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.”
If you’re old enough, you may remember the catchy rhythm in Frank Sinatra’s daughter Nancy’s recording of These Boots Are Made For Walkin’. We’ve used that song in some of our exercise classes to showcase how humming or singing while practicing certain movements can actually improve the effort being made. Music can reach parts of the brain that control how the body responds to rhythm and actually improve not only speech volume, swallowing and breath control, but also unsteadying gait challenges caused by Parkinson’s.
Read more from this interesting article posted on line by Parkinson’s News Today. Then, see if you remember these lyrics and apply them to the fight against Parkinson’s: “These boots are made for walkin’ and that’s just what they’ll do. One of these days, these boots are gonna walk all over YOU.”
Surgeries requiring general anesthesia pose complicated risks for anyone. For people with neurologic disorders such as Parkinson’s, the potential risk of postoperative issues rises. Fortunately – while understandably unsettling to read certain medical information – it is far more important to have as much prior education as possible about the side effects of general anesthesia should surgery and hospitalization afterward become necessary.
We encourage you to read, save and share the important information about undergoing general anesthesia presented in this article from the August/September issue of Brain and Life Magazine. This is a subject that should be discussed with your medical team: general practitioner, surgeon, and neurologist. Click here for the full article
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!
“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.)
In a recent column that appears in Parkinson’s News Today on line, a regular contributor referred to as “Dr. C.” relates his experiences as he navigates his journey through life with Parkinson’s. From his latest column:
“I am a retired professor and research scientist, along with being an artist, philosopher, writer, therapist and mystic. I am also a husband, father, grandfather, master gardener and Vietnam Vet. All of these roles influence how PD interacts with my life’s journey. … The ability to shift perspective may improve our ability to adapt to stressful times and to become more resilient, and therefore more open to new possibilities. The shifting of perspective causes us to shift our focus to a new intention, a new possibility. I hated exercise, and my intention was to avoid it...”
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
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