The focus groups held at Rallying clarified that “off” periods represent the priority for people with Parkinson’s (PwP). Further to this, key non-motor symptoms (for example, fatigue, communication, thinking, anxiety, sleep) are inherently related to “off” motor symptoms (for example, slowness of movement, stiffness, rigidity).
Although fatigue, pain, slowness of thinking and word finding were all prioritised highly, these are not things that are clinically measured in Parkinson’s currently. That said, there are numerous apps and devices being used to measure Parkinson’s some of which do include these symptoms. However not all provide clear information on what they are measuring and how that measurement relates to the specific and individual symptoms of Parkinson's.
Parkinson’s is different for everyone and we need to understand which apps and devices are the most user-friendly and provide the most relevant information about aspects of an individual’s Parkinson's. Therefore, as a direct result of Rallying 2015 we have developed a Parkinson’s Apps and Devices Rating Scale.
Another outcome from Rallying 2015 was the need to compile insights from tips and tricks for living with Parkinson’s. During the meeting it became clear that numerous PwP have tips and tricks that they use to deal with certain symptoms that they find bothersome.
- Dystonia/pain in foot
Tips and tricks
- Walking backwards
- Soft shoes
- Stand on foot
- Toe stretchers
- Arch stretchers
These tips and tricks are an invaluable resource, they provide important information and insights for PwP and clinicians of how to live with/treat Parkinson’s. Therefore, at WPC we will be capturing tips and tricks for living well with Parkinson’s in order to create a heritage of advice from PwP around the world that will be available on our website.
- World Parkinson Congress 2016 World Parkinson Congress (WPC), the only Parkinson’s conference to draw together people with Parkinson’s, researchers and clinical experts took place in Portland, Oregon, USA from 20th to 23rd September 2016. We have just got back from a very busy and interesting trip! Tom Isaac honoured with Distinguished…
- Take a look at a few of the surveys we recommend to express your individual views and opinions on these topics in Parkinson’s Disease. Rallying 2017: Perceptions of risk University of Lisbon survey: Swimming & Parkinson's The Parkinson Alliance Survey: Vision and Parkinson's Describing your Parkinson's …
- At WPC 2016 we filmed people with Parkinson's, advocates and experts sharing their Tips and Tricks for living well with Parkinson’s. These films are available to view in the Tips and Tricks Library under the relevant sections. It is intended that these films will create a 'heritage' of advice from advocates living with the condition…
- The more we know about how Parkinson’s progresses, the better we can tailor treatments for people living with the condition. Better measurement of symptoms also means more efficient and less expensive ways of testing new treatments in clinical trials. Parkinson's Apps and Devices Rating Scale (MARS-PARK) There are numerous apps and devices…