by Danielle Bradshaw from In The Cloud Copy

Information provided by the Michael J. Fox Foundation showed that the majority of patients that had Parkinson’s disease and also contracted COVID-19 said that they either had worsening or entirely new motor and non-motor symptoms.

Almost two-thirds of patients that didn’t contract the virus reported negative effects from the ongoing pandemic as well; obtaining their medication was more difficult, healthcare appointments were canceled, and they saw a marked reduction in their home care. The latter information came from findings published on the medRxiv preprint server.

But What is Parkinson’s Disease?

Parkinson’s disease (PD), or just Parkinson’s, is a long-term neurological degenerative disease that mostly affects the motor system, but as the disease progresses, the patient will begin to endure more non-motor symptoms. In the initial stages of the illness, symptoms may present themselves as shaking, rigidity, problems walking, and slow movement.

Behavioral/psychological problems are also common; depression, anxiety, and dementia (which occurs in the advanced stages of the disease) may appear. Patients may have sleep, sensory, and emotional issues as well.

Purpose of the Surveys

These self-reported findings are the first (and largest) data sets pertaining to COVID-19 causing problems with patient health and care amongst those who suffer from Parkinson’s disease. The information is useful because it lets doctors, caregivers, and researchers know about the patient’s experiences straight from the source. A spokesperson went on to say that nearly all the patients that contracted COVID-19 displayed worsened Parkinson’s symptoms. Typically, when someone with Parkinson’s gets an infection of some kind, their symptoms do worsen.

The Fox Insight online clinical survey was created in 2017 and was conducted so that researchers and neurological experts could hear what those who have Parkinson’s had to say about the disorder. As of now, nearly 50,000 people have participated in the survey and this has produced the highest number of patient-reports in Parkinson’s related research efforts.

The COVID-19 Contraction Survey Results

Fox Insight conducted an online survey that ran from April 23 to May 23; 5,429 people with Parkinson’s responded while 1,452 of the survey takers were people who didn’t have Parkinson’s. Out of all of the participants, 77 of them said that they had been diagnosed with COVID-19 and 51 of those diagnosed had Parkinson’s.

Most of the Parkinson’s patients were found to have either new or worsening motor (63%) or non-motor (75%) symptoms – mood changes, fatigue, tremors, stiffness, cognitive problems, and problems walking – while they had the SARS-Cov-2 virus.

Everyone that had COVID-19 (those with and without Parkinson’s) displayed similar issues. Those that had Parkinson’s for a longer amount of time had a higher risk of pneumonia, needed additional oxygen, or needed to be hospitalized. To specify, if a person had the disease for nine years or more, the chances of any of the aforementioned occurring was around 44% and if they had it for less than nine years then their chances of suffering complications dropped to around 14%

The Non-COVID-19 Contraction Survey Results

Perhaps the most startling part of the survey was the number of people that didn’t have COVID that were negatively affected by the pandemic. 21% of participants were unable to regularly exercise, 64% of them didn’t have regular access to medical care, and 57% couldn’t conduct their normal social activities. The survey also revealed that 43% and 52% of patients saw worsened motor and non-motor symptoms, respectively.

Disruptions in medical care were more likely to contribute to worsened motor symptoms while disruptions in social and exercise routines or being asked/required to quarantine themselves were more inclined to see worsening non-motor symptoms.

Disrupted healthcare was disproportionately displayed among patients that live alone, people of color, and lower-income patients, because they had issues getting their medications. Those in the lower-income bracket seemed to have more issues with finding ways to socialize and exercise. They were also much less likely to use telemedicine.

Although the survey showed just how resilient the Parkinson’s community can really be, it also showed several disparities and just how much chaos the pandemic has brought to the medical system.

Read more about this here.