It’s World Parkinson’s Day

April is Parkinson’s Awareness Month

I am 53 years old and was diagnosed with Parkinson’s disease at the age of 23. I have made it my mission to provide Parkinson’s awareness through my 12 year old award winning blog, www.asoftvoice.com by sharing lessons and information related to this illness.

Thirty plus years with Parkinson’s has taught me a great deal about living well with this chronic condition.

 Here are 10 things I want to share with you about Parkinson’s disease:

  1. No two people with Parkinson’s are identical. Every patient is unique and may require a personalized treatment plan.
  2. Often, the first symptoms of Parkinson’s can be a loss of sense of smell, constipation, or wrist or shoulder discomfort.
  3. Tremor, mobility issues, and facial masking are probably the symptoms that are most identified with Parkinson’s. It is believed that symptoms may begin 10 or more years before visible symptoms might be recognized.
  4. Some people with Parkinson’s disease may show no external symptoms but can have difficulty with memory and other cognitive issues, digestion, pain, eye problems, or depression.
  5. A positive perspective, a good attitude, staying flexible, and a sense of humor can help to deal with stress and anxiety.
  6. Embracing exercise (Rock Steady Boxing), speech therapy (SPEAK OUT!), yoga, reflexology, reiki, meditation, massage, can help to reduce anxiety and stress to calm both mind and body. Don’t stop looking for a combination of therapies that work best for you!
  7. Parkinson’s disease is not an old person’s disease. I have had Parkinson’s for several years prior to my diagnosis and that was over 30 years ago.
  8. Dyskinesia (rapid, uncontrolled movement) is not due to Parkinson’s disease itself, but it is a side-effect of the medications.
  9. Protein can reduce the efficacy of some Parkinson’s medications. Consult your doctor for more information.
  10. Find a neurologist who is a Movement Disorder Specialist (MDS). They have specialized training in Parkinson’s disease.

I’ve found that by staying active and taking a proactive approach to my Parkinson’s, I’ve been able to live well, pursue my writing career and published two books, lecture, travel extensively, and continue my passion for photography. A diagnosis of Parkinson’s has not been the end for me but given me a new purpose and a new direction for my life.

About Karl Robb

Karl Robb has had Parkinson’s disease (PD) for over thirty years. With symptoms since he was seventeen years old, Karl was diagnosed at the age of twenty-three. Now fifty-one, he is a Parkinson’s disease advocate, an entrepreneur, an inventor, an author of two books (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, and Spirit) with his wife and care partner, Angela Robb. He has blogged for ten years on his website, ASoftVoice.com. He is a Community Team Member to ParkinsonsDisease.net and is a contributor to PatientsLikeMe.com. His blog, ASoftVoice.com, has been recognized four years in a row by Healthline.com as one of The Best Parkinson’s Blogs of 2018, 2017, 2016, and 2015! Healthline.com also listed the book A Soft Voice in a Noisy World in their list of Best Parkinson’s Disease Books of 2017! FeedSpot.com has recognized ASoftVoice.com for 2018 and 2017 as a Top 50 Parkinson’s Disease blog. Karl was a blogger for the 2016 World Parkinson Congress in Portland, Oregon. He is a frequent speaker on Parkinson’s disease issues as well as an experienced advocate for Parkinson’s issues throughout the United States. He is also an advisor and consultant on Parkinson’s disease. Karl is a board member of both the Parkinson Voice Project and Parkinson Social Network based in Virginia. He was an active board member (6 years) and an advocate (18 years) with the Parkinson’s Action Network (PAN). In his free time, he is a photographer, constant writer, longtime magician, and a practicing Reiki Jin Kei Do master. Karl received a Bachelor of Arts degree in English from the University of North Carolina at Chapel Hill. He has been featured by The New York Post, BBC Radio, CBS News, National Public Broadcasting (NPR), in The New Republic magazine and NHK World Television, as well as several Washington, D.C., television stations. You may reach Karl via email at asoftvoice@gmail.com, on Facebook, or contact him via Twitter @asoftvoicepd. I’m available for speaking engagements to share my experience living with Parkinson’s disease. Please contact me at asoftvoice@gmail.com if you are interested in having me speak to your group, conference/symposium, or would like me to write an article for your newsletter or blog. I am not a medical professional and this information is my personal view. I am just sharing my medical journey with you, the reader. I encourage you to seek all avenues that can benefit your condition.

Posted on April 11, 2020, in A Soft Voice book, Dealing and Healing Workbook, Education, Education & Support, exercise, Health, mind body spirit, Parkinson's Disease, Philosophy, self care, Wellness and tagged , , , , , , , , , , , , , , , , , , , , , , , , . Bookmark the permalink. Leave a comment.

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