Hope Parkinson Newsletter

April - June 2021

In This Issue Parkinson’s Month Famous Faces of PD Defining the Disease Finding Answers Spring Social

Ask the PD Rehab Experts: Interactive Panel

The Hope Parkinson Program and Lee Health will co-host a special one-hour online event in celebration of National Parkinson’s Awareness Month. Led by Michelle Martin, Hope Parkinson Program Manager, and Nathalie Grondin, Rehab Services Coordinator for Lee Health, this educational opportunity is provided at no charge. You can attend the session from the comfort of your own home using any internet-connected

computer, tablet, or phone. Private, one-on-one training is available before the event for anyone who needs help using the Zoom video conferencing tool, which will be used to broadcast this discussion. The expert panel, with specialized training in managing Parkinson’s symptoms, includes physical, occupational, and speech and swallowing therapists. These dynamic professionals will share their best tips and tricks.

Attendees will have the chance to interact with the experts and engage with their fellow community members. Don’t miss this special opportunity to learn: • How to improve your balance and mobility • Ways to manage challenges with speech and swallowing • Helpful advice for your daily activities Wednesday, April 14 at 11am RSVP for Zoom link

RSVP Phone Line Leave a Voicemail 239.425.9886

RSVP Email Send a Message PDevents@HopeHCS.org

From Our President & CEO It’s been a little over a year since my first message with news about COVID-19 in our community. We have all been greatly impacted by this global pandemic, and it is only by taking care of each other that we have been able to continue our vital mission. Although we aren’t meeting in person yet, we remain hopeful that by the next edition of this newsletter, we will be able to gather together once again.

Make a Gift in Support of Our Mission Donate.HopeHCS.org/PD

Samira K. Beckwith Hope President and CEO

Become a Member HopeParkinson.org/Join 239.985.7727

Spring Break: PD Activities Suspended Please note, there will be no official Hope Parkinson activities on Friday, April 2, Monday, April 5, or Monday, May 31 (Memorial Day).

Stay Active and Connected with Zoom Events RSVP at least three days in advance by phone or email (see previous page). Please list the event(s) you wish to attend, the full name(s) of participants, and a valid phone number. You will only be called back if spaces are full or if the event is canceled. If you need help learning Zoom, contact us for a private session.

Rock Steady Boxing Mondays & Fridays at 1 PM Get ready to rock with Eric! See his rave reviews on the next page. Build your strength and endurance while having fun too.

PD Exercise Tuesdays at 11 AM Thursdays at 11 AM

Open Group 3rd Thursdays at 1 PM Everyone is welcome at this general support group to share their thoughts, feelings, tips, and tricks for coping with the challenges of chronic illness. Women with PD find comfort and camaraderie at this gender- specific support group. Care Partner Group 2nd Thursdays at 1 PM This group is designed for those who are caring for a loved one. Ladies with PD 4th Fridays at 2:30 PM

These essential classes focus on improving your overall strength, balance, voice, and cognition. Tai Chi for PD Wednesdays at 1 PM The ancient techniques of Tai Chi will help you find better balance. Try seated or standing positions. YOPD Meet Up 1st Fridays at 6 PM Our Young Onset group meets for a monthly social to share and support each other.

Laugh Club Fridays at 11 AM

In just 30 minutes, you can boost your mood and mindset, getting ready for a weekend of smiles. Meditation Practice Wednesdays at 12 noon Use this weekly window of time to commit to calm. It’s a 30-minute mood mender for everyone.

National Parkinson’s Awareness Month in April • Over one million families are living with PD in the United States. • Approximately 60,000 Americans are diagnosed with PD each year. • More than 10 million people worldwide are living with PD. Although we don’t know the difficult personal stories behind each of these numbers, we know that people with PD and their families need help. These statistics are important in attracting the notice of state, federal, and national governments that allocate money to PD-related research. It also signals the pharmaceutical industry that there is a growing urgency for finding treatments. Finally, the statistics give power to communities that advocate for more help for everyone affected by PD. During National Parkinson’s Awareness Help flood the White House with letters to support Parkinson’s disease initiatives! The ‘Give a Dime’ effort is inspired by the 1938 March of Dimes campaign to end polio. Today, we can do the same for Parkinson’s. Go to endingpd.org/letter to send your request to join the cause. After receiving your red card in the mail, sign and personalize it. Then add a postage stamp, and put it in the mail. It’s that simple! The card reads: Dear Mr. President, In 1938, FDR and millions of Americans led a march of dimes to end polio. Today, Parkinson’s is the world’s fastest-growing brain disease, affecting 1.2 million Americans. We give a dime about Parkinson’s, and together we can end it. How? • Ban paraquat, chlorpyrifos, and trichloroethylene – these chemicals all increase the risk of Parkinson’s. Like other countries, the U.S. should ban these substances. • Make Medicare’s coverage of telemedicine permanent – Covid-19 has shown us that telemedicine is feasible, effective, and convenient. Let’s keep it accessible. • Increase Parkinson’s research funding ten-fold – over the past decade, inflation-adjusted NIH funding for Parkinson’s has decreased, while the number of Americans with the disease has increased 35%. If we take these actions today, we can turn the tide of Parkinson’s. Let’s act together. Month this April, we invite you to share these facts to help spread the word! Letter Writing Campaign to Help End Parkinson’s

You can also email the same information if you live outside of the United States. If you’re interested in receiving more copies for your family, friends, and neighbors to sign, you can email info@endingpd.org.

Famous Faces of PD and Movement Disorders When people are asked to think of a celebrity or public figure affected by Parkinson’s, they will likely remember Muhammad Ali or Michael J. Fox. Many are surprised to learn that there are other famous men and women who have also been touched by this disease. Do you know who they are? Celebrity Quote: “I decided to let people know I have Parkinson’s to encourage others to take action. I was diagnosed years ago, but my life is full. I act, I give talks, I do my podcast, which I love. If you get a diagnosis, keep moving! I take boxing lessons three days a week, play singles tennis twice a week, and take a mild pill – all doctor-recommended. I even juggle a little.” Who said it?

Left to right, top to bottom: Billy Graham, diagnosed 1993 Glenn Tipton, diagnosed 2008 Linda Ronstadt, diagnosed 2012 George H.W. Bush, diagnosed 2012 with vascular Parkinsonism Robin Williams, diagnosed 2014 with Lewy Body Dementia Alan Alda, diagnosed 2015, author of the quotation above Neil Diamond, diagnosed 2018 Ozzy Osbourne, diagnosed 2019

Photo Credits: Licensed under CC BY-SA 2.0 Billy Graham by Paul M. Walsh, Glenn Tipton by Luis Blanco Press Photographer, Linda Ronstadt by El Caganer, George H.W. Bush by Beverly & Pack, Robin Williams by Eva Rinaldi Celebrity Photographer, Alan Alda by runneralan2004, Neil Diamond by whiper, Ozzy Osbourne by Kevin Burkett.

Finding Answers after a PD Diagnosis After a diagnosis of Parkinson’s disease, you might leave your physician’s office feeling more than ten years. Program Manager Michelle Martin offers personalized support for navigating the challenges of

Coping . Most of the publications are free, but you may have to pay for shipping if you order copies. Phone operators are also available to help. To be connected, call 800- 473-4636 from 9 am to 8 pm EST, from Monday through Saturday. Michael J. Fox Foundation michaeljfox.org This organization, which is perhaps best known for advancing research in the field of Parkinson’s disease, has excellent podcasts and webinars for general education. One of the newest podcasts is called New to Parkinson’s? Steps to Take Today which explains what to expect and offers tips for selecting a physician. Davis Phinney Foundation davisphinneyfoundation.org Find resources, advice, and an excellent manual entitled Every Victory Counts , targeting all people with Parkinson’s disease and their care partners. This booklet is free with a small shipping charge.

overwhelmed with the news. You might be confused about the best path forward to help manage the progression of the disease, or it might feel like you have more questions than answers. The following organizations are some of the best places to find the answers you need, along with your chosen team of medical professionals. Learn the next steps to take after a diagnosis, and check back often for news. Hope Parkinson Program hopeparkinson.org Sometimes the best place to start is close to home. Provided by Hope Healthcare, the Hope Parkinson Program has served Southwest Florida for

PD. Membership is provided at no charge, and this quarterly newsletter will connect you with opportunities for exercise, education, support, and socialization. As your needs change, you can also be connected to other Hope programs, which offer comforting, compassionate care for people living with serious illness. Parkinson Foundation parkinson.org Discover one of the largest and most comprehensive resources for PD education. Many materials are available to download for immediate access, but you may also order hard copies if you prefer reading a more traditional format. Some of Foundation’s most popular kits are Newly Diagnosed ,

Aware in Care , and Caring and

Defining the Disease: Terms You Should Know

When someone is in the early stages of a movement disorder, it’s often hard for a doctor to be certain of the diagnosis. The term parkinsonism can be used to describe a range of disorders. It describes a group of symptoms like slowness, stiffness, tremors, or balance problems. The most common form of Parkinsonism is idiopathic Parkinson’s disease . Idiopathic means that the cause is unknown. Parkinson’s disease (PD) is a highly complex, chronic neurological condition. Sometimes PD is classified as a movement disorder caused by a dopamine system dysfunction. Dopamine is a chemical messenger in the brain that affects movement, mood, and other important functions of the body. For many people, idiopathic Parkinson’s disease may progress slowly and be well- managed for decades.

Others may be diagnosed with atypical Parkinson’s disease – which is sometimes called Parkinson’s plus. These cases represent about 10-15% of people with parkinsonism. For instance, medications, head trauma, or brain lesions may cause problems with movement. Lewy body dementia or metabolic disorders are other types of atypical Parkinson’s. Because the symptoms of idiopathic PD and atypical PD overlap, treatments overlap, too. Neurologists, specialists, and therapists can use a variety

of interventions, including medications, to ease symptoms. Although there is no cure for Parkinson’s, there are many ways to improve quality of life. We hope that future research may bring even more hope to people with PD, but until there’s a cure, there’s a community. The Hope Parkinson Program is here to help.

New to PD? Don’t Miss Our PD 101 Class on April 12 See back cover for details

Exercise is an important part of healthy living for everyone. But for people with PD, exercise is much more than a healthy habit. It’s vital for your quality of life. Are you getting enough movement and exercise in your daily routine? Try to increase your activity level starting in April in celebration of Parkinson’s Awareness Month !

Keep Moving: set new goals this month

Urban Poling for Parkinson’s Walking

Would you like to join an innovative new walking

program? We want to survey Hope Parkinson participants to determine if there is sufficient interest in this opportunity. Pole walking, also known as Nordic walking, can be a safe, effective physical activity for people with PD and their care partners. Walkers use specially designed poles, which are similar to ski poles. You apply a light force to the poles with each stride of your walk. This helps use your entire body and offers more stimulation than normal walking. Benefits include: • Improving balance • Promoting upright posture • Promoting bilateral movement • Providing visual, auditory, and sensory cues for walkers • Offering increased motivation to exercise safely Contact us as soon as possible if you’re interested in Urban Poling for Parkinson’s Walking.

Spring Social: A Purrrfect Pet Party for Parkinson’s Join us for this Virtual Streaming Event on Friday, May 7 at 3 pm It’s time to press “paws” on your human-focused Zoom meet-ups! Our spring social will be a virtual Pet Party for all dogs, cats, rabbits, hamsters, fish, ferrets, and furry friends. If you don’t have a pet, bring a stuffed animal or a picture of your favorite breed. You can also get creative and draw whiskers on your own face to get in the party spirit! We want to know which cats want belly rubs and to discover which dogs aren’t the least bit camera shy. RSVP to PDevents@HopeHCS.org or leave a voicemail by calling 239.425.9886 for the Zoom link.

RSVP Today Begins April 1 First Thursdays 1:00 pm

NEW Monthly Care Partner Support Group for Men Caring for a loved one can physically or emotionally

men face these challenges. Join us for real-world insights that will be helpful to you in the months and years to come. The Care Partner Support Group for men begins in April and will be led by Hope counselor David Pezzullo, MHC. It’s also important to remember that the Hope Parkinson Program is designed for both people with Parkinson’s disease and their care partners. Care partners are invited to attend social activities and educational forums. They can remain in-room for movement classes if space allows, or the instructor feels their participation is necessary for support.

Hope Healthcare also offers other valuable support groups that may be of interest to your friends, family, or neighbors. Opportunities include: • Caregiver Support Group (Open to All) • Adult Grief Support Groups • Many Special Topics on Grief Visit HopeHCS.org/Counseling for a detailed list of opportunities, including dates, times, and contact information. We hope you will share this information with anyone who may need it. Men’s Care Partner Group RSVP for Zoom Link PDevents@HopeHCS.org 239.425.9886

overwhelming. To be an effective partner, it’s vital to take care of yourself too. Care partners may become so involved in the day-to-day efforts to keep things going, they may forget to let others know they need help – or just a short break from the work of caring for a loved one. Even if it is only 15 or 20 minutes a day, it’s a good idea to do something just for you. With this new group, you can discover ways to minimize your stress levels and learn how to renew your energy. All content is tailored to the unique way that

Leave a Legacy to Support Our Mission Include Hope Parkinson Program in Your Estate Planning As a not-for-profit, we rely on donations, grants, and proceeds from special events to provide membership at no charge. We were recently honored to receive a generous gift from the Estate of Marilyn Hogen; Marilyn had been a participant in our program since 2012. You can also show your support by including the Hope Parkinson Program in your estate planning. We can provide you and your attorney with the correct details to include when creating or updating your will. For questions about planned giving to benefit the Hope Parkinson Program, contact Hope’s Sabrina Bennett at Sabrina.Bennett@HopeHCS.org or 239-322-5364 Fort Myers Track Club Donates $3,000 Runners Raise Vital Funds during Virtual Races Despite the many challenges of the pandemic, the Fort Myers Track Club has continued their generous giving. The group combined proceeds from their Turkey Trot 5K, River Run 10K, and the Lazy Flamingo Half Marathon and made a gift of $3,000.00 to the Hope Parkinson Program! We are truly grateful for their ongoing support.

NON-PROFIT ORGANIZATION U.S. POSTAGE PAID MAILED IN AMERICA

PARKINSON PROGRAM

Hope Hospice & Community Services, Inc. 9470 HealthPark Circle Fort Myers, FL 33908

PD 101 Class Finding Hope for Living Well with PD

If you’re newly diagnosed with Parkinson’s disease or a related movement disorder, attend our PD 101 class to understand this complex condition. Learn how to manage symptoms, slow disease progression, and optimize your quality of life. You may have read books on Parkinson’s disease, but we’ll dive deeper with local and national resources as well as an interactive Q&A opportunity. Monday, April 12 at 11am

The Hope Parkinson Program is a community service provided by Hope Healthcare, a not-for-profit, 501(c)(3) organization. Learn more at HopeParkinson.org or make a gift at Donate.HopeHCS.org/PD. Generous community support and funding from the United Way of Lee, Hendry, Glades, and Okeechobee help provide membership at no charge. Additional materials are available by request, including contact details for other PD organizations, printable handouts, links to YouTube videos, and other resources. Contact Program Coordinator Michelle Martin at Michelle.Martin@HopeHCS.org.

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