Parkinson’s Disease is a degenerative neurological condition that results in significant physical, and eventual cognitive, impairment. About one million people in the US are living with the disease.
Although there is no cure for Parkinson’s Disease, a variety of therapies exist that can improve its symptoms, resulting in an increased quality of life for patients.
How are these individuals and their loved ones sharing how life is lived with Parkinson’s Disease through social media?
The Trends Section provides an overview of some of the most recent and relevant topics that relate to particular health conditions.
It features a selection of the topics that have the fastest growing Google search interest across the last three months, and reflects the inquiries of patients, healthcare providers, scientists, and others who are invested in the topic.
This is valuable to understand people’s interests and concerns at the present moment, and often include the U.S. states that have the highest interest in a topic.
Quilt.AI brings these trends to life through an analysis that incorporates both cultural and scientific lenses.
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Search interest for L-DOPA supplement grew by 243% in the last 3 months, from May 2022 to July 2022.
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Parkinson’s Disease is characterized by a deficiency in the neurotransmitter dopamine, which in turn impacts the brain’s ability to transmit signals to coordinate movement. This results in the well-known manifestations of Parkinson’s, such as tremors and limb stiffness.
L-DOPA (or ‘levodopa’) is an amino acid that is a precursor to dopamine, and supplementation with it can increase dopamine levels, which can positively impact Parkinson’s Disease. L-DOPA also happens to be found in a plant source called Mucuna pruriens, and is widely available as a supplement to boost dopamine levels.
The spike in July’s searches might be due to the buzz about an upcoming research article in JAMA Neurology, which reveals that some over-the-counter supplements contain very high levels of L-DOPA, potentially leading to adverse effects.
Searches for Parkinson’s disease dementia increased over the past three months. In addition to the devastating physical effects of Parkinson’s, the disease can also cause this specific form of dementia. People who are affected demonstrate impairment to their thinking, reasoning, problem-solving and memory. They can also exhibit changes in mood and personality.
Sadly, approximately 50-80% of people with Parkinson’s will experience this form of dementia, which, on average, develops within 10 years from the initial diagnosis.
The recent increase in searches might be driven by news articles that highlight the findings of recent research in the journal Neuropathology and Applied Neurobiology. This research speculates about the mechanisms underlying cognitive decline among Parkinson’s patients.
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Search interest for Parkinson’s Disease Dementia grew by 77% in the past 3 months, from May 2022 to July 2022.
Search interest for Carbidopa Levodopa side effects grew by 63% in the last 3 months, from May 2022 to July 2022.
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Searches related to the side effects of the widely prescribed combination drug carbidopa/levodopa (brand name: Sinemet) have been steadily increasing over the past three months. The greatest number of searches originated from the states of Florida, California, Texas and New York. Levodopa has been found to improve the motor symptoms of patients with Parkinson’s disease.
Levodopa is often combined with carbidopa, which supports levodopa’s crossing of the blood-brain barrier and reduces the more severe forms of unpleasant levodopa-associated side effects like nausea and vomiting. However, people who take this drug may still experience side effects, including dizziness, loss of appetite, diarrhea, dry mouth, constipation, and forgetfulness or confusion.
Searches for the drug trihexyphenidyl have increased over the past three months. The majority of the searches came from Alabama, Wisconsin, Oklahoma, Indiana, and Michigan. Related to this, search for ‘Artane generic name’ was also trending, as people were seeking out trihexyphenidyl and are perhaps more familiar with its brand name.
This drug is commonly prescribed to Parkinson’s patients and is used to treat stiffness, tremors, spasms, and poor muscle control.
The search increase is likely related to new reports referencing Japanese research that suggests the drug may also be helpful to PTSD sufferers.
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Search interest for Trihexyphenidyl grew by 45% in the past 3 months, from May 2022 to July 2022.
Search interest for Ioflupane grew by 19% in the last 3 months, from May 2022 to July 2022.
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Searches are up for ioflupane, in reference to the radiopharmaceutical 123I-ioflupane, which is used to visualize parts of the brain in order to assist in diagnosing Parkinson’s disease or parkinsonian syndromes. Delivered by injection into the bloodstream, this drug is used as part of an imaging procedure and ultimately helps HCPs to assess the level of dopamine receptor cells in the brain. The brand name ‘DaTscan’ was also trending (referring to DaTscan™123I-ioflupane) within the same period.
The increased interest in this drug can be attributed to the April news that pharmaceutical company Curium announced FDA approval of a generic version of DaTscan™123I-ioflupane.
The Culture Section highlights emerging cultural trends, new products, and notable dialogue about a variety of health conditions. The purpose of this section is to zoom in on what has been happening within the cultural and professional landscape of a particular health condition–stories that are often missed by quantitative searches.
By featuring influential social media items, patient discourse, professional dialogue, product innovations, and impactful news items, this section illuminates the lived experiences of many patients, while also providing a snapshot of the developments happening around them.
Here, Quilt.AI offers a detailed and nuanced perspective of what is new and what is meaningful.
Early onset Parkinson’s patient Amber (@notthefakeamber) uses humorous posts on TikTok to cope with her condition. Her tagline is “fighting Parkinson’s with dark humor and sarcasm”, and she accomplishes this in creative ways. In some of her most popular videos, she recreates the doctor’s appointment where she was given her diagnosis, jokingly speculating about possible new career paths where shaky hands would be advantageous. Among the options are Polaroid picture developer and bartender (given the need to shake drinks). She has 92.1K followers, and receives an outpouring of support in the comment sections of each of her videos. Her videos go a long way in assisting others as they grapple with the same diagnosis.
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Endurance athlete and Parkinson’s patient Jimmy Choi (@jcfoxninja) demonstrates how he embraces an active lifestyle and utilizes household hacks to live life to the fullest despite his condition. Each of his highly popular TikTok videos are viewed by thousands of people, and his almost 330K followers cheer him on in all of his endeavors. Jimmy’s athletic abilities are only rivalled by his culinary talents, and in these videos, he shares kitchen hacks and his athletic skills. He is embodies thriving with Parkinson’s and serves as inspiration to others–with or without the condition.
TikTok has also been a place where family members of those with Parkinson’s disease post tributes to their loved ones. They often focus on how these patients are able to complete tasks in daily life, and thus give inspiration to others by showing how they are adapting and still able to function and interact.
A recent example is TikTok user @windenrose’s June 3 video showing her father’s adaptation to the functional limitations of his Parkinson’s; the video has been watched 6.7M times. These videos also serve to build a supportive online community of family member-caregivers who are consistently present in Parkinson’s patients’ lives.
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There has been ongoing online conversation about deep brain stimulation to address Parkinson’s among both patients and medical experts. In this procedure, an electrical probe is inserted into the brain, which gives off an electrical pulse and can remedy much of the tremors caused by the condition. Social media platforms such as TikTok and Twitter facilitate the spread of news and hopefulness about new therapies.
On June 16, Black Sabbath singer and renowned reality show star Ozzy Osbourne took to Instagram to report that he was recovering from “life-altering” but unspecified surgery. Although he has been public with multiple health struggles in recent years, this announcement brought new focus to his Parkinson’s Disease. News outlets were quick to connect the surgery to his Parkinson’s disease, which was diagnosed in 2003 but only publicly revealed in 2020.
Celebrities who share their challenges and triumphs with Parkinson’s serve to raise awareness and also demonstrate what is possible while living with the condition.
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