Understanding the challenges of living with Parkinson's in a post COVID health and social context: a mixed methods proposal

Parkinson's disease is the second most common neurodegenerative condition in the UK,
affecting around 145,000 individuals. While age of onset in the early 60s is common,
individuals can live with the condition for many years (1). Physical challenges (rigidity,
tremor etc.) are most often associated with the condition but psychological difficulties, low
mood, anxiety etc (2) are also reported. Individuals have varying health care needs, requiring,
optimally, regular reviews with their consultant and involvement from other health
professionals (3).
The current COVID-19 pandemic has been associated with social and economic changes on an
unprecedented level (4), with psychological effects already demonstrated. In relation to the
specific effects on individuals with Parkinson's, the applicants' latest collaboration has
highlighted various initial impacts (https://www.parkinsons.org.uk/news/how-havecoronavirus-
covid-19-restrictions-impacted-people-affected-parkinsons). In this, a survey of
Parkinson's UK members in May 2020 was completed by 1491 people with the condition and
540 family members. The key findings were:
- over a third of individuals with Parkinson's experienced increased slowness of movement,
stiffness and fatigue and over a quarter increased tremor and anxiety. Stress and isolation
and reduced access to health care and exercise were seen as causes of this physical
deterioration.
- For those in regular contact with health services, many had appointments cancelled with
alternatives not routinely offered.