100 People with Parkinson’s Collaborate to Write Personal Life Experiences

A Parkinson’s diagnosis creates a challenge to learn as much as possible from expert physicians and therapists. It also fosters emotional worry and curiosity about how to move forward with life without a clear road map to follow.

As Parkinson’s is NOT a one-size-fits-all medical condition, a natural direction most people eventually take is to search for books and articles to read, and many excellent resources are available. Quoting a description of one such book:

The Peripatetic Pursuit of Parkinson Disease by the Parkinson’s Creative Collective provides information and inspiration to improve life with PD. The Parkinson’s Creative Collective compiled this anthology of experiences containing articles by over 100 experts on PD — the patients themselves. They speak with compassion and honesty to those newly diagnosed, as well as to those who have lived with PD for years. Personal narratives help the reader understand the emotions and remember the facts.”

From 45 reviews, one in particular stands out:
Written as a collaborative effort by people who are dealing as PwP’s (People with Parkinson’s), (the book) had enormous credibility for me and lifted me out of my ignorance and serious depression. The one thing that I have found most supportive over the few months since I was diagnosed is not the ‘encouraging words’ and sympathy and love I have received from friends and family…. it is association, face to face, with others who have Parkinson’s, and reading about people dealing effectively and courageously with Parkinson’s. This book really does this…”

Some reviewers advise that this is a collection of inspirational, personal stories to be read in small sections and experienced slowly, and not try to understand and apply all of its wisdom too quickly. “As a person with Parkinson’s, I can relate to the stories and worries and advice given here… there’s a lot here to absorb, so don’t try to gulp it all down at once. Sip it slowly and thoughtfully.”

An online search of all libraries in our north-of-Boston area did not reveal any available copies. We are including the following link to access the book section on Amazon to read more about The Peripatetic Pursuit of Parkinson Disease and 45 positive reader reviews.

https://www.amazon.com/gp/product/0989326608?pf_rd_p=f3acc539-5d5f-49a3-89ea-768a917d5900&pf_rd_r=N96R1V5BK7MR426DDGF5

HONORED AS COMMUNITY GRANT RECIPIENT BY THE PARKINSON FOUNDATION!

We are proud to announce that we are among nationally recognized Parkinson’s organizations and programs in 38 states who were recently awarded 2019 community grants!

Parkinson’s Foundation community grants further the health, wellness and education of people with Parkinson’s disease across the nation. In April 2019, the Foundation distributed $1.5 million throughout 111 community-based grants that fund education and outreach programs, along with local research initiatives, that address unmet needs in the Parkinson’s community. Read more to view our fellow recipients, listed state by state.

Receiving this grant enables us to partially fund our upcoming 8-week Parkinson’s percussion series with MedRhythms Music Therapy of Boston, and offer the program free of charge starting May 1st at the Danvers Community YMCA!

This honor is shared with our wonderful team of caring, creative instructors and with each participant who attends classes with an “I-will-do-as-much-as-I-can” attitude.

A PARKINSON’S AWARENESS MONTH REMINDER…A DIAGNOSIS SHOULDN’T DEFINE US!

We’re so much more than the label “Parkinson’s sufferers” implies. Poignantly quoted on the Voice Aerobics website by organization founder and friend Mary Spremulli, now-deceased blogger Kate Kelsall – herself diagnosed with Parkinson’s disease – described her feelings about being referred to in just medical diagnosis terms.

“When someone describes me only in terms of my medical diagnosis as having Parkinson’s, it doesn’t describe me as a person. The human element is overlooked, and I feel devalued. Too often, disability-related labels are used unnecessarily to describe a person. A disability is NOT the most important descriptor of any individual. Defining a person as though the disability comprises the entirety of the person often segregates and isolates the person and fails to recognize the humanness.”

“Labeling may cause others to overly focus on the visible manifestation of the disease while failing to connect to you, personally.” –Mary Spremulli, Voice Aerobics founder – Products and Programs that Support Voice Use
(https://voiceaerobicsdvd.com/parkinsons-advocacy/parkinsons-sufferers-and-other-words-we-hate-to-use/)

MUSIC..A FULL-BODY WORKOUT FOR THE BRAIN!

Quoting information provided in a Michael J. Fox Foundation Foxfeed blog post titled “Ask the MD: Music as Medicine for the Mind”…

“In certain diseases, like Parkinson’s, the brain rhythm in the circuit controlling movement gets off track. …Playing music exercises the mind and body. It provides a route for social interaction. In drawing someone into its rhythm, it can calm a resting tremor, break a freezing spell and bring gait into a more normal pattern. Music can boost memory, lessen depression, and improve the volume and tone of speech.” (https://www.michaeljfox.org/foundation/news-detail.php?music-as-medicine-for-the-mind)

Join our new MedRhythms 8-week neurologic percussion series beginning on Wednesday afternoons from 1-2 PM at the Danvers Community YMCA starting May 1st! Beat a combination of drums, smack a boomwacker, shake maracas…and SO much more! The series is limited to 30 people – take a chance on something new, motivating, beneficial, and fun. Register early by emailing parkinsonsfitness@gmail.com to be part of this pilot opportunity  here in our area! 

WHO’S THAT NEW FACE IN OUR BOXING CLASS??

Meet Michael Reyes from Salem Fitness Center!

We’re pleased to introduce Michael Reyes, newest owner of the Salem Fitness Center, where we hold regular Thursday and Saturday boxing and conditioning classes! As the most recent instructor to help join the fight against Parkinson’s, Michael is far from new to the wellness field. Here’s a glimpse into his career background…

Michael is an experienced personal trainer with a demonstrated history of working in the health wellness and fitness industry. He is skilled in coaching, wellness coaching, fitness training, athletics, and team building. He is a strong community and social services professional with a BS degree focused in economics and management from Norwich University.

Michael has installed a brand new ring in the boxing area at the center. Think that’s too difficult for you? THINK AGAIN AND POSITIVELY! A few of our members have already successfully climbed in to work “on the ropes” trying new agility techniques and stamina-building routines!

Kim Crowley will continue providing her great strength-building and conditioning workouts in her other class locations. Michael understands that Parkinson’s wants to do whatever it can to challenge you, so visualize it as the opponent it is and punch back as hard as you can! You can DO this and Michael is ready to show you how!

IT’S ‘HIGH TIME’ WE LEARN THE PRO’S AND CON’S OF MARIJUANA USE FOR PEOPLE WITH PARKINSON’S…IMPORTANT INFORMATION!

A recent post by the Parkinson’s Foundation explains the risks of using marijuana by people with Parkinson’s. Watch this 4-minute video narrated by Parkinson’s Foundation Chief Scientific Officer, James Beck.

https://parkinson.org/blog/research/what-you-should-know-about-marijuana-and-parkinsons

Parkinson’s Fitness is not advocating the use of marijuana. Instead, as always, we provide information that readers should discuss in depth with their team of specialists, and then make choices that are safe, healthy, and correct for their particular challenges with this multi-faceted condition.

“Exercise That’s Tailored and Routine Can Help Patients at All Disease Stages”, Therapist Says…

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:

 

“BUILD IT AND THEY WILL COME”…AND THEY DID!

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!

MAKE WATER YOUR #1 BEVERAGE OF CHOICE!

When we lose more water than we take in, dehydration sets in. And too many of us just don’t think much about how serious dehydration can become. Why not drink some water RIGHT NOW while clicking here to read some very important facts about the risks of dehydration on our bodies and abilities to think and respond clearly and safely.

1 2 3 4 5 15