33 posts tagged “patient advocacy”

#MoreThan multiple sclerosis: Guest blogger Cathy Chester’s journey as a writer, mom, advocate and optimist

Posted July 6th, 2017 by

As part of our ongoing #MoreThan series, we’re continuing to highlight patients’ stories of all the ways they’re more than their diagnoses. Here, Cathy Chester – blogger, wife, mother and advocate – shares her diagnosis story and how she’s much more than MS.

#MoreThan MS

When I was in my 20s I was thrilled to work for a large publishing house in Manhattan. It was an exciting dream job but I was competing against other recent college graduates who were all jockeying for promotions. To meet the challenge, I needed to be quick on my feet and look polished. I arrived early each morning wearing a beautifully tailored business suit and high heels. I could taste that promotion.

But fate stepped in when I least expected it. My 2-inch heels gradually became unbearable to walk in and I started to struggle to maintain my balance. I finally lost the battle one day when my right shoe slipped off my foot without notice. The growing numbness in my legs and feet masked the loss of my shoe. It was time to see a doctor.

After a CAT Scan, spinal tap and MRI I was diagnosed with Multiple Sclerosis.

I am more than my diagnosis.

When I told my boyfriend I had an incurable, unpredictable disease with no medications to curb my symptoms I held my breath, waiting for him to say, “Goodbye. See you around. Have a nice life.” Instead I heard, “We’ll get through this together. A life without you is no life at all.” We were married two years later.

I am a wife and a fighter.

Four years passed when we learned the happy news that I was pregnant. After two devastating miscarriages, we were overjoyed. At the time, I was driving with hand controls and walked with a cane. I was anxious about being a good mother despite constant fatigue, numbness and weakness. Then something extraordinary happened. As my baby grew inside my belly my hormones gave me a second chance. I no longer needed the cane and hand controls, I felt boosts of energy and the numbness and weakness temporarily disappeared. When our healthy baby was born, I called him my sweet angel.

I am a loving mother to a beautiful, happy son.

My relapsing-remitting MS reared its ugly head in those early days of motherhood. I learned how to manage my daily symptoms of the returning fatigue and numbness. I’d nap when my son napped and prioritized what I needed to do over what I wanted to. When walking became difficult I took intravenous prednisone (steroids) whose side effects were troublesome.

Eventually disease-modifying medications were approved and after trying the first two, number three was the charm. If you were diagnosed in the Dark Ages of MS, prior to medications, having options was Nirvana. As the old jingle said, better living through chemistry.

I am grateful.

Years passed and our son was preparing for college. I began questioning my future, wondering how to create a new career for myself. I dug deep to find what my passions were but it didn’t take long to find. I always loved to write and to help people manage their MS journey. I decided to go back to school to earn a certificate in patient advocacy. Then I married my newly acquired skills to my skills as a writer. That’s when I created my blog, AnEmpoweredSpirit.com, as a resource for patients to read and learn from my story, and to offer the latest news and information about MS.

I am a patient advocate. I am a writer. I love paying it forward.

As my blog grew and became recognized as an award-winning resource I began receiving offers to write for MS and health-related websites. I now contribute to three, moderate discussions for one and am the official blogger for a large international consortium whose mission is to improve the lives of those with MS.

I am a blogger, contributor and moderator. I am an active listener.

My professional life impacts me in countless positive ways, something I never imagined. My readers touch my heart when they share their joys and sorrows. I am deeply honored to hear their stories. Going from a blank screen to a message that touches others is magical. Helping the community makes all my efforts worthwhile.

I am grateful for this shared journey.

I am deeply humbled by loyal followers and eternally grateful for the love and support I receive from family, friends, colleagues and the people I’ve come to know both on and offline. I look to the future to find more ways to actively use my voice to continue making a difference in people’s lives.

 

I am more than my MS.

I am a wife, mother, daughter, sister and friend.

I am a writer, speaker, moderator and advocate.

I advocate for animal rights and love our two beautiful cats.

I am obsessed with classic Hollywood films, the arts and culture.

I love music and swoon when I hear Frank Sinatra or Ella Fitzgerald.

I am a lover of books.

I feel at one with nature because it brings me inner peace and serenity.  

I love to hike and knit.

I love gentle yoga and practicing gratitude and mindfulness.

I am an optimist who always looks for silver linings.

 

 

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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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