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 past 18 months 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 5-part series on axial SpA. 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 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 firstname.lastname@example.org. 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 Senior 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 My AS My Life 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/.
Weds 4 May, 13.00: Mobility aids around the house with Colin Beevor, Matron and Senior Clinical Nurse Specialist
Weds 11 May, 13.00: Exercising during an axial SpA flare with Zoë Clark, NASS Senior Self-management Programme Officer
Weds 18 May, 13.00: Somatic movement spinal exercises with Ian Young, Somatic movement teacher
Weds 8 June, 13.00: Men and axial SpA with Matt Daly, Physiotherapist
Weds 22 June, 13.00: Non-biologic medication for axial SpA with Colin Beevor, Matron and Senior Clinical Nurse Specialist
Weds 6 July, 13.00: Therapeutic Tai Chi for axial SpA with Susi Gaikwad, Rheumatology Specialist Physiotherapist
Some recent past talks:
Mon 14 Feb, 13.00: Researching what patients value with NASS CEO Dr Dale Webb and researcher Alison Drury, Think Vivid
Weds 23 Feb, 18.00: Tai chi qigong with Julia Mitchell, Health & Wellbeing Coach
Weds 2 Mar, 13.00: Imaging for axial SpA with Professor Margaret Hall-Craggs, Consultant Radiologist and Professor of Medical Imaging
Tues 8 Mar, 18.00: Family life with arthritis, with Joel Nelson and Katherine Bloomer, patient advocates
Weds 16 Mar, 13.00: Intro to health and wellbeing coaching with Deimante Sidlauskaite, Health & Wellbeing Coach
Weds 23 Mar, 13.00: Nordic walking with Julia Mitchell, Health & Wellbeing Coach
Weds 30 Mar, 13.00: Working with axial SpA, with Zoë Clark, NASS Senior Self-Management Programme Officer
Weds 20 Apr, 18.00: High-Intensity Interval Training with Josh Poole, Senior Physiotherapist
NASS YouTube playlists:
Managing pain https://youtube.com/playlist?list=PLnKgSfibFP6I-G2sZWRuQXlw6Zi-sdGj-
Managing flares https://youtube.com/playlist?list=PLnKgSfibFP6LI7Dsgt56EVBRS8NmiVvNO
Life hacks https://youtube.com/playlist?list=PLnKgSfibFP6LyMKn0OshGUtdGNaG30ih8
Emotional wellbeing https://youtube.com/playlist?list=PLnKgSfibFP6JvegrhYasnNK_qpmGmMyfq
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