Category Archives: living well
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:
“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!
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My Droid Neighbors
Technology really can deliver, and Starship is proving it. This marvel of technology is providing an essential service, during this pandemic. My neighborhood in Virginia is being invaded by R2D2 lookalikes carrying meals from neighborhood restaurants. From coffee to ice cream these cute droids are aiming to please. This is innovation at it’s very best! GO ROBOTS!
At about 4 miles an hour, they zip down city sidewalks on target for delivery. What a date to praise the robot invasion—May the 4th be with you to all those techie and Star Wars lovers!
Tools and Resources
This pandemic has changed the world as we know it. There is no telling when quarantining will end and what will be the new normal. I have seen a few shining positives that have brought on what I hope will outlast the coronavirus outbreak.
After over a quarter of a century of advocating to Congress about the benefits of telehealth, your doctor visit by video has become a reality out of sheer necessity. Telehealth or telemedicine can reduce stress, anxiety, rush, travel time, germ exposure, and makes it easier for the carepartner. In trying times like these, heroes arise from selfless contributors, like the dedicated men and women facing the front-line of this virus, day after day.
As distance learning and remote access to information has quickly surged, I offer you a helpful list of ongoing classes, speech therapy, singing, relaxation, exercise, and socialization. This list of resources will hopefully help you to stay active, connected, and supported. Our list is a useful array of local, national, and regional online resources that may make your day, just a little better!
Sequestered Gratitude
If you are complaining about being sequestered at home, be grateful that you have a home and a place to reside through this craziness.
If you are arguing with your family member about who ate the last waffle, be grateful that you have the time to be with them.
If you aren’t terrified from this virus, then you aren’t alive.
If you are bored, then you have nothing to read, have nowhere to walk, made no attempt to expand your artistic acumen, are unable to access television, internet, radio, phone, or paper and pen.
If you have nothing to do while you are sequestered, then you know everything, have the perfect home, can do everything, and have achieved perfection. Congratulations!
If you are unable to just enjoy a few minutes of quiet time, by yourself, maybe you should ask yourself why this is?
If you aren’t grateful for this time with your family, dog, cat, or loved ones, it’s time, right now.
Take advantage of this precious time and savor your life at home!
A Very Different Parkinson’s Awareness Month!
In just a matter of days, our world has been turned upside down and around by an invisible and deadly invader. Many of us have turned to an online life of Zoom or Facebook Live. Whether it is for schooling, our occupation, support, workouts, weddings, births, or even funerals. Our life, from start to finish, has become a digital experience.
If we were a lonely planet before the COVID-19 virus’s rampage, our sequestering for our health doesn’t help our mental state. Socializing and getting to know our neighbors is improving and uniting us in ways not seen since WWII.
April is Parkinson’s Awareness Month! As COVID-19 continues to impact the world, it frightens me that all of us who have Parkinson’s disease are more at risk to the virus. Many of us have weakened immune systems and are susceptible to respiratory complications.
This Parkinson’s Disease Awareness Month Has Changed
This is a Parkinson’s Disease Awareness Month like no other! As our message of awareness may get muffled in the shadow of the threat of this virus, it’s important to continue to share information. Normally, awareness about Parkinson’s would be focused on informing those unfamiliar with Parkinson’s about:
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History of Parkinson’s
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Diagnosis
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Prognosis
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Parkinson’s Medications
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Research or Therapies
Rather than offer an awareness about Parkinson’s, we should consider a more timely tact to provide an awareness about protecting ourselves from this dangerous Coronavirus! Please stay strong and maintain your physical and mental health by staying active. So, here are a few sites to keep you informed and up to date:
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World Health Organization (WHO)
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Centers for Disease Control (CDC) – US
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The Coronavirus and Parkinson’s Disease – Parkinson’s Foundation
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COVID-19, Anxiety, and Parkinson’s: Staying Healthy in These Unusual Times – World Parkinson Congress (WPC) blog
