The documentary “Still: A Michael J. Fox Movie” provides an affecting portrait of the beloved actor and advocate, exploring his personal and professional triumphs and travails, particularly his journey with Parkinson’s disease. The film delves into Fox’s life, from his early career and success in iconic 80s hits like “Back to the Future” and “Family Ties,” to his public revelation of his Parkinson’s diagnosis in 1998, a condition he had kept secret for seven years. The documentary includes dramatic reconstructions, interviews with Fox, and glimpses into his daily life with his family and personal trainer. It portrays Fox as a thoroughly likable man, without self-pity, and highlights his natural upbeat style as a survival mechanism. The film has been praised for its well-balanced and thought-provoking approach, offering a new storytelling format that effectively communicates the heart of Fox’s story, filling the audience with both sadness and hope. The documentary is available for streaming on Apple TV+ and has been nominated for seven Emmy Awards, including Outstanding Documentary
By watching “Still: A Michael J. Fox Movie,” you’ll gain a deeper understanding of the challenges faced by those living with Parkinson’s disease and learn about the ongoing efforts to find a cure. The documentary serves as a powerful reminder of the importance of awareness, research, and support in the fight against this debilitating condition.
“Still: A Michael J. Fox Movie” has received several accolades and awards, including the following:
Critics’ Choice Documentary Awards: The film won five prizes at the Critics’ Choice Documentary Awards, including Best Feature and Best Director.
Other Awards: The documentary also won Outstanding Sound Design and has been recognized for achievement in documentaries.
The film’s success at the Critics’ Choice Documentary Awards and its recognition for various aspects of its production highlight its exceptional quality and impact.
What is Michael J Fox Foundation
The Michael J. Fox Foundation for Parkinson’s Research, founded in 2000 by Michael J. Fox, is dedicated to finding a cure for Parkinson’s disease through an aggressively funded research agenda and ensuring the development of improved therapies for people living with the condition. The foundation has become the largest non-profit funder of Parkinson’s disease research in the world, with more than $1 billion of research projects to date.
Works of the Michael J. Fox Foundation:
Research Funding: The foundation focuses on funding research to find a cure for Parkinson’s disease and develop improved therapies for those affected by the condition.
Clinical Studies: In 2010, the foundation launched the first large-scale clinical study on evolution biomarkers of the disease, which has led to ground breaking research and a better understanding of the condition.
Living with Parkinson’s: The foundation’s online source for information on Parkinson’s disease includes guides for the newly diagnosed and caregivers, stories from people living with the disease, and additional resources.
Awareness and Advocacy: The foundation has raised awareness for Parkinson’s disease through various initiatives, such as the Nike raffle in 2016, which raised $6.75 million for the cause.
Collaboration: The Michael J. Fox Foundation collaborates with other organizations and researchers to advance the understanding and treatment of Parkinson’s disease.
The foundation’s efforts have led to significant progress in Parkinson’s research, including the discovery of a biomarker for the disease, which has increased hope for a cure in the future[2]. Michael J. Fox’s personal journey with Parkinson’s disease and his advocacy work through the foundation have raised awareness and funds for research, making a significant impact on the lives of those affected by the condition.
What is Stigma in Parkinson Disease? What are the types of Stigma?
Stigma in Parkinson’s disease, like many other chronic medical conditions, is a significant challenge that individuals with the condition and their families face. Stigma can be broadly categorized into seven types, as defined by Link and Phelan in their influential work on the subject. These seven types can help us understand how Parkinson’s disease is stigmatized and the impact it has on those affected.
Public Stigma: This type of stigma involves the negative beliefs, attitudes, and stereotypes held by society at large towards people with Parkinson’s disease. These attitudes can manifest as fear, misunderstanding, or avoidance. Public stigma can make it difficult for individuals with Parkinson’s disease to socialize or access the support they need.
Self-Stigma: Self-stigma refers to the internalization of the negative stereotypes and beliefs that society holds about Parkinson’s disease. People with Parkinson’s may start to believe these stereotypes and feel ashamed or inferior, which can lead to a decrease in self-esteem and overall well-being.
Structural Stigma: Structural stigma pertains to societal and institutional practices that discriminate against or disadvantage people with Parkinson’s disease. This can manifest in healthcare disparities, limited access to quality care, or difficulties in obtaining insurance coverage for treatment and support services.
Affiliated Stigma: Parkinson’s disease doesn’t just affect the individual diagnosed; it also has an impact on their family and caregivers. Affiliated stigma involves the negative attitudes and discrimination experienced by the family members and friends of someone with Parkinson’s. They may face judgment or feel isolated, which can strain their relationships and well-being.
Courtesy Stigma: Individuals who care for or interact with people living with Parkinson’s disease can also face courtesy stigma. This occurs when people are treated unfairly or with disrespect because of their association with someone who has the condition. Healthcare providers, for instance, may experience this form of stigma.
Label Avoidance: Label avoidance stigma refers to individuals’ reluctance to be identified as having Parkinson’s disease due to the negative consequences they anticipate, such as potential discrimination or social rejection. This can lead to people avoiding diagnosis and treatment, which may result in delayed intervention and poorer outcomes.
Perceived Stigma: Perceived stigma is the fear or anticipation of experiencing stigma based on one’s condition. People with Parkinson’s may anticipate discrimination or negative reactions from others, which can lead to anxiety, depression, or reluctance to seek social support.
Addressing stigma in Parkinson’s disease is crucial to improving the lives of those affected. This can be accomplished through a combination of education, awareness campaigns, and policy changes. Increased public understanding and empathy can help reduce public stigma, while empowering individuals with Parkinson’s to share their stories and experiences can combat self-stigma. Moreover, healthcare systems and institutions should work to reduce structural stigma and ensure equitable access to care.
In conclusion, understanding the seven types of stigma in Parkinson’s disease provides a comprehensive framework for addressing the complex challenges faced by individuals with the condition and their loved ones. By actively working to reduce these stigmas, we can create a more inclusive and supportive environment for those living with Parkinson’s disease.
How to overcome Parkinson Disease Stigma?
Reducing stigma in Parkinson disease is essential to improving the quality of life for individuals affected by the condition. Stigma can have a profound impact on mental health, social relationships, and access to healthcare. Here are some strategies and approaches to reduce stigma in Parkinson’s disease:
A. Education and Awareness:
Public education campaigns: Conduct public awareness campaigns to provide accurate information about Parkinson’s disease. These campaigns can dispel myths and stereotypes, helping to increase understanding and empathy.
Schools and communities: Introduce educational programs about Parkinson’s disease in schools and local communities. Promoting understanding from a young age can foster a more accepting society.
Media and Representation:
Encourage accurate portrayal: Work with media outlets to ensure that depictions of Parkinson’s in movies, television, and news are accurate and respectful. Avoid sensationalizing the condition or using it for comedic effect.
Highlight positive stories: Share stories of individuals with Parkinson’s who have achieved remarkable accomplishments, demonstrating that the condition doesn’t define their entire life.
B. Open Dialogue:
Support groups: Create and promote support groups where people with Parkinson’s, their caregivers, and family members can share their experiences, challenges, and triumphs. Open dialogue can reduce self-stigma and affiliated stigma. Personal testimonials: Encourage individuals with Parkinson’s to share their personal stories, either in person or through written or online platforms. Personal narratives can be powerful tools for challenging stereotypes.
Healthcare and Policy:
Equal access to care: Advocate for policies that ensure equitable access to healthcare services, including specialist care, therapies, and medications. Reducing structural stigma in the healthcare system is crucial.
Training for healthcare professionals: Offer training to healthcare providers to help them understand the physical and emotional challenges faced by people with Parkinson’s. This can improve patient-provider relationships and reduce courtesy stigma.
C. Language Matters:
Use person-first language: Encourage the use of person-first language, where the person is emphasized over the condition. Instead of saying “a Parkinson’s patient,” say “a person living with Parkinson’s.” Avoid derogatory terms: Educate people about the importance of avoiding derogatory or insensitive language that perpetuates stereotypes.
D. Empower Advocacy:
Support advocacy organizations: Join or support organizations that advocate for the rights and well-being of people with Parkinson’s. These organizations often have the resources and platforms to combat stigma effectively.
Political engagement: Engage with policymakers to promote legislation that protects the rights and dignity of individuals living with Parkinson’s disease.
Mental Health Support:
Address the emotional impact: Acknowledge the emotional and psychological challenges associated with Parkinson’s and provide access to mental health support and resources. This can help individuals cope with self-stigma and perceived stigma.
E. Promote Inclusivity:
Encourage social inclusion: Promote social activities and events that are accessible and welcoming to people with Parkinson’s. Inclusive environments help reduce perceived stigma and encourage participation.
Celebrate Achievements:
Recognize achievements: Highlight the accomplishments of individuals living with Parkinson’s, showcasing their resilience and contributions to society.
Reducing stigma in Parkinson’s disease is an ongoing process that involves the collective efforts of individuals, healthcare providers, policymakers, and communities. By fostering understanding and empathy, dispelling misconceptions, and promoting inclusivity, we can create a more accepting and supportive environment for those living with Parkinson’s disease and work towards reducing the stigma in Parkinson disease.
Do you know what is “Movement Disorders”? Or Do you know what are the disorders treated by an “Movement Disorders Specialists”?. Some of us have heard about the name “Parkinson’s Disease”, but do you know who named this disorder as “Parkinson’s Disease”? To answer these questions and create awareness about Movement Disorders, the “International Parkinson’s and Movement Disorders Society” has initiated November 29th as “World Movement Disorders Day”. This year (2022) would be first world Movement Disorder’s Day and would be a platform to create awareness about Movement Disorders Globally.
Movement Disorders are a group of brain disorders, which leads to either abnormally excess or slowness of body movements and not related to any other body system involvement. For example unable to move leg due to a ‘Fracture’ is NOT an Movement Disorders, however, unable to easily move the same leg due to dysfunction in brain (more specifically basal ganglia) leading to “Parkinson’s Disease” is an “Movement Disorder”. The movement disorders are specific set of diseases which occur due to dysfunction in certain deep brain structures, called as Basal Ganglia and its various connections. The common symptoms of dysfunction of this part of brain causes – generalized slowness (Parkinsonism), shaking of body parts (tremors), imbalance sensation (ataxia /drunkard walking), tendency to fall, abnormal posturing of body parts (dystonia), unwanted excessive movements of different body parts (chorea, ballism,) etc. These symptoms can occur individually or can occur in various combinations, based upon which different disease names are suggested like, Parkinson’s Disease, Huntington’s Disease, Progressive Supranuclear Palsy (PSP), Wilson’s disease, Spinocerebellar ataxia etc. These disorders can occur due to various underlying causes varying from infections of brain, body metabolic changes (like high or low blood sugars), medication related side effects, allergic disease of brain (autoimmune diseases), tumors of the brain, stroke like events, genetic abnormalities and due to normal ageing process. The underlying cause decides the treatment and outcome of these treatment. For example, a person developing symptoms of Parkinsonism (Slowness, stiffness, tremors, walking changes) due to metabolic / acute drug related reaction can be completely cured with treating the metabolic changes or stopping the offending medication. However, development of Parkinsonism secondary to ageing / genetic process – Parkinson’s disease can be well managed with treatment similar to blood pressure and diabetes. Given that these disorders are due to changes in the brain, these disorders are managed by Neurologist who is further specialized in this field, and they are called as “Movement Disorders Specialists”.
Jean-Martin Charcot
The International Parkinson and Movement Disorders Society has chosen 29th November to be as World Movement Disorders Day to commemorate with birth anniversary of Prof. Jean-Martin Charcot (1825 – 1893). Prof. Jean-Martin Charcot was French Neurologist, born on 29th November 1825 in Paris. He has been referred as the ‘Father of French Neurology and one of the World’s Pioneers of Neurology’. He established Neurology clinic at the famous Salpetriere hospital in Paris, which was first of its kind then. His contributions are tremendous across the field of Medicine but much more to Neurology. His interests included hysteria and hypnotism. Dr. Charcot has various diseases / conditions / anatomical parts named after him (e.g: Charcot’s Artery, Charcot’s Joint, Charcot -Marie-Tooth Disease, Charcot’s Triad of Multiple Sclerosis etc). James Parkinson’s essay – “The Shaking Palsy”, which was written in 1817, was well recognized during the tenure of Charcot and was being known by the name of “Paralysis agitans”. Charcot lauded James Parkinson’s extensive descriptions and suggested that the disorder be named after him – “Parkinson’ Disease”. Hence, the term “Parkinson’s disease” came to existence in in later part of 19th century, due to Charcot’s recognition (la maladie de Parkinson). His extra ordinary contributions to field of Neurology and Movement disorders, has made International Parkinson and Movement Disorders Society to initiate World Movement Disorders Day to create awareness for all the movement disorders, albeit some of the major movement disorders have their own awareness days (e.g: April 11th – World Parkinson’s Disease Awareness day).
The Field of Movement disorders has been growing in India since the 2000’s and India has now its own movement disorders specialist’s society called as ‘Movement Disorders Society of India’, started in 2014. The number of movement disorders cases are on steady increase in India and the World Health Organization, has predicted a tremendous increase in Parkinson’s disease and other ageing disorders across India over the next decades. There is clear lack of systematic epidemiological studies to understand the prevalence of various movement disorders in India. Dr. Prashanth LK, Consultant Parkinson’s disease and Movement Disorders Specialist from Bangalore has worked with two other specialty Movement Disorders Clinic located in Mumbai and Kolkata to discuss the burden of movement disorders in India. In these specialized private movement disorders clinics, it has been noted that Parkinsonism disorders contributed to almost 2/3rd of the various diseases seen, which is followed by dystonic disorders (15%), and tremors (8%). The group also comment that among the Parkinsonian disorders, a trend of increase in atypical parkinsonism disorders are being on the raise and contributed to about 22% of the cohort. Given the variability of these disorders, and India needs to have its own research which can address these concerns. Some of the movement disorders are almost exclusive to India like the Spinocerebellar ataxia type-12 (also known as Aggarwal disease, as it is predominantly limited to this community) or some of the diseases are predominantly more here (like the Wilson’s disease, much more common in southern India due to increased consanguinity). To address these things awareness and support for research is required from all the stake holders. The Movement Disorders Specialists of India have formed consortium to address these specific issues and are trying to collaborate with other basic sciences fields to get in-house answers for problems which are exclusive for Indian community – Parkinson Research Alliance of India. In this context major pan India collaborative studies are going on diseases like Young Onset Parkinson’s Disease, Progressive Supranuclear Palsy with collaboration from Indian and International working groups. On the occasion of this first World Movement Disorders Awareness Day, lets spread the awareness of various movement disorders in India and need to encourage co-operative works with clinicians, scientists, philanthropists and patients to find answers to many of these rare and well known disorders.
Table : List of Few Common Movement Disorders and there understanding in simple English:
Excess abnormal involuntary muscle contraction leading to posturing of the affected body parts (like neck = cervical dystonia, writing = writers cramp, jaw = jaw dystonia)
Someone have abnormally excessive, body movements, which are variable in intensity and duration. These people may also have behavioral / memory issues.
Abnormal sensation of legs, especially during late evening / night, which improves/ reduced by walking around.
Tic
Abnormal repetitive body movements, which are due to satisfy once urge to do it (e.g, shoulder shrugging, jerking movements of head while speaking etc)
Huntington Disease Awareness day is celebrated on 15th May every year. It is a genetic disorder that has no cure. It causes a progressive breakdown of nerve cells in the brain leading to the deterioration of a person’s physical, mental, and emotional abilities.
How is Huntington’s disease awareness done?
Blue, purple lights on municipal headquarters, Mumbai, India
During May, buildings, monuments, and statues are usually lit up in blue and purple, blue to raise awareness of Huntington’s disease, and purple for juvenile Huntington’s. Patients, caregivers, families, and friends nationwide are organizing fundraisers, planting virtual flowers, lighting landmarks blue and purple, taking hikes, flooding social media, and sharing stories about H.D. It is all intended to heighten awareness among the general public and draw the attention of policymakers, public authorities, scientists, health professionals, and industry representatives.
What are the symptoms of Huntington’s Disease?
The symptoms of HD can vary and your doctor can help you to understand or either direct to specialized HD clinics
Huntington’s disease typically starts between ages 30 and 50, but it can begin when you are younger.
HD affects your: • Movement • Behavior • Thinking, understanding, learning, remembering • Personality
The most common symptom is movement you cannot control, called chorea. Chorea causes dance-like movements. Other movement problems can include trouble with speech and walking.
You may also experience these symptoms: • Memory loss, poor concentration, trouble doing tasks, impulse control problems • Depression and lack of interest • Sleep changes • Sexual problems • Difficulty swallowing • Falling
In the early years, some slight mental, emotional, and behavioral changes may come before the more obvious physical symptoms.
What is the cure for Huntington’s Disease?
Currently there is no treatment that can slow down or reverse the disease. HD is not curable now, but there are medications that can reduce some symptoms. These medications may help improve movement, depression, and behaviors. Ask your neurologist about your medication options
Every year July 22nd is commemorated as WORLD BRAIN DAY. Annually one disorder will be highlighted to increase the awareness of the disorder. World Brain Day 2020 is dedicated to raising awareness for Parkinson’s Disease, a neurodegenerative brain disorder affecting more than 70 lakh people of all ages worldwide. This year, World Federation of Neurology and International Parkinson and Movement Disorder Society have joined together to end #parkinsons.
In this context, here in India, we are doing an active Parkinson’s Disease awareness campaign in the form of #PDchallenge. The challenge is open to all patients, caregivers, friends, health care workers and everyone across. The primary goal is to create awareness about Parkinson’s Disease. Please do a brief video about your active movements or agility and challenge your family members, friends, colleagues to show their agility. Come lets create awareness about Parkinson’s disease and remove the myths about it. Let’s create awareness by challenging our friends and relatives
10 things about Parkinson’s Disease for this World Brain Day:
Parkinson’s Disease is neurodegenerative disease affecting the brain
More than 70 Lakh people of all age groups affected by Parkinson’s Disease Worldwide.
Parkinson’s Disease classically causes Slowness, Stiffness, Tremors and Balance problems.
Mood changes, Anxiety, Depression, reduced smelling ability, Sleep disturbances, Urinary issues, Constipation, can also be affected.
The Scare of the name “PARKINSON’S DISEASE”, make many people to loose hope in life.
Parkinson’s disease is treatable
People affected with Parkinson’s disease can lead a near normal quality of life.
Good treatment options are available including mediations, injections and surgeries.
Active life style and Exercises form the most important part of management of Parkinson’s Disease.
Come on the World Brain Day, “Lets Shake the Parkinson’s”
Destination Unknown – My Journey with Parkinson’s, is an autobiography of Mr. Rajeev K Gupta, who is diagnosed with Young Onset Parkinson’s Disease. The book fills a long overdue void about personal experiences about Parkinson’s Disease, especially from Indian Context. It goes through the various phases from, ‘Overcoming the Shock’ attached with diagnosis of Parkinson’s disease in a young active professional life. The story leads on to explain the “Million Dollar Decision” on how and when to reveal the diagnosis to the family members and on professional front. It also gives insights about how to cope with the diagnosis, adapt and overcome, to win over this ‘Mental Game’. Mr. Gupta, further goes into the depth of various treatments he received, their benefits / limitations. Later, he continues on his decision on ‘Deep Brain Stimulation’ surgery and his whole experience from the point of considering it to the post-surgery outcomes. The book also gives a Q&A section, which will be helpful for all Parkinson’s disease patients, to understand about Parkinson’s disease and its treatment. Overall, a must read for every Young Onset Parkinson’s Disease Patients and their families. The Book is currently available on various online sellers including Amazon, Kobo, Google Play books and on publishers site (Notion Press).
Huntington’s disease patients and families require special attention and care. Month of ‘May’ is #HDawareness month. There are various activities going on world wide during this #Lockdown time to create more awareness about #Huntingtonsdisease.
Huntington disease is named after George Huntington (April 9, 1850 – March 3, 1916) was an American physician from Long Island, New York who contributed the clinical description of the disease. Dr. Huntington wrote his paper “On Chorea”when he was 22 years old, and was first published in the Medical and Surgical Reporter of Philadelphia on April 13, 1872.
Huntington’s disease usually causes movement, cognitive and psychiatric disturbances with a wide spectrum of signs and symptoms. Which symptoms appear first varies greatly among affected people. During the course of the disease, some disorders appear to be more dominant or have a greater effect on functional ability.
The movement disorders associated with Huntington’s disease can include both involuntary movement problems and impairments in voluntary movements, such as:
Involuntary jerking or writhing movements (chorea)
Muscle problems, such as rigidity or muscle contracture (dystonia)
Slow or abnormal eye movements
Impaired gait, posture and balance
Difficulty with the physical production of speech or swallowing
Impairments in voluntary movements — rather than the involuntary movements — may have a greater impact on a person’s ability to work, perform daily activities, communicate and remain independent.
Cognitive Symptoms (Memory related)
Cognitive impairments often associated with Huntington’s disease include:
Difficulty organizing, prioritizing or focusing on tasks
Lack of flexibility or the tendency to get stuck on a thought, behavior or action (perseveration)
Lack of impulse control that can result in outbursts, acting without thinking and sexual promiscuity
Lack of awareness of one’s own behaviors and abilities
Slowness in processing thoughts or ”finding” words
Difficulty in learning new information
Behavioral Symptoms:
The most common psychiatric disorder associated with Huntington’s disease is depression. This isn’t simply a reaction to receiving a diagnosis of Huntington’s disease. Instead, depression appears to occur because of injury to the brain and subsequent changes in brain function. Signs and symptoms may include:
Feelings of irritability, sadness or apathy
Social withdrawal
Insomnia
Fatigue and loss of energy
Frequent thoughts of death, dying or suicide
Other common psychiatric disorders include:
Obsessive-compulsive disorder — a condition marked by recurrent, intrusive thoughts and repetitive behaviors
Mania, which can cause elevated mood, overactivity, impulsive behavior and inflated self-esteem
Bipolar disorder — a condition with alternating episodes of depression and mania
In addition to the above symptoms, weight loss is common in people with Huntington’s disease, especially as the disease progresses.
Symptoms of juvenile Huntington’s disease
The start and progression of Huntington’s disease in younger people may be slightly different from that in adults. Problems that often present themselves early in the course of the disease include:
Behavioral changes
Loss of previously learned academic or physical skills
Rapid, significant drop in overall school performance
Behavioral problems
Physical changes
Contracted and rigid muscles that affect gait (especially in young children)
Changes in fine motor skills that might be noticeable in skills such as handwriting
