A growing number of younger people are being diagnosed with early-onset Parkinson’s. Many men and women are still actively working and wondering about having “the talk” with an employer about the future. Advice found in the web site link below is particularly important, as is educating oneself about workplace rights under the American with Disabilities Act:
“Give yourself time to absorb the news, and take some time to educate yourself about Parkinson’s disease and how it will progress over time. …you don’t want to talk to your boss about Parkinson’s if you yourself know very little about the disorder and can’t answer questions.”
“The Americans with Disabilities Act (ADA; www.ada.gov), which is enforced by the Equal Employment Opportunity Commission, prohibits workplace discrimination due to disability as long as you can demonstrate that you can perform the job in question when reasonable adjustments are made to accommodate you.”
Click on the link to read excellent “talking points” for holding open, honest discussion with an employer, human resources staff, and fellow employees.
Young (“early”) Onset Parkinson’s support group information is available by contacting the American Parkinson Disease Association Massachusetts Chapter’s Information & Referral Service located in Boston (http://apdama.org/wcms/about-us/information-referral-center/)
In the May 8, 2017 online issue of Parkinson’s News Today, a “Facts You May Not Know About Parkinson’s” article includes the following information – interesting reading!
The types of exercise you choose will depend, to some degree, on the severity of your Parkinson’s disease and your overall health. According to the Parkinson’s Disease Clinic and Research Center at the University of California, the exercises should be varied and incorporate changing directions through unplanned movement, cardiovascular exercise, balance, strength training and rhythmical exercises.
Unplanned and Random Movement
The exercises listed require the person to change tempo and direction regularly. These will challenge a person mentally as well as physically as they require concentration to perform.
• Walking, hiking or jogging
• Racket sports such as badminton, table tennis, squash
• Yoga or Tai Chi
• Outdoor cycling
• Aerobic classes
• Marching with swinging arms
• Swimming in different strokes
Planned and Repeated Movement
These exercises are generally repeated movements that require balance. They can be performed while doing something that challenges a person mentally, such as watching a quiz show or the news, throwing and catching balls, singing, or problem-solving.
• Cycling on a static bike
• Weightlifting using light weights
• Swimming laps in the same stroke
• Slow walking on a treadmill
Members of our Salem and Beverly Strength in Motion classes instructed by Kim Crowley are finding themselves stronger and with better control over their mobility issues. And little wonder about that! Read on to learn about the other kinds of classes Kim is independently involved with locally. We’re so fortunate that she is willing to share her incredible energy, time and knowledge twice a week as one of our Parkinson’s Fitness team of instructors!
Coupled with her active home life as a busy wife and mom, here’s just a peek into a few of the ways Kim teaches elsewhere during the week.
Introduction to Muscle Training, Strength and Stretch, Weight Training, Senior Boot Camp, Small Group Circuit Training and…wait for it!…ZUMBA!
And speaking of Zumba, Kim and colleague Rachelle Bruzzese recently participated in an annual fundraising “Zumbathon” to raise money for Children’s Charities. The money raised this year went to Boston Children’s Hospital and www.GrantBirthdayWishes.org. Over $3,000 was raised!
Way to go, Kim!
Click here for our weekly schedule that includes Kim’s Strength in Motion classes.
“Emotional and behavioral changes are common in people with chronic diseases, but these changes are even more common in PD. The same neurotransmitters (e.g., dopamine) that regulate movement also regulate our mood. Therefore, the same processes in the brain that lead to the more classical symptoms of Parkinson’s disease can cause depression. When dopamine-producing cells in the brain die, movement AND mood can be affected. In this case, depression is actually a symptom of PD, not a reaction to the diagnosis.”
The National Parkinson’s Foundation offers important insight into the many reasons for mood changes when coping with Parkinson’s. Their recent publication – “Mood: A Mind Guide to Parkinson’s Disease” – is available for on-line download and also in printed editions. Click here for details
The Michael J. Fox Foundation is well known for the vast amounts of information they make available for people diagnosed with Parkinson’s. Often we have questions to ask our personal physicians, but either forget to do it, the doctor seems over-scheduled and hurried during an appointment, or perhaps he or she simply doesn’t know the answer.
Take some time to visit this link to the Foundation’s “Ask the MD” video series, where answers to some of your concerns may be available. Be sure to click on the button labeled “load more posts” located under the first few videos before leaving the site.
May is another kind of national “awareness” month. What’s the subject? Unfortunately, it’s melanoma skin cancer. Did you know that there’s a see-saw balance between the benefits of sunshine and the risks that having too much exposure create for people with Parkinson’s? It’s important that you read further…
Let’s stay positive first. Enjoying moderate exposures to sunshine can help the brain boost its serotonin levels. That’s an “upper” because serotonin is what helps brighten our mood. Sunshine also helps our circadian rhythms stay on track, which keeps the body’s “clock” running more efficiently. And exposure to the sun’s UV rays can also help clear up eczema and psoriasis skin conditions. (Just remember that if you have one of those skin conditions, talk with a doctor to manage just how much sunshine to enjoy.)
Now, for the not-so-positive information: In a 2015 “Ask the MD” article written by Dr. Rachel Dolhun for the Michael J. Fox Foundation, studies are described that explain some of the research that links Parkinson’s and melanoma risks. Click here to read what Dr. Dolhun shared.
Researchers also advised in a 2016 “Melanoma News Today” article that: “It is prudent that dermatologists be aware of this increased risk of melanoma and explain this risk to their patients with Parkinson’s and recommend to them sun protection, self-surveillance, and periodic skin check-up.” Have any of YOUR physicians mentioned this to you? The article is available to read here as another important resource for healthy living.
Now that you know more about this possible link, be certain that your doctor includes an examination of all your skin surfaces, including areas where the sun DOESN’T shine, such as the soles of the feet and the buttocks.
As recently as May 4th this year, the government Centers for Disease Control and Prevention issued preventive warnings for everyone, many of which you may find familiar. They are certainly worth reading, especially as summer fun time approaches. Click here for the CDC resource updates. While you’re learning these safety tips about sun exposure, remember your eyes too and wear sunglasses!
There are some people you just DON’T want to under-estimate!
The boxing area provided for our use at the Salem Fitness Center is a great place to work on the benefits of shifting one’s center of gravity and improving footwork, balance, cognitive focus, and general body conditioning…not to mention being able to punch out frustrations on the heavy bags!
To “meet” the instructors, read about the program, find our location, and view a calendar:
After the fun many of us had while bowling during our April mini-fundraiser, one of our class members suggested that the people in our classes might enjoy getting together once a week at the Sunnyside bowling lanes for coffee and the exercise of bowling a string or two.
The lane use is slower on Monday mornings around 10 AM, so we’ve issued a no-reservations-needed invitation for class members to come by for coffee compliments of Sunnyside, and a whole lot of fun. It’ll be a “fun-raiser” every week! Shoe and lane rentals are the bowlers’ responsibilities, as is making new friends and enjoying time spent with the ones already known.
Location: Sunnyside Bowladrome – 176 Water Street, Danvers (same road as Bishop Fenwick High School) – 10:00 AM – Monday mornings.
Questions? Phone Linda Hall at 781-572-5918 or email her by clicking here.
That’s right…92 adults and children attended our April 2nd mini-fundraiser at the Sunnyside Bowladrome in Danvers! They came in support of their family members and friends who live with the multifaceted challenges of a Parkinson’s diagnosis. We were delighted to have several participants from our exercise, movement, yoga and music classes come to support the programs they attend (including instructor Kim Crowley from our Beverly and Salem classes and community supporter Suz Malach from the Danvers Community YMCA!), especially because April is Parkinson’s Awareness Month around the world. Who better to be awareness ambassadors than those proving the importance of staying as active as possible while fighting back against a relentlessly tough medical condition!
Good-natured teasing, lots of gutter balls (this writer can attest to too many of her own!), and the friendly conversations shared amid the cheers and jeers and moans and groans heard from the lanes, were topped off by enjoying ice cream sundaes generously provided by Treadwell’s Ice Cream community programming in Peabody.
The supportive spirit from everyone who attended and contributed will help us sustain the quality programs we do our best to offer throughout the North Shore. (Click here to view a schedule of class locations and times.) Thank you to co-founders Linda and Keith Hall for continuing your mission…your Parkinson’s awareness commitment goes far beyond just one month out of the year!
For ten years, the Marblehead Parkinson’s support group was honored to have as one of its most beloved members a man we referred to as “Captain” Cobbett (a/k/a Bill Cobbett, a long-standing Swampscott, MA resident and former biology teacher at Marblehead High School). He was fond of writing poetry and dedicated this one titled “The Journey” to his fellow support group friends. Bill passed unexpectedly in May of 2012 – a huge loss to all who knew him. In his memory, during this April’s Parkinson’s Awareness Month, we offer his warm message to you…
~ Bill Cobbett ~
Ulysses’ journey – the Odyssey – took ten long years to do.
Our trip may take much longer, but with hope we’ll see it through.
Ulysses found that his odyssey had problems along the way,
and all of us on our journeys work through trials that come each day.
For some of us, the odyssey is slowly gaining speed.
But most of you will miss this trip – one you neither want nor need.
Ulysses solved his problems in ways only he could do.
We too will conquer challenges with help from a supportive crew.
This trip is different from those we took in days long ago and passed.
There seems no way of knowing just how long the journey will last.
As yet, we’re not quite sure just what we’ll do and learn,
or when PD finally has a cure, to where we will return.
Unlike a tourist on a trip who sees what a tourist sees,
We’re like sailors on changing seas, at the whim of an ocean breeze.
This journey wasn’t planned by us as to what we’ll learn and do.
The life you’ll have – and how to live it – is entirely up to you.
Parkinson’s will, one day, be cured with work and time…
And hope can make life brighter, as it strides the horizon line.
Together we’ll find our bearings
to chart a course that’s true…
and that success, to a large extent, will come from support –
like that I’ve found in you!
Swampscott, MA resident
Husband, father, grandfather, gardener, flower arranger, poet, wood carver,
friend and source of encouragement to all who knew him.
Marblehead Parkinson’s support group member
Passed from our lives in May, 2012