Blog Archives

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

What Every Person with Parkinson’s Needs to Know About Air Travel

Plane Travel!

Don’t be alarmed– but be aware, my fellow Parkinson’s disease travelers!

As if we didn’t have enough to worry about along our journey, it was released recently, that the Transportation & Security Administration (TSA) has a program called “Quiet Skies” that is noting behavior, looking for excessive fidgeting, perspiration, and cold stares by passengers. Supposedly, fifty passengers a day are identified.

We are being tracked and monitored both on the ground and in the air. Our habits, reading material, and reactions are noted and logged, if we bring any kind of attention to ourselves. The knowledge that anything out of the ordinary needs investigation is understandable, but when you are faced with a neurological disorder that can alter your walking, uncontrollable movement and body temperature regulation (both hot and cold), tremor, or balance issues- these physiological reactions are possibly red flags that could bring focus on those of us living with an illness.

Maybe, just maybe, through education and identifying ourselves as people with Parkinson’s and educating TSA agents about facial masking, dyskinesia, bradykinesia, as well as the numerous subtleties that can come with Parkinson’s, might be just what the doctor ordered. Instead of making the TSA wonder what we are going through, we need to create a teachable moment that might just lead to real changes.

People suspect and often fear what they don’t know about. Unless you live with Parkinson’s disease daily and are aware of the wide variety of symptoms and unpredictability of this illness, only through education and extra training will those unfamiliar with neurological disorders come to be educated.

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

Community Update – Events and Online Resources

Parkinson’s Awareness

ParkinsonsDisease.net Reaches 10k Likes!

If you follow this blog, you know that I have been actively posting on the new Health Union site, www.ParkinsonsDisease.net. What you may not know is that this site recently made a rapid climb to 10,000 likes! Here’s where you come in—in honor of this success, you have the opportunity to vote for one of the fine charities below to receive a donation, if they win the vote count. Encourage your family and friends to vote as well. Vote today by clicking this link and scrolling to vote in the poll!

  • Parkinson Voice Project
  • Davis Phinney Foundation
  • Parkinson Association of the Rockies
  • Parkinson’s Foundation (National Parkinson Foundation/Parkinson’s Disease Foundation)
  • The Michael J. Fox Foundation for Parkinson’s Research

—-

Parkinson Voice Project – Parkinson’s Lecture Series

The Parkinson Voice Project has launched a lecture series which features Parkinson’s experts talking about topics affecting our community. They hold this lecture each month and it’s live streamed for anyone in the world to attend. They also archive previous lectures so you can watch the lectures that are of interest to you. Visit https://www.parkinsonvoiceproject.org/ShowContent.aspx?i=1876 for more information about upcoming lectures and view previous presentations which include lectures on wellness, physical therapy, cognitive challenges, making a Parkinson’s diagnosis, and Deep Brain Stimulation.

—–

Virginia Education Day – October 7th, 2017
If you live in or near Virginia, I hope to see at the Virginia Education Day in Williamsburg on October 7th, 2017. I am a member of the planning committee. The event is being held at Fort Magruder Hotel and Conference Center. The Education Day is has a diverse mix of wellness information including presentations by physicians, people with Parkinson’s, caregivers, and allied health professionals. Click this link to see the conference brochure and click here to register for this event.

—–
Living Well Conference 2017 – Parkinson Foundation, Western Pennsylvania

Join Angela and me in November in Pittsburgh for their Living Well Conference 2017, where we will be presenting and facilitating two breakout sessions. Read this link for all the details. We would love to see you there! We will also be selling and signing our books and audio CD collection at both events—we hope that you can make it!

Being Mindful plus Adding Knowledge (a partial reprise with new information)

 

Keeping focus and staying mindful is a daily challenge for most of us but add chronic illness to the equation and the challenge gets that much harder. With all the emails, voicemails and other electronic messages, signs, advertisements, phone calls, and various shout outs from the world, distraction of thought is so easy.

Finding a peace within ourselves comes much easier when we are able to separate ourselves from the frenzy and din of modern technology.  Taking a few moments a day of quiet time for yourself can ease tension, quiet the mind, and clear your thoughts.  A few minutes of peace is like a reboot for the brain.

We must never let ourselves stop learning and adding new abilities. The overwhelming multitude of information from how to juggle, how to whistle, how to tie a bow tie, how to draw, to almost any talent that you desire can be found on youtube.com. If you want to learn a language, take a course, or just find a video to make you smile or laugh out loud, there is a good chance that you’ll find it.

If you want to learn math, business, science, and a wide range of classes that you either missed the first go around or want to try again, checkout khanacademy.com.

I have discovered that the tactile feel of a pen on paper and on a tablet has led to improving my ability to write and draw. What once was illegible is now discernable, and I think I owe it to being mindful and focused while in the moment. I have found that by trying to teach myself to draw that I have better control of the pen or pencil.

Make a list of 5 to 10 goals that you might want to complete like: 1) Learn a really good card trick, learn the secret to telling a joke, learn how to make a better cookie, tie a bow tie, how to juggle, learn to meditate, or sharpen a knife. These are just a few of the opportunities to take advantage of on the web. You will be surprised by the diversity and quality of the material that is available at no cost.

Just learning one new talent or honing an old talent is a good way to keep the mind and body active and connected. Stay open-minded and flexible! Try your best and stay focused on the task at hand.

There is still a great deal that you can do and enjoy. Try something new today.

%d bloggers like this: