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International Parkinson and Movement Disorder Society
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MDS Community Conversations: Interview with PD patient who suffered a COVID-19 Infection

MDS OnDemand Blogs

MDS Community Conversations Advisory Team:  Victor Fung, MBBS, PhD, FRACP; Kelvin Chou, MD, FAAN; Maria Stamelou, MD, PhD, FEAN; Catalina Cerquera-Cleves, MD; Oluwadamilola Ojo, MD; Woong-Woo Lee, MD

Prepared by Sarah Wahlstrom Helgren, PhD  

As care providers continue to navigate the COVID-19 pandemic, the experience of patients can be both informative and encouraging. How patients with Parkinson’s disease might respond to a COVID-19 infection is of specific concern to the MDS community. Below is an interview graciously provided by person with Parkinson’s disease who has had a COVID-19 infection. If you have had a movement disorders patient with a COVID-19 infection or a patient who has developed a movement disorder following a COVID-19 infection and would like to contribute to our COVID-19 case repository, please follow this link.

Special thanks to Dr. Katarina Rukavina, Prof. K. Ray Chaudhuri, and Prof. Maria Stamelou for their assistance in obtaining this interview.

Can you summarize your movement disorder diagnosis? (years you have had the movement disorder, last time you saw the specialist before the infection with COVID) 

  • I have been diagnosed with Parkinson’s disease (PD) in 2014, at the age of 49. The disease started about a year earlier, when I became very clumsy with my left hand and started noticing a tremor. For example, I struggled to type, to put the key in the lock or to get something out of my pocket. Following a positive DaTScan, PD has been diagnosed at King’s College Hospital in London. Before the COVID-19 disease, I have seen a Parkinson’s Nurse Specialist in January 2020, and Prof Chaudhuri in September 2019.

What was your experience like with COVID?   

  • My COVID-19 disease started with a mild cold that lasted about a week. Just as I thought it was over, it hit me really hard – I have developed fever up to 40°C (104°F), and could not get out of my bed for two weeks. My sense of smell has already been lost previously, but this has worsen even more. Also, everything I ate tasted like metal. During this period, I have lost a stone (6,35 kg). I have developed pain in both knees, which was so strong that I could not get up the stairs.

How long were you sick with COVID?  

  • Three weeks altogether.

Did you notice any changes to your Parkinson’s Disease while you were sick with COVID?  

  • Yes, I have notice a slowness of my movements and I have been shuffling more than usually.

Do you have any residual health issues now that the COVID has resolved?

  • Most of my symptoms resolved completely, but I still have a mild pain in both knees.

What advice would you give other patients with Parkinson’s Disease that may have just received a positive COVID test?  

  • The most important advice I have for people with PD who get COVID-19 is to rest a lot and to take tablets to reduce the temperature. Regular contact with health-care professionals is incredibly important, as well. When I was diagnosed with COVID-19, I have been receiving phone calls from the NHS (National Health Service) COVID-19 helpline. They have been checking how I am doing, and also explained me which symptoms would be dangerous for me, so that, if they occur, I would have to call the ambulance.

What advice would you give to the Movement Disorders specialists whose patients may become ill with COVID? 

  • First of all, keep yourselves safe.
    Try to keep a regular contact with your patients. You know, this condition is frightening, indeed, and it is very helpful for people with PD to be informed, and to know what to expect if the catch COVID-19.

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