Category Archives: support groups

An Exciting Documentary Project Called The Animated Mind of Oliver Sacks

UPDATE 07/23/18 – I am happy to report that The Animated Mind of Oliver Sacks project on Kickstarter met and exceeded it’s goal by nearly 25%!
I am so glad to see the support and deep interest in Dr. Sacks’ work continues on! I can’t wait to see the release of the film!
-Karl
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In the medical world, it is a rarity to uncover a medical anthropologist and an ambassador of compassion who writes with humor, tenderness, truth, sensitivity, and frankness. Dr. Oliver Sacks was all that and more. To this day, I don’t know of a greater contributor to the world of Parkinson’s disease. He was a tenacious advocate and Levodopa researcher, as documented in his book Awakenings and then movie starring Robin Williams. Over 50 years later, Levodopa remains the gold standard drug for Parkinson’s patients.

On a personal note, I started taking Levodopa in 1991, had I not had access to this medicine, I can only guess what my life would look like.  This life-changing drug has given me the ability to move, to speak, and to function. Like millions of Parkinson’s patients around the world, I am and will be forever in Dr. Sack’s debt for the gift that he has given me and the Parkinson’s community.

The Animated Mind of Oliver Sacks

The Animated Mind of Oliver Sacks

Oliver Sacks left us in 2015 but his numerous books, writings, lectures, and interviews live on and on. Now, thanks to the passion and vision of documentary film-maker Dempsey Rice, comes The Animated Mind of Oliver Sacks. There is just over two weeks left to complete this important Kickstarter campaign and bring over ten years of exclusive interviews to the big screen. Through the beautiful medium of animation, Dempsey and her team will show us Oliver’s refreshing and revealing outlook on medicine and compassion, music, gratitude, and the down to earth attitude that made Dr. Sacks so revolutionary.

Dr. Sacks connected with his patients. He deeply cared about people and their care. Oliver Sacks understood the uniqueness of every patient and took a fresh approach to the doctor patient relationship. Both a compassionate neurologist and a tenacious investigator, Sacks believed that the patient should be more empowered and in greater control of their care—an uncommon and somewhat controversial opinion for many physicians. You can hear his compassion in this quote:

“My note was a strange mixture of facts and observations, carefully noted and itemized, with irrepressible meditations on what such problems might ‘mean’, in regard to who and what and where this poor man was – whether, indeed, one could speak of an ‘existence’, given so absolute a privation of memory or continuity.”

― Oliver Sacks, The Man Who Mistook His Wife for a Hat and Other Clinical Tales

Dempsey says, “Animation is a great art form.” The medium of animation adds a whole new dimension that will elaborate on Sacks’ insights. Meshing Sack’s spoken words and powerful visuals of the stunning animation enhances the thoughts and concepts that are discussed onscreen. Through the power of film, we will see Dr. Oliver Sacks in what I believe to be a memorable moving documentary that encapsulates the immense impact that he had and continues to have on medicine, our medical care and our perception of medicine in general.

I think that this quote summarizes Dempsey’s passion, drive, and appreciation for Sacks’ works: “Throughout our time together, I was consistently awed by Oliver and his deep compassion for all living things.  His unfailing curiosity drove him to explore the magic of how our brains work and delve into the extreme joys and sorrows that come with human existence,” said Rice.  “My hope is that this film inspires new insight and deep compassion for the human experience, in addition to celebrating Oliver’s irrepressible enthusiasm for, and curiosity about, the human mind.”

Upon completion, Dempsey hopes the theatrical release will be available in early 2020.

I encourage you to learn more about Oliver Sacks and Dempsey Rice’s film, The Animated Mind of Oliver Sacks at the following links:
Kickstarter campaign page: http://bit.ly/animatedmind4,
Website: http://theanimatedmindofoliversacks.com/
Facebook: https://www.facebook.com/TheAnimatedMindofOliverSacks/
Twitter: https://twitter.com/oliversacksfilm
or Instagram: https://www.instagram.com/oliversacksfilm/

Accept Your Mission! It’s Not Impossible! Focus Your Energy, Wisely!

If you are embarrassed, sad, shamed, or lack self confidence about having Parkinson’s, I am here to tell you that you don’t have the energy or time to devote to such unproductive emotions. Stay strong! You have joined a community of amazing, caring, helpful people who are there to support you and encourage you. Spending time on activities that take you away from being your best will only deplete you more. Choosing to be positive and to be your very best can be a reality and not a mushy platitude!

It is up to you to make the first move. Admitting and succumbing to the realization that you need help is not weakness but new found strength. Helping oneself to learn about how others are surviving and thriving benefits all involved. This generous group of people with Parkinson’s and care partners are ready and willing to share their experiences of what has worked and what needs improving. There are tomes of great advice, educational videos, supportive medical experts, and organizations with helpful support groups and exercise programs! Be aware that your improvement and care all begins with your passion, diligence, and commitment to getting better.

I won’t say that being thrust into the world of Parkinson’s is easy and nor is it your first thought to just accept it and move forward. I had some dark days until I realized that my body, mind, and spirit were in jeopardy. My being is my responsibility. There is plenty of help out there, but you are your greatest resource. Now, build your team!

Parkinson’s is an illness that you do not fight, but work with, work around, and find solutions that work for you. In other words, Parkinson’s takes work! I, like you, am on a constant and continuous hunt for wellness or at the very least, some therapy, drug, exercise, or device to improve my condition. I wish you well!

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!

Rock Steady Boxing–It’s so much more than just boxing!

I recently joined a Rock Steady Boxing class! The class and the instructor are wonderful! If you have Parkinson’s disease and haven’t tried the Rock Steady Boxing program, I encourage you to find the nearest program in your area. The camaraderie and encouragement amongst the participants is uplifting and inspiring.

The workout is tough, lively, active, loud, motivating, and rewarding. I hate to admit it, but I am getting older. I’m rediscovering muscles that I have not used for a good while. For an hour and a half, the boxers either move through a series of exercise stations made up of quick thinking and moving games, flexibility or core exercises, many of them borrowed from yoga focusing on balance, strength, posture, and mobility. The program is flourishing, as it should. It’s novel, fresh, and effective! This program does something amazing—it makes working out fun again, for me.

Rock Steady Boxing NOVA has been an experience that I did not expect! The whole class has bonded and become a unified group. Everyone supports the other and encourages their fellow boxers. Our coach and leader, Alec, is a charismatic and inspired young man who really strives to make improvements in our class’s lives. 

My first two classes, the workouts kicked my butt! I am happy to say that I can see an improvement in my strength, balance, and overall fitness. Rock Steady Boxing is a welcomed break in my day and week. I see the boxing as a moving meditation. It is a break that I look forward to, as well as seeing my boxing friends and putting on the gloves. I think this program builds your confidence as much as your body. Rock Steady Boxing is like a fast-paced support group that makes you sweat.

If you are looking for an opportunity to get a great workout, build some muscle, make some new friends, and pound some punching-bags, then I encourage you to try Rock Steady Boxing in your area to see if it’s right for you! 

What does Thanksgiving mean to you?

For me, the holiday resonates with special memories of the whole family watching parades, football, and eating my late mother’s exceptional cooking. Those memories are treasures that line the walls of my Thanksgiving box for the rest of eternity. Those days are long past, but I am still fortunate to make special new memories with dear friends who mean so much to me. Times change, life moves quickly forward, and I am forced to accept change.

I think a keystone of this holiday is about one thing only, gratitude. In the hustle and bustle of shopping, cooking, pre-Christmas preparation, and Black Friday sales, the meaning of Thanksgiving gets blurred.

This year, I have lost more dear friends, neighbors, and close Parkinson’s disease colleagues than I can count on my fingers. Loss of loved ones, both friends and family are so bittersweet as I rejoice in having been part of their lives, yet mourn that those days have ended.

As the year quickly ends, I am ever so grateful for my wife and best friend, Angela, my wacky and hilarious chocolate lab, Lily, my relatives all across the United States, my dear Reiki and Parkinson’s families, and you the reader/subscriber who takes time out of your busy day to read my latest blog post. I am grateful!

Thank You!

Happy Thanksgiving!

10 Tips to Improving Your Life with Parkinson’s Disease and Other Health Conditions

10 Tips to Improving Your Life with Parkinson’s Disease and Other Health Conditions

Parkinson’s disease is an illness that may require varying strategies. It may take new and different tactics to work with the ever-evolving changes that may pop up over time. Here are a few pieces of advice to consider as they may help you as they have helped me:

10) Intake Matters – Consider everything that you put into your body. Stay hydrated! Eat as cleanly as you can (local organic fresh vegetables, balanced diet, pay attention to your nutrition) and going easy on processed foods. Try reducing and even eliminating soft drinks. Avoid artificial sweeteners! Diet and Parkinson’s disease seem to go together; which makes complete sense, as reams of research seem to point to the gut as a possible culprit for the illness. Since going vegetarian, by vastly reducing my soft drink intake, increasing my water consumption, and reducing my reliance on processed foods, I have noticed digestion and medication absorption both, seem to have improved.

9) Keeping Social and Well – Informed – Creating and maintaining a social life keeps you involved, knowledgeable, engaged, and active. A social network and/or a support group is an opportunity to connect with other like-minded individuals who are dealing with your condition. Sharing information together provides you with a resource for experience and wisdom from those who are living with illness as well as those who are caring for loved ones. Having a sounding-board of experienced people can be very helpful when trying to learn about medications, navigate local resources, find therapies, and share stories about your health care providers. Seek support!

8) Lowering Your Stress Level and Keeping Anxiety Down – There are techniques and complementary therapies like massage, yoga, meditation, Reiki, and Tai chi, which can reduce stress anxiety, and calm the mind; these are but a few of the many therapies that you might consider trying. Several of these therapies can help teach breathing techniques and ways to lower anxiety. Finding that balance of your mind, body, and spirit can have a significant impact on your health.

7) Special Doctor – If you have Parkinson’s disease or another kind of movement disorder, find a neurologist who is specially trained as a Movement Disorder Specialist. They have extra training and an understanding in neurological disorders.

6) Keeping Positive – A positive attitude is contagious. Making the choice of staying positive and identifying the good instead of the negative is important to create a healthy and conducive environment. Remember that you have a choice!

5) Gratitude – Hold on to your joy for life and the gratitude for all that is in your life! Appreciate what may seem like small things but really are not, is a good start. Medicine, doctors, clean water and air, a good meal, friends, family, and just being alive are all to be appreciated. Add the awe of a sunrise, a sunset, a good laugh, great conversation, and helping someone else, are all acts to be cherished.

4) Doing What You Can – Do as much as you can, while you can, and maximize your good days! Take advantage of everyday and make the most of them!

3) Be Heard – Get involved in your community through advocacy groups, local organizations, and share your voice about your journey with illness. Educate those around you about your illness and encourage friends and family to learn with you on how to improve the Parkinson’s community.

2) Do Something – If you are in denial, apathetic, or depressed, it may be very difficult to motivate yourself to do what you need to do. It may be helpful to seek help from a counselor or someone who understands depression. This may take small victories and small steps. It may take learning about the disease in small chunks. Know this, that everyone’s journey is different and that you can’t gauge one patient by another. The more proactive and motivated you are, the more prepared you will be. Being flexible and staying open to new opportunities can be very helpful.

1) You are Not Powerless – Realize that you are in the driver’s seat to your healthcare! You must be your own best advocate and make sure that you are doing your very best. Be proactive with conventional medicine, skeptical but open to other non-invasive therapies, and a willingness for change. A little hope and faith can go a long way!

I really do believe that we have the power to help ourselves. We have the power locked inside ourselves, we just need the right key to unlock it. I think it is up to us to find that key.

Enjoy #SingOut2017 Concert via Live Stream tomorrow 9/9 2pm CDT 

Watch the world’s largest Parkinson choir give a concert tomorrow, Saturday 9/9 at 2pm CDT. You can watch the performance either in person at Richardson High School

1250 W. Belt Line Road, Richardson, Texas 75080

-Complimentary Valet Parking

-Reception to Follow Performance

or watch the LIVE stream of the concert at the Parkinson Voice Project Facebook page.  For more information you can also visit: http://www.parkinsonvoiceproject.org/ShowContent.aspx?i=1834

It’s so inspirational and moving to witness over 100 unified parkinson voices as one loud harmony! You need to hear it and share the triumph of these singers as they raise their voice in song. I encourage you to listen and experience this magical presentation.

Just so you know, I am a supporter and board member of the Parkinson Voice Project and have been for over ten years.

Book Review: Parkinson Voice Project

Dealing and Healing with Parkinson's Disease and Other Health Conditions: A Workbook for Body, Mind, and Spirit

Dealing and Healing with Parkinson’s Disease and Other Health Conditions: A Workbook for Body, Mind, and Spirit

My many thanks  to my friends at the Parkinson Voice Project in Richardson, Texas for this generous review of our second book!

Book Review by LOUD Crowd® Member Carol Brandle

TITLE: Dealing and Healing with Parkinson’s Disease and Other Health Conditions: A Workbook
for Body, Mind, and Spirit
BY: Angela and Karl Robb

Having a workbook to accompany the best-selling Parkinson’s book, A Soft Voice in a Noisy
World, provides an excellent wellness tool for individuals or group discussion. Questions in the
workbook are closely paired with chapters in the book. Additionally, some questions shine light
on new ideas, such as complementary therapies like Reiki, massage, acupuncture, and
reflexology.

Karl Robb brings the same positive attitude, hope, and strength to this workbook as to his
book, A Soft a Voice in a Noisy World. Exercises which reduce stress and reaffirm strength can be
done as individuals or in communication groups, such as The LOUD Crowd® groups at Parkinson
Voice Project. A caregiver or partner might use the questions to strike up meaningful
conversation with the affected person, whether Parkinson’s is the health concern, or some other
health conditions. Either format will help you balance the connection between mind, body, and
spirit.

It’s apparent that Angela and Robb write from a wealth of experience as they direct
questions to sensitive issues, such as “What are you willing to do to help yourself?” and creating
a timeline to improve communication with a health care provider. Angela was honored in 2015
as a White House Champion of Change in Parkinson’s Disease. She and Karl also author an award winning
blog, http://www.asoftvoice.com


Angela and I have been fans, friends, and Board members of the Parkinson Voice Project for several years. We encourage anyone unfamiliar with this organization to learn about the wonderful work that they do.

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