Michael J. Fox and Robin Williams are two famous actors who were diagnosed with Parkinson’s disease (PD), a terrible neurological (nerve cell) disorder that strikes the lives of millions. Typically, the condition is seen in people over the age of 50, although this is not always the case. Fox was diagnosed at the age of 29 (which is extremely rare). Williams was diagnosed at the age of 50. The impact of the disease on the lives of these actors was affected by the diagnosis and support that they received in the years that followed.
Early Identification Is Critical
While there is currently no cure for PD, early diagnosis and proactive management can significantly improve a person’s quality of life and potentially slow down the progression of symptoms. This intervention and treatment can help individuals manage their symptoms more effectively and delay the onset of more severe motor and non-motor complications. With early diagnosis, patients can live successfully with the condition.
Following his early diagnosis, Fox began to take steps to manage it. He often says that he is leading a good life with the disease. This year Apple TV released a documentary about Fox’s experience with the disease over the past 32 years, “Still”. When treating his condition, Fox says, “I got to figure out where I am, how I feel. What else do I have to do that day? How much do I have to do? How am I going to try to take my meds to get through that? It’s just a constant planning and negotiating and sorting out.”https://www.pbs.org/newshour/show/michael-j-fox-tells-story-of-his-career-and-living-with-parkinsons-in-new-documentary
Less is known about how Williams responded to his diagnosis with the condition. It is uncertain when he first suspected that he had PD. He was diagnosed with the disease just before his death in 2014. In an interview shortly after his death, his wife said, “It is our hope in the wake of Robin’s tragic passing, that others will find the strength to seek the care and support they need to treat whatever battles they are facing so they may feel less afraid.” We need to help caregivers as they work with patients to fight this battle.
The goal must be to encourage people with symptoms to approach physicians early and to provide support to the medical community so that they can diagnosis the condition early and begin treatment. https://www.jacksonville.com/story/entertainment/local/2014/08/14/report-robin-williams-early-stages-parkinsons-disease/15790387007/
Building Awareness of PD
Often, PD identification begins with the patient. The National Library of Medicine reports that the disease can often go unidentified for up to 10 years before diagnosis and treatment.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6053699/ Steps must be taken to accelerate both identification and treatment. Here are some of the barriers to that outcome:
- Patients must be alerted sooner about potential symptoms that could be early signs of the condition. Stigmas about the condition pose a serious issue. Negative stereotypes, misconceptions, or attitudes that society holds toward this group can lead to misunderstanding, discrimination, and social isolation. As with other conditions, we must tear down the walls on these stigmas. https://aim-fire.com/2022/06/05/alleviating-patient-stigma/
- Once patients begin a discussion with healthcare professionals, it can be difficult to properly diagnose PD, in part because the symptoms can be similar to other conditions. Biomarkers can help differentiate between Parkinson’s disease and other similar conditions, leading to more accurate diagnosis. Greater education is needed within the medical community to spot and treat the condition. Patient groups like Fox’s foundation are working in cooperation with the medical community to identify these markers.
- Because the disease it progressive, symptoms will evolve and change over time. This makes the condition even more challenging to identify as initial symptoms may be mild and easily mistaken for the normal signs of aging. Again this is where patient education can play a very important role. Patients should be encouraged to ask questions on symptoms that may not eventually relate to PD.
- Accurate diagnosis often requires the expertise of neurologists or movement disorder specialists. However, access to these specialized healthcare providers may be limited in some regions, leading to potential delays in diagnosis and treatment. We must make it easier for patients to get treatment for the condition. Once again, patient education plays a huge part in this process. Patients in more remove areas should be encouraged to be active in their outreach to both primary care doctors and specialists.
How Patient Communication Programs Can Help
Patient communication campaigns reach out to patients who may be afraid, isolated and without support. They utilize various platforms, including social media, public service announcements, education from Pharma companies, and community events, to reach a broader audience.https://aim-fire.com/2022/12/09/the-importance-of-patient-education-programs/
The internet is becoming a vital source of information for patients that are experiencing symptoms that they do not understand. A reliable internet source for information about Parkinson’s disease is the Michael J. Fox Foundation for Parkinson’s Research website. The American Parkinson Disease Association (APDA): APDA offers a wide range of resources, including support groups, educational materials, and fundraising events. They aim to provide information and support for both patients and caregivers. Website: https://www.apdaparkinson.org/
Education programs by companies like Supernus (https://www.xadago.com/) and Acorda (https://www.acorda.com/many-faces/what-is-parkinsons-disease) are excellent sources of information for PD patients. On its website, Supernus helps patients to understand the differences between their “ON” experiences with the disease versus their “OFF” experiences. A recent campaign launched by Acorda highlights the need for PD patients to fight! In a recent statement, Kerry Clem (Chief Commercial Officer at Acorda) said, “Our message to our Parkinson’s community is ‘we see you, and we see fighters.’ We want this campaign to reflect the strength, the determination and grit that people with Parkinson’s bring to their fight against this disease.” https://www.fiercepharma.com/marketing/fighting-talk-acorda-gets-combative-new-inbrija-parkinsons-campaign-after-lackluster
By showcasing real-life stories of individuals living with PD and their experiences, these campaigns aim to reduce stigma, increase empathy, and promote a deeper understanding of the challenges faced by those affected by PD.
Nine years after being diagnosed with PD, Fox launched the Michael J. Fox Foundation to support patients and give them hope. In a recent interview, he commented: “[I’ve had the condition for] 30 years. There’s not many of us that have this disease for 30 years. It sucks. It sucks having Parkinson’s. For some families, it’s a nightmare. It’s a living hell. You have to deal with realities that are beyond most people’s understanding.”https://www.washingtonpost.com/wellness/2023/04/30/michael-j-fox-parkinsons-disease-battle/
Fox is winning by fighting the disease and giving others hope. We should do everything we can to help all the people who are suffering from this disease!