Category Archives: self care
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:
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:
“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.
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!
It’s World Parkinson’s Day
April is Parkinson’s Awareness Month
I am 53 years old and was diagnosed with Parkinson’s disease at the age of 23. I have made it my mission to provide Parkinson’s awareness through my 12 year old award winning blog, www.asoftvoice.com by sharing lessons and information related to this illness.
Thirty plus years with Parkinson’s has taught me a great deal about living well with this chronic condition.
Here are 10 things I want to share with you about Parkinson’s disease:
- No two people with Parkinson’s are identical. Every patient is unique and may require a personalized treatment plan.
- Often, the first symptoms of Parkinson’s can be a loss of sense of smell, constipation, or wrist or shoulder discomfort.
- Tremor, mobility issues, and facial masking are probably the symptoms that are most identified with Parkinson’s. It is believed that symptoms may begin 10 or more years before visible symptoms might be recognized.
- Some people with Parkinson’s disease may show no external symptoms but can have difficulty with memory and other cognitive issues, digestion, pain, eye problems, or depression.
- A positive perspective, a good attitude, staying flexible, and a sense of humor can help to deal with stress and anxiety.
- Embracing exercise (Rock Steady Boxing), speech therapy (SPEAK OUT!), yoga, reflexology, reiki, meditation, massage, can help to reduce anxiety and stress to calm both mind and body. Don’t stop looking for a combination of therapies that work best for you!
- Parkinson’s disease is not an old person’s disease. I have had Parkinson’s for several years prior to my diagnosis and that was over 30 years ago.
- Dyskinesia (rapid, uncontrolled movement) is not due to Parkinson’s disease itself, but it is a side-effect of the medications.
- Protein can reduce the efficacy of some Parkinson’s medications. Consult your doctor for more information.
- Find a neurologist who is a Movement Disorder Specialist (MDS). They have specialized training in Parkinson’s disease.
I’ve found that by staying active and taking a proactive approach to my Parkinson’s, I’ve been able to live well, pursue my writing career and published two books, lecture, travel extensively, and continue my passion for photography. A diagnosis of Parkinson’s has not been the end for me but given me a new purpose and a new direction for my life.
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!
