I am happy to release a brand new resource page, chock full, of updated Parkinson’s disease related links, to blogs, websites, podcasts, and more – all in one convenient location. Better navigation makes it easier to find just what you are looking for. I hope this page assists you in finding helpful information on Parkinson’s and living well! Just click on the Tools and Resources button.
Stay informed and aware of what people with Parkinson’s disease are writing about, how they are dealing with the illness, and find information that may inspire or educate. Gain perspective and get unique views from people from all over the world. Broaden your outlook and see what people are working on. See how some are overcoming their symptoms and are living well with Parkinson’s.
The more you know about your illness, the better prepared you can be. Being aware and proactive may help you to take action towards improving your condition. Information is crucial to making health decisions and understanding options. There is so much to learn and share.
I believe that the real experts on illness are the people who live with illness, everyday. There is no denying the valuable contribution of the medical community, but on a daily basis, daily living is most applicable to those who are living it.
See the list of Parkinson’s organizations and keep in tune with programs and educational webinars that cover a wide range of informative topics that relate to Parkinson’s disease. Each organization offers a unique wide or regional focus that may be applicable to your needs.
I have always thought that the more tools that are in your toolbox, the better. Having a choice far outweighs a lack of options. Widening the availability of our options allows us to make more informed decisions.
Avoidance or turning a blind eye to your illness may be detrimental to your getting better. Learning about unfamiliar options can be empowering and offer comfort.
I really like using Zoom for meetings, but a month ago I saw what can happen when security measures are not taken. I was Zoomed.
A month ago, I had a day that would unexpectedly burn disturbing images in both my brain and my wife’s brain. I was attending someone else’s Zoom social get together. It is difficult to forget. It was a shock.
What began as a charming get together of sharing and caring amongst people with Parkinson’s disease and their caregivers/carepartners, did not end well. It turned into an invasion of indecency and pure smut. A hacker’s prank or an experiment in disruption, spoiled the event for all who were involved. This was a gross abuse of technology.
When used properly and measures are taken, Zoom calls can be very helpful, enjoyable, and productive events. Follow these suggestions and keep your software up-to-date to keep out uninvited participants.
If you or your group use Zoom for a meeting, a get together, or lectures, make sure that you take caution and follow some of these precautionary steps to protect from being interrupted by unwanted attendees, to your event.
Zoom Hints For Attendees/Participants:
- Use the “art of the pause” when participating so others can respond to your comments.
- Be patient for speakers who may speak more slowly.
- Make sure you upgrade your Zoom application to the latest version to get important updates.
Zoom Hints For Hosts:
- Always password protect your meetings.
- In your meeting setup, turn off screen sharing for participants as a security measure.
- Use the waiting room so you can screen who is admitted.
- Have attendee’s audio and video muted as they enter the room, so it is not distracting. Muted audio can help a lot for those late arrivals who might interrupt a meeting in progress.
- Always greet your attendees as they enter and say goodbye when they leave.
- Make sure you have the latest updated version of the Zoom application.
Informative Zoom Videos to Watch:
- Davis Phinney Foundation – https://www.youtube.com/watch?v=MtGbgGoLOXA
- BBC – The Zoom Social Etiquette guide: https://www.bbc.com/worklife/article/20200428-the-zoom-social-etiquette-guide
- Zoom Advanced Features Tutorial for Hosts – https://www.youtube.com/watch?v=HziooZpxWec&t=1s
Share these resources with anyone you know who is a Zoom user or moderator. One of these sources may help keep you and your attendees stay safe.
There is a common, unfunny, and overused joke about not playing poker with people who have Parkinson’s disease because many of us have reduced facial movement and it can be hard to read our expressions. This is masking, as I understand it. Sometimes the muscles for smiling just do not work well. Speech clarity and projection are vital to being understood. Being heard under a cloth mask when one has voice issues makes life frustrating for both the speaker and the listener.
Now, to make matters more of a challenge, add practicing social distancing, having a problem with your speech, having a softer voice, and placing a mask over that soft voice. For someone with Parkinson’s disease, the combination of muffling the mouth, relying on just the eyes can be deceptive, and poor vocal projection, all add up to not being easily understood and worsens communications.
For some of us with Parkinson’s disease, our eyes are not as expressive or fluid as we would like, added to the tightening of facial, neck, and jaw muscles. Dry mouth, too much saliva, swallowing issues, and dental problems can all contribute to someone with Parkinson’s speech challenges.
Sight and Sound are Covered
Communication in a marriage is crucial and in this new COVID-19 pandemic of being home sequestered, the sharing of information is close and continuous. To maintain human interaction with family and friends by phone or new social technologies, takes a little practice.
Be sure that while under the fabric facial mask, (if your jaw is ok), to move your mouth, lips, and jaw. Exercising the facial muscles can add to your expressions. Do not just hide your face under the mask. Remember that you are going to have to speak louder, slower, and clearer, especially, with a mask covering your mouth. One more challenge to tackle. We can do it!