Blog Archives

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.

Does Masking Have A New Meaning?

Mask Up!

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!

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.

Hear It, Share It (Part 1 of 4): Timing in Parkinson’s Disease May be Everything

During these uncertain times, now seemed the right time to share with you some words that might be of help. As we all are at home during this outbreak, I know I’m thinking about and discovering how to get back to a routine that I can keep. It isn’t easy with constant distractions. The refrigerator constantly trying to lure me, the phone ringing with robocalls, trying to work, and timing my medications – all at once – they all pull at me!

Listen to the Audio Series

So, for the next four weeks, I will be sharing a chapter from my audio book, A Soft Voice in a Noisy World – A Guide to Dealing and Healing with Parkinson’s Disease that I think might be helpful. This week’s chapter is about dealing with timing in Parkinson’s.

Timing is Important

Timing your medicine, your diet, your exercise, your sleep, and your work are a challenge that takes some self-discovery. Click the play button below to hear voice actor/narrator, Doug Gochman read Chapter 15 of my book, to get some ideas on timing:

Chapter 15: Timing in Parkinson’s Disease May be Everything

Keeping up on a simple daily regimen can feel like a full-time job in itself, and the longer you have this illness the more you’ll recognize the importance of being diligent in monitoring how you’re body is reacting to your medicines.

Karl Robb, A Soft Voice in a Noisy World

Please feel free to comment about this chapter and share your own tips on how you manage your daily timing by clicking the Leave a Comment button below. Share this post with others by clicking the share buttons on the right.

Next Week’s Chapter Hint…

The next chapter in this series deals with the dilemma of weighing the fairness of living with a chronic condition. 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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