S2E27 PPMS and Overcoming MS with Helen Rees Leahy – How do they fit together?

Geoff Allix  00:00

Hi everyone, Geoff Allix here, your host of the Living Well with MS podcast. To all our listeners. I hope you and your families are staying safe and healthy during this COVID 19 crisis. While social distancing and other restrictions may seem like a drag, in the long run it will prove critical to stemming the tide of this epidemic and returning to a sense of normality. I have faith we will come out of this stronger, smarter and a bit more enlightened as a result. In the meantime, we at Overcoming MS and the whole team behind this podcast are here for you, to keep you informed and help you keep on track with your personal journey to a healthier you. Now on with the show. In this episode of the Living Well with MS podcast, we’re joined by Helen Rees Leahy, who was diagnosed Primary Progressive MS in 1997 when she was 37 years old. Being ineligible for any disease modifying treatment within the UK National Health Service, she began to explore holistic approaches to managing her condition. She discovered OMS in 2008, and has followed the programme ever since. Helen lives in Conwy, a small medieval town in North Wales. In 2017, she took medical retirement from the University of Manchester, where she was a professor in the Department of Art History and Cultural Practice. As an emeritus professor, Helen continues to research and teach doctoral students. She also spends time hand weaving and learning Welsh, the language of her ancestors. Helen has never taken medication for her MS and is committed to living well through active self care. Welcome to the programme, Helen, could you tell us a little bit about yourself, where you’re from, what you do, family and just background?

Helen Rees Leahy  01:42

Hi, Geoff, and thank you for having me on the podcast. Yes, I’m 60 years old. I live in Conwy, which is a small medieval town in North Wales, I moved here about three years ago, when I took medical retirement from my job. Before that, I was a professor in the Department of Art History at the University of Manchester. So I worked as an academic, I was researching and teaching art history. And I also set up a programme to train people, a Master’s programme to train people as museum curators. I worked as a museum curator myself for many years before I became an academic. So I had sort of quite a busy, quite a busy working life before I retired. I moved to Wales, it’s part of the country, part of the UK that both my husband and I love very much. And in fact, my father’s family was not only Welsh, but Welsh speaking. And so for me in a way, it’s a bit of a, bit of a sort of coming home, I guess, being here, but my husband, he’s actually a hospital doctor himself. He’s an oncologist. And he still works. So he spends the weeks in Manchester, comes here at the weekends. But in fact, he’s going to retire later this year. So he will, he’ll come and live here full time then as well.

Geoff Allix  03:12

It’s a lovely part of the world.

Helen Rees Leahy  03:14

It’s a beautiful part of the world.  Fantastic. No, very close, beautiful place.

 

Geoff Allix  03:15

Yes, my father lived in Llanbedr-y-cennin, which is not that far from you. So just to understand a bit about your MS journey. When were you diagnosed, a bit about your MS and how you handled your initial diagnosis.

Helen Rees Leahy  03:37

I was diagnosed with Primary Progressive MS in 1997. So I’ve been living with that diagnosis for about 23 years now. But like a lot of people, I do believe I had MS really for a few years before I was eventually diagnosed. I found I was beginning to experience foot drop, which is you know, is a very familiar symptom of MS. I was getting it you know, after I’d walked for about a mile or so. And I went to our family doctor to ask what it might be, I had kind of a vague suspicion it could be something like MS. But he was quite dismissive of that and in fact referred me to the orthopedic department of the Royal Infirmary in Manchester. And not surprisingly, they couldn’t really find anything that was the matter with me. Because it wasn’t an orthopedic problem. So they in fact wanted to discharge me and it was thanks to my husband, I think doctors find it difficult to resist other doctors asking them to do things. My husband persuaded them to refer me to the neurology department for further investigations. So after a fairly long wait, I had an MRI scan, I had a lumbar puncture. So about a year later I was finally diagnosed with MS. In many ways, I think that a diagnosis after that sort of fairly protracted period of time before it, I think it was quite a relief in some ways. Because at last, I could actually kind of name the problem. And I suppose rethink how I wanted to be a person with MS and what this meant for my life. But I have to say that the doctor who gave me the diagnosis offered me very little, I mean, offered me nothing essentially, the fact the way he gave me the information was very perfunctory. He gave me very little sort of broader information about what this might mean, there was no treatment available. I certainly wasn’t offered any mental health support. And certainly, there was no lifestyle advice, anything that I might do myself to manage my condition. So, you know, he sent me off, and he said, he’d see me again, in a year or so’s time. So I think at that time, I did feel quite alone. Apart from the support of my husband, and some sort of close, close friends. And to be honest, that attitude, or my experience, I should say, of the NHS hasn’t changed hugely, I have to say over the last 20 years, there isn’t any medication available for people through the NHS, up until fairly recently, people with Primary Progressive MS. My kind of MS. And, you know, I think if a doctor hasn’t got any sort of disease modifying therapy to offer a patient, I’m sure it’s frustrating for them. But as I say, my experience has been sort of very, very limited in terms of the support I’ve been given from the health service. And although now you know, there are increased, there’s increasing amount of research into Primary Progressive MS. And new treatments, like Ocrevus are becoming available. I think I am now too old and too disabled, to be eligible for any of those, any of those treatments.

 

Geoff Allix  07:36

And could you just briefly explain the difference with Primary Progressive MS for people who are new on the journey and maybe don’t understand the differences?

 

Helen Rees Leahy  07:49

Primary Progressive MS is progressive from the first symptom. So I’ve never had relapses. But instead, it’s more of a sort of gradual, in my case, fairly slow, sort of worsening of symptoms over time. And I think the pace of progression there is from person to person. So there’s no very predictable trajectory for Primary Progressive MS, than any more than there is for relapsing remitting. The statistics are that only about 10 to 15% of people with a diagnosis of MS are diagnosed as having Primary Progressive MS. So we are a minority. But as you know very well sometimes people with relapsing remitting MS develop secondary progressive MS, which is a bit more like Primary Progressive MS. And I think we also know from my own experience and other people’s experience, that you know, sometimes these distinctions are not actually terribly, terribly useful, that people can experience relapses and progression, may be. So it’s quite a complex picture, I think. But as I say the the idea of primary progressive is not so much a kind of relapse followed by remission but a sort of steadier progression throughout the course of one’s life.

 

Geoff Allix  09:32

And just to sort of clarify that the difference with primary and secondary progressive is, in primary you start with it, secondary, you start with relapsing remitting, and then it goes on to become secondary. But ultimately, they’re both progressive. So when did you discover OMS and decide to follow the program?

Helen Rees Leahy  09:58

So well yeah, so because I’m so old, you know, I was diagnosed with MS a couple of years before, you know, George Jelinek, the guy who founded OMS himself was diagnosed with the condition. So, you know, my diagnosis predates the creation of OMS. And I think it’s kind of important. I mean, just personally, I always feel it’s quite important just to recognize that because I think today, you know, we certainly say to people, you know, the sooner you start on a program like OMS, after your diagnosis, the better. But it didn’t exist when I was first diagnosed. And of course, Dr. Google didn’t exist either. So you know, getting hold of the sort of wealth, perhaps the overabundance of information that’s available for people today wasn’t a possibility or an issue back in the late 1990s. But I had always sort of understood the importance of taking control of my sort of physical and mental health and well being, you know, I grew up in the 1970s, I was very, sort of engaged in the women’s movement as a young woman. And at that time, the women’s health movement very much advocated our own kind of taking control of our personal health and, and not being overly reliant on conventional medicine. And again, I think, you know, the writer Judy Graham, published a book, I think it was in 2000, which was called Managing Multiple Sclerosis, I think,  it was a self help guide to its management. And I don’t think Judy Graham had a great deal of scientific research, to provide an evidence base for what she was arguing in the book, but on an anecdotal, on a personal, on a common sense level, it made a huge amount of sense to me. So I began to do some of the things that she was advocating, taking evening primrose oil, taking meditation, doing sort of gentle exercise. And then I think, I can’t quite remember when, but quite soon after that, I did read George Jelinek’s first book, which I think was published around the same time, and was the sort of precursor to the more developed OMS programme, with all of its, you know, scientific research, evidence base that we know and follow today. So I think sort of in the early 2000s, I was probably following a sort of mishmash of Judy Graham, George Jelinek and my own sort of instinct about what was good for me, I did a meditation course, I began to take vitamin D and so on. So I think it wasn’t really until about, I don’t know, sort of the late 2010 that I probably began to follow OMS more systematically. I think that was around the time that the website was created. And the second book was published. So I think that was a time when I felt there was perhaps a more sort of explicit toolkit available.

 

Geoff Allix  13:40

And did your husband sort of follow with the evidence base being from a medical background?

Helen Rees Leahy  13:47

Good question. So I think my husband is a very strong advocate of holistic approaches to health and disease management, you know, he’s an oncologist, he treats cancer patients, often he has a pharmaceutical intervention, which can be very effective for those patients, but of course, not always, you know, people come to a point where chemotherapy actually it will not necessarily prolong their life, let alone prolong the quality or enhance the quality of their life. And I think Michael, my husband, has always worked within that space and himself has developed holistic interventions for his patients, which are very similar to the principles of OMS. So taking control of one’s own management of one’s own health, you know, eating well and not smoking, exercise, stress reduction, these you know, these, these are very familiar interventions to us. So, he was always very, very supportive of what I was doing, and has really been, you know, sort of a strong and a brilliant supporter along the way of of all this, you know he really gets it.

 

Geoff Allix  15:18

That’s excellent. And so the OMS programme, it’s certainly I mean, George Jelinek had relapsing remitting MS. It’s this, the majority of people involved in the background in terms of the whether it’s mindfulness, whether it’s exercise, are people from more relapse remitting background, but how does the programme fit into the realities of someone with progressive MS?

Helen Rees Leahy  15:47

Well, without OMS, I would not have had any kind of sustainable health management plan, because as I say, I have never been eligible for any disease modifying treatments, within the NHS in the UK. Access even to things like physiotherapy has been very stop start, I did have quite regular physio for a while, and then the budgets were cut at the hospital and that came to an end, I was trying to access hydrotherapy in Manchester for you know, over 10 years and you know, could never find that. So OMS has really filled that gap. And I would, you know, I would strongly recommend it to people with PPMS, just as much as to people with any other form of MS. And I think the key thing for me, is this concept of living well with MS. It’s what I need to take care of myself, and I don’t fight my MS, I really don’t like that kind of sort of belligerent language, which sometimes is used around the experience of, of illness or disease. I’m not at war with my own body. And I think OMS implicitly, teaches us how to accept and to live with and to manage our conditions, our lives such as they are. And I think meditation and other forms of stress reduction, mindfulness practice, also helps teach us kind of self compassion. And I think these are really, really vital tools, actually for living well with any kind of chronic condition. So, so yes, I mean, OMS has taught me a huge amount of lessons that I’m very pleased to have learned and I don’t think I’ve necessarily have encountered or led my life in this particular way, if I hadn’t had MS. I’m not suggesting or, you know, if I had my time again, I would definitely want to have MS. But, you know, it’s a question and I’ve certainly gained from it, as well as lost from it and certain things, you know, I mourn and I grieve for, but other things have, you know, have as I say, have been a real gain.

Geoff Allix  18:38

And are there specific obstacles to following the OMS programme? For someone who’s got Primary Progressive MS.

Helen Rees Leahy  18:48

I think there are, as you say, yourself, given that we are a minority, and inevitably the sort of the dominant conversation and language relates perhaps more explicitly, to people with relapsing remitting MS. People with primary progressive, and perhaps other forms of MS. You know, there’s a danger that we don’t necessarily see or hear ourselves in the programme. And that I think, completely unintentionally, you know, we can feel a little bit marginalized within the programme and the, the ideas that are promulgated in the programme. I think, I mean, for example, before thinking about what we were going to talk about this morning, yesterday, I had a look at the OMS website. And to be honest, I could not see any pictures of people like myself on the website, there weren’t, perhaps they’re in there somewhere. But just as a quick look, you know, I couldn’t see any photographs, any images of people using a walking stick or cane, for walking, and I couldn’t see any pictures of people in a wheelchair, for example. And I completely get it, that, you know, OMS is about uplifting people, it’s about being positive, it’s about being inspiring. But I would question whether, you know, the only, or the sort of, the default inspiring image is of a kind of 30 something person, you know, walking barefoot on the beach, or kind of running, running a half marathon, you know, I think my life is positive and inspiring. And, and that isn’t me. So I think, you know, I think that a charity like OMS has a very, it has a very, very big challenge in this regard, because the MS community is very, very diverse. And I think it is a challenge to be as inclusive as, as we would all like it to be. So I guess it’s, I don’t mean to sound particularly critical, I think, these things are sort of partly inevitable, but I think OMS can and should reflect that diversity of its community a bit more clearly. And I also think, you know, there’s a bit of a danger with a programme like OMS, which stresses recovery, which talks about positive change. So, even on the podcast, sometimes speakers have talked about the prospect of using a wheelchair, as being something that’s to be kind of avoided at all costs, almost as if, you know, being in a wheelchair is a kind of failure, as if those of us who use a wheelchair you know, have eaten a bit too much cheese in secret. And I think, you know, again, I would really want to just draw attention to that, because I think, we all experience disease progression in different ways. And at different speeds, there isn’t any good or bad, failure or success in this. And life isn’t necessarily diminished. Because we aren’t as physically able or active as we once, as we once were. So, I think those kind of messages do need to be kind of questioned and perhaps, explored a bit more than they are. And I think, as with this kind of notion of recovery, I will never recover in the sense of being cured, no more than there more than anybody else with MS will. So for me, as I say, it’s been much more useful to think about OMS in terms of living well, in terms of sort of healing as a continuous process, rather than sort of recovery as a kind of binary between sort of being being well or not well,

 

Geoff Allix  23:32

I don’t know where the phrase came from. And I think it’s maybe mentioned on the podcast, I think it probably was that and it was something very early on in my journey that was with OMS. That was mentioned to me that someone said the cheese aisle makes them think of wheelchairs. And there’s two parts to that, there’s one part where actually, it certainly stuck in my mind and it was okay that it was a visual representation of, if you carry on with the way that I carried on with my lifestyle, which was that I was very active and very very fit but you know my diet was terrible, mindfulness, a non existent thing, you know, apart from doing lots of exercise, I was doing everything else terribly wrong. And it did give a very like very quick visual like, okay, there’s different paths I can go down and actually cheese isn’t that important to me. And staying as active and fit as I can is very important to me. So that worked, but on the other aspects. Absolutely. Now that I know there’s certainly lots of people involved in the MS community who have amazing lives. And some of them were like, a whole spectrum. Now I’ve met people who are regular marathon runners who’ve got MS through to wheelchair rugby players, and people who use walkers, canes, and everything in between. And there is a commonality in people I’ve met, that they’re all very positive and are having a very fulfilling life. So there is definitely two aspects to it, I think. And I can completely see what you’re saying about a charity like OMS. On the one hand, the message on the website, if there’s a newly diagnosed person, which we’re saying that 90% of people have got relapsing remitting MS, so that say, at 25, a typical person, may be 25 year old female with relapsing remitting MS. And she goes on there and she’s in a terribly despondent state and then sees lots of positivity, that could be a good thing. But then what about the 10% of people who that’s not their situation. And what they want is something positive. And actually, there’s a person who is in a wheelchair, but actually is having a very enjoyable life. And it’s, yeah, there’s a definite trade off in there.  And that you can live a good life in a wheelchair.

 

Helen Rees Leahy  26:07

 Of course, you can. I don’t think there’s a trade off, it’s ableism, end of. To talk about people in wheelchairs, talk about people in a wheelchair, but they have good life. Even that is ableist language, they’re in a wheelchair, and they have a good life. Running a marathon, playing wheelchair rugby, you know, just being able to conform to a certain kind of orthodoxy of fitness. Diet isn’t the only way to lead a good life. There are many, many ways of leading a good life. And I think, you know, we need to recognize ableist language for what it is. And nobody should take heart from you know, whether or not you’re still kind of young and active with MS. Nobody should take heart from ableist language around the subject at all. And I feel that really, really strongly.

 

Geoff Allix  26:35

No, I do, and I’m definitely guilty of that. It’s a difficult thing to, if you’re not in, yeah you’ve become more conscious of it having a critical illness, but still, there’s so many different aspects. And no, I certainly and I would definitely put my hand up and say, yeah, I’m definitely guilty of that, in an unconscious way,

 

Helen Rees Leahy  28:02

We don’t tolerate racism, or homophobia, or, you know, misogyny, in our conversations. And I think as a health charity, we, you know, all of us, and I’m not suggesting I get it right every time, far from it, you know. But I think we all need to be very conscious of the power of words, and images. And as I say, I think we really need to recognize and call out ableism for what it is, and then we can move on, you know, and then we can move on without these, you know, these distinctions between one group of people who are running marathons and another group of people, you know, who might be writing amazing books or, you know, cooking extraordinary meals or making beautiful gardens, but, and, or they happen to be in a wheelchair.

 

Geoff Allix  28:52

Yeah, okay. Pretty great. I mean, just to take a completely different context, it’s almost similar to someone who’s Japanese being racist against someone who’s in Europe, there’s still racism, you can’t just categorize it’s like it only affects Black Americans, it doesn’t. As soon as you have distinctions, then you have distinctions. So the fact that the majority, let’s say, 90% of people have relapse remitting MS. Yes, there’s issues that they have, they shouldn’t just look at their own issues. They really should be looking at everyone’s issues. It affects, you know, it could be someone with something completely different, with nothing to do with their MS.  But once we start having thoughts and restrictions and all these things put in place with people’s abilities, then it becomes a problem.

 

Helen Rees Leahy  29:50

I think the two most important things that I would say and they’re in a way they’re, sort of very, very simple things. One, none of us knows what the future holds. So, you know, who knows, who knows where any of us will be, you know, health wise, in a year’s time, a month’s time, a week’s time, a decade’s time, we don’t know, all we can do is keep looking after ourselves. Absolutely the very best we can, today, tomorrow, the next day. And the second point is, it’s never too late to do that. So, you know, even though you know, you might have had MS for many years, you can, you know, you’re disease might have or might not have progressed to a particular condition. You know, I strongly believe it’s never too late to start, it’s never too late to start, you know, taking care of yourself, prioritizing your health and taking control to whatever degree is possible, of the management of your health. So those are the key things, you know, it’s, we, none of us have a crystal ball to see the future. But we can all grasp, you know, what OMS can offer us today. And that’s the most powerful thing.

 

Geoff Allix  31:17

And as someone with Primary Progressive MS, how do you measure your progress? So do you look to say, okay you know, how would that be, I mean there’s obviously, it’s not a lack of relapses. So how would you measure your progress with OMS?  Or just with your OMS in general?

 

Helen Rees Leahy  31:41

It’s a really good question. And it’s, and it’s kind of impossible to answer that. Because often people say to me, you know, friends of mine, who know that I’ve followed this programme, they don’t really understand quite what it is, but they kind of know that I’m doing something. And they say to me, oh, no, have you got better as a result? I ask myself, you know, would my health be worse now, if I hadn’t followed the program? You know, for the last, I’d say, 10 years or so? I think. I mean, I don’t know the answer. Because I haven’t conducted a kind of controlled experiment on myself, obviously, I believe my health might well be worse than it is. But so in a sense, I try. I don’t find that a very useful question to ask myself, because, as I say, it’s unanswerable. I think, the way I measure it is, how effective, how good do I feel, in terms of being able to manage and to take control of my condition, and of my life on a day to day basis, if that makes sense. So, you know, I feel I’m succeeding with the programme. When I feel I’m in charge, I’m enjoying my life, the things that I do to take care of myself, you know, feel good. I can feel the sort of, the daily benefits of those interventions. As opposed to, you know, not feeling I’m in control and things, things becoming difficult to cope with. So I guess I find it easier to measure progress on a kind of micro, on a kind of day to day level, than I do on a sort of broader sort of view of progression overall. And I think like probably a lot of people who are doing the OMS programme or looking after themselves in different ways, you know, I think we all know that if you, if we, don’t get active, you know, we don’t keep active, we get stiff, and we can do less. If we you know, over eat or eat kind of junk food, you know, that never feels good inside our systems. You know, we know that, although sometimes it might be tempting not to do something or to do something that is not good for us. We know that in the short term, as well as the long term, we experience you know, we don’t get a good experience from that. So, as I say, I think it’s much easier for me to think about these things on quite a small scale, rather than on a  big scale. And in terms of the bigger picture, I guess I just kind of go forward with, you know, faith that I’m doing, kind of belief that I’m doing something which is good. And, you know, whatever the future holds well, that will become clear when the time comes.

 

Geoff Allix  35:02

And there’s one thing I wanted to bring up, you’ve written a blog article about weaving. And I found it quite fascinating having never been involved in weaving at all. But I just want to ask you a bit about that, and about how that integrates with your lifestyle and affects you.

 

Helen Rees Leahy  35:25

So when I retired, as I said, a few years ago, now, I really began to think seriously about how to enjoy myself, which might sound a slightly trite thing to say, but I think, you know, when you’ve had a very demanding job, and you lead much of your working life with a kind of attitude of responsibility, that relates to work and relates to other aspects of your life, how to lead a good life, when you’ve actually shed, you’ve let go of some of those responsibilities. And for me, having a creative practice is really an important part of that mix. So I’ve always been interested in design and art history, professionally, and wanted to find a way of making that would be fun, that would be involved learning. And, and would be creatively fulfilling. And I kind of was attracted to this idea of weaving, weaving cloth. And I, after sort of a few mis-starts, I bought myself a loom, it’s a small floor based loom, it sits here in my work room, in my house, and I always have some weaving on the loom. And then some days, I might weave for four or five hours, other days, I might weave for five minutes. But the beauty of it is, it’s a kind of integrative practice, that you can do a small amount of, you can do a large amount of, it’s a form of free weaving that I do. So it’s, it’s very creative, I start out with the design in my head. But often as the piece develops, I deviate from that, or I have a better idea, or it ends up looking rather different than how I’d anticipated at the outset, and I find it both relaxing. There’s a lot of research into practices like knitting and weaving and pottery, which show that this kind of repetitive, sort of rhythmic work with our hands, is actually very, very good for our minds, that it can be, it can be quite soothing, it can be quite calming. So, it requires concentration, it requires attention, but it’s a very kind of unstressful form of attention. I mean, occasionally when something goes horribly wrong, then yes, you know, it’s frustrating, like anything else. But by and large when the weaving goes well, it is relaxing, but it’s a little bit more than just relaxing, it’s very purposive. And of course, it’s very pleasurable when something you know, rather nice emerges on the loom. So I think what I’m saying will be familiar to anybody who has a practice like this, whether it’s weaving or sewing or making pottery or woodwork or painting or gardening. But for me, it’s rather a mind body connection, which fits into the OMS philosophy really, really clearly as well.

 

Geoff Allix  39:10

I do. I mean, I think it’s very mindful, I think. And I think that if people are interested in that sort of thing that you can almost think of a very broad range of things. I mean, I was just sitting next to me now is, is my guitar. And I think it just occurred to me actually that’s, although it’s very, very different to weaving, it’s still the element of its physical and mental and creative. And it was just when you were saying sometimes it goes horribly wrong. I’m a terrible guitar player to be honest, but yeah, sometimes it goes right and you have a recognizable song come out of it. And sometimes it goes horribly wrong, but it’s that you’re concentrating and you’re creating something. And so it’s very, very different. But I think there’s so many different things that could be, whether it be, as you say, gardening, or weaving, playing guitar, they all have that similarity in a way, although they’re so different from each other.

 

Helen Rees Leahy  40:06

They do, and they’re an expression of kind of hope in the future, or hope that there will be a future as well. So you know, when you’re practicing your guitar, well, that’s pleasurable in itself. But also, you know, that the more you play your guitar, the better you get, and you kind of move on and doing something a bit more involved than the previous, you know piece you were working on and so forth. And, you know, if you plant a garden, if you plant a seed, you do that with the anticipation that, you know, the seed will emerge and grow into the plant, and, you know, all being well, you’ll be there to see it. And it’s the same, you know, when you make something, when you make a piece of cloth, or you know, you knit something. So I think these activities, you know, they seem very simple, and it’s easy to dismiss them in our lives, isn’t it? It’s easy to sort of be slightly self deprecating when we talk about these things, but actually, I think they’re very profound. And I think, you know, they’re profound because they have that significance for us in the process, in the moment, but they also, as I say, they express something about our hope in the future as well.

 

Geoff Allix  41:26

And just as a final question, as someone with Primary Progressive MS. Could you share with other people that have Primary Progressive MS what motivates or inspires you?

 

Helen Rees Leahy  41:38

One thing I have found very useful as somebody with Primary Progressive MS is a physical practice that I was introduced to by a really brilliant neuro physiotherapist in Manchester, she is called Ann Robertson, she’s retired now, and she is a qualified Feldenkrais teacher. And she taught me the Feldenkrais Method, both when I was part of having physio with the NHS in Manchester, and I’ve also worked with her subsequently. And I’ve seen the Feldenkrais Method is a really interesting one for people who don’t have a huge amount of physical capacity. It’s a very slow and gentle form of somatic education, you do a session, a lesson as it’s called, that might be 20 minutes, it might be 40 minutes, you can be lying down, you could be sitting in a chair. And the idea is that you explore very, sometimes very small, slow and gentle movements, but you pay great attention to a very specific movement. And, it might not sound a great deal, but actually what you’re doing in that process, is you’re, you’re opening up new kind of neural pathways, you’re actually, you know, it’s this idea of neuroplasticity, which is much discussed in, you know, the OMS conversation, that, you know, we can retrain our brains to improve physical capacity, along with so many other things. And of course, you know, one way of doing that is to go out on a bike ride or to kind of go swimming or ride a horse or go for a run. But for people who can’t do those things, because they don’t have those capacities, the great lesson I’ve learned from doing Feldenkrais is that actually you know, doing something very small, and working with the breath can also be a very, very powerful way of really bringing us back into our bodies, I think, you know, when you are disabled, you can feel very estranged from your body, you can feel quite alienated from it at times and for all sorts of reasons. And Feldenkrais, as I say, is a very, it’s a very gentle form of practice, which brings us back into our bodies in the same way as you know, people who, you know, talk about meditation and mindfulness on, you know, the OMS websites and the blogs and guided meditations and so forth, would talk about kind of coming back into our bodies, through the breath. So that for me, it’s not a well known practice in this country, in the UK. It’s much better known actually, elsewhere. I mean, I think in Germany, Feldenkrais lessons are available on their, through their health system. You know, it’s recognised physical therapy, but there are Feldenkrais teachers all over the world. In America, in Australia, you know, places where OMS thrives and flourishes as well, it’s a very rigorous training that they have to do. It’s not some kind of, you know, thing, you just kind of go and do for a weekend and then you begin teaching it, the training actually takes place over a number of years. So I’ve found that immensely useful. And, you know, I know I can sometimes sound quite sort of critical of some of the assumptions that people make within the, in the MS community within the OMS community. So just one thing I’d also like to quickly say, is, although I find OMS quite challenging. You know I find it immensely rewarding, but it can also be quite challenging. And just to give you one example of that, so I’ve both been inspired and challenged simultaneously. During the lockdown, you know we had a brilliant series of webinars, from OMS, which were organized to give us, and I thought they were fantastic, great support during the lockdowns, many of us were living through in our in our different places and countries around the world, and they were on different themes, as you well remember. And there was one on exercise with Veronique Gauthier-Simmons, and, you know, Veronique is an amazing woman, she’s a great athlete, she’s kind of incredibly, you know, she really understands the benefits of exercise, and is a powerful advocate for them. And I was watching the webinar and listening to it, beginning to feel a bit grumpy thinking, Oh, this is fine, you know, if you can do all these things, but I can’t. And I thought to myself, well, that’s not really good enough, I need to, instead of just being grumpy about it, I really need to kind of embrace this, this conversation. And I was very aware that during lockdown, I was living just by myself, because obviously, my husband was working in the hospital in Manchester, hadn’t seen him for months, and I wasn’t really going outside of my own garden. So I thought, what can I do, which is going to get me exercising more actively than I do at the moment. So I’ve ordered an electric tricycle, which is being built for me with adaptations for my capacities. So it will, it will have a few things that are modified to suit me. And the idea is that having a trike rather than a bike means I don’t have to worry about balance getting on and off it. And having the electric motor means obviously, I can pedal as much as I can or I want to, and then when I’m too tired, or I can’t pedal any more, the motor will  help me to get home. So I’ve taken that very specific action, directly, I would say in response to that OMS webinar, and at the start of the webinar, I could not have predicted that I was going to do something like that. So I think it’s really good to be challenged. And I mean, I pick up the tricycle next month. So I don’t know how it’s going to be. But I’ll let you know how I get on with it.

 

Geoff Allix  48:49

And with that, thank you very much for joining us on the Living Well with MS podcast. It’s been fascinating.

 

Helen Rees Leahy  48:55

Thank you very much for having me, Geoff.

 

Geoff Allix  49:00

With that, I would like to thank you all for listening to this episode of Living Well with MS podcast. Remember that there is a wealth of information at overcomingms.org including show notes, and an archive of all Living Well with MS episodes. Once again, that’s overcomingms.org. There you can also find OMS friendly recipes and exercise tips, connect with other OMSers in your local area through our OMS circles programme, and learn about the latest research going in the MS world generally and related to OMS specifically. I encourage you to register on the site and stay informed about the latest news and updates. I also encourage you to subscribe to this podcast, so you never miss an episode. And please feel free to share it with others who might find it a value. Let us know what you think about the podcast by leaving a review. And if you have ideas for future episodes, we’d love to hear from you. So please contact us via our website Overcomingms.org. Thanks again for listening, and for joining me on this journey to Overcoming MS and living well with multiple sclerosis. I’m Geoff Allix and I’ll see you next time