Blog Archives

Change Brings Change

Nothing stays the same. Some of you will remember and even miss the days of what was. Remember screen test patterns *  the fall of the innovative company, General Magic * the magic of hit toy, Teddy Ruxpin * no more Friday night rush to Blockbuster Video *  the love of the video game arcade * the hilarity of Celebrity Death Match * the intrigue of the cartoon, Jonny Quest * the wonder and excitement of going into a magic store * or having ice cream in NYC at the long gone ritzy and elegant NYC ice cream parlor, Rumplemayer’s, *  the lessons of Fractured Fairy Tales, and the teachings of School House Rock * the breakthrough of cassette tapes and the frustration of finding your song on an 8 track * the challenge of finding stored computer files on cassettes and floppy discs * the disappointment of Al Capone’s vault and new Coke * the loss of childhood candy with real sugar and real ingredients without fillers and fake stuff, corn sweetener or xylitol, sorbitol, or dyes * when there was no Web access and you actually talked to librarians and experts on the phone or by mail * when you typed code of computer language out of a book to develop a game with very limited features for hours only to have to retype it again, because you missed a comma or a character—making for retyping of hours of editing * only having access to music and pictures to what you bought in the Record Bar or Tower Records and pictures that you took on your disc camera or instant Polaroid * when disco died and country was cool and real * remembering television stations signing off at night to end their day of broadcasting and there were only 3 stations to choose from because cable wasn’t created * books were treasured, revered, and read as a choice of education and entertainment but they didn’t rival television because many of the books were better than lots of the programming * when radio preceded television (I was too young) but I do remember listening to years of American Top 40 with Casey Kasem and hours of radio, both day and late into the night * a small handheld Sony portable television made television viewing mobile * when people met in the classified ads * when infomercials were new and Mr. Microphone and the Pocket Fisherman reeled you in.

Like flowers!

Change is inevitable. From my experience, people with Parkinson’s disease are not wild about change. I am not big on change, but I try to embrace innovations and new technology, as best as I can. Some changes are easier than others. Flexibility and resilience can go a long way with Parkinson’s. Life has changed in a rapid and dramatic manner. Our lives will change as will the rules of how we interact with the world and those close to us. For the foreseeable future, we must envision the welfare of others and see that we mask ourselves to prevent the spread of the contagion and minimize danger to those at risk.

A Parkinson’s Wellness Checklist

Photo of a tasty tart by Karl Robb
Good diet!

Self-care is a topic that I talk about quite a bit, on this blog. During these changing times, it can be easy to forget wellness tools that we have in our toolbox.

In helping myself to remember to do my own self-care, I developed the checklist below and thought it might be a helpful resource and tool! You might consider using the list as a daily checklist to discover some helpful sites and be inspired to start or finish a project.

Wellness is an important part of our journey with Parkinson’s disease. I believe keeping the mind, body, and spirit in balance is a holistic approach to living well with Parkinson’s. This list covers these these 3 areas of wellness and allows to you to be creative with the items you feel drawn to add.

If you know your Parkinson’s disease resources well, you might share the list with those who are less familiar with available information. I hope that this is a tool that you can use to help yourself.

PD Checklist by Karl Robb author ASoftVoice.com

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.

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.

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!

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