MJFF Offering Comprehensive Guide for Newly Diagnosed Patients

The Michael J. Fox Foundation (MJFF) is offering a guide to help people newly diagnosed with Parkinson’s navigate the early days of their disease, and better prepare for the future.

Called “If I Knew Then What I Know Now: The Michael J. Fox Foundation Patient Council’s Guide for People Newly Diagnosed with Parkinson’s,” the resource is meant to provide encouragement, insights, and practical strategies to those living with this disease.

This year alone, about 60,000 people in the U.S. are expected to be diagnosed with Parkinson’s. Compounding matters, many of those diagnoses will come during a global pandemic.

The free 32-page guide was written by five members of MJFF’s Patient Council, which represents the patient perspective and works to educate the community.

Rachel Dolhun, MD, MJFF’s vice president of medical communications and a movement disorder specialist, also contributes tips for managing life with Parkinson’s. Among topics covered are disease information and specialists, building a support system, diet and exercise, and research participation.

“A Parkinson’s diagnosis brings many questions and concerns and a series of inevitable hurdles,” Soania Mathur, MD, guide contributor and Patient Council co-chair, said in a press release. “We may not have a choice in our diagnosis, but how we face those challenges is ours to determine.”

The guide comprises short, mostly first-person articles categorized into sections. A section called “I’ve Got What?” covers the diagnostic process, second opinions, the Parkinson’s journey, inheritance, and causes of Parkinson’s disease.

Another section, “Managing Emotions in the First Days,” has essays about disease acceptance, the relationship between symptoms and stress, and reasons for hope.

“Coming to terms with my Parkinson’s was not something that happened overnight,” one contributor  wrote. “I had to tell myself many times that my diagnosis was here, it was happening now, and it was unavoidable. And that I needed to start planning for what would come next.”

Added Michael J. Fox, the actor who founded MJFF after being diagnosed with Parkinson’s in 1991 at age 29: “My first thought was, ‘What the hell happened to me? What am I going to do?’ That took time to work through, but I found out that if I could accept what my situation was, and be honest about it, I could move forward.

“And my happiness grows in direct proportion to my acceptance,” Fox said.

In “Taking Control of Parkinson’s Disease,” authors discuss the best sources for advice, symptom management, early medication and treatment, caregiving, and making the most of doctor appointments. There is also an article about clinical trial participation, and a column by Bill Rasmussen, a Patient Council member and founder of the U.S. sports channel ESPN, who was diagnosed in 2014.

The guide also includes a question-and-answer section, titled “How and When Will I Know I’m Ready to Share My Diagnosis?” Another section addresses early onset PD, generally defined as a Parkinson’s diagnosis before age 50.

The publication also provides a listing of MJFF resources, covering many aspects of life with the neurodegenerative disorder.