AsoftVoice.com Recognized as one of the Best Blogs on Parkinson’s Disease for the 4th Year in a Row!

Healthline 2018 Best Blogs Parkinson's Disease

Healthline 2018 Best Blogs Parkinson’s Disease

I am so grateful and honored to announce that for the fourth year in a row Asoftvoice.com has been chosen by Healthline.com as one of the best blogs on Parkinson’s! I am elated to be picked with so many outstanding bloggers and such exceptional websites that I respect so highly! I congratulate all of my friends and fellow bloggers who also received this award!

Thanks to Healthline.com for including AsoftVoice.com as one of their 2018 Best Blogs Parkinson’s Disease and everyone who reads this blog! I hope that I can provide content that you will find to be interesting, educational, and helpful! Thank You!

 

Mother’s Day 2018

On this, the 8th Mother’s Day without her, I lit a candle and enjoyed her favorite flower in her memory! She encouraged my blogging, my writing, and ultimately my books! I am so grateful for her support!

Words Matter In Medicine–Compassion and Kindness Are 2 To Focus On!

When I was first diagnosed, the neurologist in 1991, coldly and in a matter of fact tone informed me that I had “a reptilian stare”! I don’t know if this is an official piece of medical terminology or the vernacular, but I most assuredly must express my thoughts of using such a crude comparison.

Doctors can be outstanding resources for data gathering and possible new treatments, but often fizzle when it comes to bedside manner, hand-holding, support, thinking outside the box, or just sharing compassion. I know that there are some of them out there and I hope that your doctor or doctors are of the compassionate qualification—but if he or she is not, what do you do?

Here lies the $64,000 question (old reference-sorry), of asking what it is that you expect to receive from your physician and how it is delivered?

Is it so difficult to reach your doctor that you can’t get a 24-hour response? Any response?

Navigating the labyrinth-like phone system of most medical providers is a test of resilience and sheer willpower. I think that it might just be an exercise to see just how committed their patients are to the practice. I would compare calling doctors’ offices a close comparison to my childhood game playing of that ever so frustrating, never-ending game of Chutes and Ladders—almost as annoying as pick up sticks. Ahhhhhhhhh, the good old days.

Some doctors’ offices think that they have joined the 21st century by installing these “portals” that are misnamed, closer to a black hole, are often unread on a timely basis, and overly buggy or confusing to maneuver around—other than my issues, they are great!

I don’t have any insight into defying the complexities of the phone systems or portal projections, but you might express your frustrations to your doctor and any staff who will listen. Be sure and share the good stuff with your doctor’s office as well, when this might happen.

Some Parkinson’s events and sites to make you aware of this #ParkinsonsAwarenessMonth 2018

This, as is every April, is Parkinson’s Disease Awareness Month—it is a time to learn about an illness that touches millions of lives across the globe. Help spread the word to anyone you know who may have a need for assistance in getting more of an education on the complexities of Parkinson’s disease.

This #ParkinsonsAwarenessMonth there are so many events going on online and locally.  Here are a few of the many Parkinson’s disease related events that I want to point out –there are far too many to mention (check your local community for special events close to you), along with some online resources that I encourage you to visit.

April is Parkinson's Awareness Month

April is Parkinson’s Awareness Month

April 14, 2018 12pm -5pm
Pints for Parkinson’s – Hosted by Rock Steady NOVA
Tysons Biergarten – Tyson’s Corner, VA
Come out and meet others in the Parkinson’s community along with getting information about Parkinson’s resources in the area.  A portion of the proceeds will go to Parkinson’s non-profit charities.

April 14, 2018- 10am CT
Parkinson Voice Project – Parkinson’s Awareness Month Celebration

Streamed live this Saturday 4/14 at 10:00am (CT) home page and Facebook page
Speaker: Stanley Fahn, MD – Founder of the World Parkinson Coalition
Special performance by: The Intentional Singers

April 16, 2018 11am-1pm
Cafe Alexandria – Parkinson Social Network
The Parkinson Social Network launches their Cafe in Alexandria, Virginia!
Visit https://parkinsonsocialnetwork.org/ for more details and directions.

April 28, 2018
Parkinson’s Unity Walk – Central Park, New York City
24th annual gathering in Central Park to bring awareness to Parkinson’s Disease.

Online Resources 

At ParkinsonsDisease.net, there are 17 Parkinson’s Disease community advocates who share their voices from all parts of the Parkinson’s Disease community. To find the community voice that resonates for you, use this link:  https://parkinsonsdisease.net/community-advocates/

The following are articles that were written for 2 websites that I hope that if you don’t know about that you might now take some time to visit. They are good sources for those dealing with Parkinson’s disease! Education, knowledge, and awareness is so important.

Karl Robb Found a New Purpose Through Parkinson’s – Davis Phinney Foundation

Courtship with a chronic condition: How “20 Questions” led to a 20+ year relationship – PatientsLikeMe

A Video To Inspire!

This is my first real attempt at an inspirational film. I hope you enjoy it and share it.

My First Inspirational Video!

I hope that you find this thought-provoking and calming! These are some of my many original photos mixed in with some thoughts. You may have to watch more than once to read everything. Thanks!

April Is Parkinson’s Disease Awareness Month!

Stephen Hawking Went Far and Beyond Thus Excelling Limits, Barriers, and Boundaries!

In the past week, I mentioned the loss of Toys R US, which is a sad memory for all of us who loved our toy stores. The toy store, while an important piece of our past, isn’t nearly as crucial as the loss of Theoretical Physicist, Stephen Hawking.

Stephen Hawking besides being an amazing scientist and one of the greatest visionaries of our time, was a handicapped man who far exceeded his outwardly apparent limitations. Through Hawking’s work in space and time, he gained respect and accolades for his contribution to science, the world, but especially to those of us living with neurological challenges.

Hawking was known for his brilliance but also for his wit and incredible sense of humor. When you looked at Professor Stephen Hawking, his wheelchair and voice communicator became a part of his being. What Hawking wrote and thought has left an impact far louder and more important than his ALS. We looked beyond what most would label as a disability. Hawking lived far longer than ever expected, made a huge contribution to science, and proved that one can truly overcome the adversity of illness.

As a writer, inventor, author, and someone with Parkinson’s disease for over 30 years, I always admired Stephen Hawking. Not until his passing, did I really understand the dignity and awareness that he projected for all of us dealing with chronic health conditions. He showed a strength and tenacity that is an inspiration that I will never forget.

Goodbye To Toys!

The World Weeps for Geoffrey—A Part of our childhood has gone!

Without trying to sound like an old man reminiscing, when I was a boy we had real toy stores, 5 and dimes, candy stores, nut stores, and many more magic shops than we have now! Sure, the web is great– and Amazon has everything, well, almost, and now, if you know what you want, they can probably just ship it to you directly.

The occasional trip to the toy store was this former kid’s highlight. Rock’em Sock’em Robots, Battle Tops, Shoots and Ladders, Monopoly, Clue, besides the creations from Atari, Wham-O, Hasbro, Mattel, and the multitude of toys that most of us grew up with. Is online fulfillment to be the only toy store chain replacement? Are the days of the toy store long gone?

March 14, 2018’s announcement is a tragic blow to those of us who learned patience, concentration, manners, etiquette, cooperation, character, and sportsmanship, all just from board games, alone. Toys teach sharing and bringing friends together to learn proper play. Toys R Us, rather than just thinning the losses of a few chosen select toy superstores, has announced to soon shutter ALL of their toy superstores as well as Babies R Us!

While this may not mean much to some, I know that in my life, the toy store inspired me to invent and look beyond what could be! It expanded my imagination of who I could be or at least dream to be. A toy is really a child’s first tool! Tools can make us better, more productive, and diverse. Toys keep us young. They keep us active, initiated, and sometimes even, enchanted!

Losing the incredible mind of Stephen Hawking, after his contributions to space and science is a huge loss to dreamers everywhere (but what a contribution to the science, disability, and humanitarian fabric of our lives) — more of my tribute to Professor Hawking, very soon.

Don’t Expect Everyone To Understand Parkinson’s-2018!

This was my first blog post 10 years ago–slightly updated!

When I was first diagnosed at the age of 23, I have to admit, the diagnosis of Parkinson’s Disease (PD )came as a relief. What I had convinced myself was a terminally malignant brain tumor was a chronic neurological deficiency of the neurotransmitter, Dopamine–that didn’t sound as bad. Sure, PD can be degenerative and rarely do people with PD get better, over time–but I will say I haven’t changed my medication for several years.  I am lucky and fortunate that my symptoms show a slow progression.

We expect our loved ones, friends, associates, and colleagues to understand our struggle with this difficult ailment. Parkinson’s challenges us all in different ways. Rarely, if ever, do two PD patients share the exact same symptoms. Those who are healthy and untouched by PD are incapable of understanding what it is that we endure with this mysterious and troubling disease. As much as we would like for those who are close to us to understand what it is that we are going through, it just isn’t possible.

Even if we live or work with someone on a daily basis, there is only so much that we are capable of understanding about what it is that they are going through. The best that we can do for any one is to be present, understanding, compassionate, and supportive. Supportive doesn’t mean that you can’t encourage better living and reminding those who you care about to exercise, eat healthier, and to get proper rest.

I’d like to know about your experience with PD. I plan to address issues facing PD patients like doctors, resources, medicines, cooperative medicine, health ideas, what works and doesn’t , Support Groups, PD Conferences, etc.

I hope you find this interesting and helpful.

Thank You!

Karl

AsoftVoice.com celebrates a decade of blogging on Parkinson’s disease!

It is official—this blog, www.Asoftvoice.com, is 10 years old!

With over 300 archived posts pertaining to Parkinson’s disease and living well, it has been a labor of love! Here is to the next 10 years and with luck, a continuation. I hope to hear from more of you, so that I might address topics of interest.

I am happy to report that I don’t have a problem with procrastination—in fact, I’m good at it! Call it a talent, call it a mastery, and to think that I have no training! I am a Master Procrastinator! I admit it—I procrastinate more these days, to stay creative and fluid. I like to work odd hours, sometimes. I write when inspiration calls. So, here are some thoughts to share with you that I hope you can use:

  1. Parkinson’s disease is a strange and quirky illness with a host of awkward and annoying symptoms. I don’t make light of the seriousness of this illness, but if you keep too rigid, you will surely snap. As hard as it may be, hold on to smiling and laughing–as best as you can– it is so important to monitor and maintain a sense of humor. Humor and a positive attitude can go a long way, with any illness! Laughter really is a great medicine!

  2. Parkinson’s disease is a wonderful excuse to break convention— you may find that you enjoy living outside the regular everyday box. It may take time. I’ve had over 30 years to adjust, so forgive me if I make it sound easy. Living with Parkinson’s is anything, but easy.

  3. The fact is that structuring your day and schedule to accommodate your on-times as well as your off-times can make your days far less stress-filled and less dramatic.

  4. The label of Parkinson’s disease covers a broad range of symptoms, some apparent and some unseen by public eyes. No two of us is exactly alike and therefore, our symptoms, medications, progression, and helpful therapies may differ.

  5. If Parkinson’s teaches us anything, it is to slow down the rapid pace of life, look around and enjoy it, to eat slower and savor what we are eating. Parkinson’s is an unusual teacher that forces us to slow down whether we choose to or not. See this new pace as an opportunity.

I don’t know what the next 10 years will bring, but I plan to continue to share and expand my voice through this site, maybe a 3rd or 4th book, and maybe a few surprises (good ones) along the way. I hope that you’ll join me for the ride!

%d bloggers like this: