Blog Archives
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.
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!
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!
A Partial History in Tees
Almost every Parkinson’s disease conference that I have ever attended, over these 30 years of going to symposiums, lectures, and meetings, almost all of them had a an associated tee shirt. Some of my shirts probably got worn out and some may have gotten lost, over time, but here is a smattering of the events that I either had some affiliation with or attended. It’s a tribute to past events and friends-some gone, but not forgotten.
I thought this video might be a good way to commemorate Parkinson’s Awareness Month. Old tee shirts can hold a lot of memories!
Please enjoy this video to see my collection of tee shirts that I picked up from various Parkinson’s gatherings. Just click this link to see the video: https://gopro.com/v/JbDZkdva0MWvg
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.
The 2020 pandemic has robbed us of my favorite living musician, the great 
