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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

Hear It, Share It – Positive Daily Living (Part 4 of 4)

I hope that you enjoy this last installment (4 of 4) in the Hear It, Share It series where you can listen to chapters of my audiobook (for free/no download).

Chapter 29 of my book,
A Soft Voice in a Noisy World, is Positive Daily Living. The chapter offers some fresh perspectives and numerous suggestions on how we might make some changes in our daily lives. Voice actor, Doug Gochman does a wonderful job in expressing my words on the audio book.

Chapter 29 – Positive Daily Living – A Soft Voice in a Noisy World by Karl Robb

Listen to the Series

If you missed the first three 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
Part 3: How to Talk to Doctors

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

If you want to hear more of the book, the audio book is available where most audio books are sold. Here’s a link to the Audible/Amazon version. If you still use CDs, you can either order online via our Square store or email us to order the 4 CD collection!

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.

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