Live well with Parkinson’s
We have asked people with Parkinson’s to recommend their favourite resources for living well with Parkinson’s. These fall into three themes – lifestyle and well-being, treatments and experiences.
Lifestyle and Well-being
Everyone living with Parkinson’s finds their own formula and their own routines. Diet, exercise, relaxation and hobbies are known to be beneficial and can help your quality of life day-to-day.
Resources:
- 4D Life is an evidence-based health and fitness programme, developed by specialists, that encourages and supports people living with Parkinson’s to take more control, helping to enhance their own lives and the lives of those who are close to them.
- Neuro Heroes is the UK’s first online neuro gym, delivering condition specific exercise classes for those living with Parkinson’s Disease, MS and other neurological conditions
Neuro Heroes: neuro physio led exercise Find out more
- The Young Onset Parkinson’s Exchange (YOP-X) provides an innovative App and online resources to act as an information portal for those living with young onset Parkinson’s.
- No Silver Bullet As they state: ‘So much more to PD than just popping meds! A Parkinson’s group for PwP by PwP. Regular speakers on all things PD, recorded & on YouTube’. Email: nosilverbullet4pd@gmail.com
No Silver Bullet YouTube channel
- The Davis Phinney Foundation offers online resources and their ‘Every Victory Counts’ manual offers advice to improve quality of life.
David Phinney Foundation – Find out more.
- The European Parkinson Disease Association (EPDA) offers extensive wellness and treatment resources many of which have been translated. The exercise series hosted by Parkinson’s Physio Josefa Domingos has been highly recommended.
- The Parkinson’s Foundation’s podcast, The Benefits of Exercise for People Living with Parkinson’s, shows emerging evidence that some types of exercise can even be neuroprotective.
Parkinsons.org The benefits of exercise – Find out more.
- The Living Well with Parkinson’s project was designed and developed by a small group of volunteers from Parkinson’s UK support groups in Devon and Cornwall. It offers people with Parkinson’s and their family and friends information about how to live well with Parkinson’s.
Live well with Parkinsons – Find out more.
- Sport Parkinson’s is designed to offer support for those wanting to create exercise groups “to live as well as possible, ’til the cure comes”.
Treatments
To help you manage your Parkinson’s, there are a number of treatment options and combinations available to you.
Resources:
- Parkinson’s UK has excellent resources about what you should do if you are newly diagnosed and the types of treatments that are helpful for Parkinson’s.
Parkinsons.org.uk – Find out more.
- Alternatively the EPDA also has helpful factual information.
- Parkinson’s is changeable and given the brevity of most clinical appointments it can be helpful to think about what aspects of your condition you might like to raise with your clinician. Getting the most from your appointment tool might help.
Experiences
Listening to the experiences of others who live with the condition is one of the best ways to learn more about Parkinson’s.
- Parkinson’s 360 is a set of resources developed by The Michael J. Fox Foundation for anyone whose life has been affected by Parkinson’s.
michaeljfox.org/parkinsons-360 – Find out more.
- Dr Soania Mathur is a PD Avenger, GP, and a mother living with Parkinson’s. Her website has extensive and thoughtfully compiled information.
UnshakeableMD.com – Find out more.
- Physiotherapist Jill Carson set up the Wellness Project.
ParkinsonsWellnessProject – Find out more.
- PD Avenger Tim Hague is the founder of UTurnParkinsons.
UTurn Parkinsons – Find out more.
- Parkinson’s Together is an online support group for people throughout the UK affected by Parkinson’s. It is run by volunteers.
Parkinson’s Together – Find out more
- In Europe Alexander Reed founded the European Parkinson’s Therapy Centre which offers residential courses for people with Parkinson’s to understand their condition.
European Parkinsons Therapy centre – Find out more.
- Parkinson’s Africa is founded by another inspirational advocate Omotola Thomas. Omotola is addressing the stigma and the health inequality across the continent of Africa and raising awareness of the urgent need for treatment and information.
ParkinsonsAfrica.com – Find out more.
- Matt Eagle concurs and his Parkilife series is all about humour and positivity.
You might also like to listen to a choice of Larry Gifford’s podcasts in his superb series, “When Life Gives You Parkinson’s”. Larry is the founder of PD Avengers – the global alliance of people with Parkinson’s, partners and friends, campaigning to change how Parkinson’s is seen and treated.
Please note: Cure Parkinson’s is not liable or responsible for the content or management of third party websites.