44 posts tagged “parkinson’s”

“Dealing and healing” together: Karl and Angela Robb team up with PatientsLikeMe and share about living with young-onset Parkinson’s disease

Posted August 30th, 2017 by

PatientsLikeMe is pleased to announce a new collaboration with Karl and Angela Robb, the husband-and-wife team behind Karl’s blog, “A Soft Voice in a Noisy World: Dealing and Healing with Parkinson’s Disease,” and the authors of two books. You might’ve already seen Karl’s #MoreThan story. Karl and Angela recently shared even more with us in a Q&A about Karl’s diagnosis with young-onset PD, living 30+ years with the condition, and maintaining a strong relationship and an award-winning blog, to boot. Stay tuned for guest blog posts by Karl and Angela as part of this collaboration!

Young-onset Parkinson's

Your blog’s name – and much of its content – reflect your appreciation for calm, peace and quiet, especially in the pursuit of “dealing and healing” with PD. How did you arrive at a peaceful outlook after being diagnosed at a young age with a serious condition? 

Symptoms began in my teens. My diagnosis for Parkinson’s disease came about six years and eight or nine doctors later. Knowing hardly anything about Parkinson’s disease at age 17, I was sure that I had a brain tumor. I prepared myself for the worst possible outcome and made the decision that whatever the result may be, I was going to make the best of it. I was going to live and be thankful for it.

I have not always been at peace with this illness but it has definitely improved and mellowed with age. I believe that learning Reiki almost 20 years ago and lowering my stress has played a big part in accepting this illness.

How do you manage on days when you’re feeling more frustrated and stressed?

We all experience days that we would prefer never getting out of bed. With Parkinson’s, you have your better days and your less good days. You can never be certain that your medication is going to function—you just hope. I try to not allow stress or anxiety to dominate my body. It doesn’t always work. The best results that I’ve come across are complementary therapies like yoga, meditation, massage, and Reiki, as well as reflexology and staying open to new options. I’m a pretty positive person.

What aspects of PD do you find most frustrating and how do you get back to a peaceful mindset? 

The most frustrating aspects of PD are the loss of control and the unpredictable twists and turns that may come at any time. I often feel that I need a backup plan to my backup plan. All I can do is to move forward and be as strong as I can be. Keeping balanced, vigilant and calm is best, if I can do it.

It’s clear that you two work as a team. How did you form such a strong partnership, in your work in the world of PD and in your marriage? How has PD challenged or strengthened your bond?

Karl: We started as good friends and our relationship just grew from there. I would say that we are soul mates rather than just a couple. Sure, we work and live together, but we argue on occasion just like everyone else. I love her completely through and through and love her company. I am so lucky to have found her. She inspired the creation of the blog and books.

Angela is an amazing person — she has a very big and loving heart. She married me post-diagnosis and I am ever so grateful for her love! I love collaborating with her!

I would have to say that the greatest challenges might be a reduction in clear communication. I need to focus more on being clearer with my speech and finishing my thoughts. I have to keep reminding myself that nothing is easy or automatic anymore. Everything I do requires more effort more. Thirty years with PD is a long time.

I think that we stay open and honest with one another and we talk to each other about almost everything. More than anything, we laugh a lot! We continue to learn from each other and enjoy being together.

Angela: I’ve only known Karl with Parkinson’s disease since I met him 4 years after his diagnosis. I love Karl but I do not love Parkinson’s. We are never guaranteed a life without challenges. The most important thing we can do when facing any challenge is to do our best to live as best we can.

From the beginning, open and honest communication has been the key to our relationship. When we fail to communicate well with one another, that’s when we notice tension in our work and home life. Learning to spot the “warning signs” of bad communication helps us to put things back on track.

We work hard to make sure we agree on our goals and consciously check in with each other to assure we are working toward those goals. Not just for our work but also in our marriage. Our commitment to each other has also meant a commitment to a shared purpose: We both agree that our greatest work is to help those living with Parkinson’s disease and other health conditions.

Lily Robb 

What gives each of you a sense of peace or joy? 

Karl: I love going to new places with Angela and teaching people with Parkinson’s about reiki and techniques that can make life better. I love to write and take photos of nature and animals in the wild. I love traveling with Angela and our chocolate lab, Lily.

Angela: I love: 1) The touch of Karl’s hand or his hug. 2) When our dog, Lily does something goofy and makes us laugh. (She’s such a clown!  She steals a sock then turns around and shows us the sock.) 3) The beauty of nature. From the smallest flower to the vast sky – there is so much peace to be gained by just stopping for a moment and being in awe of the nature around us.

 

Share this post on Twitter and help spread the word.


Author, Reiki master, inventor, husband: Guest blogger Karl Robb shares why he’s #MoreThan Parkinson’s disease

Posted June 28th, 2017 by

Inspired by our new #MoreThan video series, patients have been speaking up about what makes them more than their diagnoses. Below, Karl Robb — blogger, author and advocate — shares his #MoreThan story about living with Parkinson’s disease.

Karl Robb is #MoreThan PD

My name is Karl Robb. I have been blogging about Parkinson’s disease for over 10 years on my site, www.ASoftVoice.com. I was diagnosed with Parkinson’s when I was 23 years old, but I showed symptoms as early as age 17. On a rare occasion, I would encounter a resting tremor, often triggered due to stress or fatigue (after a tennis match). It took me at least nine doctors and six years for me to receive the diagnosis and to begin the medical treatment to improve and to deal with the revelation of my condition.

The progression of my symptoms have been slow and gradual. I am currently 50 years old. Most of my 50 years have been spent learning that I had Parkinson’s disease (PD), how to deal with it, learn from it and to try to keep it from advancing as best as I possibly can.

 

Parkinson’s disease may have slowed me a little, but I continue to write, work on photography and drawing, practice and teach Reiki as a Reiki master, perform magic for friends, travel with my wife and dog and meet with support groups across the country about living well with Parkinson’s disease.

 

Since my diagnosis, I have been an active advocate for Parkinson’s issues and causes. I have blogged, lectured, written two books and worked with the former Parkinson’s Action Network (PAN) both as a State Director and a member on the board for six years. I am proud to be a current board member of the Parkinson Voice Project in Richardson, Texas.

My greatest victory, above all else, has been living, learning, loving my life, and exploring the world with my best friend, soul mate, wife, co-author, and care partner, Angela Robb. For the past twenty plus years, she has made this journey enjoyable, quirky, hilarious and so worthwhile. Her selfless commitment to me and the PD community deserves recognition as she worked so diligently under the radar.

Parkinson’s has led me down a path that I would have never expected or chosen for myself. I am thankful that I discovered the practice of Reiki. It has brought me balance, clarity, and peace. Following several years of practicing and learning Reiki, both Angela and I became Reiki masters.

 

As much as Parkinson’s disease has taken from me and altered my life, it has offered me opportunities that I had never considered. Parkinson’s has made my life more challenging in numerous ways but it has also made me more compassionate, sensitive, and aware.

 

I am grateful for the opportunity to share my thoughts and insights with the world and treasure helping others. I am more than Parkinson’s because my illness may be a part of me, but it doesn’t define who I am.

I am more than Parkinson’s.

I am a husband,

I am an author, a blogger, an advocate, and lecturer,

I am an inventor, a photographer, and traveler,

I am an optimist, a Reiki master, a teacher, and an eternal student.

 

More about Karl

Karl Robb is the author of two books about Parkinson’s: A Soft Voice in a Noisy World – A Guide to Dealing and Healing with Parkinson’s Disease and Dealing and Healing with Parkinson’s Disease and Other Health Conditions: A Workbook for Body, Mind & Spirit.

Up for sharing your #MoreThan story on social media? Follow these 3 steps. Remember to use the tags #MoreThan and @PatientsLikeMe.

More than your condition

Share this post on Twitter and help spread the word.