Category Archives: Media & Trends

A Soft Voice Chosen by Healthline.com as One of the Best Blogs on Parkinson’s Disease

Thank you @Healthline for including us for this distinct honor and acknowledging our work!

Congratulations to Allison at Perky Parky, Sharon at Twitchy Woman and my peers at @ParkinsonDotOrg @CureParkinsonsT @DavisPhinneyFND @shakeitupaust @parkinsonstory on this accomplishment.

To be included with such well respected peers is a true honor. You all make huge contributions to our #Parkinsons community that are so life changing. I am honored to be in the company of these influencers on Parkinson’s disease.

Many thanks to you, my readers for making this possible and your continued support. I hope that I can provide you with positive and useful information. My goal is to empower and to offer a fresh perspective at how we handle and perceive our chronic illness.

ZOOM Is Changing The Way We Communicate

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.

Illustration of computer with multiple human likenesses.
Image: istockphoto.com

 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:

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.

My First Online Doctor’s Visit – TeleHealth Makes Sense for Less Stress and Lower Expense

Two weeks ago, I had my very first telehealth appointment with my neurologist of about 8 years. I had spent at least a half a dozen years of advocating on Capitol Hill to make telehealth available (attempt to get it covered by insurance as well) to the public. Telehealth has become a reality and a viable, valuable, convenience –but also a solution for meetings! For some of us, telemedicine has pulled back the curtain on a new technology with unlimited potential and opportunities. Telehealth is becoming a necessity and not just a mere luxury. Right now, this new technology is great during this pandemic, but it could change back, without government legislation.

Thanks to the improvements in technology like band-with, compression, fiber cable, security, improved software, and the pandemic forcing us to drop or ease regulations, the current crisis has made a rapid need for this amazing service.

Dr. Ray Dorsey M.D. MBA is the David M. Levy Professor of Neurology and Director of the Center for Health + Technology at the University of Rochester and has been an active and longtime proponent of telehealth and telemedicine. As longtime Parkinson’s advocates with the former Parkinson’s Action Network (PAN), my wife, Angela, and I would bump into Dr. Dorsey with some frequency, over the past ten years. Ray has been a visionary of this technology and of its’ potential. Now telehealth needs to become a legal standard that we can all have access to, from now on.

My neurology appointment was made for 4:30 PM but I was asked to be on the site at 4:00 PM. I submitted my follow-up documents before we met, to save time and confusion. Due to an error with the submit button, I had to handwrite my documents, scan them, and send them to their office.

I really preferred not having to race through rush hour traffic and the tension of making it there on time. Using my kitchen as a waiting room was quieter than the doctor’s waiting room, was more comfortable, was more sanitary, was less stressful, and I had periodicals from the last decade. But seriously, the whole process of going online reduced wasted time, lowered anxiety, lowered stress, reduced exposure to any ill people, plus, we did not have to expend gasoline to drive there.

 A bubbly and engaging nurse asked me a few questions, about fifteen minutes prior to the actual appointment time. When we were done, I was told the doctor would be right in. I was reminded of the old days. I waited. Remember waiting for your doctor? Of course, you do!

The wait was brief, and my doctor was terrific. I had checked my blood pressure just before the call, and I scored a calm 120/80. The appointment went smoothly, and we agreed on my regimen.

There was no flexibility test or a fall test. He watched me walk. He filled my prescriptions. As any doctor visit goes, I have got to tell you, I wish, and I hope that they are all like that one, in the future!  There is a big take away to remember: Tell your elected representatives how important telehealth is to you!

 I saw Ray Dorsey in a Zoom meeting recently, discussing the new book, Ending Parkinson’s Disease, which he co-authored. I asked Dr. Dorsey what his thoughts were on the rapid burst of telehealth popularity. His remarks were, that if you like using telemedicine for physician visits, to tell your representatives, so that we can keep this most beneficial technology. Tell your Senators and Congress people that you want Medicare coverage for telehealth to keep telehealth as a medical option and to vote it into a law!

Telehealth has the potential to make doctor visits smoother, safer, and more efficient. This technology is an option that we need.

Hear It, Share It – How to Talk to Doctors (Part 3 of 4)

Knowledge is Power - A Soft Voice.com

It’s week 3 in my Hear It, Share It series. My goal for this series was to share some chapters of my audiobook (for free/no download) with you in hopes to help during this Coronoavirus pandemic. I hope you’ve enjoyed listening to these chapters and found something to take away!

Even though my book with this chapter was released in 2012, the information remains timely and pertinent for telehealth visits as well as in-person appointments. Making a connection with your physician(s) can build a rapport that is less stressful and reduces the usual doctor visit anxiety. Click the play button below to hear voice actor/narrator, Doug Gochman read Chapter 9:

If you missed the first two parts of the series, you can use these links to go back and listen:

Part 1: Timing in Parkinson’s Disease May be Everything
Part 2: This Disease Isn’t Fair

Please feel free to comment about this chapter and share your own tips on how you talk with your doctor(s) by clicking the Leave a Comment button below. Share this post with others by clicking the share buttons on the right.

Come back next Thursday to hear the final installment in this audiobook sharing series! If you subscribe to the blog today, you will receive automatic notification when the next post is released.


I am not a doctor and this is not medical advice. This is my personal opinion that I’ve developed as I’ve lived with Parkinson’s disease for over 30 years.

Hear It, Share It – (Part 2 of 4) – This Disease Isn’t Fair

Today’s posting is part two of the four chapters I am sharing from my audio book, A Soft Voice in a Noisy World – A Guide to Dealing and Healing with Parkinson’s Disease. This week’s chapter is about the fairness of Parkinson’s.

What is Fair?

We are all tasked with some sort of physical, mental, or spiritual challenge in our lives at some point. Some events that we face are inexplicable and hard to fathom. Often, we categorize a level of what is fair or unfair. Parkinson’s disease, for over 30 years, has taught me that as difficult as some lessons are to learn, they’ve helped me to grow.

Click the play button below to hear voice actor/narrator, Doug Gochman read Chapter 12 to hear my perspective on fairness:

Chapter 12 – This Disease Isn’t Fair

If you missed the first post in this series, visit this link: Part 1 – Timing In Parkinson’s Disease May Be Everything

Please feel free to comment about this chapter by clicking the Leave a Comment button below. If you liked this chapter, please share this post with others by clicking the share buttons on the right.

Next Week’s Chapter…

The next chapter in this series has some ideas on how to talk with your doctor. Come back next Thursday to hear the next installment! If you subscribe to the blog today, you will receive automatic notification when the next post is released.

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