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

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Highlighting the many faces of PTSD

Posted June 27th, 2017 by

The many faces of PTSD

 

PTSD doesn’t have just one face, it has millions.  During any given year, there are about eight million adults who have PTSD, which is why for PTSD Awareness Day this year, we’re sharing just some of those many faces and the stories behind them. From grandmothers to soldiers, both women and men, the PatientsLikeMe PTSD community is made up of people from all backgrounds – connecting through their shared experiences. Read their stories and log in to connect with others in the forum.

 

Survivinglife: “I felt like a million pounds had been lifted from my shoulders. The course of my life finally made sense. My lack of being able to trust people, my lack of friendships, the ‘moodiness,’ that are really reactions to triggers that I know, and some that I am continuing to figure out. Why I always felt different, like I didn’t fit in, why I still feel that way today.” Read More

 

 

DSwartz: “Always know that you are NOT ALONE… PTSD comes from trying to be too strong for too long or on your own, with little or no support. Talking about your fears and insecurities with someone who truly listens and does not judge you makes a huge difference. You can learn to accept your fears, work through them and enjoy life again.” Read More

 

 

ChrisBC: “The most challenging aspect of my diagnosis is being in touch with my feelings. I would tend to block out my feelings and hide them deep inside and put on a false persona because I was scared. I still struggle with this today and have so much support helping me to make it through this.” Read More

 

 

SuperChick: “I still experience triggers, but am able to process the emotions using cognitive behavioral therapy skills and journaling. When I am triggered, I make sure I take care of myself through prayer, talking with my husband and therapist, and doing things that help me relax, ground me, and fully engage my mind, like playing my flute and piano.” Read More

 

 

Jeffperry1134: “My PTSD was early onset after returning from Desert Storm… At the time I was a 19-year-old alone in Germany away from my family struggling with this mental illness. My supervisors were able to help me hide my problems well and it was not discovered at that time. I feared being singled out for having these problems.” Read More

 

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