Nick
Hello there. I'm Nick.
Helena
And I'm Helena. And we both work at the MS trust the charity for people affected by MS in the UK. We are here to help you make sense of MS.
Nick
Thanks so much for joining us today on our podcast Breaking it Down. Today we're going to be talking lots about smoking and what impact that might have on MS.
Helena
Yes, here in the UK, we've got a big campaign going on at the moment. It happens every October, it's called Stoptober and it's run by the NHS, which is all about getting people who wish to stop smoking the sort of right tools and help.
Nick
Yes, a really helpful campaign, isn't it that one. Within our helpline and on our social media we get lots of people sort of ask us questions about smoking and how they can stop smoking, what impact smoking has on MS. So, we thought it'd be a good time of year to release a podcast like this one Helena didn't we.
Helena
Yeah, now we do know that this subject can get a bit heated. We noticed it straight away when we posted some, we asked for some questions on social media about this and we got quite a lot of comments like, "I'm smoking and I'm not quitting, it's like the only joy I have these days". It was almost like we were trying to take someone's cigarettes away.
The same from the other side, you get can get people who are like "Yes, I stopped smoking and was the best thing that ever happened to me".
Nick
Yeah, for sure, people are so passionate aren't they about, either stopping smoking or, as you said, people who still smoke and sort of don't want to be told - stop telling me not to smoke. Which I do completely understand as well, you know, for me if someone tells me to stop doing something, stop eating something, stop drinking something, that's the last thing I want to do. I will just want to go and do that thing more.
We don't want this podcast to just be for for people who have just stopped smoking used to smoke, don't smoke, we want this to be for everyone. So if you smoke, if you've given up recently, if you're thinking about giving up.
You know, we're not here to lecture you on what you should and shouldn't do. I think the aim of today is to talk about some of the research, talk to some people who have been through the smoking journey and for you to be able to go away and make your own decisions about the information that you've got from us today.
Helena
And that's what we want to do all the time because we are an information charity.
So I will be chatting to Professor Richard Nicholas, who is a consultant neurologist who is also involved with the MS register. He has done a lot of research into the area of smoking. So we will talk about what happens in MS when you smoke.
Nick
Yeah, and later on as well. I caught up with Caroline Smith, who is one of our volunteers from the MS trust. So she lives with MS herself. She was a smoker for many years so we kind of talked about her her journey, it's really interesting just to get her insight on it and what's happened for her. I guess it's probably best that we kick off with yourself in Richard Nicholas, Helena. How does that sound?
Helena
I think so let's get into the research. I have the honour, today, to be speaking to Professor Richard Nicholas who is a Consultant Neurologist and works also together with the MS register. I believe you've done quite a lot of work around smoking in MS.
Hi, Richard. Welcome to the podcast.
Professor Richard Nicholas
Hi, thanks for having me. Thanks for listening.
Helena
Just before we start talking about smoking, could you just introduce yourself and just tell us a little bit what you work with?
Professor Richard Nicholas
I'm a Neurologist, I work in Imperial Healthcare Trust and we have a large cohort of people with MS. We use all the disease modifying treatments. We also have a programme where we do stem cells and I also work in the UK MS Tissue Bank, I work in the MS register. So I see people with MS every day.
Helena
Sounds like you're fairly busy.
So we're talking today about smoking and I suppose everybody by now knows that smoking tobacco is bad for you generally but what evidence is there actually that it's particularly bad for people with MS.
Professor Richard Nicholas
Well, this is something that's been developing over the years and one of the big difficulties is, I think, as you said, smoking in itself isn't really good for us in general. It affects the lungs and causes blood vessel damage on people over time. That's one way that smoking affects because it causes other co morbidities so it causes other damage in the system and in MS, you're sort of slightly not functioning at optimal in terms of your nervous system, so one of the approaches, in general, your keeping your health good is that if you can keep all the other bits of you working at its best, that slight idea of diet and lifestyle, then it gives you ability to compensate from that problem. So, one is that smoking probably causes more co morbidities and causes lung problems that affects oxygen that then affects MS symptoms but the question has always been has MS itself been affected by smoking? There's a lot of data that's accumulated over the years from Nottingham and we've done some data which shows that, over time, smoking causes the condition to get worse a bit quicker than those who don't smoke. One of the problems we have then is why and it's just because people who smoke have other things wrong with them but it appears not so. For a long time it was shown that, actually, smoking causes damage that makes things worse about it and the question comes is how does it do that and when you look at smoking normally, normally, when we ask people to try and stop smoking, your risk of cancer goes away after about five years but your risk of strokes, I also do stroke, your risk of stroke goes away very soon and it's probably in inflammation and effect on the blood vessels and some work that we did some years ago with Professor Chataway I'm looking at Simba Statin as a treatment which is a treatment that affects blood vessels we're just completed another little study, looking at how it affects blood flow. So the question is whether smoking affects the vessels, the blood vessels that restricts that that causes damage that then affects MS itself.
Helena
Oh, that's interesting.
What is it then that is, sort of exactly, bad about smoking? Is it a process? Or is it what's involved? Like the tobacco or...
Professor Richard Nicholas
I think, we think I mean, I don't know all these answers absolutely, but we certainly think that the smoke itself is what the issue is. So it's not so much, necessarily, the nicotine side of things, it's actually the smoke itself. That causes damage and inflammation in the blood vessels and that's the bit if you stopped smoking, that goes away quite quickly. So whether you smoke cannabis or whatever it's smoking, that we feel is the most issue about it. I mean, and the question then is, what if you do use things different ways?
Helena
Yeah.
Professor Richard Nicholas
I mean, we're just looking in the MS register, we're just starting to look at vaping. Whether because vaping, obviously, their nicotine sometimes or nicotine free, but they have a lot of smoke and is that smoke good for you? So that's the question, I think, it's a question for a lot of health issues about vaping, that we're still starting trying to understand, but certainly things like the nicotine patches and things like that we feel don't have the same issue. One of the things that we show recently, which is a lot of things says things get worse but, actually, stopping smoking can make things better again. So one of the things that is really positive is that if you can stop, you do seem to then go back to what controls are over a period of time. So it does seem that things slow down again about it. So, you know, it's a positive thing to do.
Helena
That's, definitely a nice thing, isn't it? Because it's not like, oh well, I started smoking so I might as well just keep on them because you, actually, can see a difference.
You mentioned vaping, when we put questions up for the public for this podcast, lots of people were asking about vaping because I was thinking of it the other day. When you walk down the street you don't see as many people smoking but you do see an awful lot of people vaping. Is there a lot of data about vaping? I mean, it's really new.
Professor Richard Nicholas
In the MS register at the moment, we've been collecting data for about four or five years. So we don't. I'm actually, just today, starting to write an approach to try and see if we can gather that data together. It takes a while to know if it affects MS itself the same way but also who vapes and how vaping fits into the picture with people with MS as I say about it. One thing we did show is that if you smoke less, it's better so, basically, cutting down is positive, if you can't stop entirely. Then you know, realistically, people would change to something like a vape and is that an issue? So I really don't know and I think we need to try and prove that for people for the future to know that.
Helena
That's really interesting, you did mention cannabis as well is that something that the MS registry is looking at as well?
Professor Richard Nicholas
We have looked at cannabis. Cannabis is a difficult area there's, a sort of, limited access. It hasn't really been helped by the government at the moment in terms of accessing it. There's, obviously, the spray that Sativex spray, there's things like CBD oil, which we're not sure about and how that fits into the picture. There's people who smoke cannabis and in terms of taking cannabis in general we, generally, feel smoking it is the thing that we don't really like. When you smoke cannabis you tend to do it without a filter, therefore, it's much more damaging to the system in general. People who smoke cannabis, generally, it does affect it can cause problems around the mouth and ulcers and stuff like this about it. So the idea is to take it in different formats potentially, if people take it as they get access to it in different ways.
Helena
Oh, that's interesting because you spoke a little bit about whether tobacco in itself was dangerous or not because obviously there's other ways for people to use tobacco. I come from Sweden myself and the people do snuff a lot there where they will stick it under the lip. I mean, it's far more common than smoking or you see everybody walking around with it sort of hanging out underneath their lip.
Professor Richard Nicholas
So in so in the UK that's not the tradition, so we don't really have that. We don't have that much data on it so, I think, it's really difficult to know whether that's I mean, I know in people who do that it does affect locally, causes issues about people. But does it cause more general things, that's what I don't know. So you're right. There's lots of different ways people might do that. We do actually work with the Swedish MS register with Yan Hillett, so we can, maybe, talk to him about it because our smoking data was very interesting but it's also to try and see if it's the same thing that affects people worldwide it's to helps everyone.
Helena
Yeah, I suppose in the UK things like chewing tobacco, I've never really heard about that in the UK but you certainly do hear about people in America still doing things like that.
Professor Richard Nicholas
Absolutely, I think you can get now and also something, which is intriguing, because they've made vapes with tobacco vapes and heated tobacco, so there are all these different types of products, which really gradually start to hear about but, obviously, in terms of a particular medical condition, it takes us years to really figure out what these are doing. Obviously, there's a lot of things happening to people, treatments and lifestyle factors as well so all of those add together.
Helena
What about passive smoking? Now, that's something we hear a lot about.
Professor Richard Nicholas
So we haven't really got any real data on that to know, we think there's, we don't know, we don't know about it. I think, given that there is some elements of passive smoking that affects people it's not unreasonable to think there is something that's there. And it's, again, different countries because, obviously, in the UK you can't smoke in pubs and restaurants. It's funny when we go around Europe even, you see people, so your exposure in the UK is certainly outside the home is much more limited than it used to be. I can remember going to carriages with everyone was smoking train carriages and now, of course, there's nothing.
Helena
Which is a nice thing, isn't it?
Professor Richard Nicholas
Yeah, both my parents were smokers and we used to go travelling quite a lot in the car. I remember sitting in the back seat suffering and it wasn't a pleasant thing. So I'm very pleased that there is laws against that now.
So we mentioned a little bit about the impact of MS progression. So is a proven thing then?
Professor Richard Nicholas
So we, basically, took so the MS register, luckily, we've got about 17,000 people who've taken part and we've got about 5000, sort of regular users, and they fill in questionnaires every six months which, it must sometimes seems a why am I doing this but it really helps to, therefore, we can work out how people are changing over time. We've taken some advice from some German statisticians about how to try and look up what's happening over time and we can then pinpoint to starting treatments or interventions. So we're able to see that smoking when it started it started to cause more damage over time. So it affected your motor function in terms of walking and other function as well, it's difficult, it also links a part from low mood and mood is a complicated thing in MS because, you know, people get depressed if they've got MS but is depression part of MS and how does it fit in and, then again, with smoking do people who smoke, so Alera, was one of my students who helps did smoke at the time said - “you smoke because you're depressed, or does smoking make you depressed”?
So all these interactions with mood is really important. If smoking helps people function or they feel it helps them function, what are we doing? That's a problem for all of us in terms of telling people to stop smoking, is that really the thing? So, obviously, there's a health benefit but then is there other benefits that people say? So it seems that people who smoke probably are more depressed, in general, about it and they seem to get, as I say, depression comes and goes again. So we haven't quite looked at that with the smoking as how it improves because we're still trying to figure out how it works interacts with that and MS itself, so people can get lower mood in relapses when they get inflammation.
So there's so many things that can affect your mood. It's difficult as you can imagine.
Helena
It's really interesting because, again, when we posted that we were going do this podcast and we're looking for questions, we got quite a lot of more comments than questions about people saying, smoking is the only thing I enjoy in life, you're not going to take that away, or my MS is rubbish and this is how I cope with it. I can understand the frustration with these people because you don't want to try and shame anyone into stopping smoking.
Professor Richard Nicholas
I think the problem is that if you stop smoking, we're not going to make you suddenly, you know, people don't get as worse as quickly as they were but they still can change. So that's what I mean, it's not magic. For us, one thing is that it's about smoking but also drives research into what's going on at a level.
So if there's inflammation there, I think part of this was where Simba Statin came in is that Simba Statin reduces inflammation in blood vessels. So in a sense, does that help? Is that how it works in MS and in MS in the brain around the lesions usually around the little blood vessel that gets blocked, so the idea is does it help the blood flow? Which leads back into what people were saying some years ago about CCSVI where we're doing this other with a blood flow type problem, is there a blood flow element to MS about it? So it's trying to optimise and also when you're looking at hyperbaric oxygen, which also is something that allows more oxygenation. It's trying to keep the brain functioning optimally. The reason I would argue it doesn't help longer term partly is because it washes out of your system, when you're in the chamber, it's okay but once you come out, so that oxygenation helps you function more.
Helena
That's interesting because we do get a lot of questions around that.
Professor Richard Nicholas
Whether it's a lot, as I said, what we want is new approaches for new treatments so, obviously, we're doing these disease modifying treatments or anti inflammatory. That's where we've got these big octopus trial and all these big trials starting is to try and look at new ways of trying to approach the condition that isn't just giving more immune drugs.
Helena
Yeah. That's really interesting, actually, when we mentioned MS Register for someone who doesn't know what it is, would you mind telling us a little bit because I feel like signing up for this?
Professor Richard Nicholas
Basically, it's an ongoing study, so it's been going since 2011 and it's collecting people's with MS experiences of MS. So if you sign up you get some basic information, then we monitor people over time filling out questionnaires. Now we've got over a million questionnaires in the system and we just finished it. When it started I wasn't there at the beginning, I came around in about 2017 and now we've got a million questionnaires. We've just done a collaboration with the US, Sweden, Denmark and starting something with the Italian group. We're trying to get big answers, answer big questions across many areas which need lots of data. It's really starting to fill in and the idea is we're just doing some work with other chats. So we're doing work with overcoming MS, which is looking at diet. We're trying to look at with Australians we're trying to look at diet approaches, as they've been looking at smoking, vaping and depression, all these elements to try and help us get more insight but also sitting around trials like the Octopus trial, so it helps, because the trouble doing trials cost a lot of money. The trouble is they may not work so by doing it online enables us to follow people longer term at a lot lower cost and we can get the long term answers which is what we need and MS all our trials are usually based on two-three year studies. The long term is it's really helping? It takes a long time and same thing of saying things like smoking, you stopped smoking, well, things might get better some elements might improve. I mean, when people stopped smoking, I tell people in general, I mean, in my normal clinic, it's about, well, if you've got breathing issues, they they get a bit better after a few months, but there's no massive positive health, not smoking. How does that fit into you itself getting these longer term? Again, with diet it's a lot of testing. Personally, I think diets got an important role but it does take a long time to figure that out and life is complicated. So, large numbers of people over a period of time enable us to start to answer those questions.
Helena
That's brilliant. We'll pop the link to the MS register in our show notes and I would say to anybody who's listening to the podcasts, especially the people who got in touch with us who are smokers and want to continue with that, why don't you get involved in it? I think you clearly are people who you guys want to hear more from and hear how it's going.
Professor Richard Nicholas
One of the thing that we haven't done is how do we, as you say, smoking has a role in people's lives and how do you stop it? I have that all the time is that people, it's not just me saying, Oh, you must do this. I mean, well, why? There's a positive but there's other elements to life as well, which are really important.
Helena
I think that's the thing, isn't it? Because quite often, when we ask MS Nurses or Neurologist, can you tell us one thing that you would help people with MS. Most of them say, Yes, stop smoking. It is really, really, really hard. I mentioned my parents before my mum, she wouldn't. I mean, if you said Stop smoking to her, you would almost get your telephone slammed in your ear because it was such a part of her life. It was really, really hard. So I feel like that approach of, actually, trying to help people stop being you really need to want to do it because you can't, really, force anyone to do it.
Professor Richard Nicholas
Yeah, exactly. I think, actually, interestingly, having banning it from say, pubs and restaurants made a difference to quite a few people because that's where they, sort of like a response and environmental with your friends, you know? So that's in the UK, it seems to make quite an impact on people about it. As you say, it's social, there's a lot of elements to that, that go beyond that and your health is one part of you. There's a lot of life to get on with and a lot of stresses to deal with, that's stopping smoking doesn't, necessarily, help those.
Helena
Yeah, that's it. So if you want to give up smoking, we talked a little bit about nicotine patches and things like that. So you think those are approachable ideas?
Professor Richard Nicholas
There's treatment out there, which, normally, I mean, it's very difficult with a pandemic, but we'd say go and see your GP and then they'd have advice about stopping smoking. I don't know how that's doing at the moment but yeah, I think it's something about the smoke that it's the element of it. It's about that inflammation in the blood vessels, which nicotine as such does, it's a sort of a stimulant to a certain point. So obviously, nicotine has its own issues but it's not the nicotine bit that we're really against or thinking about. As I say, that's what's led us down this sort of treatment pathway is that it's about as effective as disease modifying treatment stopping, so that's it's big.
Helena
Wow, it's big!
Professor Richard Nicholas
Yeah, it's significant effects, so something that and over time, that keeps people well longer.
Helena
Yeah, so it's a really, really important piece of the puzzle to try. Like you said, is tricky now because we all know that it's really difficult to get to your GP or see your MS nurse. There are still stops smoking clinics and things like that out there, I think.
Professor Richard Nicholas
Yeah. Yeah. They're starting going again. I think we, as everyone probably knows, we've been through quite a difficult period and for people with, you know, generally MS and people with disabilities, it's been a very alarming period of services changing so much that I don't know if we're really out of it. I think the smoking services are very important for everyone, as I say, it does affect you in many ways and that's the thing, it's good to keep to try and do that for your general health. Also, getting out meeting friends doing stuff, it's about getting out there as well, which is all those bits.
Helena
Yeah, that's it and especially if smoking is a big part of your social life then, maybe, how can you fit that into to life? It's a tricky, tricky one. I think, there's certainly, because of these big campaigns like Stoptober and things like that, that's going around, there is information from other charities, not necessarily MS ones.
Professor Richard Nicholas
Yeah, when we started this we spoke to the team from about it Manchester they said, I haven't really emphasised the importance of it so I think as us MS professionals really, starting to say more about trying to get people understanding that earlier on into their, as I say, why people because there's a whole wide range of products out there which we don't want to stop people being normal. I don't know how all those products fit into the general picture
Helena
But, there will be more research coming out of that because we're wondering.
Professor Richard Nicholas
At the end of the day we want people, the most important thing is to be normal, be active, get out there and do stuff. So, how does it fit into that. That's where people have their own views.
Helena
We mentioned progression and things like that, how about smoking impacting other symptoms because you did talk about depression, but things like fatigue?
Professor Richard Nicholas
We didn't see anything major, from that point of view about it. I think that is the thing, is that, when you've got depression, that can affect the T, and your condition. So our problem with fatigue is, generally, one of the things is how you measure it. So it's very difficult. There's a bunch, we give treatments for fatigue in MS, the trouble is they help sleep related fatigue and they don't seem to help every element of the fatigue. So I don't think, it made a big difference, we didn't show anything major from that point of view about it.
I think fatigue is a problem, it sounds a bit odd, we say this about people, some people are, basically, they're doers, they just do till they're tired. They're always just doing stuff so what happens is, if they're feeling a bit better, they get more productive in that time, if you see what I mean. So they can do more, but they're still equally tired, so it's difficult. About a 60%-70% of all of us gets fatigued but in MS fatigue it's is much, much higher, massively higher, and different for some. We didn't see anything?
Helena
No, that's interesting. Well, I guess I've really just got a final big question, then.
What would you say to someone who lives with MS and is thinking about stopping smoking?
Professor Richard Nicholas
I would have to say, in general, it's a good thing to do. It's not easy though, I wouldn't argue that. Having support is important to do that but I think, as you said, sometimes people make up their mind that they want to do that it's very difficult how people stop some people sort of take the packet and just say, :I'm gonna stop'. Actually, for me, it's not uncommon that people go down slowly so even if you can say half it you're starting on the right road. I don't think you can say, 'Oh, it's a such a lot I can't do anything', just a little bit to start. My mother was used to smoke, she stopped over about five, six years, just gradually decided that she wants to cut it down. It's important for your general health, down the line, definitely and I think in terms of your MS is it going to affect how some of the treatments work is another question we've been wondering about but even cutting down is a start.
Helena
Yeah. I think it doesn't need to be...
Professor Richard Nicholas
Manageable steps managing that, I think, is really important.
So as you say, there are lots of things in life that some people linked to that and this and if you really think, 'Oh, I'm going to stop', that's just not going to work. So you just have to be practical. So well, 'I'll cut that one' and then the other thing is trying, we have been saying to try vapes try other things, which, again, I don't know, these are other things, the nicotine patches, whether that's the element of it, so, I think getting support, which is something that's slightly missing in that picture, at the moment, it's really important to help people but don't feel you have to just or must stop, you know, that's not really an approach. it's what's achievable. There's so many different ways of doing that.
Helena
I think that's really right because, I think, the fear when you do something like this podcast or bring out any campaign people are just going to feel like, 'No, I'm not going to listen to that, because somebody is just going to tell me what I'm doing is wrong, and it's bad'.
Professor Richard Nicholas
I think all these things, I'm everything you do is, there's so much to it, it's not to put a medical condition dow but it's part of you. It's not defining you or define everything we do. As you say, we see people meet, it's part of them but it's not the whole thing and, as I said, at the end of the day what's normal is about getting out there doing stuff, you know, and for normal is very different for different people.
Helena
That's very, very true. So, if people want to get involved with the MS register it is the best way to just type in MS register in Google and while you're waiting for them...
Professor Richard Nicholas
Absolutely, join up that way, that's absolutely that's the best way to do that. I think we're just about starting out look at vaping and we're going to try and start to try and get a little bit more understanding about how that fits in with people who smoked and all these pictures, so definitely be great.
Helena
Oh, that sounds fantastic so, maybe, we can catch up on that and talking to you in the future about vaping then that'll be interesting because we do get so many questions.
Professor Richard Nicholas
Maybe you should do that's the thing, i don't know.
Helena
Yeah, excellent. Well, thank you so much Richard it's been very interesting.
Professor Richard Nicholas
Thank you. Thank you.
Helena
Good luck with the research.
Professor Richard Nicholas
Thank you. Thank you very much and thanks for listening, MS Register and try and help us let's get some better news. We want new cues, we want new treatments. That's what we need. That's what we're trying to find.
Helena
Yeah, it's really important to get on there get on the register.
Now, if this was commercial podcast here there would be an advert but as a charity, we don't do that. Instead, we'd like to take the opportunity to tell you all about fantastic resources for people with MS.
Nick
Our website is MSTrust.org.uk and there you can find lots and lots of information and resources for people affected by MS. So if you head over to our website you can find some information on smoking, you can either head to the search bar and type in smoking or you can go ahead and find our A to Zed section of our website where you'll find information about smoking and many other things related to MS too. So go and have a look for yourselves.
Helena
Now over to Nick's chat to Caroline.
Nick
Hi, Caroline. How are you?
Caroline
Hello, there, I'm fine. Thank you.
Nick
Brilliant. So Caroline's one of our fantastic volunteers at the MS Trust. I was wondering, just before we kind of get going Caroline would you like to just explain what you do in your volunteer role?
Caroline
Right? Yeah, I'm actually a moderator on the MS Trust Facebook page. So I kind of try to keep people in line and make sure that we keeping on track of MS and not getting distracted and try to do that. Going back before then I did work on a project many years ago, the MS Forward View Project with with the MS Trust , that's when I first got involved with MS Trust. So I've been involved for many years now.
Nick
Amazing. Yeah, we were just chatting before we started recording, we're just really thankful for the job that you do because there's a lot of people in the Facebook group. Actually, there's all kinds of questions that get asked and people needing support with lots of different things and actually having someone like yourself to support us with that is just, absolutely, amazing. So we're all very, very thankful for you Caroline.
Caroline
I totally enjoy it. I think it's always the way that you're always going to get things to come up when it's not nine to five, Monday to Friday and you as staff are not really there. I know, Helena appears out of hours, actually, most people do seem to answer things out of hours as well. It's nothing it's always gonna kick off or something, you know, Saturday afternoon or something or Christmas or whenever.
Nick
Yeah, that's social media, isn't it?
Yeah, no, thank you. I guess just before we get going to say, if anyone is looking for a bit of community support within the MS community, you can join our Facebook group if you search multiple sclerosis trust group you'll find it there. You can also ask questions in there as well one of our helpline team will will get back to you as soon as they can. You can also chat about your experiences. Sometimes it's just good to talk to other people who are going through what you're going through and actually, have been there. So do if you're looking for some of that community support.
Caroline
I think it's a great place to be everyone is really friendly and you do learn a lot. There's things like symptoms that you may be have that you're just put to the back your mind and then someone will say 'Oh, is this an MS symptom'? and you kind of think, well, what about that and you've never actually attributed that to MS so you keep learning. I still I learn after all these years. So it's a brilliant place to be.
Nick
Lovely. Thank you again. Thank you so much for joining us today Caroline. Obviously, we'll be talking a little bit about smoking and sort of your journey with smoking but before we get on to that, would you mind telling us about your MS journey? So when you first diagnosed and what you went through?
Caroline
I was, actually, diagnosed in 2008, symptoms first started around 2006, that was the first time I was hospitalised not able to control my limbs really. That was quite a scary time and then we were waiting for the next episode to, actually, get diagnosed. So, actually, then officially diagnosed in 2008. I started on a DMT pretty soon after that but my MS did progress quite rapidly in the sense that I don't get relapses, I'm now secondary progressive, very progressive since 2011, approximately. To me, I know a lot of people think that's quite negative being secondary progressive, but it's quite nice because I didn't sort of worry if I might have a relapse and wake up and not be able to move. I don't have relapses now. So it's not an issue. So for me, it's quite a positive, which is quite weird and things have kind of pootling along really sort of, since then.
I just like to get involved with things. I do like speaking out, I am passionate about speaking out and raising the profile of MS and our journeys, getting the support and things that we need, which is one of the reasons why I get involved with the MS trust to, actually, enable our voices to be heard, I think, is really important.
I gave up work in 2013 ish. I was 30. Yes, so it gives me something to do, all this volunteering and things such as is good.
Nick
Wow. Yes. That's amazing to hear and so important, as you were saying, to raise that awareness for others in the community as well. Before my partner was diagnosed I didn't know that much about MS. I'm still learning every day as well. So yes, I know, it's so important, we really appreciate everything that you do for the community.
Caroline
I think it's something, if we're not raising our voices, who's going to speak for us almost. I know, that our voices are more powerful, they make MS Trust much more powerful, because it's us. We're saying, this is what we want, this is what we need, not just you saying, Oh, that's what people with MS want and need, it's important and I think it does give us something to do. Makes me feel useful. I worked in the NHS for 22 years helping people that was something, I was passionate about that. I can't do that any more. I can try and make things better for people with MS and for people with MS in the future.
Nick
Yeah, definitely even though you might not feel like you're having this similar impact, like you are and I know that you are because I see what you do every day for the group. So yeah, it's really really important.
In terms of smoking and the topic for our podcast today, could you tell us a little bit about your journey with smoking as well? When did you start smoking?
Caroline
I started, I was 17-18, I think, around that time with a lot of my friends and everything. Yeah, it was much more the thing to do, the thing we did as teenagers and things and yeah, I started when I was around 18 and I carried on smoking for 25 ish years. So yeah, long, long time when you look back on it when I actually started it didn't seem that long a time but it is something that I did and wasn't really something that I was bothered about giving up, if you like. It was something I enjoyed. Yeah, me and my friends smoked and it was that thing that, absolutely, became part of who I was and it wasn't. You know the health risks but it's not something that I felt that I wanted to give up, if you like. So it was a long time was smoking.
I didn't have any kind of problems from it. It didn't make me breathless. I wasn't aware that it was causing any issues to me.
Nick
It's interesting you mentioned that social side of things. I think that's how lots of us start smoking, isn't it? With your friends, in a social group, where you're at work and you pop outside, you know, other people who are having a break. It's very easy to start, isn't it?
Caroline
Yeah and certainly, when I started you were smoking inside, it wasn't something that you didn't have to go outside, people smoked in pubs in clubs and restaurants, whatever. Even when I went to off to Uni and things,it wasn't smoking throughout the building but there ware places where you could smoke inside so you wouldn't even have to go outside. So yeah, it was much more acceptable, I suppose then, than it is now.
Nick
Yeah, definitely. So you, sort of said, it was about 25 years you said that you smoked?
Caroline
Yeah.
Nick
What was it that made you think, right it's time to stop now?
Caroline
I suppose it had been in my head, they've been odd times. I'd sort of thought, Oh, I'm going to give up I don't think I'd been particularly bothered about it. To be honest, what actually made me stop smoking was my GP.
Nick
Really?
Caroline
Yeah, the GP I had at the time, I had a really good relationship with him, he was never kind of preaching about it, he would just go, "so when you're going to give up"? It was yourself, "when are you going to give up" and I kept score. So I was going to have one when I'm stressed, or there's all this going on. Then he just turned around one time and just said, "you're always going to be stressed, you're always going to have an excuse. So when you're going to give up"?
That just kind of, I suppose hit home. I don't know why, at that particular point, it hit home and I thought, yeah, I am, I am making excuses. You know, there's no reason to do this and, and we just kind of agreed this date. It was, I think, three or four months time. Right, that's when we're gonna give up.
So I have to credit my GP at the time for just actually not preaching, not nagging, but just literally "When, just stop, stop making excuses and get on with it".
Nick
That must have been quite a straight talking GP to deliver that information in that way, you know?
Caroline
To be honest, he'd been my GP through a lot of my issues with MS. When my transition from relapsing remitting to secondary progressive he'd been my GP, he'd been dealing with all my pain, he'd been dealing with when I left work, he was supporting me on leaving work, where I lived at the time, I didn't have an MS nurse.
So my GP was key on my MS treatment, he was the one that I could go to all the time. Whereas, now I might go to my MS nurse, I didn't have one so my GP was filling that role too but he was very knowledgeable about MS because he had to be not just for me but for other patients. In where I lived then, people with MS tended to gravitate to that surgery. They had a good reputation for understanding MS because we didn't have an MS nurse. So there was quite a lot of patients with MS there. They got all quite knowledgeable. He'd been very supportive all the way through and helping me with MS so we did have quite a good relationship in that cense. I think it was just that sort of he, obviously, was comfortable, he would say to me "just get on with it". I kind of took it from him whereas I, probably, wouldn't have taken it from a lot of other people. If I'm honest about it.
Nick
That's so interesting, isn't it, just to have that relationship that sometimes you'll listen to information if it's given in a certain way, whereas, some other people,you know, you think "don't lecture me" or whatever or however you're thinking, right?
Caroline
Yeah, yeah.
Nick
Then you mentioned that you gave up.
Caroline
Yeah. I stopped in 2014.
Nick
Yeah and that process of actually giving up cigarettes. How hard was it for you?
Caroline
It actually wasn't. It still amazes me because I try it, I had tried to different points throughout thinking I'm gonna give up, I'm gonna give up and it was just like impossible. I think I had a long, I did have months to think about it because we have this date and I had months to think about it. I just was like, right, I'm gonna do it. So it was in my head, I'm gonna do it, I'm gonna give up on on this date, so it was in my head for ages and it didn't actually tell anybody which I think helped as well because then there wasn't the well meaning people who think that they're being supportive but, actually, it's just adding to your stress. So didn't even tell my other half, I'd say that "Oh, we've got a date, I've got a date, we agreed your date with a doctor" but didn't share it or anything. It was, actually, a couple of days before and I was kinda like, I should go and buy some more cigarettes and I thought, oh no, i won't bother but if I'm desperate I'll buy some more because I haven't got to the date yet kind of thing. I think that kind of, almost, gave me permission in my head that yeah, I could smoke or not and I just didn't.
Nick
Wow, that's really interesting that because some people they'll want to share that with other people and have that kind of accountability or shared journey. Then for someone like yourself actually just keeping a low profile and saying, actually, this is my thing, and I'll get through it soon. Really?
Caroline
Yeah. I didn't want to make a big thing of it because in the past, I'd kind of said, "Right, I'm giving up then" and it's then and your sort of throwing everything away. I didn't do any of that. I didn't even you know, I think it was smoking in the car and I think it was about a couple of weeks before I even emptied the car ashtray. It wasn't I wasn't bothered by it. So when I look back on it I think that was really quite surreal. I don't quite know how it worked but, obviously, whatever clicked in my head and that was right for me at that time.
Nick
Did you get any cravings? Or were you kind of having cravings for them at all?
Caroline
No.
Nick
Wow. Really interesting.
Caroline
When I tried in the past yes, it was horrendous but yeah, it was. So I don't know what, it just was right. I got it. I don't know whether the all those months of thinking about it and I did do a lot of thinking about it in the time leading up to when I was gonna give up. So whether that got me into the right mindset.
So it was really weird knowing that I didn't have the sort of the cravings or anything. It was like when the nurse said I should try going to decaf coffee. I mean, that was horrendous. I mean, that was cravings and yet I didn't have any cravings give up smoking. This is weird,very weird.
Nick
Wow. Yeah, certainly, I know the feeling of the coffee. I think I might need one soon.
At the moment, there are lots of nicotine products around from vaping, to patches to gum and lots of things that people use, either to try to stop smoking or replace nicotine intake. Did you use anything like that at all?
Caroline
I did do in the past. I used patches, and it just really didn't work for me. I've got friends who have flown by using patches. I think it just shows that we're all so different. What really works for somebody isn't going to work for somebody else. I've got friends who vape and that's really helped them to move away from from smoking cigarettes. So I just think we're all so different. There's not a one size fits all.
Nick
Absolutely, and I think vaping is probably something that we'll cover separately, just because there's still that evidence base being built around what the effects are around it. We will see. Yeah, very much used a lot by lots of different people at the moment so I think it'd be interesting to see what the impacts are as we go forward. Yeah.
In terms of your MS symptoms, if you like, did you notice any differences after stopping smoking?
Caroline
No, I didn't, looking back, I do wonder whether there's been a year whether the smoking had some impact in how my disease progressed. I do wonder that but, obviously, never going to know that. I didn't notice any symptoms got any better or anything. There just there?
Nick
Yeah, absolutely. In terms of, maybe, not MS symptoms then but in terms of overall health, breathing to sort function did you notice any differences at all?
Caroline
No. No. The only thing that I noticed was that food tasted better. They tasted different, sort of, new spices and peppers and things like that were much much stronger. So I, really, noticed the taste but not really anything else.
Nick
Yeah, yeah, that's interesting isn't it? I'm sure some people would would think if they stopped smoking, if they're listening to this or stop smoking, maybe they'll have they'll feel much much better in certain ways. Then some people might not notice as many differences, like yourself, it's so individualised, isn't it?
Caroline
Yeah, I think there isn't a one size fits the same as anything else. Yeah. If you're sort of thinking, oh I'm gonna give up smoking and next week, I'll feel like a whole new person. Well, I didn't but you might depending what symptoms you have, you never know.
Your pocket will certainly feel a lot better. Yeah, definitely noticed that.
Nick
Yeah, this is probably slightly off topic now but just seeing how much a packet of cigarettes costs now it's a lot more, isn't it for people who smoke and who are smoking regularly, it's a big financial drain, isn't it?
Caroline
Definitely, it just gets more and more scary each time. So yeah, I think that's quite a big incentive. Probably, was quite a big incentive for me, actually, because it was not long after I'd given up work, I had to take early retirement, so having that extra money when you had a cut in your income anyway, was quite helpful.
Nick
Yeah, yeah, absolutely, and Caroline you mentioned your GP kind of said, when are you going to stop smoking in that way, I would have loved to have been a fly on the wall.
How do you feel? Do you think MS Healthcare Professionals should have conversations about smoking with with their patients?
Caroline
I think that's a really difficult one because I think it depends how you do it, almost.
I was not aware until quite a bit after I'd actually given up smoking that my MS might be impacted by smoking. So I would quite have appreciated being told about that. Just being told that there is evidence that smoking has this impact on MS progression or MS symptoms and actually been given that information, but not being told to give up.
Nick
Yeah, yeah, I'm with you.
Caroline
I think that's always the thing because you want to have a good relationship with your MS professionals and if every time you go in to see them they're lecturing you to give up smoking, that's going to impact on your relationship with them and how you take note because you don't want to be told what to do but I would quite maybe appreciate just to, even if it was like, a leaflet or go and check this out on the on the MS Trust website or something as to that stuff because you know the health risks of smoking. You know, that's so drummed into you throughout your life as a smoker. That's just the general ones. I don't think I'd want my MS professionals to be lecturing me about that because I think I know that already. Actually just say this is the evidence that it can have an impact on your MS. That might have been something, but not to do it every time you go to see them not to lecture you about it or anything, but just to, you know, just maybe have a a quick, this is the evidence and leave it at that. I think we're all intelligent people, we can make those decisions and I think as a smoker it's maybe not the healthiest thing to be doing but you enjoy it, it's part of your life. Sometimes it's one of the only things you might feel that you've got to enjoy and if every time you go to see someone they tell you to give up smoking, it's not good for you, give up smoking. You know, we have got choice. So it's that not preaching but just giving you the information would be what I would have liked because, I think, when I was smoking I did not realise that there was evidence that it might have an impact on how my MS was progressing.
Nick
Yeah, yeah and I think a good way to, for me, if I'm ever told to stop doing something I'll probably just want to go and do that thing. Stop eating this, well now I just want to go and eat that because you've told me not to, is that kind of that element of being lectured to. Isn't it?
Caroline
Yes it is. You know those things you don't need, if you want help to give up smoking, you will ask for it. Yeah and yes, I know that the NHS do a lot to help and there is all that help there and as an ex smoker, yeah, I knew that was there, didn't mean that I accessed it. The more that people moaned at me to give up, the less likely I am to do it and it does then have an impact on that therapeutic relationship with your team. So, yeah, give you the information but just as a state the facts, this is what it does to MS, not lecture about anything else because you just don't listen. The appointments are short enough. You don't want to spend half of your appointment with them lecturing you about something that you're not gonna take any notice of anyway.
Nick
Yeah, very, very true. So I guess it's that, the approach that you'd like to see is, here's some important factual information about the risks and the benefits to smoking or stopping smoking. You know, have a look at that, make your own decision.
Caroline
Yeah, and just not keep going on about it, you don't want then the next time you go back to "have you given up smoking" because it just puts you off and to me, it's not right.
Nick
Yeah, and it is one of the most addictive things that exists, isn't it? It's one of the hardest things to give up is nicotine and smoking. So it's not going to be an easy journey.
Caroline
I do firmly believe there's a right time for everyone to do these things if they want to and yet, the more that someone nags at you, the less likely you are to do it.
Nick
Definitely, definitely.
Caroline
The nature.
Nick
Yeah, that's the way isn't it?
For anyone who's listening to us at the moment, who's living with MS who smokes and they maybe thinking about stopping or they've got a bit of an inclination that they might like to stop at some point, would you have any words at all?
Caroline
I would just say, if it's something that you think you want to do then go for it. If you think you need help, then talk to your GP or your practice nurse or even your MS nurse and get those sort of signposts is help out there. A friend of mine used to work in smoking cessation So there's excellent clinics out there, there's excellent things, but you've got to be in the right place in your head to do it and just you will find what works for you. Yeah, go for it.
Nick
That's brilliant. Thank you so much Caroline and thank you for talking to us today. I know it's not an easy thing to actually talk about, your experience with MS, your diagnosis, smoking health so that was amazing. Thank you so much.
Caroline
You're welcome. Thank you very much.
Nick
Hi, everyone. Thanks so much for listening to our interviews today.
Helena
I think it was interesting because both of them were sort of saying that there's not like an incident kind of thing that happens when you smoke. Sometimes you think like, I will notice different straight away but you know, it was interesting that you both of them, were sort of saying yes, you might notice some difference to your breathing buy actually, there might not be a huge, big difference. The one thing that I was amazed was when Richard said that stopping smoking is on the same level of starting to take a DMT. That is massive, isn't it?
Nick
Yeah. So really, really powerful statement is there Helena is people living with MS, etc, use DMTs, they're making that choice for their health, aren't they? For the future, to kind of give themselves a good chance of staying as healthy as possible for as long as possible. Actually, to hear the if you make a lifestyle change, it can have a really big impact as well. So wow, I mean, that's, that's really, really powerful.
Helena
It was interesting to hear him talk about other sort of things when we talked about not just smoking but actually, that it might be the sort of smoking, the act of smoking rather than what you are actually smoking. That's the sort of courses which obviously means that there needs to be more research into things like vaping and other things that people are smoking just to sort of see what that effect is. So watch this space, because I think we will definitely dive into this topic of vaping at some point when there is more research because we get so many questions about it.
Nick
Yeah something that I would want to know more about as well because, I think, this such a hot topic, isn't it vaping and we have people who have stopped smoking, but now use the vape, or you now have people who've never smoked before and just go straight to vaping. It says definitely seems to be more of a generational thing as well. So I think, I'd be really interested to see further research into that and to see what the impact is for people living with MS and also in the wider population as well.
Helena
Yeah, and I think it was also really positive to hear about what he was saying about that it's not if you find it really, really hard, the idea to stop smoking that, actually, just cutting down will make a big impact straight away. It's the amount and, because we did see someone asked that question, didn't we? They said well I'm actually smoking two a day. How bad is that? I guess the answer is that it's not as bad as 10 a day. So it's still not perfect but it's, definitely, an improvement. So I think it's such a difficult topic and having, like I mentioned, lived with two smokers, one my mum, she never stopped smoking that was such a big part of her life, my dad actually did manage to stop smoking, he had a heart attack when he was really young at 48 years and he was more or less strong armed by the health professionals to stop smoking because of the heart issues but it was it was difficult for him. I think he used the patches because this was back in the 90s so that was pretty much the options that you got. It was difficult, especially when you have another smoker in the house to stop smoking. I think, you she was quite annoyed that he was stopping smoking because it was their social thing. They sat and had a cigarette and discussed the problems of the world And it is such a big social thing. So it's difficult.
Nick
Yeah, for sure, we see that a lot of time and, as you said, is that people are saying this is five minutes to myself this is, you know, all social time or time to pop outside with my friends at work.
So yeah, for sure. I think the main thing is that, I think, they're the information is out there and I think people listening to this can go away hopefully and think that there's a place that they can get to whether that's cutting down, whether that's knowing now that they have the information and that they don't want to make that lifestyle change at the moment, or whether or not they want to try and do something like getting involved in Stoptober or giving up altogether. It's really interesting to hear from Caroline how just went completely cold turkey cut them all out.
Sounds sounds a bit like your father had that similar situation.
People take lots of different approaches to quitting. As you mentioned, like using nicotine products, using vapes, going cold turkey, so hopefully, as a result of us talking today, people might be able to be inspired to go away and think about what's next for them.
Helena
I think also to say what we're talking about me and Richard that if you're not wanting to stop smoking, I think you could really be helpful for their research if you did get yourself signed up with the MS register and fill in those questions because then they can continue on doing the research whether it's to see whether what the long term effects is because we're not here to tell you what to do, it's your life. You have you make the choices and the things but, I think, anyone should sign up for the MS register is a great thing. It will really help for all kinds of MS research in the future.
Nick
Yeah, definitely it could really impact people in 10, 20 years as well as people right now, who can get involved with that research and make a positive impact to the MS community which is no small feat is it Helena?
Helena
No.
Nick
Absolutely, just going back to Stoptober, we have mentioned that a few times, it's an NHS campaign. So in the show notes or the YouTube links, if you're watching us, we'll add some links to their website. So on there, there's lots of tools, resources, apps that can help you if you are in a position where you want to either cut down or stop smoking, do check that out, it's really, really helpful.
Helena
It's a really good website, I did have a little look just before we started recording, just to make sure that everything was still there and it was all good. It looks good. So I would recommend to go and have a look at that if that's where you're at in the journey. I think also, we have to mention, as we are a charity, and if you are in that frame of mind that you feel like yes, I'd like to give up smoking but maybe you need some way to keep yourself accountable, we know that our Fundraising team would probably love it, if you would set up a Fundraising challenge for yourself, you can maybe write daily updates on how it's going. That could be giving up completely or cutting down or whatever. I mean, it doesn't have to be smoking, you could do any kind of challenges but this approach might work for some I did try to give up caffeine a few years back. We've spoken about coffee before on the podcast, I think we're both quite heavy coffee drinkers. A few years back, I do try to give up And I did do it as a Fundraising challenge. I did manage to keep off it for I think about six months, then I fell back into it. I did feel very guilty about it because I made this a Fundraising challenge that I was giving up but hay ho. If you want to do that, there's some links to that as well in the show notes and in the YouTube comments, if you want to have a go with that, of course.
Nick
If you have any questions about what we've talked about today, or any of our interviews, whether they are about smoking, or other aspects of life of MS, you can always get in contact with us.
We have a helpline that's available by phone, that's from Mondays to Fridays, from 9am to 5pm. Apart from UK bank holidays. So you can give them a call that's 08000323839. Of course, you can still call outside of those hours and leave us a message and we will get back to you afterwards.
If you'd rather not talk to someone on the phone if you'd rather ask your question via email, that's also fine as well. You can get in contact with our helpline team that's ask@mstrust.org.uk.
Helena
If you like talking to people on social media, we're are out there as well. As Caroline mentioned our Facebook group, we'll pop a link to that too, you can join that and you can talk to the MS community and the MS trust about various things. The helpline people are in there as well to try to pick up any questions but we also have a Facebook page and we're on YouTube X and Instagram. We are also on threads and on Tik Tok. and you can find this podcast on most places that you would find podcasts like Spotify, Google, Apple podcast and Amazon music. We'd love it if you would leave us a review of this podcast and let us know what you thought about it. I guess we'll see you for the next one. Bye
Nick
See you later. Bye bye
