Triskel Promotions: Davy Knowles's Gigs and Southern New Year Day Dips!
Happy belated New Year to everyone! How crazy that Christmas was exactly a month ago today!
First of all, a huge, huge thank you to Lenny Conroy and Triskel Promotions for all their wonderful support for Without Wings over the festive season. Somewhere in the region of £2,500 was raised between the bucket collection at the Davy Knowle's gigs, the Southern New Year's Day Dips and the T shirt sales! Absolutely fantastic! This will all go towards the services we are now in a position to offer which include:
Our fully funded counselling initiative and our discretionary funded projects: complementary health support, physical rehabilitation programmes, physical aids and help around the home. All these services are available for people living with these illnesses when they are most 'without wings,' or their freedom - either physically or emotionally.
We are very excited to say that today's update will be our final blog from this website! From next week, we will have a whole new website. www.withoutwings.co.uk is just entering its final 'tidying up' stage and all bar crossing the i's and dotting the t's will be with you VERY SOON along with a super inspirational AMBASSADOR!
The decision to revamp our website was based on several considerations. Firstly, from feedback, we knew some people found this site a little difficult to locate in search engines - or were confused by the 'weebly' aspect. This will therefore be removed and our new website will be www.withoutwings.co.uk Secondly, feedback also told us that people would prefer a more visual approach that was easier to navigate. Our new website is SUPER CLEAR! With big buttons, pictures and quotes! We will also be replacing the blog with a newsletter so the layout will be clearer. People will be able to sign up to receive the newsletter by email which will help everyone keep tabs on our events.... Which look set to be just as exciting this year - if not then MORE exciting, than last!
Coming up Sunday, 25th March, Laxey Working Men's Institute, 11am till 4pm - Complementary Health Fair - FREE! To attend. ALL WELCOME!
Living with pain and mobility issues can be stressful and upsetting. Here at Without Wings we believe that addressing your psychological wellbeing should be a primary, not secondary (or non!) consideration. Finding the correct support for you - be it healthy eating, appropriate exercise, counselling or a complementary therapy such as reflexology, can have a huge positive impact on your emotional/mental, and therefore overall health. However, which service to choose?
This has probably been our most frequently asked question over the last year. The honest answer is, it really depends on the individual. We therefore thought why not give people a chance to come and find out for themselves!
Without Wings can offer discretionary funding to any sufferer of autoimmune arthritis for a course of complementary treatment with an accredited practitioner. We can also offer discretionary funding for physical rehabilitation/ maintenance classes, such as yoga, pilates, or rehab gym work. Here's your chance to explore a few of the services the Isle of Man has to offer and see what you feel might help.
Other events to look forward to:
Tuesday May 15th in conjunction with Mental Health Awareness Week, Laxey Working Mens Institute, 6.45 for 7pm start - public Skype Session with Charles Linden, devisor of The Linden Method - an incredibly simple but stunningly brilliant approach to tackling anxiety disorders that is off the scale in compassion.
Here at Without Wings we love Charles Linden. An ex sufferer himself (for 27 years), his common sense, non invasive, easy, refreshing to implement and inexpensive programme (it comes with a full 12 months worth of telephone support from his team of highly trained psychotherapists,) is the bee's knees. As this event is part of an information drive and as Charles is also not charging for his services, it will be FREE! HOWEVER! Spaces will be limited to 100. You can email us at firstname.lastname@example.org to register interest anytime from now, with an allocation of 60 tickets being held back to be launched mid March.
Saturday June 16th - Details to be confirmed. LOVE TO MOVE BOUNCY CASTLE DAY! In conjunction with Soundcheck IOM - celebrating the gift of movement with a load of bouncy castles. It can be so tough dealing with crippling illness when you should be in the throes of life. This event is to highlight the impact of autoimmune arthritis especially on younger people - those affected by JIA (including adults who have grown up with JIA), younger affected adults, and also parents with these illnesses who are coping with bringing up young families. ALL WELCOME!
July 5th - tbc Tynwald Day - promoting healthy eating, fortune telling and colouring comp!
July 22nd - TALES OF THE UNEXPECTED : HEALING AGAINST THE ODDS II
Noa Bakehouse £10 per person, £5 for sufferers of autoimmune arthritis.
Our two confirmed speakers are now as follows!
Katy Hoogamdem all the way from the USA and Iida van der Byl-Knoefel, a Swedish lady in London.
Katy, aged 26, has suffered from JIA since the age of 10 months - her story is NOT TO BE MISSED! She has video footage of her whole life and quite a story to tell. Katy began the Paddison Program for Rheumatoid Arthritis one year ago. She practices Bikram Yoga everyday and has made huge progress through this low fat, plant based diet. She would describe her healing as a work in progress, but her diligence, persistence and unwavering positive attitude to life, despite the extensive physical damage she has endured over the years, makes her just an incredible inspirational speaker. Really, not to be missed. Katy's inspirational story will be coming to our new website soon....
Iida was diagnosed with RA in her early 30s and embarked on the Paddison Programme almost immediately with fantastic results. In fact, she has done so well that she is now not only completely medication and RA symptom FREE, but she has managed to have a baby - no mean feat with these illnesses, especially without a relapse. If this wasn't achievement enough, she then went on to write and publish a plant based cookbook! Iida will be here with her husband and young son for the event, and will be talking about her journey to wellness as well as, fingers crossed, providing us with a plant based cooking workshop some time over the weekend! More details on this to be confirmed.
Last year's event was a sell out! You can register your interest early and reserve a place by emailing us at email@example.com. A number of tickets will be held back to be launched for sale closer to the time. Keep an eye on our Facebook page or sign up for our newsletter when the new website is launched next week for more info! Danny and Andy are also set to return so you can catch up with them and hear all about how they are doing at the event too :)
That's all for now! See you on the other side!
***TROMBONE CHOIR CHRISTMAS EVE***
***DAVY KNOWLES FUNDRAISING GIGS***
***TRISKEL PRODUCTION'S SOUTHERN NEW YEAR'S DAY DIP***
***NEW BUSINESS CARDS AND WEBSITE!***
***2018 PROVISIONAL CALENDAR**
Happy Christmas! And thank you to everyone who has supported us through our first full and very exciting year at Without Wings, the Manx Autoimmune Arthritis Trust, either through donations or with practical support. It is all very much appreciated. A special thank you too to anyone who has sent us a donation in lieu of Christmas card purchases! <3 It's been a great year, and the next is looking set to be fabulous too. 2018 already!
As a reminder: Anyone who is a member at Ramsey Co-op can sign up to have Without Wings as your nominated charity. Here's the link:
This means that 1% of the cost of your shopping will go towards Without Wings - a marvellous scheme that will make a huge difference to how well we are able to function. If you aren't a member yet, it's highly recommended. Not only will 1% of all your shopping costs go towards charity, but you also receive 5% back on your co-op card! The link to become a member can also be found on the link above.
Without Wings have a few fundraising events lined up over the next few days! First off, local trombonists will be meeting tomorrow between noon and 2pm outside Marks and Spencer's to raise funds, whilst also heralding the arrival of the new website! However.... this will literally only be a 'heralding' and not quite a 'launching'... as Christmas has got in the way of getting everything just perfect. Together with the lovely Jamie Clague, who is helping design the new website, we have therefore decided we would rather get it right and launch in January, than do a rush job and launch tomorrow. If you are out and about in Douglas tomorrow doing that last bit of Christmas shopping, please pop over and say hello. We would love to see you.
Regarding the website - as a quick report - Jamie, who has been working like crazy trying to get everything up and running for us, has done an amazing job and it is looking fantastic! Our intention is that a more professional site will make everything we aim to achieve and do much clearer and more accessible. Our new business cards have also arrived courtesy of Ramsey Press - another company who have been fantastically supportive this last year. These clearly state our services and all the new website contact details.
Other events! Thanks to the wonderful Lenny Conroy of Triskel Promotions, we have two exciting events taking place at the end of the year. First up - Davy Knowles, one of the Island's most fantastic rhythm and blues guitar playing exports, will be in Port St Mary 28,29 and 30th December and there will be a bucket collection for Without Wings at the door. You can find out more info regarding this, here:
Secondly, Lenny has also organised the Southern New Year's Day Dips, brrrr! as a fundraising event for Without Wings! You can obtain sponsorship forms if you think you're hard enough and there will also be t-shirts available for £10 on the day. They are great! Lenny has done incredible work raising money for charity via the dips in the past so we are very grateful to have been chosen for these ventures this year. More info to be found here:
We will do a more in-depth calendar at the beginning of January, but just as a taster of mooted events for 2018...
January 1st : Southern New Year's Day Dip in aid of Without Wings
Late March : Complementary Health Fair - tbc
May 14th, 7pm : Charles Linden Anxiety Recovery Skype session -venue tbc
July 5th : Tynwald Day tbc
July 22nd : Tales of the Unexpected Part II: Healing Against the Odds! VERY exciting event - speakers currently booked and confirmed include Katy Hoogemdam. Katy, aged 26, has lived with RA since only 10 months old and is hitting the illness with everything she can get via the low-fat, plant based, Paddison Programme for Rheumatoid Arthritis and bucketloads of bikram yoga. She is doing AMAZINGLY and is just a brilliant person. Look out for her 'inspirational story' COMING SOON!
Katy actually contacted us after hearing about the last event and has been saving her pennies to come all the way from America! Her story was so compelling and as she also gives talks regarding her illness, we decided to invite her to speak. She has videos of her story throughout her life and everything. She is just ace and we can't wait to meet her in person! Other speakers to be confirmed, but we can definitely say this is looking to be a brilliant evening - possibly even a weekend as we've had so much international interest. Danny and Andy are also set to return in a helping capacity :)
October: 2nd Anniversary Variety Concert - tbc
Over 2018 Without Wings will also be tightening our relationship with the Lisa Lowe Centre, currently known as Manx Cancer Help. We were very kindly put in contact with this organisation by Dr Allinson, MHK, because our objectives regarding serious illness and mental and emotional health were so similar. We currently buy into their counselling programme which has been brilliant. We will feature more about this resource on our new website!
Manx Cancer Help are now branching out to cover the emotional needs of ALL chronic health problems on the Island in JANUARY! Their plans are vast and wonderful and exactly what the Island needs: ensuring people living with ANY life changing illness can receive the psychological and emotional support they need and deserve. We are therefore very excited to say that we have plans to partner up on one or two ventures. This will raise our profile and awareness of autoimmune arthritis, thereby enabling us to reach the people who need our services the most. Collaborations such as these are the way forward in the charity world, as they can help to ensure that the funds we receive from you, the public, are used efficiently and productively.
So Happy Christmas everyone and a here's to a wonderful 2018! From the bottom of our hearts we wish everyone wellness and happiness <3 <3 <3
***HUGE THANK YOU TO PEEL CHARITY SHOP and also to DOUGLAS LADIES TANGENT!***
***SELF CARE WEEK***
***IMPORTANT INFO RE CHARLES LINDEN PUBLIC SKYPE SESSION: MAY 14th 2018***
***EXCITING INFO RE TALES OF THE UNEXPECTED II: JULY 22nd 2018***
***WE ARE PLEASED TO ANNOUNCE YOU CAN NOW SUPPORT OUR CAUSE
VIA RAMSEY CO-OP!!!***
Hi everybody! Well, though we have no big events planned until March 2018, life at Without Wings is still very exciting! So exciting in fact, that on the back of National Self Care Week - which we recently mentioned on our Facebook page, we have decided it is necessary to pace things a little. Our awareness campaign which we hoped to run in conjunction with a local artist over the Winter months is therefore on hold until further notice. This will still happen as despite all our efforts, we are still encountering people who do not understand these illnesses. This can be a major problem for sufferers - both in terms of delayed diagnosis and also frustration - especially when these illnesses often first strike when people are of working/ child bearing age, as well as children! Non sufferers might not think it so important to understand these illnesses, but for the people who have to endure them everyday, it can be immensely beneficial to know that they do! Especially family, friends and work colleagues.
Just to clarity, there are hundreds of autoimmune arthritis conditions, the most common being rheumatoid, psoriatic and juvenile arthritis, ankylosing spondylitis and lupus. However, collectively, they still remain (thankfully), only 15-20% of all 'arthritis' diagnosis. This means that quite regularly, even the more well known rheumatoid arthritis, is often confused as a disease of ageing. However, our awareness project is currently SHELVED. Anyone passionate about getting it off the ground, please do not hesitate and we will add you to our focus group :)
Funding! People have been so generous! Thank you, thank you! Especially to the wonderful Peel Charity Shop who recently gave us a very generous gift of £2000! And also to the lovely Douglas Ladies Tangent Club who kindly donated to our cause in exchange for an educational talk. This talk was entitled: 'Thriving not Surviving with Autoimmune Arthritis.' There are a couple of us available for educational talks of this kind, please get in contact if you would like us to come to your organisation. We do try and make our talks entertaining and I personally apologise to anyone who got shot by a water pistol during the Tangent dinner last week!
In addition to the above, we are very happy to say that Ramsey Co-op have recently accepted us as one of their causes to support over the coming 11 months! This is a huge scoop. Without Wings will be in Ramsey Co-op 1-2pm Saturday afternoon if you would like to come and say hello. If you would like to support us, please click on the link above. :)
All this funding is fabulous. We are receiving more and more queries each day - especially with regard to people looking for counselling. The funding means that not only can we offer this brilliant service - that comes via the Lisa Lowe Trust, but also that we can continue to build a watertight business plan to present to the Department of Health - something we are working on all the time. This will ensure that all GPs are encouraged to promote our cause, which will help us to reach those most in need of our services.
Without Wing's overall aim is to ensure that people living with these illnesses have the best access to mental and emotional health support possible. In doing so, it is hoped that we can help sufferers avoid all too common escalating health issues - especially those linked to isolation, by enabling them to feel better supported and understood. Also, as counselling is not for everyone, we can now provide funding towards any accredited complementary healthcare programme. To be able to offer this is a fantastic position to be in, as therapies such as reiki, acupuncture, reflexology and cranio-sacral in particular, and also programmes such as yoga and tai chi, are often immensely beneficial to people living with these illnesses. Good mental health support is essential when it comes to 'thriving, not just surviving' with these illnesses, which brings us neatly to...
OMG we did it!! It took some persuading as Charles Linden, devisor of the Linden Method for Anxiety Recovery, is a popular man - but he has now agreed to do a live, public Skype session in the evening of May 14th 2018. This is during Mental Health Awareness Week. The best news of all is that Charles is doing this for FREE! SO THIS TALK IS ALSO FREE to anyone who would like to come and listen to his presentation, and also have the opportunity to put forward any questions. Skeptic or believer, please come - though tickets will be limited. We will be expecting to have representations from the healthcare community as this is important and very positive information regarding the various manifestations of anxiety disorders. It is simply too good a chance to miss. More info on Charles will be coming in future blogs and fingers crossed we can get all the logistics of this event to run nice and smoothly!
Get ready for Tales of the Unexpected : Healing Against the Odds part II... Coming to a Noa Bakehouse near you soon! July 22nd 2018 to be precise and this has quite unexpectedly ballooned into something of an international natural healing event! We have now had queries from no fewer than 9 people from as far away as America, Australia, Denmark, Sweden, Holland and England, all wishing to attend - and ALL of these people have either used a strict plant based diet to recover from autoimmune arthritis, or are in the process of doing so! It is both a little overwhelming and very nice, to know that a little charity event based in the Isle of Man managed to become such an international hit! Currently we are keeping the format the same as 2017 - two speakers in the evening of the 22nd. However, if everyone does make it, including Clint Paddison himself, ex RA sufferer and devisor of the Paddison Programme for Rheumatoid Arthritis!!! We are sure it will evolve into a few separate events/ workshops.
We wanted to focus on women this year. Our previous speakers were both men and there was some question as to whether or not men recover easier than women (who are also more likely to be affected). Our invited speakers therefore are presently:
26 year old Katy Hoogemdam from America, who has lived with RA since she was 10 months old and is just remarkable. Since embarking on the Paddison Programme 300 days ago (today, so I'm told!), she is doing brilliantly, off all the pain killers she had been taking her whole life and now turning her attention to shifting the Enbrel. In 300 days Katy has also attended close to 300 yoga classes. She has video footage of her whole life with JIA/RA and is just wonderful. She CANNOT be missed.
Our second booked speaker is Iida , a Swedish lady from London! Iida's story is remarkable because she not only used plant based eating and aerobic exercise to recover from RA, but went on to a baby - flare free! Having a baby with RA can be a very tricky business, so Iida's story is beautiful. And hopefully we'll get to meet her baby too!
Please note: Without Wings is firmly committed to researching natural healing methods that we have seen to have consistent, positive results. However, we also respect that attempting to heal naturally is not easy and is therefore not for everyone. It can also be a stressful topic for some. This information is therefore for people who find natural healing an important part of their coping strategy. Without Wings provides compassionate support for everyone regardless of how they choose to deal with their diagnosis and respects the individual decision. We ask that others do the same. These illnesses are also volatile and can be unpredictable. No natural healing attempts should ever be made without full consultation with your healthcare provider.
Lastly, thanks to all the funding we have recently received, we are hoping to finally overhaul our literature and website. It has been brought to our attention that we aren't coming up in search engines and the 'weebly' part of our website has confused a few. Until now we have not spent a penny on the website - hence these issues, and have also spent very little on our literature as most of that was also free. We are therefore looking at how to make our website more accessible and how best to present our literature so our services are clear. Right, my hands are gone. Laters everyone!
***DANCE OF THE DEVIL'S SNUFFBOX FULL REPORT HERE!***
A huge thank you to every single person who supported Without Wing's first year celebratory fundraiser in conjunction with Manx Litfest!
Dance of the Devil's Snuffbox was a MASSIVE success and raised just over £600 for Without Wing's the Manx Autoimmune Arthritis Trust.
***THANK YOU THANK YOU THANK YOU!***
***Also featured here: Forthcoming mooted events and projects!***
Thank you so much to everybody for helping to make Without Wing's first anniversary celebratory fundraiser such a huge success! Due to our initial plans for a different combined Litfest event falling through at the last minute, Dance of the Devil's Snuffbox was organised in barely six weeks. We are therefore extra specially grateful to all those incredible people - performers and audience who turned up - and dressed up! To Valerie, Ken and Edwin at the Laxey Working Mens Institute - who went above and beyond expectation to help us set up AND tidy up, to Manx Radio and Isle of Man Newspapers for all their support, Ramsey Press for all their help, Han-FX and JorDMC for lending us equipment and to the Manx Cider Co. for donating 36 pints of FREE CIDER. Everyone really chipped in to help create a memorable and enchanting evening.
First up: funds raised! In total over £750 were raised via ticket sales and the auction of framed literary works. Four items were auctioned and many, many thanks to Janet Lees, Kim Kneen, and Georgia Lisette for their beautiful additions. The auction alone raised £130 with some exciting bidding wars!
Initially it had been agreed to split all profits between Manx Litfest and Without Wings. However, Manx Litfest have very kindly insisted that Without Wings take the lion's share - something in the region of £600 after deduction of venue hire! They didn't need to do this, as the entire event was organised on the back of the fantastic venture that is the Manx Litfest. This charity has worked incredibly hard to promote literature on the Island and to bring out local literary talent. We really hope they were proud of what they saw last Saturday night as many of the performers met, either directly or indirectly, via Manx Litfest. So thank you SOOOOOO much guys, especially John Quirk :) You are wonderful!
As for the performances! Well we can't quite capture the atmosphere for those who missed out, but imagine a cosily lit room with candlelight, chocolates and a cabaret feel, plenty of fantastic masks and costumes (performers and audience!), a sea themed backdrop for the first half, created by Kim Kneen, and a compere - performance poet, Bill Stutt, dressed up as something truly terrifying... All leading into the most exquisite accapella sea shanty by Simon Smart - who impressed us all, not just by his haunting singing, but by his fantastic Babbadook outfit - complete with Top Hat. It is very possible that despite the utter brilliance of every single one of the acts, he stole the show!
Simon was followed by a 'lightly' macabre first set. This included a creepy, cane thumping tale - The Hairy Toe, by storyteller and organiser of 'Story telling Club', Susurro Rosso, Kim Kneen's prize winning 'Buitcherhagh' (witchcraft) flash fiction, and spooky poetry and flash fiction works by another international prize winner writer, Janet Lees. These were read by Georgia Lisette, as Janet had been unable to attend at the last minute due to family illness.
Next up, we were onto the poetry! These included hilarious tales of teenage witches and society bun fights by Poetry Slam winners, 2015 and 2016 respectively - the virtuosic sisters, Lisa Creighton and Jennifer Davies. Stephen Goldsmith from 'Short Stories and Ludicrous Tales' also told a collection of short pieces that were both dark in tone and very funny, Bill Strutt wowed us as always with his performances, both on a poetic reflection on insomnia, and then a story about a night out in Doolish (yes - very dark indeed!), and Georgia Lisette, his fellow Feral organiser and 2013 AND 2014 poetry slam winner, performed her poem 'Romero' brilliantly and completely off by heart - all 6 minutes of it! And yes, the Ta Ta Taboo by Jacqueline Morrey Grace also made an appearance!
For the second set, the dark sea themed backdrop vanished and was replaced by a circus big top, the masks came off and the fun stuff began. Ben Hickey performed his story slam winning piece 'Endurance' and Stephen also performed some ridiculous stand up comedy! Both these performances had everyone in stitches and fitted the atmosphere perfectly. Next up was Kim Kneen with her grisly circus themed: 'Top Billing,' to some light musical accompaniment, and then we were onto 'Cheese cake Wars' - a sparring of poems by Georgia and Bill about... cheesecake! These were followed by a daft piece of beat poetry from Jackie, with Jordan Preece accompanying on beat box, and then a wonderful collaborative piece - The Last Biscuit, by sisters Jennifer and Lisa. This had been written especially for the occasion! Simon then treated us to another song before Matt Kelly arrived on the scene, strummed a few of his own songs and then roused everybody into a rowdy rendition of 'The Laxey Wheel' - a perfect way to almost end apart from... We couldn't allow people to go home without the opportunity to dance off all the free cider and adrenaline, so local rap wordsmiths Han-FX and JorDMC (Keiran Hannifin and Jordan Preece), therefore took to the stage with their band and did a full set! There was LOTS of dancing!
It was truly a wonderful night. We really hope all the coverage we received helped raise awareness of these illnesses and the work of the charity, as well as funds - which of course, was what the event was really about. We've had a huge increase in website hits since the event and enquiries regarding our services, so it seems our efforts are paying off. We just about managed to fit everybody in last Saturday too - so ticket sales obviously just about hit the correct mark, and people are already asking when we are going to do it again! So watch this space!
Regarding the on-going work of the charity! Next up will be our education campaign. This is now going to be two-fold. Firstly, we are commissioning posters by local artist, Alice Quayle, that we want to reflect YOUR voices! These will be quirkily designed descriptions of what life with these illnesses is really like - the positives as well as the negatives. We then plan to run an awareness campaign and have these posters displayed in different places over the Winter. We are currently looking at libraries and the hospital for venues. ANY FURTHER IDEAS OF OFFERS OF CONTRIBUTION PLEASE GET IN CONTACT! The other part of our campaign will be a drawing up of our precise services. These will be delivered to all GPs and also physical rehabilitation centres and complementary health care practitioners. It is via these people that the services we are now in a position to offer, can be most effectively promoted to ensure that our money is spent where it is most needed. We hope to be running this campaign with the support of one of the MHKs. YOUR VOICES ARE VALUABLE. Please let us know as soon as possible if you would like to be involved.
2018! We will shortly be drawing up our 2018 calendar. So far this includes : a complementary health fair in March (details coming VERY SOON!), a JIA awareness raising day in May, mental health and chronic illness awareness possibly also in March AND! On July 22nd 2018, we are very excited to say that we are hoping to be welcoming two more speakers who have worked hard to recover naturally from these illnesses via diet and exercise! We are currently waiting on confirmation but we are looking at hearing from two lovely, lovely young ladies - as promised! To hear natural healing from a female perspective. Both these ladies also use the Paddison Programme for Rheumatoid Arthritis. Danny and Andy are also planning to return, but in a supportive role and just because they fell in love with the Island (naturally), and there is one more very special person who is very very VERY keen to come but can't commit just yet... Come on though Clint Paddison! The Isle of Man needs you! If not next year I am SURE we will get him over at some point!
So all in all, very busy. Hopefully one day people with these illnesses on the Isle of Man will be getting diagnosed earlier, feel better understood, more positive, better supported, and receiving the help they need and deserve.
***A HUGE THANK YOU TO ZURICH and their incredibly generous dress down day donation!***
These funds will go directly towards our counselling initiative.
Thank you, thank you!!!
***Without Wing's first anniversary celebration in conjunction with Manx Litfest:***
Dance of the Devil's Snuffbox: October 21st Laxey Working Mens Institute 8pm.
GET YOUR TICKETS NOW BEFORE IT"S TOO LATE!
Priced £10 these are available from the link on our homepage or email firstname.lastname@example.org. There are also a handful behind the counter in Noa's Bakehouse. Please come and be entertained, as well as in support of two hardworking charities. Set to be great fun and featuring a ton of prize winning local talent and other, quirky wordsmiths
***October 12th : Arthritis Awareness Day - TODAY!***
Read a little below about our up and coming autoimmune arthritis awareness plans below.
Featuring quotes from sufferers of autoimmune arthritis.
If you would like to get involved in our Winter awareness campaign, please get in contact and we can add you to our Facebook Focus Group!
First up, thank you Zurich! What a fantastic donation! These funds will go directly towards our counselling initiative which we hope to develop even further next year. Watch this space! Currently we have a fully funded counselling scheme for anyone struggling with autoimmune arthritis. Please do not suffer in silence. Contact us today! We also provide financial help towards any complementary health or physical rehab programme with an accredited practitioner. Looking after your mental and emotional health is not a secondary consideration with these illnesses. It directly impacts your physical health and there is a whole wealth of studies out there regarding the importance of support and keeping positive when it comes to keeping these illnesses licked!
NEXT UP! HAPPY ONE YEAR ANNIVERSARY TO US! Without Wings received our charity number October 6th 2016 and our bank account in the December. It's been an incredibly full on year. We've set up this website, run awareness campaigns, given individuals a chance to share their experiences for the benefit of others, had speakers over regarding natural healing, set up a counselling scheme, developed partnerships with like minded charities, and other organisations, such as the NSC, who can offer physical help. We've also highlighted the much overlooked issue of mental health and chronic illness - a 'service gap' currently within our NHS, and raised enough money so far to fund our ventures.
It's been busy and quite exhausting, but given the fantastic feedback we've had and the tremendous amount of support, we believe it's been worth it. Next year will see a complementary health fair, JIA awareness day and yet more exciting speakers! We really hope that through all our efforts we are finally opening the door to people living with these illnesses. In doing so, we hope they can get the support they need, in recognition of what it really is like to live with autoimmune arthritis.
A huge huge THANK YOU to everyone who has helped us raise money these last 12 months. We are determined to ensure that every penny is spent wisely within our remit of awareness, information and compassionate funding.
Our first anniversary 'party' evening: DANCE OF THE DEVIL'S SNUFFBOX will take place October 21st, Laxey Working Mens Institute, 8pm. Get your tickets now from our homepage, Noa's Bakehouse, or by emailing us, email@example.com Tickets are limited! We're running the event in conjunction with Manx Litfest, a super charity who, since 2011, have done so much to encourage literary ventures on the Island. Featuring many prize winning local writers and a few quirky wordsmiths we've picked up along the way, this is a celebration of how stories can transport anyone to anywhere at anytime, regardless of health or mobility. We do hope you can come and join us.
October 12th is World Arthritis Awareness Day! So what is arthritis? Or rather, what does arthritis mean to people who have to live with it everyday?
There are actually hundreds of different types of arthritis. Osteoarthritis - which affects approximately one third (8.75 million) of people in the UK over the age of 45 and is non-autoimmune, is the most common. It's also the type of arthritis that everyone thinks of when the word 'arthritis' is mentioned - a disease commonly associated with ageing (though it can strike younger people too) and related to wear and tear (though again, not always).
Autoimmune arthritis however, is completely different and is a blanket description for related diseases whereby the immune system attacks the joints. These illnesses are therefore a manifestation of the same problem that causes such diseases as type 1 diabetes, MS and Crohn's for example. In fact, people with autoimmune arthritis will often have other autoimmune illnesses.
Here are a few facts and figures:
Rheumatoid Arthritis affects around 400,000 people in the UK, Ankylosing Spondylitis about 120,000, Psoriatic Arthritis somewhere between 50,000 and 150,000 (more on this), Lupus around 50,000 and JIA 12,000 children. Autoimmune arthritis can also be a secondary symptom of other autoimmune diseases, especially those of the gut. All these illnesses most commonly first strike people of working or child bearing age (JIA is a term for arthritis presentation in under 16s), can be volatile and difficult to manage, are systemic (in that they can also affect the skin, hair, nails, eyes and internal organs - as well as up to every joint in the body), are cited as 'progressive and incurable' and require 'aggressive' lifelong medication. Early medical intervention is essential with these illnesses which is why raising awareness is crucial! All too often (yes, even in the Isle of Man!) symptoms are not picked up early enough - especially when there is no rheumatoid factor present. Later diagnosis can mean longer recovery time and more aggressive medication. If left untreated, severe cases can and do lead to organ failure and death.
Many sufferers of these illnesses therefore dislike, or even discard the term 'Arthritis' - which means 'joint pain,' arguing that it simply does not convey what people living with these diseases often have to deal with on a day to day basis. In addition to this, due to the complex and overlapping nature of autoimmune problems, some people with autoimmune arthritis don't even have a proper diagnosis (hence why figures on PsA are so vague). In these cases the term 'arthritis' to describe their illness can be particularly confusing and is desperately inadequate.
Over the Winter, Without Wings will be running an awareness campaign regarding autoimmune arthritis. This will be in the form of commissioned posters by a local artist, which we hope to display on a rotational basis around the Island. WE DO WANT TO GIVE THESE POSTERS A POSITIVE SLANT, as well as the facts - to show that life goes on despite these diseases, and how tough people can be. Putting a positive face on chronic illness is an important aspect of Without Wing's ethos.
If you think you have something to say and would like to be involved, PLEASE GET IN CONTACT! We would love to add you to our Facebook focus group so we can get the ball rolling. This is YOUR charity. Let your voice be heard! In the meantime, we have compiled a few quotes from all the wonderful people who very very kindly submitted them, regarding what living with autoimmune arthritis is really like. They're a little hard hitting, but it's what people gave us so here goes. All names have been changed for anonymity. Have a great day, stay well and remember to get in contact if you think we can help!
"During my worst flare I was in AGONY. RA pain is like nothing on this earth. It paralyses the joints to such an extent that trying to move them is like trying to snap a normal joint backwards. It radiates everywhere too - every nerve , every muscle, every ligament. I felt like I was living in a body made entirely of smashed glass and every movement was excruciating." Victoria. PsA
"Having someone with a firm handshake shake my hand or someone give me a strong hug, is enough to ruin my whole week. Not just from a physical point of view, but because not being able to cope with something so 'normal,' makes me feel like a failure." Ted. RA.
"RA constantly disappoints. Just when you think you're making progress, getting stable and healing, inflammation pushes back again. The path to wellness through the mountain is an extremely narrow one and it takes extraordinary diligence and persistence to get confidence and control over this terrible condition." Clint Paddison - ex RA sufferer and devisor of the Paddison Program for Rheumatoid Arthritis - thanks Clint for submitting this for us especially <3
"I've lived with RA most of my life. It's an invisible, destructive disease that secludes us and does way more damage to us than just our joints. Those with RA suffer in silence." Kathy. JIA (now RA)
"Keep life simple, happy and as normal as possible." Debbie, mother to child with JIA
"My hands and fingers experience stiffness and swelling all the time, sometimes my feet, knees and ankles too, and some days I'm so tired. But I keep functioning. I consider myself in the early stages of this illness. If I apply a strict diet and rigorous exercise, I can contain it, but deteriorate if I don't, which is a problem because it's hard being so disciplined." Vicky. RA
"The medication made me so sick. My hair began to fall out too. Where do you go from there?" Di. PsA
"I was diagnosed at at 40. I lead half a life but with twice the strength." Karen. RA
"RA is super super hard to heal and get better from. It deforms a hand, bends your elbows, stiffens up your hips and swells up a knee. The fatigue can be so bad you have to lie down and wait, sometimes hours. I am strong, I am healthy. I have RA." Ella. Seronegative RA.
"Most people wouldn't even consider moving with the pain levels I deal with on an everyday basis. I do though, because otherwise I would have no life at all. I have to prove to my pain that I'm stronger than it is." Marjorie. RA
And a quote submitted to us, also from Marjorie, from an internet meme:
"Arthritis is not just a problem with my joints. It's the sleepless nights, the loss of morale, the chronic fatigue, the depression, the struggle to walk and exercise, the 'but you don't look ill', the 'you're too young for arthritis', the missing out on parties, the staying sober, the knowledge that there is no cure, the injections and blood tests and scans and drugs, the missing out on things with your friends, the medication which makes you sick, the tears and stress, the anger you feel when you can't do simple tasks and of course the indescribable pain. To everyone out there fighting arthritis, you are so much stronger than you know."
***Thank you so much Tracy Southern! Over £71 raised at her fascinating talk
our Australian Bush Flower Remedies!***
***The role of Complementary Medicine in supporting
physical, emotional and mental health ***
***Without Wing's First Anniversary Celebration Preparations have begun!***
"DANCE OF THE DEVIL'S SNUFFBOX'
Will take place Saturday 21st October, 8pm, Laxey Working Men's Institute.
***Tickets are £10 and available via the link on our homepage.
GET YOURS SOON AS THEIR IS LIMITED AVAILABILITY!***
For more info.... READ ON!
First off, a huge thank you to Tracy Southern, not just for the money she raised for Without Wings, but also for the lovely, informative evening regarding homeopathy, in particular, Bush Flower Remedies.
Tracy, who was first diagnosed with Rheumatoid Arthritis aged only 13, turned to homeopathy during her 30s. Finding it of immense benefit, both physically and emotionally, she decided to train herself and is now a fully qualified practitioner. During the talk she told us all about the various essences and how they can help to balance the person holistically, as well as giving us some of the history behind the development of Bush Flower Remedies.
Emotional and mental health is a blurred area when it comes to chronic physical health problems. It is also an area that falls through a loop in the NHS, because people who struggle with their illness are not, of course! Necessarily mentally ill, but often do feel stressed, isolated, or are in pain and discomfort. Talking therapy can always be useful - especially during diagnosis or when going through a particular illness related challenge. Sometimes, however, people just need that extra boost, or level of support to help them cope with the day to day grind of living with pain and mobility issues.
This is where complementary therapy really comes into its own. Reiki, acupuncture and massage have all been proven to have pain relieving benefits, whilst therapies such as homeopathy can also help to balance the system from a holistic point of view. Then of course there are mind-body 'therapies' such as yoga, tai chi and of course, meditation. Not only can these these be hugely helpful to people living with chronic health problems, but they can also serve as a great preventative, so helping people avoid later, more serious secondary mental health issues.
Without Wings offers compassionate and essential funding to people living with autoimmune arthritis. This includes providing funding towards complementary medicine treatment plans. If you feel this may be of benefit, please do not hesitate to drop us a line and we can discuss this further. If you are a practitioner, please do get in contact too regarding our complementary health day next Spring. (Any funding awards are at the discretion of the Trustees and dependent on funds).
DANCE OF THE DEVIL'S SNUFFBOX! What is it????
Can it really be that Without Wings is nearly a whole year old? It seems impossible! A year ago, we provisionally decided we would run some kind of variety performance for our 1st anniversary, then changed our minds and decided to do a ball, then the ball looked too expensive... and so... It's all a little last minute but we are SO EXCITED to say that to celebrate our 1st anniversary we have joined forces with the wonderful Manx Litfest to bring to you,
'The Dance of the Devil's Snuffbox! An atmospheric evening of disembodied song, macabre rhymes, rap and stories, a chance to dance and singalong! Bring drink and make merry, dress up or dress down, wear hats, masks or costume, but come and have fun!
An off beat alternative evening of literary performance, storytelling and song, set to the backdrop of prize winning writer Janet Lees' photography. Also to include an auction of framed works by local writers. The funds raised by this event will be split equally between Without Wings and The Manx Litfest.
We are SO grateful to all the performers who have agreed to take part at such short notice. These include: international prize winning writers, Janet Lees and Kim Kneen, local rap superstars, Han-fx and Jordi-MC - who will perform both acapello and later, as a band, for anyone enthusiastic enough to stay on for a dance! 2014 and 2015 Litfest poetry slam winner, Georgia Lisette, alongside her Feral co-host, Bill Strutt, Stephen Goldsmith from Ludicrous Tales and Short Stories, Peto Su Rosso from Story telling, Simon Smart with his haunting songs and Dilys Sowery and Mel Keig to lead a debauched singalong at some point. We are still awaiting a few confirmations, including, hopefully, either the winners or runners up of this year's Manx Litfest Short Story and Poetry slams - taking place THIS WEEK! And a couple of other exciting names. The theme is loosely based around story telling of a slightly macabre, humorous or atmospheric nature, but is basically just set to be a fun and hopefully, very entertaining!
Please do come and support us on the 21st if you can. It's been a fantastic year and we'll do a 'looking back' blog next month. Providing compassionate support and funding to people living with autoimmune arthritis is such a huge deal - as it is with any chronic health problem. We really hope people are beginning to see that we can provide support where there is currently a service gap in our NHS. Our aim is to ensure that we provide as much awareness, information and compassionate funding possible, so that no one on the Island living with either the primary or distress of autoimmune arthritis or secondary complications, ever need feel isolated.
Have a great month! Looking forward to seeing people at the Dance of the Devil's Snuffbox!
***Homeopathy talk: 12th September by Tracy Southern 7pm St Paul's Hall, Ramsey (small hall).***
***Event is free to attend but there will be a collection bucket in aid of Without Wings.***
***Calling all complementary therapists***
***Tales of the Unexpected: video update***
***LOCAL NATUROPATH, JAMIE WRAY: ARTICLE ON MOVEMENT!***
Hello everyone! We hope you are having a lovely summer, despite the fairly cold weather (at least it's not raining??) And well done if you've managed to escape to warmer climes! Just a couple of updates before we launch Naturopath, Jamie Wray's very interesting article regarding movement.
Firstly, the lovely Tracy Southern, local homeopathist, will be hosting a talk on Tuesday 12th September 7pm at St Paul's in Ramsey. The event is FREE to attend but there will be a bucket collection in aid of Without Wings! Thank you so much Tracy :) This is very kind. We are also very pleased to say that Tracy, who was diagnosed with JIA in her early teens, will also be featured in our Inspirational Stories in the week leading up to the event. We have received so much positive feedback about these stories so are always grateful when people have something - both positive and 'real,' to share. They serve as a fantastic reminder that life goes on, as well as providing useful tips and enabling others to realise they are not alone.
Secondly: Without Wings can provide funding for both essential and compassionate services - services that enable people to feel better supported and therefore better able to cope with their illness. This of course can have the added benefit of reducing stress and therefore symptoms! As well as our counselling initiative - which we prioritise to fully fund, we are also therefore committed to contributing towards the cost of services that provide essential emotional support - such as complementary therapy. To highlight this, and on the back of the success of our last event, we are planning a complementary taster day late Winter/ early Spring. If you know of anyone who would like to promote their services at this event, please get ask them to get in touch! This is our first shout out!
Thirdly! Apparently there is a video of our event! Tales of the Unexpected: Natural Healing Against the Odds. We hope to have this loaded either here or on our Facebook page (or both!) by early September. We will also chase up Danny and Andy for their presentations and load these in September too
Fourthly, Jackie's swim to the Calf in October will not be happening as she is still not well enough. :'( This will happen as soon as she is back in action - even if the water is freezing.
And FINALLY! Jamie's article! We really hope you find articles such as these useful and informative, and thank you SO MUCH to Jamie for providing this information for us. Enjoy. :)
The Importance of Movement
By Jamie Wray NHF Dip
Facebook or Twitter (@GreenMoonJay)
Most people would acknowledge the importance of exercise, but for people with systemic movement disorders such as autoimmune arthritis, the often heard call to ‘exercise more,’ can be a frustrating issue. Or, they might manage their daily dose of exercise only to collapse into a chair for the rest of the day - a habit in which they aren’t alone. Most people in Western societies, whether movement affect or not, understand the importance of exercise. What we don’t tend to hear so much about, is the importance of just plain movement.
In general, yes, we all know movement is vital. The impact of walking for example helps strengthen our bones. It does this by both encouraging our osteoblasts to produce more bone and by moving our lymphatic system. This, in turn, helps us maintain our muscle mass. Clever eh? Yet it’s very easy when you struggle to move well, to choose not moving, or moving as little as possible, as the easiest option.
With autoimmune arthritis, there might be times when not moving much is genuinely the only option - for example, if you are experiencing a major flare-up. However, if you are working closely with your main health care practitioner, it would be hoped the worst of this can be swiftly brought under control. After this point, as well as looking at your exercise regime (which should form part of every person’s coping strategy when living with these illnesses), just thinking about how you move in everyday life can be immensely beneficial. This is because significantly reduced movement patterns over the long term cause major stress to the whole body, resulting in issues such as secondary dysfunctional movement patterns*, and adaptive shortening. The long term effects of not regularly putting your body through as wide a range of movements as possible, can be problems such as osteoarthritis, injury, weak bones, weak muscles and repetitive strain.
A good example of adaptive shortening is prolonged chair sitting. Basically, the body says, ‘if you want to sit like this all day, I’ll help you do it.’ Everything is then moved to accommodate this. The unfortunate repercussion is that this affects the way all of the joints are lined up; sitting on a chair day in and day out, puts the knees at a 90 degree angle, which causes the calf muscles to shorten. Not only does this result in tightness when standing, but it can put the person at greater risk of ankle injury.
One of the best solutions to this is to spend more time sitting on the floor. However, as floor sitting is not always possible with autoimmune arthritis, a useful, or possibly even a rehabilitation ‘progress to floor’ aid, might involve the use of a large pilate’s ball from time to time, instead of a chair. Easily available from Amazon, these can slowly enable you to move your knees out of that 90 degree position, so articulating your joints in new positions, providing relief from your usual sitting position, stimulating different muscle groups and actually encouraging you to stretch. In addition to this, forcing yourself to simply get up and move around, rather than succumb to the lure of the chair, will protect your body even further from the secondary effects of autoimmune movement disorders. (Once again, these are not necessarily recommendations during times of significant flare).
Counteracting the effects of prolonged sitting or periods of little movement, is not therefore just about exercise, and crucially, even exercise can often involve limited movement on a repetitive basis. Moving more is more about finding ways in everyday life to get up and about, to move more frequently and to use as much of the body as possible with a wide range of movement. One of the best ways to do this outside of the home, is to get out in nature.
There are many reasons why moving in nature is so good for people with chronic conditions. For example, getting out and about is going to naturally reduce your stress levels, especially if you’ve been spending a lot of time stuck inside stressing about what’s going on in your body. One of the issues with stress is that it has now been shown to change the genetic expression of your immune cells, making them more inflammatory, thus exacerbating chronic conditions such as autoimmune arthritis. (In some cases, it has even been argued that they can even be the primary cause.) By being out in nature, getting fresh air and some negative ions into your body, especially amongst trees or at the beach, and generally ruminating less, you will reduce your stress levels and therefore the inflammatory effect.
There is, however, a hidden benefit to moving more in nature: Walking in nature will naturally challenge your muscular-skeleton system and put it through a much wider range of movement due to the uneven terrain. Once again, if you are very stiff or have been fairly sedentary and want to start moving more, go slowly. Maybe choose somewhere like a flat, sandy beach. If you manage to go barefoot here, you will get additional benefits as you can really consciously work on moving all 17 joints between your ‘heel strike’ and ‘foot flat’ (where the ball of the foot meets the ground). This has additional benefits for people with autoimmune arthritis, as moving the feet joints can play a crucial role in keeping the feet mobile. Barefoot in general, is also a fantastic way of really ‘waking the body up.’ Most shoes tend to be 12mm higher than the forefoot, which causes us to heel strike (so increasing heel pressure). Mules and flip flops can cause stress through the way we need to ‘grip’ them to keep them on. This too creates uneven pressure. Our feet are incredibly sensitive. Through going barefoot we can help stimulate our entire muscular-skeleton system! Try it and see for yourself - muscles will wake up that you didn’t even know you had!
If you are mobile enough to get off the beaten path, for example into the beautiful glens we have here on the Isle of Man, you can really work on expanding the physical stimulation you give your body as you will move even more as you adapt to the more challenging terrains. Once again, if you are new to challenging your body, take it slowly. It is also important, especially if you have issues with your hips and knees, to ensure when walking on uneven ground, that you ‘push off’ with your back heel, rather than the common method of pushing forward with the ball of the front foot. This latter technique puts significant stress on the knee joints.
Finally, it is not only the lower body that will benefit from a wider range of movement. Once thought about, it can be relatively easy to incorporate more expansive movement into the lower body - as often the psychological barrier of moving whilst uncomfortable, or in pain, is the real issue. The upper body is easier to overlook. Rheumatoid arthritis often affects the hands. Whilst walking it can therefore be helpful to exercise your hands and wrists, for example by making fists (as much as possible), or by holding each hand out flat and gently pushing them up and down into 90 degree positions. You can also experiment with stretching your hands and fingers out wide and then one at a time, bending your thumb and each finger into your palm; making a ‘panther claw’ by bending all of your fingers and thumb until they touch. To create more load on the arms and shoulders, especially if you are walking amongst trees, it can be a good opportunity to grip branches. The main thing is to start thinking about how to load your upper body more in none repetitive motions.
In conclusion, in Western society, just as we often tend to compensate for eating poorly by taking supplements, we also often tend to compensate for everyday poor movement patterns by taking relatively short, and very often repetitive, exercise ‘supplements.’ For people with movement disorders such as autoimmune arthritis, this can become an even more serious issue, possibly leading to secondary problems and further/future disability. It’s therefore important to be reminded of the value of slowly building more, and varied movement into everyday life and to consistently begin to build up a repertoire of movements that work for you. Most importantly, more movement can make people feel better about themselves as it will give them better control over how their body moves and works.
For more information about ‘Nutritional Movement,’ try reading Katy Bowman’s book of the same title.
* (SCMPs - these are the body’s attempt to compensate for a mobility restriction in a certain area.)
***Information about claiming benefits is now on our Information Page***
***Thank you to the lovely Hann-FX and Jordy-MC - talented, local hip-hop outfit, who donated a portion of their busking money to Without Wings***
***Tale of the Unexpected: Healing Against the Odd - FULL REPORT BELOW***
***Without Wing's ethos is compassion and respect for people living with these illnesses - hence our counselling and home help initiatives, and the whole purpose of the charity's existence. The topic of natural healing, especially within the emotive arena of food and movement can, for some, be stressful or upsetting. Without Wings respects this. Inspirational talks such as these do not necessarily reflect the views of the charity. We have designed them for those sufferers - or their loved ones, for whom natural healing plays an important role in how they deal with their diagnosis, and who want help sifting through and exploring the conflicting information.
Without Wings accepts no responsibility for how people choose to manage their condition as a result of these talks. We also strongly advise that if you choose to follow any such regime, you do so in close partnership with your healthcare practitioners :) ***
Without Wing's first ever big event last Sunday was a HUGE success! Thank you so much to everyone involved who helped us with the organisation, especially Hann-FX and Jordy-MC on amplification, Heidi Danaher on Thermomix demonstration and smoothies, and Emma Lynch from Flour Power, the Vegan Bakery in Port Erin. All these services and the food were provided free of charge. Thanks also to the wonderful Noa Bakehouse for providing such a great venue, to our speakers: Danny Preil and Andy Swarbrick and our wonderful audience - the atmosphere felt really positive and friendly. This was a real privilege to see given that these illnesses can be incredibly challenging.
The venue was packed out - far exceeding our expectations, with something in the region of 90 tickets sold. We hadn't anticipated it being such a huge success and hope everyone eventually found somewhere to sit! It was brought to our attention that for future events of this kind, people who are really suffering need access to more comfortable seating. This request has been noted and in future - if we use Noa, which we would like to do, we will reserve comfortable seats for people who need them.
There is too much to report here regarding the actual contents of the talks. For those interested, the event was videoed and we are hoping to attain a copy. Danny and Andy have also offered to forward their power point presentations which we will load somewhere on the site in the near future. Here is a basic synopsis:
1. The programme our speakers follow is a low-fat plant based diet that is designed to heal the gut. It was developed by Australian RA sufferer, Clint Paddision.
2. Intricate record/ chart keeping and food testing helped with recording progress, identifying trouble foods and/or external stressors. These charts also acted as important motivators.
3. Both speakers experienced significant additional benefit when they added in intense aerobic exercise. For Danny this has been swimming. For Andy, bikram yoga.
4. There were set backs for both during their healing. Both also worked in close partnership with their hospital departments and closely monitored their blood test results. This is not a programme that is against medication. Its primary purpose is to lower inflammation in the body and meds are recognised as an important tool during this process. Danny and Andy have only lowered their medication when it was agreed safe to do so by their rheumatologist. They continue to monitor their health and blood tests.
5. Neither speaker claims to be 'healed' or 'cured'. Both are off medication, symptom free and now eat a wide range of plant based food, but they still monitor their bodies and treat them with respect.
6. This is a holistic approach that involves not just food and exercise, but minimising stress, obtaining correct medical support, goal setting, constant exploration of what works and what doesn't, and motivational chart keeping. A support system is also essential.
Highlights of the evening!
Andy's bikram yoga demonstration! At 65 Andy has suffered from various forms of arthritis : psoriatic, rheumatoid and also osteo, for over 40 years. Prior to changing to a low fat, plant based diet and attending 90 minute bikram yoga classes (which he regularly does back to back - once for 4 classes in a row!) He was wheelchair bound, waiting for knee replacements and in the process of purchasing a motability scooter. He also has extensive damage in his right elbow. After seeing photographs of him bed and wheelchair bound with huge swollen feet, we watched a demo of eagle and balancing stick yoga poses. He also showed us his newfound ability to kneel - something he hadn't been able to do for 40 years.
Danny's stool discussion! We bet that when Danny was a child and asked what he would like to do when he was older, he never said "stand up in a packed room and discuss my bowel movements!" Yet that was precisely what he did last Sunday! Fun - but intriguing too - seeing lab results that provided first hand proof of just how much bad bacteria he had in his gut when he was very ill. We were also blown away by how well he managed to deliver his entire presentation in English! A mighty feat!
Without Wings is very grateful to all the people who filled out questionnaires, and/ or came to speak to us at the end. Andy has said he's happy for us to hand out his email if people want to know any more so please message us privately if you would like this.
Here's a breakdown of the 24 completed questionnaires we received:
14 responses were from people with some form of autoimmune arthritis, 4 were from people supporting loved ones, 6 were from people interested in prevention or general health.
Every single response said the event had been helpful or inspirational and that they would definitely like more events of this kind. All comments were positive with one request for more comfortable seating for sufferers and another request for audience questions to be repeated - so sorry! In future, yes, we will keep this in mind. There were extra positive comments regarding the food and also two offers of help - thank you very much to these people, we will definitely be taking you up on this offer in the future. We will also begin to send our blog posts out via email to people who left their addresses, so everyone can be kept informed about future events.
Cost: 19 responses said £12 was about right, 5 said it was 'a little expensive'. This has been noted. We felt the cost was about right. However, we had no idea the event would be so well attended - £600 was needed to cover our speakers' travel costs and venue hire. Ticket costs were based on what we thought to be a rather hopeful prediction of 50-60 attendees. Selling the tickets via Eventbrite to give people easy ticket access also incurred a cost which the Trustees had agreed was acceptable. In the end the event cost the charity nothing and made over £300. This will now go towards our counselling initiative. As such talks are part of providing positive information, it might be acceptable that future events can be subsidised for people living with these conditions. This is to be discussed by the Trustees, but will also depend on funds as currently our counselling and home help initiatives are taking priority.
Our guests had a fantastic time and absolutely loved the Isle of Man! They have actually asked to come back for our next event of this type - but in a supportive role. We are therefore currently looking into holding a similar talk next year featuring female 'recoverers,' to provide a perspective on natural healing from a women's point of view. We are also considering other compassionate and positive events for sufferers and their loved ones, such as a Complementary Health for Autoimmune Arthritis day. This would be subsidised for sufferers.
Many thanks once again to everyone for your amazing support. If anyone has any good photographs of the event, we would love to see them. Ours will be launched on the homepage.
***This Sunday, July 23rd, 7.30pm at Noa Bakehouse***
Without Wings will be hosting our first major event...
Tales of the Unexpected: Natural Healing Against the Odds.
***Tickets still available on our Facebook page***
Or just turn up and pay on the door.
Natural healing is a sensitive topic. There's masses of information available nowadays, but with so much of it being confusing and conflicting, those who want to give it a go often stumble at the first hurdle. Without Wings therefore decided to make it our mission to source real life success stories from people with proven results. Incredibly, we found that we easily sourced not just one, but TWO speakers, who, crucially have both recovered from Rheumatoid and Psoriatic Arthritis, USING THE SAME PROGRAMME! As ex-sufferers, Andy Swarbs from the UK and Danny Preil from the Netherlands, will be with us this Sunday, we therefore thought what better way to introduce their event, than by actually interviewing the devisor of the Paddison Programme for Rheumatoid Arthritis himself, Clint Paddsion!
Here it is!
Hi Clint! Thank you so much for speaking with us today. This is such a fantastic opportunity for those people on the Island with autoimmune arthritis who really want to take control of their situation. We hope you enjoy us picking your brains! So for the first question...
Low fat, plant based diets in general seem to be taking the natural healing world by storm. You tuber, ‘Healing Josephine,’ has just declared she’s off all medication, and even Venus Williams is using LFPB to manage Sjogren’s Syndrome. However, there are thousands of healing programmes out there, from deep liver cleanses to paleo or grandma’s honey and cinnamon recipe. Is plant based just another trend? Are these success stories luck? Or is there some real science behind this?
Yes low-fat plant-based diets are certainly taking the world by storm as we begin to understand the power of this way of eating. There is no luck involved in getting well from a chronic disease. It requires a tremendous amount of determination, patience and discipline. When I was going through my own journey with rheumatoid arthritis, there was very little information available for me. Trying to work out what foods I should be eating and how I should be exercising, was like searching in the dark. I was determined though, and was very lucky in that I have a scientific background. This gave me the confidence to read and interpret medical literature, then apply the principles of scientific research to my health journey. This is how I devised the Paddison Programme. Now if people are looking for something that actually works, it’s much more straightforward to access the right information.
On the topic of determination, you’re often quoted as referring to RA as being “the worst disease on the planet.” There are of course, lots of terrible diseases. What is it about RA that made it such an awful experience for you and made you so determined to get well?
Rheumatoid arthritis has a way of reducing your hope and your happiness and completely suppressing your quality of life. Even at a maximum tablet dose of 25mg/week Methotrexate, I was in agony for years with severe inflammation in my jaw, chest, elbows, knee, wrists, ankles and feet. As I’m sure you yourself know, some mornings it was impossible to get out of bed. And if it’s not bad enough having a disease that creates such pain and disability, the medications suggested for this condition can have serious side-effects. Most commonly we hear about fatigue, nausea and ‘brain-fog’. However, there are also hidden side effects and one of these includes a worsening of the actual underlying cause - the condition of our digestive tracts. It wasn’t until I got my diet and exercise right that my blood-work began to normalise and I was finally able to safely get off my medication.
Ah yes, the topic of medication. It’s an interesting one. Medications, as I’m sure you’ll agree, are usually absolute - if not literal, life savers. However, toxicity aside, many people with autoimmune arthritis are desperate to get off these meds because of the side effects. When people commit to the Paddison Programme, at what point do they know it’s safe to begin to lower their meds?
Firstly, thank goodness for medications. Without them I would never have recovered from my rheumatoid arthritis. In Australia the max Methotrexate dose is 25mg/week. I needed to take this amount of Methotrexate for several years just to get me through the days. Without it I would not have had the quality of life to work on my diet and exercise. Plus, inflammation begets inflammation, so we certainly need to see medications as an important tool in the toolbox that can give us significant symptomatic relief. If a rheumatoid arthritis patient is looking to get off medications entirely then they need to hit a sequence of important milestones in order to do so. They must also work closely with the Rheumatologist to hit these milestones. This will vary from Rheumatologist to Rheumatologist, but mine required me to hit perfectly normal monthly blood inflammation levels, pass physical assessments of swelling and inflammation, and have an overall feeling of well-being. Once I hit these markers, we tapered my Methotrexate down bit by bit and kept an eye on my progress month to month. Meanwhile, I adhered to the Paddison Program closely, so that I didn't inadvertently trigger more inflammation.
So clearly the Paddison Programme is not just about food, but other elements too - such as the exercise you have mentioned. What type of exercise do you recommend? And is there anything else we need to know about that contributes to success with the Paddison Programme?
The Paddison Program is a holistic approach. It addresses not just diet but also intense aerobic exercise - of which Bikram yoga is my preference. It also focuses on stress reduction, and some optional supplements. Mindset is important too. I encourage everyone who follows the programme to write out 5 reasons why they MUST get well, and pin these somewhere where they’ll see them everyday. Keeping charts are also vital. Monitoring your success and your triggers is a powerful motivator. In addition to this, a medication review is essential. Many of the medications themselves contribute to the disease as I mentioned above.
Your programme sounds very exciting, but what if I’m not ready for such a huge lifestyle change? Or what if I’m just looking to prevent illness? Are there any small changes you might suggest people make in order to see a difference?
Two simple tips I tell everyone, not just people with rheumatoid arthritis:
1) Eat more greens. These leafy greens like bok choy, cos lettuce, romaine lettuce - anything that is leafy and green and grew in the garden. These are wonderful for alkalising the body and are rich in minerals. Of the highest importance, they are ideal food for your gut bacteria. If we concentrate on creating a wonderful environment so beneficial bacteria can thrive and exist in great diversity, then we are going to receive optimal health.
2) Finish your meals by 7 PM at night. Our digestive juices are optimised with daytime rhythms and our ability to digest food peaks at noon. So we should eat the greatest quantity of our food around lunchtime and we should not eat long after the sun has set when digestion is weak and the body begins to enter its resting period.
This is wonderful information Clint and so inspiring. We would also like to say a huge ‘congratulations!’ Because we’ve heard that you’ve been safely off meds now for over five years! That must feel incredible. Can you please tell our readers how you are now? Can you eat whatever you like? Do you still have niggles or set backs? Basically, are you better?
I'm great. Niggles come only from some structural alignment issues I have with my left knee and my elbows as over the course of the illness these became significantly damaged. I’m working hard to rehabilitate them through Bikram yoga or working out at the gym. Through Bikram I have been able to develop more flexibility and structural alignment. The gym has allowed me to strengthen my major muscles and create a stronger self-confidence in my body. As the connective tissue around the joints (the ligaments and tendons) have been strengthened my joints have improved and give me very little problem - as long as I don't try and push them too much through running or ball sports (tennis/golf) which require heavy use of my elbows. If I don’t do my preferred exercise, or if I sleep awkwardly, I occasionally get uncomfortable in my damaged joints, but these are non-inflammatory issues. I see them as a motivator to keep me being disciplined about continual improvement. My diet is now standard whole food plant based, without restrictions on fat content. I'm thriving, inflammation free, and loving it - and have been for years. Energy levels are normal, even though I have two young girls who get up early! They are the greatest gift from this journey into wellness. They are my world. Lot's of good times ahead for the Paddisons now, sharing the healthy path forward for others, and trying to help as many people as we can who are ready to help themselves.
Go on then Clint, if you were to give us ‘5 top tips’ for our Inspirational Stories page, what would they be?
Go for it!
Thanks for that great plug Clint! And thanks so much once again for taking all this time to answer our questions!
Thanks to you, and good luck with Without Wings. These illnesses are so tough. It’s a fabulous initiative and you're going to positively influence the lives of many people!
***ROLL UP, ROLL UP! IMPORTANT NEWS***
***Tynwald Day Report***
***Tales of the Unexpected: Healing Against the Odds - IT'S NEARLY HERE!***
***Important information on benefits for those currently too sick to work***
Welcome to Without Wing's latest blog! We have SO much information to share with you!
First up - TYNWALD DAY REPORT!
It was AMAZING to have so many people approach us at Tynwald. A real privilege. This charity was designed so that people living with these illnesses could have a powerful point of support and representation. We want people to therefore feel free approach us, to share with us their inspirational stories, and, if ever 'without wings,' either physically, or emotionally, to know that any request for compassionate help is completely confidential.
We raised £146 at Tynwald Day through smoothie and no junk energy snack sales, our decorate the Lula Comp (in which we had 18 entries!), and the Big Ball Balancing Game! This was, of course, fantastic and made for a very busy and exciting day! However, we are still finding that these diseases are misunderstood. With these illnesses affecting so many people locally (approximately 1-1.5% of the adult population, 1 in a 1000 for children), and most commonly first striking at working / child bearing age, Without Wings is working hard to challenge common misperceptions. We therefore hope that we also raised a ton of awareness - something we will continue to do as the charity grows and develops.
The Decorate the Lula comp proved too much of a challenge for our wonderful judges! The final decision was that they couldn't choose a winner because each entry was "so individual and demonstrated a high level of effort." We will therefore be featuring each entry in turn as our Facebook profile picture over the coming few months. A splendid solution!
The Big Ball Balancing was intended to highlight both the importance, and the challenges of movement. Anyone who balanced over 6 seconds won a prize, though by the end of the day there were a few entrants who had mastered the art so well that we ran out of prizes and had to be reward them with extra time instead! It was a lot of fun but apologies to all the stall holders close by as we were quite noisy!
So whilst we're on the subject of movement...
Movement can be a sensitive topic for people living with autoimmune arthritis. There can be a lot of grieving involved, and a lot of frustration when told how important it is to exercise - especially if joints are severely affected. However, the fact remains that it is crucial to move those joints - move it or lose it so the saying goes. Yet what is the best way to keep our joints as healthy as possible? Without Wings therefore recently approached local naturopath, Jamie Wray, and asked him to write us a blog on the subject.
Jamie is one half of husband and wife team,
who, amongst other things, (like Jacqui Kelly's incredible massage skills!) are yoga experts. We've received the draft and are very excited to say it is super interesting, treating the subject of movement quite differently to how you might expect! It'll be launched as a blog in the beginning of August, so please keep a look out.
And although the blog is not actually about yoga, whilst we've loosely mentioned the word...
***Tales of the Unexpected: Natural Healing Against the Odds!***
IT'S ONLY A WEEK AWAY!
Here at Without Wings we are so excited! One of our speakers, Andy, is now an EXPERT at bikram yoga and he has promised a demo during his talk. We hope he keeps to his word too because Andy, who has a diagnosis of both PsA and RA, was, not that long ago, wheelchair bound by his disease. He is such an incredibly inspirational person and of course will be joined by the gorgeous Danny Preil from the Netherlands. Danny's story can be found under 'Inspirational Stories'...
IF YOU ARE DRAWN TO THIS EVENT IN ANY WAY, PLEASE COME! Tickets available on the link above.
There is so much conflicting and confusing information regarding natural healing out there, and practically everyone with these illnesses gets fed up with annoying advice from well meaning friends and relatives.
Here at Without Wings we are interested in exploring one thing and one thing only : RESULTS. What is fantastic about these 2 guys is they've both been very sick, have followed the same programme - The Paddison Programme for Rheumatoid Arthritis, have had ups and downs in their healing, and they've both had to work hard. We are desperate to pick their brains. How hard is it? How easy! Is it just about food and what challenges have they met along the way? Most importantly, is it for everyone? Having them over to speak was too good an opportunity to miss. If the event proves a success we will invite other speakers in the future. The talk is entirely not for personal profit. The £12 ticket fee is to cover costs only.
And hot off the press!
The lovely Emma Lynch of Port Erin's vegan bakery, Flour Power, has offered to donate plant based snacks for everyone to enjoy at the event! You can find out more about her venture by clicking the link below. This event is going to be great!
AND ALSO HOT OFF THE PRESS! We've managed to secure an interview with Clint Paddison himself, devisor of the Paddison Programme for Rheumatoid Arthritis!!! In order to recover from his own RA, Clint spent 5 years perfecting the programme that Danny and Andy follow. He is now doing very well indeed. More about Clint though on Saturday when we'll LAUNCH THE INTERVIEW HERE in an extra special blog!!!
In other news...
BENEFITS! We said we'd get this info up on our information page a while ago, so HUGE apologies. It's taken longer than expected. It'll be loaded today, so do have a look if you are currently in that situation. One of the things that seems to be stumping people is how to get these forms filled in and processed efficiently. We have therefore contacted social services and have a located a number people can phone to gain access to help with filling out their forms. It will all go on our information page.
We really hope this is useful. It would appear that there are several types of benefits so finding the right one is obviously important.
And last but by no means least,
Thank you to Inner Wheel, Douglas Golf Club Ladies and Manx Telecom, who have all donated to Without Wing's recently. We are so grateful. Our services are being used now, so every bit is very valuable to us. Many, many thanks.