What now? How to stay supported and connected despite Coronavirus disease 2019

Explore our online resources to stay connected

In efforts to keep people safe and healthy, there have been many COVID-19-related cancellations of Parkinson’s disease (PD) support groups, exercise classes and educational symposia (along with many other events and activities). Despite these cancellations, it continues to remain crucial for our PD community to find opportunities for physical, social and emotional engagement, even if you have to stay at home or have limited options for getting out and about.

Rest assured that APDA is here for you, with lots of online options to help support you and useful tips to keep you connected.

Instead of support groups

If your regular support group has been cancelled, it is still important for you to have ways to connect with others and talk about your questions, concerns and challenges. APDA has partnered with Smart Patients, an online patient community, to host an ongoing discussion forum for people with PD and their loved ones. Members in this online forum share help, advice and information about treatments, symptoms and side effects. Click here join our online community to get started.

APDA is working to identify other opportunities to use technology to allow remote participation in support groups. If this is happening in your area, your support group leader will reach out to you.

If your support group is not able to move online, there is always the telephone! Consider calling a member of your group to offer each other continued support.

If you are not currently in a support group, make an extra effort to reach out to friends over the phone to remain socially and emotionally connected.

Instead of exercise classes

We know that exercise is incredibly beneficial for people with PD. If you have been attending an exercise, dance or other movement class and it has been cancelled for the time being, don’t despair. There are other ways for you to keep moving, right in the comfort of your own home.

You can take an exercise class online! APDA’s Greater St. Louis Chapter has done an amazing job over the years of videoing and archiving the exercise classes that they offer, and these classes are available to anyone, anywhere, right from your computer. You can access the classes on the St. Louis Chapter’s youtube channel. Then simply clear some floor space in your home and follow along!  Some of our other Chapters are currently making arrangements for their instructors to offer classes remotely as well, so we hope to have even more classes available for you soon. Stay tuned!

You can also download APDA’s helpful exercise booklet Be Active and Beyond, which features a wide assortment of exercises you can do right at home and offers modifications for all levels of ability. You can use this free booklet to design your own exercise regimen.

If you are able to stay six feet away from everyone else in your vicinity, then by all means, go outside and take a walk, jog, or bike ride. (As always, discuss with your neurologist the type of exercise that you are able to safely perform.)

Instead of educational symposia

Webinars

Unfortunately, some of our upcoming educational events have been postponed, but we know that getting the information you need is so important. APDA has a great selection of archived webinars on a whole host of topics that you can access any time. Topics include clinical trials, medication management, Levodopa-induced dyskinesias, staying healthy, nutrition and much more.

We’ve got a new webinar coming up soon on April 29 entitled Spotlight on Parkinson’s Disease: What’s New in Brain Health. It will be presented by Dr. Daniel Weintraub of the University of Pennsylvania School of Medicine, and will focus on all aspects of brain health in people with PD including cognitive issues, psychosis, depression and anxiety. You can register online today.

Other educational resources

In addition to our webinar series, there is a wealth of information about PD on our website. From our informative (and free) publications to resources for veterans to our quarterly Newsletters – there is no shortage of useful information and inspiring stories available to you.  We encourage you to browse around!  We also offer a large selection of up-to-date educational materials in Spanish as well.

A conference you can attend from home – 2020 Insight Into Parkinson’s: Future Frontiers

APDA has partnered with 2020 Insight into Parkinson’s, a three-day global conference for people living with PD and their loved ones that takes place completely online from April 1-3. It is organized by PD Warrior, a charity organization based in Australia, and will bring together a wide variety of international speakers presenting on a range of topics and live panels, including my presentation entitled “Tired of Trouble Sleeping? How to get a good night’s rest with Parkinson’s disease”. The conference is FREE for people to attend for the first three days of the broadcast (with a premium upgrade option available if you want to re-watch some of the content later). As a charity partner, APDA will receive funding from the premium upgrade ticket sales. Check out the full schedule and be sure to register soon.

What’s next with COVID-19?

APDA is monitoring the situation closely and as information becomes available we will update you on COVID-19 issues as they relate to people with PD. We’ve already answered some of our readers’ questions that may have relevance to your situation. You can also submit your own question and we will do our best to answer as the available information allows.

Tips and Takeaways

  • APDA is here to help you remain physically, socially and emotionally well during these difficult times.
  • Take advantage of APDA resources to help you continue exercising, connecting and learning.

Do you have a question or issue that you would like Dr. Gilbert to explore? Suggest a Topic

Dr. Rebecca Gilbert

APDA Vice President and Chief Scientific Officer

Dr. Gilbert received her MD degree at Weill Medical College of Cornell University in New York and her PhD in Cell Biology and Genetics at the Weill Graduate School of Medical Sciences. She then pursued Neurology Residency training as well as Movement Disorders Fellowship training at Columbia Presbyterian Medical Center. Prior to coming to APDA, she was an Associate Professor of Neurology at NYU Langone Medical Center. In this role, she saw movement disorder patients, initiated and directed the NYU Movement Disorders Fellowship, participated in clinical trials and other research initiatives for PD and lectured widely on the disease.

A Closer Look ArticlePosted in Living with Parkinson's

DISCLAIMER: Any medical information disseminated via this blog is solely for the purpose of providing information to the audience, and is not intended as medical advice. Our healthcare professionals cannot recommend treatment or make diagnoses, but can respond to general questions. We encourage you to direct any specific questions to your personal healthcare providers.