The Spondylitis Association of America (SAA) is the patient organisation in the USA for people like me. Its vision is of “a world free from the pain and disability of ankylosing spondylitis and related diseases.” and its mission is:
To be a leader in the quest to cure ankylosing spondylitis and related diseases, and to empower those affected to live their lives to the fullest.
It provides great information about ongoing research, and advice from medical doctors, researchers, dieticians, physiotherapists, and more. Currently I find it the best source of the latest information for patients and carers affected by Spondyloarthritis.
So imagine my delight when I was offered the opportunity to present at the March 2023 SAA Storytellers event. Together with four other patients we shared our experiences with the Spondylitis community in the USA and many others worldwide. The whole event is on YouTube. If you want to jump to my presentation, it starts at 12:22.
Patients need carefully checked and up to date information. Especially now, as healthcare systems struggle in the aftermath of the Covid-19 pandemic, which has put a big strain on healthcare services. I believe that self-management, shared decision-making and advocating for our own needs will be essential components of effective healthcare in the future. The screen shot below gives you an idea of the wealth of resources which the organisation offers.
The RheumaCura foundation, of which I am a co-founder, aspires to a similar vision and wants to bring that focus on patient-centred research to Switzerland. We work to:
Raise awareness about the need for and value of patient-focused research in rheumatic disorders
Ensure a strong patient voice in research into rheumatic disorders
Influence the research agenda in the interest of people with rheumatic disorders.
With SAA we have great role model of how to empower and inform patients. To follow RheumaCura’s work in Switzerland, subscribe to our newsletter on our website, or follow us on LinkedIn.
In the bad old days when life seemed to be filled only with pain, I used to comfort myself and find moments of peace with the thought: „I am not my body!“ If I could see myself at a level of consciousness where my soul and not my body was in charge, then the pain lost its power over me. That was rare, but it did happen.
If I am not my body, then I am also not what I eat, right? Up to now I believed that medication, exercise and stress-reduction are more important for my well-being, than food. However, the more I learn about diet, the more I think that it may be important too. Diet seems to be the question that interests people the most.
The leading Swiss charity for musculoskeletal disorders, the Swiss League against Rheumatism, recognises that many patients would like advice about diet, but do not know where to find reliable information. They publish an excellent series of articles explaining the different views (German, French, Italian). Many rheumatologists are sceptical of or reject any significant dietary influence on the development of chronic disease, and fear that special diets may lead to nutritional deficiencies, and make things worse for patients. At the other extreme there are holistic physicians, and health advisors who believe that diet can even replace medication.
When the disease flares up, I would try almost anything to alleviate the pain; and it seems intuitively plausible that what we eat may affect the progress of disease. It is well-known that a poor diet can lead to other health problems, such as Diabetes or cardiac disease. But what about Arthritis? Health care specialists who believe that diet has no influence, point out that there is no clear evidence that diet makes a difference. But that could be because the subject has not been adequately researched yet. We still don’t understand what triggers arthritis, so in my view it’s too early to eliminate diet from the list of suspects.
But where can patients like myself find the information to make their own decisions?
My General Practitioner sent me to a nutritional consultation at the local University Hospital. I was amazed to learn that they even have a leaflet for people with inflammatory arthritis (published by the Swiss Society for Nutrition in German and French). There I was told that many elements of a Mediterranean diet can help reduce inflammation.
The picture shows me with my kids eating a Mediterranean diet on holiday in 2014. We were doing it years ago!
The first thing is to guard against Osteoporosis. I‘ve had reduced bone density since my mid-forties, so that means making sure I get enough calcium (Fish, cheese, yogurt, various seeds – you can find information on the web) and Vitamin D (supplements and going out into the sunshine).
People affected by inflammatory arthritis need a lot of protein, which is contained in meat, fish, eggs, dairy products, beans and pulses. Some of those foods may promote inflammation, as I explain below.
If there are foods that promote inflammation, then people like me should avoid them, and eat more foods that are anti-inflammatory. That’s where the Mediterranean food comes in. As is well-known many Western diets contain high levels of Omega-6 fats, in particular arachidonic acid. These are considered to promote inflammation and are found in meat, eggs and high fat dairy products. Our Western diets contain a lot of arachidonic acid. So according to the advice I received, these should be reduced as much as possible. The anti-inflammatory „good“ foods contain Omega-3 fatty acids, like fish – so cod-liver oil really is good for you! – and certain oils. Oils that are particularly good are Linseed (we had that at home when I was a child, but it was only used to grease Cricket bats), walnut oil and rapeseed oil. To my disappointment olive oil is good, but not amongst the very best.
The last advice is to eat things containing something called Antioxidants because they scavenge „bad guys“ called oxygen radicals (who would think that something with the word oxygen in it would be bad for you?). You get your antioxidants if you eat lots of fruit and veg, and whole grain products, and nuts and seeds.
I was delighted with this advice, except it described quite well the way I eat anyway, and I‘ve still got active AS. What can I change?
I suspect that I still eat a lot of unhealthy food, even when I think that I am eating healthily. Ten years ago I visited Japan for 2 weeks.
The food was absolutely amazing, lots of weird greens and freshly made pasta. It was before my AS diagnosis, although I‘d had symptoms already for many years. I remember well how astonishingly energised and healthy I felt. I had no idea why but vowed to eat Miso soup for breakfast from then on. My promise to myself didn’t even hold a week! In the rural area in Switzerland where I live it was hard to find Miso for the soup, and my family preferred to start the day with traditional Swiss breakfasts…
Maybe writing this blog will motivate me to try again and report in more detail in a later blog, on what I discover. The whole subject of diet is huge, and I find it quite complex.
Recently I went on a alpine trip collecting wild herbs. In the evening we prepared a wonderful 5-course meal with these plants. It was delicious, and again I felt marvellous afterwards. I’ll leave you with a picture of our starter.
It’s time to come out with it! In January I broke my leg skiing. Now it’s April, and I STILL have a sort of plastic brace on my leg. I’ve barely been out of the house since the accident, except to go to the doctor’s or physiotherapy. But I’ve been to many places inside my head and – thank goodness – I’ve come back again. Life is still an adventure, even within the constraints of hoping around the house. But this is an adventure I could probably do without.
So here is the photo of me just before it happened. I’m looking at camera in my orange jacket and black helmet. To the left is the Eiger North Face. We are a group of friends planning to ski down a long descent just under that iconic mountain. We even had a wonderful local guide/teacher with us. Now, on Easter Sunday, it seems such a long time ago.
I was concentrating on practising my new improved short turns in deep snow, and didn’t notice a sort of drop to my right, someone came too close and to avoid a collusion I veered right and at the moment of falling into the drop, I couldn’t decide whether to brake and fall sideways or try to jump cleanly into it, so I fell straight into it and at that angle my touring ski bindings didn’t open.
Just the day before I’d seen Tom Cruise on the Graham Norton Show breaking his ankle and then running on. I was so impressed, but somehow something uncanny resonated with me that evening. So when a similar thing happened to me the next day, I was very aware of what was happening and knew instantly that I had broken my leg (tibia for people who know about bones), and that this was going to be a long story.
My friends helped me back to the main slope where a sort of motor bike on skis picked me up and took me to the Alpine train station called Scheidegg. I was put on a train back down to Grindelwald. During the train journey a middle-aged man, who was obviously used to telling people what to do, hit my leg with his ski stick and told me to take it off the seat. I breathed deeply and managed to remain courteous, but my explanation caused him to beat a rapid, wordless retreat to another seat. At Grindelwald the ambulance was not there as promised, so two station masters carried me to a taxi, which took me to a local doctor, who seems to earn a good living in winter x-raying people and encasing their injuries into plaster. The doctor also gave me a bottle of an opiate based pain-killer that I know from serious AS flare ups, so I chatted nonstop and cheerfully to the woman in our group who kindly drove me home. Goodness knows what I found to talk about!
At home a neighbour helped me set myself up with cushions in bed and an office chair to scoot around the kitchen. Over the next weeks my son visited regularly and helped with things like putting the rubbish out and filling the bird-feeders, neighbours shopped, and the Red Cross taxi service took me to the doctors. The ice and snow only melted in mid-March, so until very recently it was almost impossible to go out safely .
My well-being is very dependent on lots of movement and sport, and when after 10 days I was suffering from acute backache, I was terrified that a AS flare was starting. I started taking NSAIDS (Nonsteroidal anti-inflammatory drugs) regularly again, and they upset my stomach and made me feel sick. However, massage and physiotherapy managed to relieve the pain, so I could stop taking medication.
I got very lonely sometimes. Many friends visited and that saved me. But my daughter had only just moved out two weeks before and was abroad, so I was living alone for the first time in about 30 years. Morning meditation was difficult at first because of the pain, but I kept writing a journal and trying. That time in the morning is special, because it helps me to reframe negativity, create intentions and a purpose for the day, and live in the present moment. An example: on days when I saw nobody was to pose the question: “Am I lonely, or do I have the opportunity to enjoy a day of solitude?” Around me are so many people who are stressed out by the demands of their jobs and other people, and who would love a day by themselves.
One of my friends who told me that she’d never broke a bone, promptly broke her left leg skiing too. So we are thinking of forming a Facebook group. Anybody else?
Now the weather is a bit warmer and the snow has melted. I can put weight on my leg. Next week is another X-ray and if the bone has mended, I will loose the brace. Only downside is a sort of wandering Arthritis. Yesterday my right index finger and left elbow were swollen and painful. Today it’s my right knee and a bit in my right wrist. I’ve had this twice before – anybody else know it?
The short answer to this question is “Yes, biologicals gave me back my life”. I’m lucky that I can give that answer, but that topic is for another blog.
But many people, including myself, who suffer from chronic disease feel that their medication is not the only important thing. Tragically, for others there is still no medication that really helps. So we search for other ways to find well-being. In my last blog I named four things that help me: diet, sport, managing stress, experiencing beauty and joy.
These are all important for happy living. But do I think that these things can make a difference to my AS? One thing is for sure, I would like to believe that I can influence my own health. I want to feel empowered and to control my disease.
Western medicine is responsible for the administration of medication. We have specialist doctors, who we hopefully trust and confide in. But, with health choices outside our medication they often can’t help us much, because they don’t know. The knowledge is simply not there, and good clinicians will not engage in unproven theories. It is understandable that a doctor who is trained in Western medicine will generally not recommend treatments, which are not scientifically proven to work. In fact, if a doctor believes that an alternative therapy is harmful, which some quack remedies undoubtably are, then she will try to stop her patient using them.
Most of us know lots of people who offer advice about “alternative treatments”, or eating differently, which sports are best, or how to reduce stress, and so on. And there is no shortage of stuff in the internet, about people who claim to have “cured” AS. We search through the jungle of literature, different alternative treatments, perhaps finding things that really seem to help, but maybe wasting precious energy and money with things that don’t work, or even fall for a Charlatan and make ourselves worse with something harmful.
At the end of the day most of us believe that we have found some things that work for us. One friend with AS drinks a whisky every evening. That’s his tonic. My belief is that I feel worse the next day, if I drink alcohol. But, I still drink a glass of wine occasionally!
If there is any serious research on the subject of whether an evening whisky helps reduce AS symptoms, it would probably say it doesn’t, or at best that the evidence is inconclusive. What makes many therapies work, is that we believe in them. I think this is true of many alternative treatments, such as homeopathic pills, which contain no measurable therapeutic substances. It is belief when patients react positively after receiving placebos in clinical trials. Indeed sometimes they even know they are receiving a placebo, and still feel better.
People suffering from serious or chronic disease need hope. They don’t want to feel helpless. They need to believe that they can influence their health.
Alternative therapies, which are not scientifically based, can give this hope. They can harness the power of belief in cure or at least improvement. They don’t have to keep within the boundaries of scientific knowledge, which may make believing in recovery harder. And many people who offer these treatments, do indeed have great powers to make people feel better: about themselves in their body, mind and soul.
A treatment that harnesses both the powers of belief and of science, and gives patients hope would be the best therapy in my opinion. Until the biologicals worked I had no hope; in a state of despair I could not mobilize any healing powers. Shamans give belief and hope, and there are many documented examples of how they can work wonders. But science is not the focus of shamanic healers, and when it comes to HIV/Aids for example, anti Retroviral therapy prevents a lingering death, and nothing else reliably does.
Can medical doctors also harness the power of belief and hope, without losing the science? I believe that they can and should, but that needs a view of the patient as a whole person in a system and in her environment, and not letting the insights of technology and science reduce a patient to a sick organ. Only a person seen in their entirety will respond to hope.
Finally, medicine starts with scientific health research, so that also needs to broaden its perspective. One way in which that is happening will be the subject of my next blog.
And by the way, my TEDx Talk is also finally online. Please do watch it and pass it on to anybody who might be interested.
Thanks to Dr. Jody Staehlin for feedbacks and helping me to clarify my thoughts… and I would welcome your comments on what I’ve written, please feel free to start a conversation about these subjects close to our hearts.
In Switzerland we believe that foxes are clever. Near the village where I live there is a family of foxes living on the border between the woods and a corn field, and in Spring the young foxes come out and play in the evenings. Last year I managed to get a picture, which I’d like to use as my feature picture for this first blog about being clever and keeping healthy.
Being and keeping healthy is the most precious, valuable thing that I can think of. But let’s be honest – a lot about keeping healthy is luck, or maybe it’s more scientific to say that it’s about genes. So does it pay off to live healthily? I see a lot people around me who – how can I put it? – seem to ask a lot of their bodies. But they still seem to be very bright and cheerful, hold down a job and earn enough, have an intact family – in all, manage their lives quite successfully.
Much of my adult life I didn’t feel very well, I was exhausted, or had pains. Despite living my life a in very “healthy” way, I was often ill. Shortly before I started on the treatment with TNF alpha blockers in 2015, I couldn’t “tick off” any of the above life successes. I wonder what my life would have looked like if I’d lived like Winston Churchill, for instance? He began the day with whisky or brandy, and ended it with the same. In between he was very fond of Champagne and of course “Churchill Martinis” which is essentially a glass of gin. He liked good and large quantities of food as well, and is estimated to have smoked or chewed his way through 200’000 cigars. He didn’t think much of sport either, and lived to be 91. I would feel just awful, if I’d lived like that. How did he do it? Genes were probably pretty important.
But if your genes have passed you a disease like AS, or any other chronic ailment. It’s probably a good idea to live as healthily as possible. It should improve the quality of life, as long as you have it, and maybe give you some extra time as well. I believe that my health depends on the medication I take, on what I do for my body, on what I eat and drink, how well I can keep stress out of my life, and how much beauty and joy I manage to keep in. That’s 5 things. In the next blogs I will address each of these five factors and reflect on how I bring them into my life. In a sixth blog I will make a guess about how much each factor contributes to my total well-being.
I’m looking forward to it, and hope to learn from the experience, and maybe give others some ideas as well.
It’s snowing outside, but Spring will come again. I leave you with a picture of the woods and the fields where the clever foxes play.