Events happening in the next few months
Of course, in the current climate, it has been very hard for charities such as the Bath Institute for Rheumatic Diseases (BIRD) and the National Axial Spondyloarthritis Society (NASS) to put on their usual, brilliant in-person events. Indeed, this year has been a challenge for us all. But one definite positive is the creativity and innovation that has been sparked by the pandemic!
From BIRD, we have seen the launch of their excellent podcast series - with a series on axial SpA to be launched soon. And from NASS, we have seen development of even more online resources, Facebook live sessions, and even a couple of live online events (with an excellent, very impressive virtual conference platform!). Of course we all miss those irreplicable face-to-face interactions that simply cannot be fully captured online. But this new way of delivering content has undoubtedly allowed many people who perhaps would be unable to attend in-person live events, the opportunity to engage with such content for the first time. Which can only be a positive thing!
On the current page, we hope to keep you up to date with any live events from BIRD or NASS coming up in the next couple of weeks that you can tune into.
If there are any other events that you think should be included/ we may have missed, please do get in touch with Rosie at email@example.com. We would love to hear from you!
Bath Institute for Rheumatic Diseases
The brilliant Mel from BIRD has been busy recording podcasts for various different conditions, with help from patients, clinicians, academics and other experts in the field of Rheumatology. The axial SpA series went live in early December and can be accessed via anchor.fm, spotify, and various other podcast providers: https://anchor.fm/bird-ppepodcasts. The series is comprised of 5 interviews with guest speakers, including with our Project Nightingale Research Assistant Rosie:
1. 'Overview and Medications' with Dr Raj Sengupta, Consultant Rheumatologist and Clinical Lead for Axial Spondyloarthritis.
2. 'The importance of staying active' with Vicky Baldy, Snr Physiotherapist Specialist AxSpA
3. 'Research News' with Dr Elizabeth Reilly, Clinical Research Fellow in Rheumatology, RNHRD Bath and School of Pharmacy and Pharmacology, University of Bath
4. Project Nightingale with Rosie Barnett, Research Assistant, University of Bath and RNHRD
5. NASS News and Updates – an interview Dr Dale Webb, CEO NASS
The other online series' include podcasts about Myositis, Vasculitis and Osteoporosis. Keep up to date with BIRD's online content here: https://www.birdbath.org.uk/for-patients-public
National Axial Spondyloarthritis Society
The fabulous Zoë Clark, experienced Osteopath and Self Management Programme Officer for NASS, who has axial SpA, recently kindly got in touch with us at Project Nightingale to provide some additional resources for the website. Thank you so much Zoë!
Below is a schedule of all the upcoming events led by NASS. For all of these, people can watch live via: https://www.facebook.com/NationalAxialSpondyloarthritisSociety/live. But don't worry if you cannot attend on the day - all lives are later uploaded (plus resources) to: https://nass.co.uk/managing-my-as/my-as-my-life/.
14 April 1300: Weight management with Martin Lau, Dietician and Fitness Instructor, Arthritis Action
21 April 1300: Hypnotherapy and relaxation with Lara Wiseman, Hypnotherapist and Life Coach
28 April 1300: Osteoporosis - what is it and how is it treated? with Sarah Leyland, Royal Osteoporosis Society Clinical Advisor
Past recent talks:
24 March 1800: Weightlifting with axial SpA (AS) with Andrew MacMillan, Osteopath and Researcher
17 Mar 1300: NASS will be joined by Jaina Engineer, Knowledge and Evidence Manager at Crohn's and Colitis UK, discussing inflammatory bowel disease (Crohn's and Ulcerative Colitis)
10 March 1830-1930: Yoga for axial SpA (AS) session with Geoff Lindsay and Jamie Boder
3 Mar 1300: NASS will be joined by Dominic Urmston, Patient Advocacy and Communications Manager at the Psoriasis Association, discussing psoriasis
25 Feb 1300: Rosie Barnett, researcher and PhD student, is updating us about the interesting findings from Project Nightingale and discussing how apps can help us look after our health
11 Feb 1800: Life coach, Julie Vallortigara, will be discussing how people with long-term conditions can use life coaching to improve their health and clarify their goals
3 Feb 1300: NASS Self Management Programme Officer, Zoë Clark, will be demonstrating how to make a 'flare toolkit' to help people manage their axial SpA (AS) flares
27 Jan 1200: Therapeutic tai chi session with Rheumatology Specialist Physiotherapist Susi Gaikwad
Catch-up on past events...
Physio in Focus conference, hosted by NASS in collaboration with AStretch
See our blog post on the conference here, in addition to an embedded video of the entire conference from NASS's YouTube below: https://www.projectnightingale.org/blogs/additional-resources-to-help-you-manage-your-axial-spa-from-home/
Keeping motivated to keep moving – Will Gregory, 3:20
The jaw and axial SpA – Philip Bateman, 37:40
Coping with Fatigue – Dr Jane Martindale, 55:11
Checking your movements at home – quick checks and maybe even a BASMI? – Claire Jeffries, 1:15:49
Sleep well with axial SpA – Emily Clarke, 1:31:09
High-intensity exercise for axial SpA
You may remember us discussing the potential benefits of high-intensity exercise in Part Two of our “A year in AxSpA Research” series: https://www.projectnightingale.org/blogs/2020-a-year-in-axspa-research-part-two/. Excitingly, on the 19th November, NASS published their Facebook live session with the brilliant Self Management Programme Officer, Zoë Clark, and physiotherapist Josh Poole, where Josh talks about the benefits of high-intensity interval training (HIIT) for people with axial SpA and leads a HIIT taster session. Check it out below.
Self-care tips for axial SpA
On the 1st December, Zoë Clark shared some simple self care tips that may help you through the festive period. Again, see the video below. This was complemented by an excellent blog post on self-care for ASone: http://asone.nass.co.uk/self-care-top-tips/. Read more about ASone on our "Resources" page: https://www.projectnightingale.org/resources/
Getting a good nights sleep
Back in November, Emily Clarke, Physiotherapist, discussed ways to manage night pain and sleep better with axial SpA. The video is linked below. No time to watch the whole video? Do not worry - we would recommend checking out the concise, simple, complementary blog post on the NASS website: https://nass.co.uk/news/self-care-week-sleep-tips-for-axial-spa-as/
On the NASS YouTube there is an extensive selection of videos, some dating as far back as 9 years ago, with examples of stretches and exercises, general advice, and people sharing their own stories. This really is such an amazing resource, and can be revisited time and time again.
Some of these videos include:
Advice for studying with axial SpA - https://www.youtube.com/watch?v=ugNPAn4Li0M
Pilates for axial SpA - https://www.youtube.com/watch?v=VKVoUMkOVR4
How to make mornings easier - https://www.youtube.com/watch?v=uRDLd9iSGng