A big thank you to all those who took part in our Non-Motor Symptoms Survey

The non-motor symptoms survey discovered that sleep disruption is almost universal for those living with Parkinson’s. For instance 80% of people living with Parkinson’s (PWPs) experience disturbed sleep attributable to their Parkinson's and nearly three quarters (72%) considered this to be moderate to severe. Disturbed sleep included inability to get to sleep, frequent waking and vivid dreams. 74% felt that sleep problems significantly impacted their quality of life.

Sleep problems were mirrored in daytime fatigue. Nearly all (97%) PWPs experienced daytime fatigue, attributed to their Parkinson's (72%) or their medication (22%). Daytime fatigue was considered moderate to severe (77%) and impinging significantly on their quality of life (81%).

Most studies of Parkinson’s focus on the motor effects of the disease such as tremor, stiffness and slowness. Although sleep disruption is acknowledged in Parkinson's, the extent to which this impinges upon quality of life is less well established. Scaravilli et al (2003) proposed that more attention should be paid to non-motor aspects of Parkinson's in people with Parkinson’s (PWPs).

These conclusions support Scaravilli et al (2003) and, additionally, suggest that sleep disruption and impaired quality of life is the norm for people with Parkinson's, with virtually all patients suffering daytime fatigue

Facts about respondents:

127 respondents, 52% male with an average age of 62 years. On average, respondents have had Parkinson’s for six and a half years, and 92% count their Parkinson’s as mild to moderate. 94% are treated by a specialist and 23% have access to a Parkinson’s Nurse Specialist.

Further information can be found at: cureparkinsons.org.uk/page/...

This survey was compiled and analysed by The Cure Parkinson's Trust which has one bold aim - to cure Parkinson's disease. The charity funds innovative projects and inspirational scientists. It brings scientists together to improve communication and promotes collaboration between researchers. Founded by people with Parkinson’s, the Trust is passionate about engaging people with patients in this vision.

Scaravilli T et al. Health-Related Quality of Life and sleep disorders in Parkinson’s Disease. Neurol. Sci. (2003) 24: 209-10.

With many thanks to the following for helping to develop this survey: Dr Peter Fletcher (Chair), Geriatrician, Dr Helen Roberts, Geriatrician, Dr Karen Green, former GP living with Parkinson’s, Alison Leake, Parkinson’s nurse specialist, Jane Price, Parkinson’s nurse specialist, Jayesh Shah, Commissioning pharmacist, Steve Grundy, Marketing Sciences

This survey has been supported with an educational grant from UCB. The survey was developed by consultants in partnership with CPT; UCB paid an honoraria to the consultants

2 Replies

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  • I was trying to remember what a decent nights sleep was, and nearly had to look it up in the medical dictionary.

    Perhaps a heavy frying pan would help!

    Now that they have all the facts and figures, do they have an answer to help us all have a good nights sleep?

  • yes it was another lifetime! now a little help please!

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