There was intention in our theme for this year’s September 14th symposium, and for those who attended (and for those who couldn’t but have read or heard about the event), we wanted to instill the importance of building and maintaining resilience to Parkinson’s challenges.
Coincidentally, in this week’s Parkinson’s News Today, columnist Sherri Woodbridge (diagnosed with young-onset Parkinson’s over 15 years ago) focused her subject material with a similar emphasis.
Click here to read her latest reflections about giving up not being an option, and her reminder about seeking purpose…NO MATTER WHAT!
Left to right: Melanie Giles, Marie Lucey, Dr. Stephanie Bissonnette, Linda Hall (Parkinson’s Fitness co-founder), Anne Muskopf, Stephanie Recchia
With location hosting once again provided by the Danvers Community YMCA and their friendly, helpful staff and volunteers – with additional event assistance from YMCA Outreach Director Suzanne Malach – all was in readiness on September 14th for welcoming the 123-plus audience participants, 5 speakers, and 16 education exhibitors, to our “Living Well with Parkinson’s: Building Resilience Foundations” symposium!
Five engaging guest speakers offered guidance about how to live stronger and create and maintain enjoyable, safe ways of everyday living.
Geriatric Medical Social Worker and keynote speaker, Stephanie Recchia, described resilience in terms related to searching within and beyond one’s self and discovering how past experiences and even personality traits affect adaptability to living with life-changing prolonged illness. She stressed the need for creating an interdisciplinary medical team, as well as strong family and peer support. Stephanie’s insightful remarks transitioned into how to re-create (or start) building strong inner foundations that help promote experiences of happiness and productivity.
Dr. Stephanie Bissonnette from the Boston Medical Center and BU School of Medicine focused on neurology. Marie Lucey from the Center for Balance, Mobility and Wellness at Gordon College addressed the importance of physical therapy. Melanie Olson Giles from the Speech Therapy Group in Beverly spoke about maintaining strong vocal communication capabilities and safe swallowing therapies. Anne Muscopf from the Jewish Family & Children’s Service Parkinson’s Family Support Program presented ways of creating activities of everyday lifestyle adaptations, as well as the potential use of assistive devices when necessary.
Parkinson’s Fitness instructors:
left: Dianna Daly, Balance in Motion
right: Kim Crowley, Strength & Conditioning
Once again, Parkinson’s Fitness instructors Dianna Daly (Balance in Motion) and Kim Crowley (Strength & Conditioning), joined by class substitute Sally Zagnoli, had EVERYONE moving and stretching to the lively music they’d chosen to showcase how even five minutes of movement a day can “wake up” anyone’s body! Click here to read more about our instructors and again here for weekly class locations and times in six nearby communities.
We couldn’t provide these educational symposiums without the support of our generous sponsors, participation by willing and wonderful speakers and their, as well as other, dedicated organizations who are helping to create the best possible life-management and healthy-living programs for all who live with Parkinson’s.
Ending with the words of online Parkinson’s News Today columnist and fellow Parkinsonian, Sherri Woodbridge, author of Journeying through Parkinson’sDisease:
“…Hope brings purpose back into view. It shuts out the “what-ifs” and turns down the dial of doubt. It disables the feelings of despair, enables you to have a confident expectation of a cure, finds the blessings in the curse, and faith for a brighter future.”
The Merriam-Webster dictionary defines the word marathon as “an endurance contest” and “something characterized by great length or concentrated effort”. Keith Hall and his son Max are both participating in marathons. Keith was diagnosed with Parkinson’s when Max was young and playing Little League baseball. Life kept racing forward with all of its busyness, but the favorite games of “catch” with one another started to slow down. Parkinson’s challenges began requiring a concentrated effort to stay motivated and keep moving, which has become Keith’s ongoing commitment to himself, his family, and hundreds of North Shore and Cape Ann residents with Parkinson’s who attend the classes and programs he and his wife, Linda, started in 2013.
Over the years and never ones to idly sit on the sidelines and allow Keith’s Parkinson’s condition to bring him to a standstill, Keith and Linda entered their own life’s marathon together as a team. As it is for too many others with Parkinson’s, living well and retaining as much independence as possible becomes its own endurance contest. Keith is the first to encourage getting in the fight and make every punch count!
As for Max, he still loves to watch baseball with his dad on television, and is proud to have both of his parents in the stands when he’s coaching young players during practices and games locally and in New Hampshire and Maine. However, on November 3rd, Max will be honoring his dad by temporarily switching sports and running instead in his first New York City Team Fox marathon race to support the Parkinson’s research being done at the Michael J. Fox Foundation.
Please consider supporting Max as he challenges himself with the same spirit his dad shows every day!
Our 8-week percussion series, led by MedRhythmsmusic therapy instructor Stian Berg Hansen, focused not only on the drumming itself, but also on using rhythm to engage listening, memory, and motor coordination.
During earlier class practice, Stian had the group use alternating drumming hands and clapping movements. This wasn’t always easy at the outset of our time together, especially when Stian also added in having us increase and decrease speed and volume over the weeks that followed. But we improved regularly over time! We also learned how to use boomwhacker instruments, which are colorful plastic tubes of varying lengths and tones of the music scale. Eventually, we divided our circle into three separate sections, with each group of five or eight players beating a different rhythm. The end result?? A pretty rhythmic, integrated sound!
We were able to provide this most recent free music experience through the support of a community grant from the national Parkinson’s Foundation and the generous use of space provided by the Danvers YMCA. From the alternating facial expressions of both focus and smiles, we feel the program was well received by the participants and their care partners!
“Communication, is not a singular process, and a spouse or other significant other often has to be invited into a treatment visit to help them better understand how their own communication style or behaviors may support or limit the progress of their loved ones. …Having a diagnosis of Parkinson’s disease or a related diagnosis can sometimes take a toll on relationships. …If speech and hearing problems are not addressed, talking to one’s spouse, which may have been a pleasurable and emotionally fulfilling part of a couple’s relationship, may gradually disappear and become another burden associated with the disease.” –Mary Spremulli, MA, CCC-SLP
Read more here from Voice Aerobics about communication and swallowing disorders. “Licensed speech-language pathologists and audiologists are eager to help people communicate effectively across the lifespan. Take advantage of their help!” Mary Spremulli
Sherri Woodbridge was diagnosed with Young Onset Parkinson’s disease over fifteen years ago. Her column, “Journeying Through Parkinson’s Disease” appears regularly on the Parkinson’s News Today website (click here), and we often share her first-hand wisdom in our own blog updates.
Sherri can be found working in her garden, going for walks, taking pictures, or reading books to her three favorite grandkids. Taking life somewhat slower, and perhaps with guarded steps, but she’s not giving in…a warrior role model who “gets it”!
If you can relate to others who experience episodes of having your feet “freeze” in place while you’re on your way elsewhere, you likely also have postural instability, meaning your balance is impaired. Quoting from an online article from the Parkinson Foundation, “…these symptoms can cause falling, resulting in a multitude of injuries, a loss of personal freedom, caregiver stress and a reduction in the quality of life (Pirker & Katzenschlager, 2017; Samotus, Parrent, & Jog, 2018). …Current PD medications, therapies or surgical procedures do not effectively address this debilitating unmet need. This lack of options might be changing, due to an intervention called spinal cord stimulation (SCS).”
Information contained in the study is so worth reading and discussing with your movement specialist or neurologist. Don’t pass this by! The results of this study may provide a new gateway to a new “gait way”! READ MORE HERE
Michael Braitsch, a kinesiology professor and board-licensed doctor of physical therapy, states that:
“Parkinson’s motor symptoms mimic normal aging in many ways — only they’re sped up and intensified. Because each patient experiences Parkinson’s uniquely, tailored and one-on-one routines are best. Still, he said, group programs with skilled leaders are also worthwhile, fostering consistency, motivation, performance, community, camaraderie, support and idea sharing.
“Depression and isolation starts a negative feedback loop. So, that’s where a tribe helps,” said Braitsch. …Strength in numbers means we all do better together.”
In a GREAT online post from Parkinson’s News Today, the gist of the entire article mirrors what our Parkinson’s Fitness philosophy has stated and reinforced since we began in 2013! We encourage you to click this link and read the article. You will find many similarities to what we consistently emphasize and encourage! Click below for the article:
Our September 29th “Living Well with Parkinson’s” symposium was attended by 150 people, over 20 supporting information vendors, and highlighted by four great guest speakers!
(left to right: Dr. Terry Ellis, Director, BU Center for Neurorehabilitation – Linda Nikolakopoulos, Registered Dietician and Licensed Nutritionist – Pamela Quinn, PD Dance & Coach, PD Movement Lab, New York – Dr. Albert Hung, Movement Specialist, MA General Hospital)
The printed word cannot possibly portray what became a visible energy field sparking the space provided at the Danvers Community YMCA! Included in the 4-hour program were 2 short but dynamic movement and exercise “samplers” led by Parkinson Fitness Balance and Movement instructor, Dianna Daly, and Strength, Conditioning, Boxing instructor, Kim Crowley. As they do in all their weekly classes, both women had participants willingly joining in “waking up” their bodies and minds in five minutes or less!
Drs. Hung and Ellis emphasized how to optimize time allotted during office visits and physical therapy appointments, as well as the importance of exercise in helping to maintain control over difficult body and cognitive challenges. Linda Nikolakopoulos provided insights into the role diet and nutrition play in remaining healthy and staying strong. Pamela Quinn, diagnosed with PD over 20 years ago, travelled from her own PD Movement Lab in New York (https://pdmovementlab.com/about) to demonstrate strategies for moving and living in “real-life” scenarios. Pam’s vocal exercises to strengthen communication, augmented by hand and arm movements, were a high point for everyone!
Special thanks to everyone involved in making this event an incredible opportunity for learning and participating, with special shout-outs to Lucas Michaud, our photographer from Endicott College in Beverly, to Linda Hall’s friends Sandra Moores and Mary Orne for their assistance with credit card payments, to Suzanne Malach, YMCA liaison, the vendors who supported us financially and provided valuable community information, to the team of Parkinson’s Fitness volunteers who assisted as greeters, registrars, and table helpers…and to Linda Hall, whose tireless efforts built yet another opportunity for motivating people on the North Shore to live well, in spite of their Parkinson’s diagnosis!
Diana Daly, bottom row, 4th from left
Elaine Boone, top row, 3rd from right
Devera Ehrenberg, center row, far right
Parkinson’s Fitness Balance in Motion instructor Dianna Daly (https://parkinsonsfitness.org/about-fitness/class-instructors/) was recently invited by Linda Tickle-Degnen, PhD, OT, FQOTA and professor of the OT Department at Tufts University to participate as one of their guest faculty-staff participants at a university-sponsored Dance for Healthy Aging with Parkinson’s Disease workshop. The goal of the workshop was teaching Tufts OT students how to interact directly and collaboratively with people with Parkinson’s. To help accomplish the goal, Dianna invited two of her local Parkinson’s Fitness class members to accompany her to the event.
Showcasing the incredibly successful work in the field of dance to augment medical technologies used in combatting the progressively debilitating nature of Parkinson’s were David Leventhal, Program Director and founding teacher of the nationally acclaimed Dance for PD program, a nonprofit collaboration of MMDG and the Brooklyn Parkinson Group that leads dance classes around the world (https://danceforparkinsons.org/), and Pamela Quinn, professional dancer and Parkinson’s consultant for people with Parkinson’s, who has lived with her Parkinson’s diagnosis for over 20 years (https://pdmovementlab.com/about). Pam’s personal experience of dance and Parkinson’s gives her a unique perspective from which to analyze physical function, and to imagine creative solutions to the problems posed by Parkinson’s.
According to Quinn, “Dance by its very nature contributes to everyday health: working and stretching muscles leads to strength and flexibility; learning and remembering movement tones the brain; touch and partnering provide social contact, and creative context promotes expression and use of the imagination. People of any age, especially the elderly, need movement, fun, challenge, and connection. This workshop allowed participants to experience all those things first hand and helped them understand how to create such an environment for others as well.”
Quoting Dianna after the workshop experience: “It was great to be there alongside Devera and Elaine to represent our Parkinson’s Fitness community.”
Elaine Boone, one of Dianna’s class members, offers her experience of attending the event: “I really enjoy going to anything that will give me support and, even more, ways to keep me moving. The dance session was very uplifting. Pam and David made the exercises fun and us all so much good advice. Everyone with Parkinson’s should watch Pam’s videos. As someone with Parkinson’s herself, she has discovered so many different moves that can keep us all going. And I enjoyed working with the students. The more they can see people with Parkinson’s and what symptoms we have and what we can do to slow the progression down, the better for them.
Without programs and the wonderful people who give of their time, we would be lost. We couldn’t do it without you all, and thank you for inviting me to the sessions. Please keep up your wonderful work!”
Devera Ehrenberg, another member in Dianna’s classes, shares her positive experience: “The Dance for Health Aging day was full of wonderful exercises we created – starting with the introduction. Bach (or Mozart) filled the room and we moved to the music, creating our own dance, and what followed were flowing movements to other ideas we created. We broke into small groups. The one I was in created paintings – Jackson Pollock throwing paint on a canvas on the floor, or Seurat, lots of dots, etc., as other groups created movements for their ideas. Such wonderful, freeing movements! My Parkinson’s faded away and that lasted , for me, into the next day. I spent the next morning inventing dance movements! I loved it! Thanks for this opportunity.”
Something to remember: Pamela Quinn will join us as one of our presenters during the next Parkinson’s Fitness educational symposium on the North Shore in September. Be sure to watch for all the exciting details as we post them during the next couple of months!