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MJFF Offering Comprehensive Guide for Newly Diagnosed Patients

MJFF guide

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.

The post MJFF Offering Comprehensive Guide for Newly Diagnosed Patients appeared first on Parkinson’s News Today.

Fox Foundation Offers Guide to Help with Parkinson’s Cognitive Symptoms

cognition and Parkinson's

The Michael J. Fox Foundation (MJFF) is offering a new guide to help people better understand Parkinson’s cognitive symptoms and ways of dealing with them.

The 33-page guide, “Navigating Cognitive Changes in Parkinson’s Disease,” was developed by the MJFF’s Patient Council — which includes caregivers, social workers, and physicians specialized in movement disorders and cognitive function — working together with Parkinson’s patients, their families, and their clinicians.

An hourlong webinar discussing topics addressed in the guide and including a question period is set for Sept. 19 at noon ET. Those interested can register here.

“The goal of this guide is to encourage people with Parkinson’s and their loved ones to learn more about cognitive changes and to take action — whether that’s opening a discussion to lessen fear and improve care or practicing healthy habits to boost brain health,” Rachel Dolhun, the guide’s author, and MJFF’s vice president of medical communications and a movement disorder specialist, said in a press release.

While a diagnosis of Parkinson’s disease is based on characteristic motor symptoms like tremor, slowness of movement, and rigidity, cognitive impairment is a significant non-motor manifestation of the disease.

Among the 6 million people estimated to be living with Parkinson’s worldwide, 40% are likely to develop dementia and 25% may develop milder cognitive changes. “These symptoms are, unfortunately, also some of the least talked about,” Dolhun wrote.

The guide explores different aspects of cognitive function and their roles in daily life, such as executive function, memory, language, attention, and visual-spatial skills. It provides several strategies to help patients and their families keep track of possible cognitive changes, which can be expressed differently in each patient.

It also encourages patients to practice activities known to be good for the body, and thought to also boost brain health. These include exercising regularly, eating a healthy and balanced diet, training the brain with “mind games” or crosswords, getting enough sleep, reducing stress, being socially active, and getting involved with the Parkinson’s or local community.

A large part of the guide is dedicated to dementia, one of the most concerning potential symptoms of Parkinson’s for many patients and their families.

It starts by clarifying what defines dementia, the differences between three causes of dementia — Alzheimer’s disease, Parkinson’s disease dementia (PDD) and dementia with Lewy bodies (DLB) — and current treatment options for this condition.

PDD and DLB share the presence of abnormal protein clumps in the brain known as Lewy bodies, as well as several symptoms. Currently, DLB diagnosis is distinguished from PDD if dementia occurs before or during the first year of motor symptoms related to Parkinson’s.

The guide also provides strategies to work through Parkinson’s cognitive changes and dementia, including: finding a physician with expertise on cognitive changes, being patient and flexible with oneself and one’s difficulties, communicating in an open and honest way, learning as much as one can about the disease, asking for and accepting help from others, joining supportive groups, and participating in clinical research.

Another section offers tips to help caregivers and relatives manage a patient’s hallucinations and delusions, which can be the most difficult manifestation of dementia.

Finally, the guide shares some of the latest information in ongoing research into disease-related dementia.

“The Patient Council welcomed the opportunity to provide input on this new guide in order to offer families the knowledge and resources to talk about a sensitive topic that’s sometimes inadequately addressed at home or even in the doctor’s office,” said Dave Iverson, a founding member of MJFF’s Patient Council and a broadcast journalist.

“More resources, research, and collaboration can help us address the complex issue of cognitive decline and support people who experience it,” said Todd Sherer, MJFF’s CEO.

The free guide, and a complementary video, are available for download here. The Sept. 19 webinar features Dolhun and other disease experts, and members of the Parkinson’s community.

The post Fox Foundation Offers Guide to Help with Parkinson’s Cognitive Symptoms appeared first on Parkinson’s News Today.