S5E19 Webinar highlights: Progressive MS with Phil Startin and Helen Rees Leahy

Helen Rees Leahy: “Overcoming MS is really determined to be an inclusive space in which everybody’s experience of MS is acknowledged and honoured. So, though we [people with progressive MS] may be small in number, our voice is growing, and we’re very much being heard within the Overcoming MS conversation.”

Phil Startin: “Be kind to yourself, try not to judge [and] compare what you can do now to what you used to be able to do. I’ve certainly spoken to people who refuse to exercise saying exercising reminds them of what they now can’t do and that’s really upsetting. We still need goals but hold them more lightly [and] more gently.”

Helen Reese Leahy: “I started following the Overcoming MS Program in the 2000s. It’s become a framework for my daily life. I’ve never been eligible for any disease-modifying therapy, so in a sense, Overcoming MS is my health care programme. I feel very empowered by following the Program. I am taking responsibility and managing my own health to the best of my ability. I always regard Overcoming MS not as a book of rules, but as a kind of toolkit and to be honest, I really enjoy following the Program.”

So with no further ado, I’m going to hand over to Phil, who is going to talk us through actually what is progressive MS.

Phil Startin 

Yeah, so what is progressive MS? And how is it How’s it different? That’s kind of the picture we almost all have of what’s going on with MS. But that’s only part of the picture. And that’s very applicable to relapsing remitting MS, but not for us with progressive MS. So the mechanisms that underpin the condition for progressive MS are very different. Progressive MS is really complicated. There are a number of different mechanisms, a number of different pathways that actually cause that cause a loss of function that caused the the progression of the condition. Some of these are actually we get demyelination but not caused by inflammation.

Phil Startin 

The cells that produce the myelin the Oligodendrocytes those are attacks, those atrophy, we lose gray and white matter when we have progressive MS. And that their own huge number of other pathways. Through that actually the the condition takes not all of which have probably been even been identified yet. So say it’s a really complicated condition. In progressive MS, we lose gray matter more rapidly than general population. So that’s why our brains atrophy, they shrink much faster, they estimate about three times faster than the general population. So affecting our brains are aging faster than the general population. So that’s what’s going on. I see it’s still really, really complicated. And what is even MS. I saw this this sort of paper about a year ago, that presented MS as a kind of a spectrum with two key components and inflammatory components caused by the body attacking itself effectively, and a progressive degenerative components. And we then sit somewhere on the spectrum. So early on typically, in the relapsing remitting phase, there’s the inflammatory component of the condition is more prevalent as the condition progresses and we get older, degenerative components becomes more important and what some scientists and some neurologists actually say, is that for us with Primary Progressive MS, the inflammatory component is actually subclinical is asymptomatic, so we don’t even see that happening. And similarly, for those with relapsing remitting MS, there is also a degenerative component even early on in the condition, which is one of the reasons why a lot of people with relapsing remitting MS now been given some quite aggressive treatments things like Ocralizumab, to support the condition because the scientists and neurologists became more aware that we need to hit the condition early and really quite hard to prevent the early stages, degeneration. So it is that there’s an awful lot going on. And it’s still scientists are really quite unsure as to what comes first, does inflammatory come component come before degenerative component, or is it vice versa? So there’s what’s called the outside in model. So it starts with the body attacking itself. What actually does it start with the degenerative components. And so there’s still lots of discussion amongst neurologists as to which ones starts the condition. So it’s still not clear. But even more than that those those kind of labels have changed the slide of relapsing remitting MS, secondary progressive MS Primary Progressive MS are changing. Those labels were only introduced formally in 1996. And increasingly, the MS professionals are MS neurologists and nurses define the condition in terms of activity. So are we seeing relapses as evidenced by MRI scans? And or are we seeing progression as being shown by the loss of function? And actually, those two kinds of parameters actually dictate, certainly in the UK, what treatments are available to us. So I’m currently on Ocrelizumab, because I am being showing I did about three years ago, both activity and progression. If I was only showing progression, I would not have qualified in the UK for Ocrelizumab. So say it’s really, really quite a complex condition that is still not firmly and fully understood by it by the neurologists. And I have to admit, I find this quite quite interesting. And actually there’s probably a much bigger question, and it’s more relevant to us is actually what’s the lived experience of being with a condition like chronic degenerative condition, like MS. And Helen I’ll hand it over to you to talk a little bit more about that.

Helen Rees Leahy 

Thanks, Phil. So we’ve seen it is it is a complex picture. And those subtypes defined in 1996, you know, they may well be revised in the future, and we may well be applying different labels. But the fact remains that as of now, you know, any diagnosis of MS is liable to be very difficult, very distressing. But if you’re diagnosed with Primary Progressive MS, or if you’re told that your relapsing remitting MS is transitioning into secondary progressive MS, these are the labels that are still use, you know, you’re you’re being told you face the prospect of loss of function, worsening symptoms over time. And of course, the pace at which that happens is very unpredictable. And it differs greatly from one person to the next. But I think this is compounded by this negative idea that somehow relapsing remitting MS is good versus progressive MS, which is bad. And this kind of notion is pretty pervasive in some of the conversation, certainly in the past, and I think it continues today, around MS. And I really wanted just to say, you know that this is not accurate. It’s not compassionate. And none of us, whatever our label, whatever our diagnosis, so it accepts a really helpful distinction, which is based on a kind of prejudice about what constitutes a good life, and who is a strong person. I think one thing we’d like to very much stress is our conviction that people with progressive MS have exactly the same capacity to care for ourselves and to manage our condition as anybody else in the MS population. And indeed, that the Overcoming MS program is as much for us as it is for anybody else. But we know there are particular challenges of being in the minority within the MS population. So people with a progressive diagnosis still constitutes a relatively small number within the MS population at large and, as far as said the underlying causes of progressive disease For all complex, and because I think you want to just see fewer people with progressive MS, particularly primary progressive MS. You know, they’re less experienced, they’re less in tune, perhaps with its causes. And even with potential treatments and ways of managing. So we really need those of us who have progressive MS, we really need to be able to find strong advocates so that we get the attention and support that we need. And of course, because we’re in a minority within the MS population, of course, we’re therefore also in a minority within the Overcoming MS community. And at times, I think it’s probably fair to say that relapsing remitting MS experience has perhaps been a sort of dominant conversation within the OMS community. But this is changing, this is already changing. And OMS is really determined to be a very inclusive space in which everybody’s experience of MS is acknowledged and honored. So though we may be small in number, our voice is growing, and we’re very much being being heard within the Overcoming MS conversation. I think one thing that we all have in common with a diagnosis of MS is uncertainty about the future. So if you have a relapsing remitting diagnosis, you know, you are uncertain as to when you may or may not have another relapse, and what will remission involve? If you have a diagnosis of progressive MS. You face, as we’ve said, the sort of the prospect of increasing loss of function and a disease burden over time. And again, the uncertainty is around what’s going to happen, when it’s going to happen. And the challenges that that brings, and I’m going to hand over to Phil, who’s going to sort of flesh out some ideas around that particular uncertainty. Over to you Phil.

Phil Startin 

Thanks, Helen. Thank you. Yeah, no, I agree with you, I think, right? It’s, regardless of the type of MS that that you have, that we have. Uncertainty is always there, unpredictability is always there. But I do think and I agree with you that with when you’ve got the progressive condition, there is there is more going on, I can say there’s, there’s something about that the unpredictability of the condition itself, what that does to me, and my relationship with others as well. So the condition itself, when there’s the progressive form, potentially, we are dealing with functional loss, with physical functional loss with cognitive issues. With all the hidden symptoms, the bowel issues, the bladder issues that I’m sure with lots of people, we can have hours of compensation about that the pain, the neuropathic pain that, again, isn’t really often spoken about, but a number of people have and can be really quite debilitating, and have a big, big impact in our lives. So there’s that just a physical symptoms of living with this condition, that can be very tough. And what does that do to you as an individual? What if you can’t work anymore, as I’ve had to do and Helen has had to do as well, you can’t enjoy the hobbies, the activities you used to enjoy? What does that do to your identity? How does that change? What does it change? What your values what’s what’s important to you? Can you still be happy? And how’s this going to impact your relationship with others, with your partner, your friends, your work colleagues, so all these things become become more unpredictable, when we have this this more progressive form of the condition. And this the these the progression of the symptoms themselves? So that is, so there’s a lot we can do do with it. And but what is it? And maybe Helen, just to talk a little bit more about what what can we do with that?

Helen Rees Leahy 

Thanks, Phil. So we’ve laid out some of the challenges and perhaps it’s all sounding a little bit bleak so far, and we know our brains are shrinking, and all these all these things we have to contend with in life. But there is so much that we can do for ourselves. And I just wanted to introduce this part of the discussion under this heading of self activation, which is an idea that may be familiar to some of you, but perhaps not to everybody. And it’s a it’s a sort of really growing sort of trend, an idea within healthcare systems in particular, where this is often talked about in terms of patient activation. And patient activation has been identified, defined here in the UK by the King’s Fund as the knowledge skills and confidence a person has in managing their own health and healthcare. So it’s not a new idea, but I have to say it has a kind of growing presence within many health care policy conversations. And indeed, in practice, you go on to your hospital website, you may well find a section on patients activation nowadays. But what’s great for those of us involved with the OMS program is Overcoming MS is at the heart of this philosophy of this perspective on healthcare, the emphasis on self management, what we can do for ourselves. And of course, healthcare providers like this idea, because studies show, and I’m quoting again, from the King’s Fund in the UK, the quote is “highly activated patients are more likely to adopt healthy behavior to have better clinical outcomes, and low rates of hospitalization. And they report higher levels of satisfaction with services.” So that’s looking at it very much from the sort of health provider point of view. But I think for people following the Overcoming MS program, we know the self activation doesn’t only take place in the doctor’s office, it’s what we do in our everyday lives, understanding that eating well, moving our bodies, managing stress, ensuring that we get as good sleep as we can. These are things that have a real impact on our health. So the evidence base for the Overcoming MS program absolutely fits into this kind of picture of self management. I think as well as taking care of ourselves by eating, moving, resting well. Self activation also involves feeling informed and confident when we make healthcare decisions. For example, when we’re evaluating treatment options, so we need to be our own health advocates, or find people who will be advocates for or with us.  And being part of the OMS community means that we don’t have to do any of this by ourselves.  I’m now going to hand it over to Phil who is going to ask the big question, Phil.

Phil Startin 

Yes, the big question. So does the Overcoming MS program work for people with with progressive MS? Yes. Simple short answer is yes. The inputs we need, we need to discuss what works means and explore that a bit more detail. But I think if you’d asked me almost eight years ago to the to the month to the week, as I walked out to my my retreats, the first OMS retreat I went on, which was the first retreat outside Australia in 2013 here in the UK. And if you’d asked me at the end of that retreat, does it work for people with progressive MS? I might have said no, actually, because I’d had a brilliant week. But yeah, so I walked out. I had a wonderful week with George Jelinek and his wife, Sandra, with Leanne, and Craig Hassad that talks all the wonderful things about OMS. And that showed me lots of evidence about how OMS was really great at reducing relapse rates. But they said nothing about people with progressive MS. So I thought, well, I’ve never had a relapse. So is this going to make any difference to me and I didn’t genuinely didn’t know. So fast forward to now and seeing how it’s always worked for me over over the last number a number of years, how it’s worked for others, seeing someone with a more recent research. I’m absolutely convinced that yes, it does make a difference, we can absolutely kind of affect the trajectory of the condition by following OMS by eating well, by looking after our brains looking after our minds, by exercising, we can absolutely make a change to the trajectory of the condition. And to me that’s, that’s really what working for people with progressive MS means we’re affecting the trajectory, we can change that trajectory. And we can recover some loss of function. And how do the different sort of steps work and just going to dig into a little bit more detail just very quickly, to me actually, exercise is possibly the the most important one. And then there’s now a huge amount of exercise of evidence that exercise makes it makes a massive difference to people with MS and in particularly people with progressive MS. So you get the quotations from Gavin Giovannoni, that “exercise almost should be treated as a form of DMT for people with MS.” And there’s loads of evidence now that we can slow symptom loss, we can recover function. By exercising, we can develop new neural pathways in our brains, we can relearn certain how to move correctly, posture patterns, even walking, exercises, also tremendously great at protecting our brains. And you hear me I’m sure you hear in the news about how it’s good for other degenerative conditions, Alzheimer’s, dementia, Parkinson’s disease, or recommend that people exercise it, it’s exactly the same for us. Exercise also improves just how the synapses work in the brain. So there’s a lot you can do to protect the brain through exercise. But what type of exercise and for me again, for particularly for people with progressive MS, it’s less about the what you do, should it be cardio or functional training or strength training, but more about the how. It’s a fun thing, something that you enjoy doing. Seems that motivates you that enthuses you because it’s most important you do something. And if you are exercising to relearn function, then form is really important. It’s not about exercising, to get the last rep out or going for that last 100 meters or 10 meters or five meters walking, it’s about keep keeping the former good. Being kind to yourself, once you do it being safe. And trying not just a judge, comparing to what you can do now, to what you used to be able to do. I’ve certainly spoken to people who almost just refuse to exercise saying exercising reminds me of what they now can’t do. And that’s really upsetting. So we need to, to not judge. And then kind of link to that it’s just how we hold goals. We still need them. But potentially just just hold them more lightly more gently, when we do have this this more more progressive, quite chronic condition. So exercise I think is really important. Looking after the brain, and our stress levels is also massively important. And if any of you have found a link between stress and your MS symptoms, I know I certainly have. The research shows there is a causal link between stress and exacerbation of MS symptoms. OMS recommends meditation, but there are there are lots of things that we can do to look after our stress levels. Exercise, yoga, John Williams, one of vernix, yoga, yoga classes, just getting some fresh air, reading, listen to music, painting, habit, having a hobby, lots and lots of different things we do to help manage down on our stress levels. That being said, meditation and mindfulness meditation, I think really helps. Because for me living with progressive as the so much of it is go it’s a head game. It’s about sorting out my head, certainly. And when we spend so much time living on our heads, again, particularly with a degenerative condition like this, we can have perhaps Perhaps worrying about the future or making judgments about what we’ve done in the past, and to live with new normals all the time. And it’s hard. It’s been so much time thinking thinking about this stuff. So mindfulness can help with that and actually, mindfulness Yes, it can be helped us just relax during the time when we meditate. But actually it’s more important we then apply it to our day to day lives. It’s actually a tool to to live with. Being mindful the day to day to day, helps with our attention, helps with our attend with our awareness helps us just to sometimes step back from from what’s going on to reframe situations. It’s certainly helped me deal with the change with the relationship I have with the condition. So rather than kind of fighting it or trying to escape from it, I’ve pretty much learned to to accept it. Still, you still need strength and still need to be determined, but but accept this is what’s there. And I think kindness is another key word. And to me, mindfulness and kindness really are synonymous. And I think any mindfulness course you do, should it should have kindness at the heart of it. And I think bringing that kindness that that compassion to to ourselves to the condition is such a key a key part of it. So perhaps, Helen, I’ll turn it over to you now talk a bit a bit more about that.

Helen Rees Leahy 

Yes, we want to just to sort of really emphasize this idea of self compassion. I think Phil and I both feel that this this concept, self compassion, practice of self compassion really is at the heart of living well, with a chronic condition, like MS. What does this mean in practice? Well, for many people, you know, a serious diagnosis, like a diagnosis of MS can make us ask the question, what is important to me? What makes me happy? So we can kind of possibly can use this as an opportunity to re identify our values and our goals, in order to feel more in control, and to help us change our behavior. So as to benefit our health, and also to increase our enjoyment of life. There’s a lot of research, in fact, that shows that people who experienced life changing diagnoses for example, this these traumatic events, can actually trigger an appreciation of life, setting new priorities, increasing personal strength, identifying new possibilities. And I think the key thing to remember here is that the pleasure that we take in life doesn’t come from the absence of distress, we can still enjoy life. If we know what gives us pleasure, we can make a space for it as part of our self care. But as far as said, living with a condition like progressive MS involves many challenges, adapting to those successive changes in what we can and can’t do, recognizing the loss of some mobility, dexterity, or energy that we might have had in the past. And we know that doing this alone is really hard. So something that we can each do for ourselves is to build and to find our own support team that can help us. This may be family and friends. But there are many resources for people with MS. Within the Overcoming MS community. On a different note, I just wanted to also raise this concept of toxic positivity, because I think it’s something that many of us living with a condition like MS encounter, when other people tell us, you know, to think positively, to sort of almost dictate our emotions. And I think it’s really important that we find a space in the conversation, which can acknowledge our difficult emotions, our negative emotions, as well as our positive ones. So we’re really looking for support among people who validate how we feel, as well as encouraging us and supporting us. And finally, I just wanted to say and this is probably stating something very obvious to many of you here today. Pacing ourselves is so important, isn’t it when we’re living with a condition like this, and acknowledging that we need to lead life and we can lead life at a different pace each day and every day A, but if we manage our energy budget every day, every week, every month, carefully, and with self awareness, in fact, we find that we can build energy, and that we can do more. And it’s a much more effective way of conserving and using energy, no sort of boom and bust sort of crash and burn of doing too much. And then not having anything left in the tank. And just feeling completely exhausted. So a lot of ideas, some advice, so to speak. But we thought we’d just wrap up by saying a few more words, just from the heart of each of us about our own experiences of Overcoming MS. And Phil, over to you, first of all,

Phil Startin 

So what’s my experience of Overcoming MS? Yeah, so I think as I said, at the beginning, I took me about four years after diagnosis to actually start to actually adopt the Overcoming MS program. So start starting in 2007, I was going to kind of exploring it in 2011, and 12. And I had some some initial initial progression. After adopting the program I was really strict and going on the retreat extremely strict. And I saw some real improvements. We even with it within 12 months, which I think is quite unusual. So I was really, really fortunate, I had really quite bad foot drop, prior to the retreat that really recovered, my walking got got a lot better. So it was great. And my kind of overall progression seemed a lot slower. And that felt great. And it did that carried on for a number of years. But over the last two and a half, three years, I’ve had a number of UTIs, and just one after the other. And I’m sure a number of you can, can relate to this, that every time I have a UTI, my function drops off. I mean, one time I was hospitalized because of it, but generally, it puts me in bed for a few days, then it takes me a while to recover, build up function again, before, then the next the next UTI hits. And as they’re actually getting more and more frequent, and seemingly somewhat, in some cases more severe, my recovery time is just taking longer. And I’m not getting back up to the pre infection levels. Again, it’s just not getting there. So I’m actually at the moment seeing quite quite a lot of progression. So my norms have been all over the place recently, certain last couple of years. And it’s, it’s, it’s, it’s tough to balance at times, and really frustrating. Because I haven’t changed my lifestyle program at all. I’m still 100% diet, I still meditate, my meditation’s better, better than ever has been, I still still exercise and do do everything I can. So I’m not going to pretend that just by fallowing OMS is going to make living with progressive OMS always easy. Because it’s not, sometimes it’s not. This is a chronic chronic degenerative condition. And it is hugely unpredictable. So even with OMS, we need some time that strength and determination and support that Helen talked about, and some compassion to ourselves when I’m utterly convinced that I am doing everything I can possibly do to slow progression to recover the function where I can. And I think just the motivation I get by taking some control over my own health and wellbeing by following OMS and the support I get from the OMS community. The and I think also importantly, that the awareness and insight I get from my mindfulness practice just helped me live just more lightly at ease with with the condition and still really, really enjoy life. So so to me, that’s that’s that’s my experience of Overcoming MS. Helen.

Helen Rees Leahy 

Thanks. Um, thank you. So you know, as I say, I was diagnosed in 1997, quite a long time ago, nearly nearly 25 years. I guess I started following the Overcoming MS program, sort of pretty soon after the first books were published by George Jelinek so back in the 2000s. And really, it’s become a framework for my daily life. I’ve never been eligible for any disease modifying therapy or drugs in the UK healthcare system. So in a sense, your Overcoming MS is my health care program. And, like Phil, I feel very empowered by following the program, because I feel I am taking responsibility and managing my own health to the best of my ability, and and why I’m not really relying on anybody else to hand me a sort of a wonder drug or anything like that. And I always regard Overcoming MS not as a book of rules, but as a kind of toolkit. And to be honest, I really enjoy following the program. Now, to what extent can I say there are sort of palpable health benefits from it? It’s very difficult. I’ve had a fairly sort of slow, steady sort of trajectory in terms of losing function over the years, haven’t had too many sort of fits and starts or ups and downs. And I’ve adapted along the way to my changing capacity. And to be honest, I don’t really think to myself, Oh, how different would it be if I wasn’t following OMS? How difficult would it be if I could take a drug that would help me, I just lead the life that I lead. And it’s not always easy, I get angry and frustrated like everybody else. But by and large, I can enjoy my life enormously. And nowadays, I self identify as disabled. And, yeah, there are some things I can’t do. But there are even more things that I can do that I enjoy. I enjoy greatly. So that’s an I think we’re also different, but we thought it might be, you know, possibly interesting, just for each of us to talk quite personally about that.