Events

All our events will be covered digitally. We also will provide some parts of the events for a limited time as downloads.

Past events

Managing the Parkinson Condition

  • Date: 23 Jan 2021
  • Recording of the event: CLICK HERE

Managing Daily Life with Parkinson’s

  • Date: 27 Feb 2021
  • Format: webinar (zoom meeting)
Recording of the event:
Slides used:

Feedback from the Breakout sessions

  • John, who has developed various apps, eg a side to side tap test to measure movement, himself and a fascinating website – take a look: https://www.parkinsonsmeasurement.org. All agreed that apps developed by PwPs for PwPs are likely to be the best!
  • Kate, a neurological physio in Cumbria, is really keen to use apps to have better information about progress of patients between visits, she only gets a snapshot of her PwPs when they visit. She really wants to create individualised programmes so she needs more reliable information about how things are going between visits. Most of the group agreed that this would be really useful. Kate also mentioned a good app for speech therapy called Flora.
  • Ken – wants to know about none-invasive nerve stimulation.  He has created some of his own stimulants to help him get out of a chair, which in the evening, as soon as he thinks about it he can’t do it, whereas if the doorbell rings or if he throws his pen on the floor he can easily stand up out of his chair……he just needs the trigger.  He also uses synthesised music which seems to really help his movement if he is having a bad day.
  • The general issue of an effective way for recording how you are doing and what is affecting your state was clearly a big hit with most of the group.
  • Simple technology is currently being used quite effectively, eg timers on phones, smart speakers at home, exercise apps. This technology has not been designed specifically for PD, but people are adapting its use for their needs.
  • One of the main issues is motivation and remembering to do things that will help. For example, remembering to do your stretching exercises.
  • Personalised reminders can help. For example, getting your smart speaker to play a recorded message from your friend or family member reminding you to take your medication.
  • The Nintendo Wii fit was used by one person in the group for their exercise and it worked well. Also, live online exercise classes were more effective than pre-recorded ones.

Other main areas of interest:

  • the wish for a device that could address tremors.
  • the wish to have integrated solutions and devices, not multiple ones.
  • the concerns over privacy of medical data (which would need to be addressed ex post).

Thanks to the

  • hosts: Joanne Goodburn, Brendan Hawdon and Andy Howden
  • and the speakers for their support.

Planned events

The Road towards Optimal Treatment


Future events