’s incredible accomplishment! It was quite a sight! We were so proud of him and of Rosh as well as thrilled for both. Rosh’s selfless commitment and dedication to a fellow boxer and the impact he has had on Marc’s life is priceless. Marc’s courage and resilience are immeasurable. This dynamic duo shows all of us what determination can accomplish. Marc and Rosh stay in contact outside of class as well. 

Their success story confirms what our boxers chant at the end of every session: impossible is nothing! In March, during the pandemic, we sent Marc some videos that showed his progress to keep him motivated. “As the world is in crisis and I review my life, I wish to thank to thank you for being a part of it, Marc,” he responded.

University of Arkansas for Medical Center Sciences’ Community Fitness PWR!Moves Program

The University of Arkansas for Medical Sciences (UAMS) hosts a free Move for PD class for people with Parkinson’s. The one-hour classes are held twice a week and incorporate 30 minutes of PWR!Moves® movements to aide in mobility, along with 30 minutes of high-intensity interval training. 

Susan, 72, has been living with Parkinson’s for almost seven years. She is a hospice physician who continues to work part time, so she knows the benefit of regular exercise for everyone. She was already exercising by playing pickleball several times a week when she started attending the Parkinson’s Wellness Recover (PWR!) Moves® classes at the UAMS Donald W. Reynold’s Institute on Aging Ottenheimer Therapy and Fitness Center in summer 2019. “The exercises in the Parkinson's program were different,” Susan said. “They were things that really were specific to Parkinson's disease. For me, that was mostly balance. Balance has been something really important for me to work on.”

Susan enjoys the social aspect of the classes, which are her main source of interaction with other people with Parkinson’s. She also likes that the instructor and physical therapist provide the rationale behind what the exercises target and why they work. “I think exercising, now with the help of the PWR! Moves classes, has really helped slow the progression of my disease.”

UAMS hopes stories like Susan’s motivate others with Parkinson’s to join the program. Plans are underway to study the impacts of this exercise program on individuals with Parkinson’s disease, specifically, how exercise affects physical and cognitive performance. There are also preliminary plans to bring this type of exercise to participants in a home environment when travel or distance to travel are barriers.