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.”
“Healthcare providers say that hallmark signs of nOH, including dizziness, lightheadedness, blurred vision, and feeling faint after standing, can occur at any stage of Parkinson’s disease. People may believe that their nOH symptoms are part of their Parkinson’s and something they have to learn to live with. It’s only once a healthcare provider connects the symptoms of being lightheaded or faint after standing to a drop in blood pressure that an nOH diagnosis may be possible.”(https://www.nohmatters.com/how-neurogenic-orthostatic-hypotension-occurs/parkinsons-dizzy)
Keith and Linda Hall’s lives are affected by Keith’s nOH symptoms. Read here about what’s happened to them and what steps they’ve taken to live with a difficult but manageable diagnosis.
Lifestyle changes for Keith and others include:*
Drinking more water
Adjusting the amount of salt in your diet
Avoiding carbohydrate-heavy meals, caffeine, and alcohol
Wearing compression stockings or an abdominal binder
Elevating the head of your bed
Slowly rising when standing
Using caution when walking or changing positions if you feel dizzy
Getting regular exercise (*Ask your healthcare provider for guidelines and advice on lifestyle modifications that would work best for you.)
Excerpting from a June 19, 2019 Parkinson’s News Today article by Catarina Silva: According to a study of zebra fish, not getting enough sleep may cause memory defects and emotional changes due to changes in dopamine metabolism. (Sleep Deprivation Caused Memory Defects and Emotional Changes in a Rotenone-based Zebra fish Model of Parkinson’s Disease”, published in Behavioural Brain Research.)
Researchers wrote: “In addition tocognitive and emotional disorders, sleep abnormalities are also prevalent in Parkinson’s disease. The problem of sleep is not only the characteristics of the disease itself, but also related to medication and dyskinesia such as tremor and rigidity.”
Sleep is an essential physiological process, and lack or shortage of sleep time causes fatigue, increase of mood swings, and can affect learning and memory. Some studies have shown that sleep deprivation can result in emotional and cognitive impairments.
A team of Chinese researchers investigated the effects of sleep deprivation on locomotor activity, memory and emotional behavior in a zebrafish model of Parkinson’s disease. To understand how tiny fish are helping with research for a cure, read more here
The Parkinson’s Foundation has a free library with the latest Parkinson’s disease (PD) related information. To view the following topics and many more – Seeking a Specialist, Physical Therapy, Depression, Intimacy, Impulse Control, Non-drug options, Anxiety, Fatigue or Apathy – click here.
“Poor posture is a hallmark feature of Parkinson’s disease. This stooped positioning has been associated with increased muscle rigidity or stiffness. The typical Parkinson’s posture includes: forward head, rounded shoulders, increased thoracic kyphosis, increased flexion of the trunk, and bending of the knees.”
How can poor posture affect you?
Difficulty speaking clearly and loudly
Difficulty with moving your neck and upper extremities
Change your perception of your body’s position in space
Can alter balance and lead to falls from having your weight shifted forward
Decrease strength of postural muscles
Headaches and TMJ pain
(Meredith Defranco, “Parkinson’s Treatment Tips” published March 1, 2012, Norman Fixel Institute for Neurological Diseases at University of Florida Health)
A May 22, 2019 article in Parkinson’s News Today offers insight into assessment results from a controlled study that utilized a four-week trunk-specific, posture-correcting rehabilitation program: “Forward bending of the spine, known as disease-related forward trunk flexion (FTF), is a common complication observed in patients with Parkinson’s disease. FTF can result in permanent postural imbalance, pain, frequent falls, and irreversible deformities. Early detection and rehabilitation efforts through focused physical therapy can help in reducing pain and delay motor symptoms progression. However, information is limited on FTF rehabilitative efforts in Parkinson’s patients.” – Vijaya IyerRead more here
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 firstname.lastname@example.org to be part of this pilot opportunity here in our area!
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!
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.
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.
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!