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The MS Trust podcast
Bonus Episode: Real stories on how to come to terms with a Progressive MS Diagnosis
01:04:51
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- [00:00]
A
Hello and welcome to Breaking It Down, a podcast from the Ms. Trust. I'm Nick and we're joined by our host, Helena. Hi, Helena.
- [00:08]
B
Hi, Nick. We're only popping on here very briefly today because we wanted to share the two personal stories that we had in the previous podcast that we did about how to deal with the progressive Ms. Diagnose. And Yvonne and Adam and Sharon, who were on our interviews, were so great and we only managed to use a little snippets of each of their interviews, so we really wanted to share them in their entirety. So this is Yvonne, who's talking about living life with primary progressive ms, and also Adam and Sharon, who started an Instagram account called Me, you and multiple Sclerosis to sort of deal with Adam's diagnosis and then later on his secondary progressive Emma's diagnosis. Both interviews I thought were great, really interesting, really insightful of life with Ms. We really wanted to be able to share them with the listeners as well, so I think we should just have a listen to them in their entirety. So here's first Yvonne and then later on Adam and Char.
- [01:22]
A
Hello there and welcome back. We're joined by Yvonne. Hi, Yvonne, how are you?
- [01:27]
C
Good morning. Not too bad, Got a bit of a cold. Apart from that, I'm pretty good, thanks.
- [01:31]
A
Oh, gosh, yeah, we're both full of cold at the moment, so we'll have to see how the recording goes. So could you tell us about who you are and your Ms. Journey?
- [01:42]
C
So, yes, my name is Yvonne, I'm married and I live in. In Shropshire. Retired now, diagnosed with multiple sclerosis, primary progressive version of in 2013. So what's that, 15 years ago now? In fact, it will be on the 31st of May. That date is emblazoned in my memory and I live a kind of happy life. I keep myself pretty active with some volunteering work which I do for the Ms. Trust and also I volunteer at a group helping older adults get online, so helping them learn how to use technology and particularly in accessing healthcare information, advice, you know, booking appointments. So so many people just haven't had the opportunity to make that technological transition that society seems to require us to. And what else? I do a bit of work for Nice, working on clinical guidelines, knowing that I had a career in health and social care and I've got quite a lot of knowledge that I felt it was important to keep. Keep using my brain and keep using it for benefit where I. Where I was able to. So my, my Ms. Journey was one of a lot of frustration around the early stages. I was probably 5 years plus with Ms. Before it was diagnosed. In fact, maybe as much as nine years. Symptoms in my feet that I tried to ignore, loss of sensation and loss of proprioception. So the awareness of where my feet were all began to feel very muddled. And I did go to my GP a couple of times and got referred to sort of physios and orthotists and had insoles and advice. Nobody could really identify what the problem was and certainly couldn't fix it. In fact, I went to see an orthopedic surgeon because they thought it was a neuroma of some sort in my foot that they were going to surgically remove. Fortunately, I didn't go down that route because that's not what it was. And then I had some bladder and bowel symptoms that resulted in all sorts of unpleasant and, yeah, invasive investigations to try and figure out what was going on with my bowel. There was all sorts of thoughts that it was a functional or a physiological problem of some sort. So I was seeing a colorectal surgeon, started to see urologists with regards to the bladder problem.
- [04:43]
D
And.
- [04:45]
C
And then I don't know what. What happened that made me make my surgeon aware that I'd got these sensation losses in my legs for him to then think, maybe what's going on in your bladder and your bowel is neurological rather than physiological. And that resulted in a referral to a neurologist and getting MRI scans and eventually a lumbar puncture to make the formal diagnosis of Ms. And when that came, it was a bit of a body blow. I'm an occupational therapist by professional background, although I haven't worked clinically for a number of years, had moved into management and leadership. But in my time working for social services particularly, I'd worked with people with ms, all of whom had got very serious consequences as a result of their disease. And so for me, that's what Ms. Meant. I didn't have a broader understanding of the range of diagnoses. I'd never actually even heard of primary progressive Ms. And. And so it all came as a kind of a mixed shock and an unexpected piece of information that probably I did know in the back of my mind that it had to be something like that. The biggest shock came, though, when I was told there was no treatment for it, that I. What I knew of ms, people would say, well, you know, there's good treatments now, it's not something that needs to go unchecked. But as my neurologist told me, for primary Progressive Ms. At that time, certainly I know that since oculizumab has come on the scene and that does suit some people with PPMS and act as a good treatment, but for me it wasn't available then. And so when I went with my husband to hear about how we were going to manage this thing, that was the answer. There's. There's nothing. And, and that was more of a shock than the diagnosis, I think. I got the diagnosis and then was expecting somebody to say, and, and we'll start you on treatment sort of next week or the week after or something and we'll get this thing under control. And, and so that was really quite difficult. What happened quite early on for me was a referral to the Ms. Nurse Services and I was, I think, lucky in that I was being seen in a big tertiary hospital where I actually worked. And so I was able to navigate myself around the services perhaps more easily than other people might be able to. And I got to see a functional bowel nurse quite quickly on and then referred to an Ms. Nurse who took me under her wing. And from then until now I have good support from the Ms. Nurse Services and I have an annual review with, with one of those who's. Because I moved, we changed service but they picked me up pretty quickly after the move and I see the same person now got continuity and input. That really helps me to know that I've got somebody to go to if I've got some new challenges and somebody who really understands the breadth and depth of the disease and how it can affect different people in different ways and know what, how symptom management can be the, probably the best, the best option. So, yeah, I mean, I was told several times that PPMS was probably the worst type of Ms. To have, but I don't think that's true. I think, you know, you have your own Ms. And regardless of the label that's applied to it, you and it will go on a journey together that will be unique to you. Yeah, yeah.
- [09:17]
A
So you were first diagnosed with, with primary progressive Ms. That was your first diagnosis?
- [09:22]
E
Yeah, yeah.
- [09:23]
A
And just going back to that, Yvonne, how did you feel emotionally at that time?
- [09:30]
C
I was pretty self shocked and I kind of thought my life was coming to an end. You know, everything that I'd planned for, hoped for, dreamed of, not just me, but my husband, you know, our life just seemed to the bottom fell out of it, I think. And I'm fairly certain looking back that there was a period of at least six months where I was probably clinically depressed, I, I sort of disengaged with everything. And although I was getting good support at my place of work, which you'd hope, you know, NHS trust, you'd hope it would be able to support people with these kinds of challenges. And so despite that positive support, I just, yeah, there's a lot of crying, there's a lot of, why me? I don't deserve this. This is, you know, what have I done to make this happen? Lots of self recrimination. Although I knew there was nothing, you know, cognitively, I knew that, that it was my lot that had somehow come home to roost. You can't help but think, I think, going through those initial weeks and months, that if you'd have done something differently, that, that life would have been different. So I pretty much kept things to myself and my husband for the initial period, but then, then I decided to get angry at it. And I think this is probably a normal grief reaction. You know, your loss of your health and your future is, is shocking and you go through those stages of, of losing something and what you've lost is your. Is your health and the potential for you to be a person that you know now that you're never going to be able to be, or you think that you kind of go to the darkest place and you. I certainly did presume the worst kind of outcomes. I was deteriorating quite rapidly around that time and I foresaw myself in a wheelchair within a year and having to give up work and everything was very, very negative in my head for the first, first period that I was very much introspectively dwelling on how awful it all was. So, so then I, I think I just positively decided, I said, to get angry and just share. Rather than keep it all to myself, I was just going to share it with everybody. And so I, I made appointments, as it were, to go and see people so other members of my family.
- [12:36]
D
And.
- [12:39]
C
I don't think I'd even told my parents early on because I knew that they would be absolutely devastated. In fact, my father had. Had already died. And I remember recalling, thank goodness that he wasn't around to learn this piece of news because he particularly very close to my father, he particularly would have. Would have found it very difficult to deal with. My mom was very stoical. She just is, you know, you just get what's dealt you and you crack on, deal with it kind of thing. So, so yes, I made appointments to make sure that I got people's attention when I was speaking to them and sharing the news. I Didn't want it to just be a dismissive throwaway part of the conversation.
- [13:27]
A
Yeah.
- [13:27]
C
And, and then I, I decided to do the skydive for the Ms. Trust and put my, my devastation to positive purpose. And, and, and then I wrote individually an email to everybody in the trust that I worked in. So I think there was about 9,000 just, just shared.
- [13:56]
E
Yeah.
- [13:56]
C
Big and loud. This is, this has happened to me but kind of, I'm not going to let it beat me was my, my new take on things. I didn't know how I was going to do that but at that early stage. But I guess that was the first year or so of, of getting very self absorbed and low and then trying to come out the other side feeling a bit more in control. I think that's what it was wanting to feel in control of, of it rather than it being in control of me as far as I could, you know.
- [14:35]
E
Yeah, yeah.
- [14:37]
A
I think a lot of people listening to this, Yvonne will probably share that same experience that you were talking about, you know, going through a grief and actually, and, and having those sorts of like what did, what did I do to deserve this? And you know, must have been something that you've done and, and taking that all in. So.
- [14:56]
E
Yeah.
- [14:56]
A
And when you were sharing and, and you know, doing the skydive and everything, would you say, was that how you were sort of coping with the diagnosis?
- [15:05]
C
Yes, I think it was, yeah. Kind of get myself out of me and. Because there was no other way to manage it, you know, it, it was what it was and I needed to do something, do something to, to try and change that. So there was no treatment, so what was I going to do? So I went into survival mode and try and find out everything I could about the, the disease. That's when I first turned I think really properly to the Ms. Trust for the information that I found really useful there about all the sort of symptoms that I was experiencing psychological as well as the physical ones because my, my neurologist, pretty blunt guy, brilliant in that he didn't spin me any yarns about how we were going to get on top of this and because I did speak to other neurologists who said they at least would have tried some kind of steroid treatment. But I thought well you know, what's the point of just trying to ameliorate this if actually I'd be just trying to find hope where there shouldn't be any? Because as my, my own neurologist explained all that would be being done would be dampening some of the symptoms. And at that time some of those treatments were causing more problems than they were creating solutions. So if that wasn't going to be a survival route for me, I think I just tried to get on the front foot and do what I could to keep in control of things. So it was then really that I started to really focus on keeping fit, keeping. I was already a kind of healthy eater, healthy, healthy lifestyle, lifestyle doer ish. You know, I worked really long hours, didn't prioritize me over other things. So I just shifted the dial on that somewhat and, and started to yeah, keep, get an exercise regimen that meant I could keep myself fit and strong. Fortunately for me, my motor nerves have not been significantly damaged. So you know, even now I, I walk. Well, no I don't. I, I walk and part of that I put down to having kept really strong, good muscle fitness, muscle strength and to, to kind of use that to control some of the other, the other symptoms.
- [18:05]
A
Yeah, yeah, no. Thank you so much for sharing. Have you got any tips, Yvonne, for anyone listening to this who's worried about their Ms. Progressing?
- [18:18]
C
But I suppose that's, that's one of them. You know, be, be as fit and healthy as you can be because.
- [18:27]
D
The.
- [18:27]
C
Ms. Is damaging parts of your body, but there are parts that it's not reaching or hasn't been able to reach yet. So to, to keep functioning the parts of your body that, that can, is really important and we know that, that the body has a, a tremendous capacity to sort of self heal and find different ways of getting messages from the brain to bits of our body. So the more active we can be, even within the limits of, of whatever damage the, the Ms. Has already done, I think that that not only gives you a sense of control but also does physically give you some control over what your body's able to, to do and continue to do so Keep fit and healthy, I would say is, is probably top of my list. Live your life is, is another one. You know, don't, don't let the Ms. Become your sole focus. When I was initially diagnosed, I think Ms. Was front and foremost in my mind. Whenever I was speaking to anybody, doing anything, Mississippi was here. You know, it was all I could see really. And, and for a while it was all I could talk about as well. You know, I would have conversations with people, I would make sure that somehow I managed to get it into the conversation that, that they probably didn't know. But you know, I'm struggling with this, this thing that you can't really See, but it's here and it's with me all the time. But as time went on and I focused on other things, then gradually it's still always with me, but it's, it's back here now and I can choose to let it in or, or not, depending on what the circumstances are. So I guess just hang on to that knowledge that any kind of grief or loss becomes less, more manageable and less of a focus as, as time goes on. So that makes it easier to say, live, kind of live your best life. Live, live your life. Don't kind of leave things till tomorrow. It's a good mantra for anybody. Nobody knows what's around their next corner, but to have a diagnosis of Ms. Just brings that very centrally. So I got on and just did the traveling that I wanted to do, did the things that I wanted to do, knowing that I may not have the physical capacity in the future or knowing that was a potential to not have the physical capacity in the future. But as it is, I've been very fortunate that my deterioration has really slowed down over, over those intervening years and so I haven't lost the function that I dreaded that I would. But there are still things that I know now I can't do and I'm so glad that I just got on and did them when I was, was able to. So get on, get on, Live, kind of live your best life. I know that sounds a bit kind of cliched, but, but that's what it is, is do, do what you want to do insofar as you're able to, as soon as you're able to do it. And the last thing I think I want to, to say is, is don't assume everything that's going on with your body is anything to do with Ms. We get a, a tendency to just. I've certainly did to put everything down to Ms. And I found with a lot of my bowel symptoms that, that actually, strangely I've got colitis as well. And if I'd have just assumed that to have all been my Ms. And not gone and got it investigated, I wouldn't be able to manage it in the way that I do. So Mississippi brings all sorts of new and, and challenging symptoms, but they actually, they may not all be Ms. So make sure that you seek out help from gp, neurologist, Ms. Nurse, make sure you've got that team of people wrapped around you. It's something you can expect to have and each healthcare provider set up should be able to do that. So if you haven't got those people sort of touchstones. It's really important to make sure that you find out how to get them.
- [23:17]
A
Thank you so much for now, so much. So many tips, so, so many different things to think about as well. So we really appreciate that and thank you so much for sharing your story with us today. And as well, a big shout out to you for all of the volunteering and all of the support that you give to the Ms. Trust. We really, really do appreciate. Appreciate it.
- [23:36]
C
Thanks. Really welcome.
- [23:39]
B
So I am here today with Adam and Sharon, who are, we know at the MF Trust from an Instagram account that's called me, you and multiples process. Thank you both for coming on. Before we start, could I just ask you a little bit both who you are and maybe you can tell us a bit of your Ms. Journey so far.
- [24:02]
D
Okay.
- [24:02]
E
My name is Adam. I'm 46, soon to be 47. And everything was going swimming. I was a graphic designer. Everything was going swimmingly in life. It was the whole sort of the western ideal of life, if you know what I mean. The house, the kids, the wife and all that kind of stuff. And then one day I woke up and my life had changed forever. I couldn't stand up. I couldn't do anything. And ever since then, my life has just been about ms, or it's not been about Ms. It's been about how to live with Ms. And it's taken me a long time to get there, but I think I'm there. I think I got there and I couldn't do it without this woman, seriously.
- [24:55]
B
And Sharon, who are you?
- [24:57]
D
I'll jump in and say I'm. Who are you?
- [25:01]
E
That's my wife, by the way.
- [25:03]
D
But, yeah, I'm Sharon. I'm Adam's wife. At the time of diagnosis. Yeah, we were in a very normal family. We were both at work. Miss Came along and just changed all of that. Yeah. And, yeah, it's been. It's been. It's been a journey.
- [25:20]
E
Yeah, it came along. It came along and shattered everything.
- [25:23]
D
Yeah.
- [25:26]
B
When. When was this. When was it that you first started having symptoms or when you couldn't stand up?
- [25:35]
E
I can't remember. This is terrible because everybody always seems to remember their date, but I feel terrible because I can't. It's about 2000, 11, 12 maybe.
- [25:50]
D
Okay.
- [25:52]
E
Possibly 2013. I can't really remember. It's a bit very vague. I'm sorry.
- [25:57]
B
That's all right. When you went to the doctor, was it a fairly sort of straightforward diagnosis or did you have to wait.
- [26:05]
E
No, I had to wait about two, two and a half years for a diagnosis. And I was. I was made to feel like a hypochondriac. I made to feel like it was all in my head. There was nothing wrong. I would go back to the doctor. There would always be a different symptom, that I would go to the doctor with the worst one. When I could hardly walk in. And Sharon was saying, right, they must. Yeah, they'll see, you know, they'll see something now. And that was the time when I was told you might just be heavily constipated. Okay. And others. So we kept going to hospital, a local hospital, and everything was just the same. Just everything was repeating. It's all in your head, all that kind of stuff. There's nothing here. We'll keep you in for the night, but we'll monitor you. And then we went to another. I was going to say hotel. We went to another hospital. And the minute I walked in there, the guy looked at me and said, I think you've got Ms. And from that moment on, it just changed. It just. It was. And when. When the. The doctor. The neurologist actually said, I think you've got ms, I actually went, oh, yes. And he went, you know what Ms. Is, don't you? And I went, yeah, but it's not cancer or motor neuron disease. That's what I was really fearful of. So from the moment we knew what we were dealing with or what we could possibly be dealing with, because I wasn't obviously diagnosed then, life has just got better and better and better. See, when you know what. When you know what you're dealing with. Yeah, it's easy. I don't. I don't. I don't mean it's easy. I just mean it's easy to get on with.
- [28:03]
D
Yeah.
- [28:04]
E
What you're doing, because, you know.
- [28:05]
D
Yeah.
- [28:06]
B
And it's a big difference when actually the health professional acknowledges that there is something wrong. And this is not just in your head.
- [28:14]
D
If I can just jump in. So the year was a lot of the detail, sometimes is there where Adam forgets the updates and things like that. So it was about 2011, and the very, very first thing was Paris. We went to Paris on a trip, and Adam couldn't go up the stairs to the. The top of the avatar, which at the time, it's a bit like, gosh, are you that unfit?
- [28:38]
E
Yeah, obviously, five or ten steps. And then it was really like, I can't do this.
- [28:43]
D
That was a very starting point. And Then, like you said, we came back and he just continued to be unwell for. It wasn't quite as long as two and a half years, but it was about a year and a half. He continued to be quite unwell. And just like I called it man flu, really, because it just seems like he was. He was in bed and he was tired and all. Man flu, really. And so that went on for. For a long, long time. And. And the. The part about going to the doctor and the hospital, that was almost a weekend week out for. For all of that 18 months. And like Adam said, it was just a change in hospital one night where the doctor said, I think you've got Ms. And that's a sort of very short version of.
- [29:29]
E
Yeah. And I think, to be honest, if the rules were reversed, I would probably. I've said the same thing to you like this. Come on, come on, pull yourself together. This is. No one's found anything. There's nothing wrong with you. Come on.
- [29:43]
D
Yeah. I mean, certainly when Adam is finally diagnosed, because I. In that period of time, it's such a long period of time in a family for, for the. For the. The dad to be unwell and in bed and not working. So it was getting. Every month, every month, every month we were like, you, come on, you have to. You're going to have to just pull yourself together and try and sort of push through.
- [30:08]
E
Push through. Yeah.
- [30:09]
D
And then I ended up. That's what I was saying to him after about a year, because I was thinking, well, you know, these doctors have seen you, so someone. If there was anything wrong, they would have found it by now. So you got to just get on with it. And when he was actually diagnosed and they said, they said, do you mind if we bring in some students, you know, to discuss some things with you? They hadn't said at this point he had any mess. So they literally filled the room with all these nurses and doctors and they.
- [30:40]
E
Said to Adam, first of all, before you say this, right, I'm not proud of this story at all. I mean, I was at the beginning.
- [30:47]
D
But it's a funny story.
- [30:49]
E
I'm sort of embarrassed by it now.
- [30:51]
D
But when you go, no, because it's real life and it's. Yeah, it's really important because I had been saying, you know, you've got to keep pushing through. You've got to push through. There's nothing. Clearly, there's nothing wrong. We've got to just keep going. So cut to the day where they're giving him his diagnosis and they fill the room with all the students because we're like, yeah, just bring everyone in and said, you've got Ms. And he said, oh my God, thank God. She's been telling me, I've just got to keep pushing through it for the last and just keep going and keep going. And I was like, oh my.
- [31:17]
E
Everyone was like.
- [31:19]
D
And obviously for ms, that's the worst thing you can do was to just keep pushing through. And so the grounds could have opened up and swallowed me, you know, and I was just. And they all looked at me as if I was like this terrible, horrible wife.
- [31:31]
E
Yeah, I could have walked out that hospital when a single man. I think it would have been justified.
- [31:37]
D
It just was funny though, to thought, oh my God, like, no, no. And I was like, oh, I didn't know, I didn't know, I didn't know. But yeah, that was very naive, obviously, way back then. And yeah, knowing, knowing now that that's like the absolute worst thing to do.
- [31:53]
E
I've always said this, Bill, and I. I don't know if there's many other people that think this, but when I was diagnosed, my first thought was, I want to go into my old work and tell them I've got Ms. I'm not lazy, I'm not, I'm not that I was ill.
- [32:13]
B
I, I totally understand that part with them because you. I think when I was being in the process of being diagnosed, I had been feeling fatigued for quite a long time and I remember going to the doctor and having some blood tests done and they were like, congratulations, you're really healthy. And you're just like, but why am I this tired? Why am I just dragging on tiredness all the time? So, so yes, I fully understand that. You almost want like a certificate and go look.
- [32:42]
E
Yeah, this is why I wasn't lying.
- [32:46]
D
It's a really test in time though, for, I mean, for us that was a really, really testing time because Adam was still unwell. I mean, he physically couldn't stand up. And every time I would take him to a hospital or a doctor or I would think that this time, this time they're definitely going to see stand up and they would maybe keep him in a hospital for the weekend and then sort of send him home again in the might, I'll go get him and bring him home in a Monday and nothing would have changed. So for us in our relationships, we're really testing time because you obviously want to believe that your partner's unwell, but when you're hitting the 18 month stage and nothing's been, you know and they've done somewhat tests. Maybe not all of the tests but just started to look at some things. Yeah. You're then sort of right. You know it puts a lot of pressure on your relationship.
- [33:40]
E
If we never went to the other hospital we'd still be going. I think things would have worked out differently. I don't think we'd be together. I think the Ms. May have taken a few more years to diagnose. I was just left in limbo, a massive strain.
- [33:58]
D
But we're there now. We're there now.
- [34:00]
C
That's.
- [34:00]
B
That's the important part, isn't it? So when you got the diagnosis in the initially was. Did they call it relapsing, remitting Ms. Then or.
- [34:10]
E
I can't really remember exactly what this. I think they probably did but they would have told. This is where I'm a little bit hazy.
- [34:22]
D
The details of dates and things like that.
- [34:24]
E
Yeah, yeah. It's quite. You've been through it's quite an overwhelming.
- [34:28]
B
Yeah, of course.
- [34:30]
E
And my memory is. You know. You know. But obviously MSD memory is terrible.
- [34:36]
B
Yeah.
- [34:36]
E
So I can't remember what happened yesterday. Never mind what happened in the day I was diagnosed. The only, the only reason I know that the day I was diagnosed is because I said. She said I was just, you know.
- [34:49]
D
That'S what it was. You said it was. So there was one. Yeah. No, we shouldn't even tell that story. Well this I'll just quickly tell you because. Suspense. It was just one day in that whole 18 month period. We were walking across the footbridge and you know it was actually holding on to the railings going along the bridge and we. It's a strain of this had all like I said been going on for so long and we were having an argument at the time. I said you actually look pathetic. You've got to get us together. Because he was going along the bridge like you know and so. Yeah.
- [35:22]
E
And that's why I said in the room. She said it was pathetic. Which I totally like. That's what I'm saying. Like I wish I could take it back.
- [35:33]
D
Yeah.
- [35:33]
E
It was in a flame but I still said it.
- [35:35]
D
Yeah.
- [35:36]
E
Anyway, I wish I didn't.
- [35:39]
D
The doctor did say relaxing him in. Yes. You do remember that, don't you?
- [35:42]
E
Yes.
- [35:43]
B
And now you're sort of moving on a few more years. We said 2011. So where are we now? I forgot what year it was for a second there. 2025 it is now. And now they have said that you have moved to to secondary progressive ms, have they?
- [36:04]
E
Yeah, it was just, it was very, it was neurologist and it was looking at, I think the pre. The MRIs and stuff and it was, it was very nonchalant. It was very like, yeah, yeah, yeah, secondary progressive now.
- [36:17]
D
Okay.
- [36:18]
E
And it was just sort of like skimmed over.
- [36:24]
B
Yeah.
- [36:25]
E
It wasn't even all like, okay, that's the secondary progressive. This is what's going to happen. It was just your secondary progressive. You're not going to have any up and down. You're just pretty much going to go down. And that was, that was really it.
- [36:38]
B
Oh, wow. And how did that feel when. When that one day he said that.
- [36:45]
E
It felt as if I'm going to go downhill tomorrow.
- [36:52]
A
I.
- [36:52]
E
It wasn't like, listen, this could take years. This could. It was just, it was very. I felt like it was sort of motor neuron disease. Like, well, you've got this now, so there's only one way. You've got two years left. That's it. Yeah, there was, there was nothing again. It was, it was like being thrown into the ocean without a life raft and saying, right, we'll swim now.
- [37:18]
B
Yeah, that must have been very scary.
- [37:21]
E
Yeah, a little bit. Yeah.
- [37:26]
D
As well, was I didn't go to that appointment that day. I think that's the only appointment I've ever not went to and I can't remember that. Yeah, I remember it was in January and I was out in the month of January and I was, I was working so I didn't go. And like I said, it's the only one that I didn't go to. But. So we weren't really expecting it either. Yeah, we were just unprepared. And then when, when Adam came home and said it was a bit late.
- [37:55]
E
Oh, right, where do we go from here? What happens now?
- [37:59]
D
Certainly I was not expecting that for at least another good 10 years.
- [38:03]
E
You know, to be honest, I was never expecting it. I mean, I was expecting it, but I never thought, yeah, it won't happen to me.
- [38:13]
B
Yeah. You know, and, and were you on any, any disease modifying treatment at the time?
- [38:21]
D
You were DMT, so you were 18 months. And then plagra day for another 18 months.
- [38:30]
E
Well, that was hell. That was, that was hell. That plaguity.
- [38:35]
D
Yeah, that didn't work.
- [38:36]
E
Yeah, that was the. @ inject.
- [38:40]
D
Yeah, inject.
- [38:41]
E
Like a bee pain thing.
- [38:43]
B
Yeah.
- [38:44]
E
And it was, it was okay to actually do that, but it was like the. However long later on it would, it would sort of like kick in and I'd feel like I turned. It was turning stone. It was. It was hard. It was a horrible feeling.
- [39:00]
D
Then moved on to Fingolimart, which is still on today.
- [39:04]
B
Yeah.
- [39:05]
D
So I think it was probably around about maybe about a year and a half into Fingolimore, things had started to settle and that was when the secondary progressive diagnosis came. But I think looking back from my perspective, looking back in the run up to the doctor saying that we had. We'd sort of stopped the erratic pattern of relapsing. So Adam's relapse momentum was highly active, wasn't it?
- [39:37]
E
Yeah.
- [39:39]
D
So life was a bit all over the place anyway, with that.
- [39:41]
E
Yeah.
- [39:42]
D
And. But in the run up to getting the secondary progressive, things had started to plateau out a little bit and it was more of a straight line.
- [39:50]
C
Yeah.
- [39:51]
D
So it's actually not a surprise now you're looking back. We talked about. I think. I think what I'm trying to say is by the time Secondary Progressive team, we were already living it as a couple, as a family. Adam was already there. We'd already had some months practice, I feel like. Or.
- [40:10]
B
Yeah.
- [40:11]
D
So. And you maybe won't agree with us, but for me as a wife, I found secondary progressive easier to manage because it's just more of a straight line rather than. It's really hard to live life when, you know, once you're up next to your dying one.
- [40:35]
E
I was up. Sorry.
- [40:36]
D
No, I was just going to say you can't. You can't have a lot of continuity with things and you're even more all over the place. So secondary breasts actually gave us stability to then start tweaking. All right. Okay. This works. This doesn't. This work. That sort of thing.
- [40:50]
E
Now, we've never actually spoke about that, about how secondary progressive made her feel. Made me feel. But she's just echoed exactly what I thought I was. Well, at least I'm stable.
- [41:03]
B
Yeah.
- [41:04]
E
At least there's no up and down.
- [41:05]
D
Yeah.
- [41:06]
E
In a way, secondary progressive was actually better than.
- [41:11]
D
Yeah.
- [41:11]
E
Relapsing the method because it's so unpredictable.
- [41:14]
B
Yeah.
- [41:15]
D
Yeah. I mean, that might not be the case for everyone.
- [41:17]
E
Yeah. But it was the case for me. Yeah.
- [41:19]
B
Yeah. I've heard other people say it. I've interviewed a lady who said exactly the same thing. She just felt like it was more. Yeah. She didn't like the ups and downs of. Of RRMs and just thought that it was just too unpredictable to live life.
- [41:33]
D
Like that and it's harder to start. And again, everybody's Ms. Is different and it's all about sort of finding what works for you or what your Ms. Likes or whatever. And it's much harder to do that when you're all over the place, you know, is it because then you're sort of. Was it because of this or that or tired or, you know, so secondary progressive definitely lets you sort of home in on symptoms and what you need or what works for you a bit better. Can I just say I'm always like super paranoid talking about Ms. Because I'm not the one that has it, but.
- [42:10]
E
No, but you've got the expert knowledge of looking at someone with it.
- [42:17]
D
Well, yeah, it's not an expert knowledge. It's just living alongside it and sort of. I would call that expert knowledge, seeing them, what works. But yeah, I'm always superpowering because I don't want anyone ever to feel patronized or, you know, we are completely aware.
- [42:32]
E
As well that everyone's Ms. Is completely different.
- [42:35]
D
Yeah. You know, so that's definitely one thing we see from. I mean, was big too. So many people from our Instagram, from all over the. From all over the world. Some people for Adam, some people for me just, you know, carers, people with ms, all stages of Ms. And yeah, that's the thing that everyone is just so different.
- [43:03]
E
What I've noticed. Sorry, what I noticed was the amount of people out there that are. That have got ms, that have just left themselves.
- [43:13]
D
Yeah.
- [43:13]
E
No hope, nothing. And I think I'm so grateful for everything that I've got to get me, help me, get me through this. The support of everyone in the family.
- [43:28]
D
I think just to jump in on that. That's a really key part, is to try and find what works for you, though. Yeah. And it takes time to do that. That doesn't just, you know, Adam wasn't diagnosed with Ms. And then the next year we just had of them together. It just doesn't work like that.
- [43:45]
E
Yeah.
- [43:45]
D
You have to go through the, you know, the process of having to do with your acceptance and your grieving and you're all the different, different. The different parts to it.
- [43:58]
E
The acceptance of Ms. Came out the blue for me because I never thought I would ever accept it. I was still clinging on to my healthy self and like, can I just go back to that guy?
- [44:10]
C
Yeah.
- [44:11]
E
And then one day it just. I don't even know how. I don't know how. I don't know what was thinking. Just one day it just went. And that was it. And from that moment, I've never looked back.
- [44:24]
D
Yeah.
- [44:26]
E
I've just whatever shifted in my mind. It's it shifted and it went away. And from that moment I've lived my life. Like, I don't have Ms. Now. I don't mean like I'm running around like I'm a healthy person. I mean as in, like, I know I've got MS, but I don't think about it. I know it's there, but it's not at the front of my mind, it's at the back.
- [44:47]
B
Yeah.
- [44:49]
E
So I can focus on other things.
- [44:51]
B
That's interesting. Do you think you started the Instagram account sort of to as a result of trying to learn to cope with, with Ms. For both of you, or was there another reason why you decided to document your journey as such?
- [45:07]
E
I think the main reason why we wanted to start it, well, I wanted to start it anyway was because everything was just all doom and gloom. Everything was all, your life's over, your this and that. I can't get out, too short, I can't walk. I've got this new mobility aid. I'm, you know, and I thought, well, that's not my life right now. I know it could be, but it's not right now. So why don't we show.
- [45:31]
D
Yeah, I think we were looking, we were looking for a little bit of support for us. How do families cope? You know, what does a normal day look like? Even though Adam had relapsed and remitted for some time, it was sent to progressive. Were going to bring some change. And when you're at that beginning, you don't know. I mean, it hasn't went like, you know, central progressive and then you're just going down this big hill. It's not like, well, it hasn't been like that for Adam. It's just been more of a steady pace. But at that point you think possibly, oh, gosh, we're just going to go off this cliff now. So, you know, we need to start organizing. And so we went to Instagram to have a look at how do people live day to day. Like, how do they, how do they function when they come up against any kind of problem, you know, any kind of. You're out and all of a sudden you've got no energy left, you know, but you're in the middle of a shopping centre or what happens when you can't get out of the car because you're just exhausted or we just wanted to see like, how do people function when they do it? And we couldn't find what we were looking for. I'm sure it's out there, but at the Time. We just couldn't find what we're looking for. So we thought, well, we'll just. We'll start a page and we'll just try and find it along the way.
- [46:45]
E
Yeah, it was more. For me, it was more like, what are the doctors and neurologists and the nurses and all were saying, well, that's all great, that's phenomenal. But you don't have the disease. I need to know from somebody who lives with it, how they cope. And it was more. I think that really just.
- [47:03]
D
Yeah, definitely.
- [47:04]
E
Now, I have no idea if she's already just said that enough. She's jumped in and said the same thing. So I'm.
- [47:08]
D
We have this audience.
- [47:10]
E
Yeah, sorry if I have.
- [47:12]
D
No. Sometimes a lot of the time, one of the things is memory for Adam has been. That's one of the things that's been a little bit affected and seem to be progressive over the course of these years. It's not terrible, but it's a lot of the time that, yeah, it forgets the sort of details. But yeah, it was definitely the practical side of things. And then, yeah, you just, you know, it's like anything you start connecting with. And then when we first started adding did more. I'm definitely more. I'm now with the one with the camera. And it's because it's just easier. It's easier to try and get what we're trying to say across. But, yeah, the Ms. Community is amazing.
- [48:00]
E
Yes, Fantastic.
- [48:01]
D
Absolutely amazing.
- [48:01]
E
Fantastic.
- [48:02]
D
1. You don't know somebody?
- [48:03]
B
Well, no, and that's the nice thing about it. Have you been contacted by a lot of people that sort of struggle with coming to terms with a. Like a diagnosis of progressive ms?
- [48:17]
E
I would say so, but it's kind of mixed really a bit that. That's. I would say it's sort of 50, 50. There's a lot of people who are, how do. How do. How do you get there? I'm like, well, I can't tell you how you get there. You just get there. You'll get there when you get there. Yeah, there's no path.
- [48:41]
D
A lot of people ask everything just about diagnosis or they're just diagnosed and they're quite scared still, or they've got children or they're just trying to navigate through it. And. Yeah, so lots and lots of questions and definitely lots of things about sexual progressive as well as well. And we hope that by showing each video that the questions of all of these topics are. Or somewhere in the videos or things that we post or so that people I think. I think this would be a fair statement to say that it's a real scary thing, obviously for Adam. I have no idea how that feels, but it's also a scary thing for a family and wives, partners, children, whatever. And that's one of the big things about our account as well, is to try and take that fear away.
- [49:36]
E
Yeah.
- [49:37]
D
Whether you know, it's Adam you're relating to or whether it's me that you're relating to. Try and take that fear away. That. Okay, this is going on. You don't have to answer everything today.
- [49:48]
E
You know, and there's still a life to be loved.
- [49:50]
D
Yeah.
- [49:51]
B
Yeah. What I love about your account is that we quite often talk like the Ms. Trust is here for people affected by ms, that is not just the people who live with Ms. Themselves, but, you know, like yourself, Sharon. And I feel like what I like about your account is that you can really see that, you know, it's quite often there will be an account that is just the person with Ms. Or just the carer, but I love the sort of the unity of both of you and I think it really shows through. So we're going to make sure we link to your account as well.
- [50:21]
D
It's predominantly for. It is for ms, it was to do Ms. Awareness. But yeah, you're right, it does cover. Covers a bit of. A bit of everything.
- [50:33]
B
Yeah.
- [50:33]
D
Yeah.
- [50:34]
B
Did you do anything sort of else when you first. Well, when you got the sort of second diagnosis, I guess we will say, with the SPMs, did you do anything else about it? Did you get any help, like any like talking therapies or any. Anything like that?
- [50:51]
E
Nope, nothing. You've got ms, you've got secondary. Biggest of Ms. Go away. It wasn't until we started doing our own thing or started looking into how other people cope this whole sort of. We realized there was a massive community out there of Ms. We were all thinking the same thing, who were just all being left to fend for ourselves, really.
- [51:18]
D
There's not much. I mean, there isn't. There's not really been much suggested or. Yeah, you're right. It's. It's almost kind of like just gone sort of on with it.
- [51:33]
E
You've got Ms. Now. Shut the door on your way out. Here's a pamphlet.
- [51:36]
D
Yeah, that sounds really harsh, but it does.
- [51:42]
E
Yeah. It obviously depends on what doctor you've got. Depends on their personality, how they deal with things.
- [51:48]
B
Yeah. Yes. It certainly seems like such a varied thing. I mean, some people seem to be offered all sorts of, you know, support afterwards and there's, you know, mental support or what have you. But then other people do really seem like yourself that is just sort of been left to it. And it's. It's difficult unless you're a very proactive person yourself that you want to go out and get this if.
- [52:11]
E
Yeah, yeah, yeah. Definitely was a time where I just wanted to lie in bed and bury my head in the sand. And if it wasn't Sharon, we probably wouldn't have. We would be here. We wouldn't.
- [52:25]
D
I think, I think when Adam was diagnosed, I remember it was. There was a couple of things, you know, and Adam's Ms. Nurse is fabulous. She's still the same nurse today that was at diagnosis, so she's amazing.
- [52:38]
E
Yeah.
- [52:38]
D
And I do remember there was, you know, sort of made an appointment for physio and about diet and have a wee look at this. Nothing. And I personally feel like Adam wasn't even ready to even delve into any of that yet. It was, it was still sort of what is even ms, you know, certainly not ready for any kind of physio appointment. And so there was little bits there, but not anything really. I don't know. It depends on what's helpful to each individual. Me personally or Adam. We would prefer to see people doing things or, you know, the physical side of things, like, do you manage? Or whatever.
- [53:22]
E
It was really like, well, what do you want to know? Because there's a pamphlet, so there's a leaflet for it. Yeah.
- [53:30]
D
And then when you're at the doctors as well, or neurologists or the, the nurse, you're very much on a timer as well, you know, you can't just go in with. Yeah. Although they do generally try and throw us back out because we're l. There forever. Chatting.
- [53:45]
E
Yeah. She talks.
- [53:48]
B
That's good. Sort of my last question, I guess here then is as you sort of more or less have to come to terms with it yourself. And you know, you. You've had your. You have the Instagram account and you've been thinking about things and, and have you got. Have you sort of learned anything that you. Or any tips that you'd like to share with other people who are worried about their Ms. Progressing.
- [54:10]
E
The one thing that I say to any. What I would say to anyone who's new or diagnosed, it's going to be okay. You're going to be fine. Get to know the illness, get to know what type of Ms. You have and everything. Once you get that, it's, it. It's just a different way of living life. You just have to find what way. You have to adjust and you can still live a great life. But don't be scared. It's not. I mean, it can be for some people, but please, just don't be scared.
- [54:48]
D
And the practical tips. If I just jump in with a practical, I would say plan for everything. I mean, I'm a planner. If you fail to plan, you plan to be able to. That's me. So plan for everything. Plan for your worst days. I mean, you might never have them and. But, you know, it's well to be organized for them. I mean, I think. I think probably within five minutes of Adam being diagnosed, you know, we had a wheelchair, we had this, we had that, you know, and it may be extreme, but plan for everything. Get your doctor in a row for everything. Plan. You know, life can change tomorrow with Ms. You know this, you know yourself. And Adam knows, obviously, like, it could change in the next hour.
- [55:32]
E
And also, sorry, sorry to jump in right at the beginning where you're getting, oh, you, here's your wheelchair, here's this, here's that. When I was getting these stuff delivered, getting the things to love to the house, I was like, I don't need a wheelchair. I don't need a walker. I can still. I might be a little bit stumbly, but I'm pretty okay. And I was thinking, you know, why are they delivering this just now? But it's future, you know, you don't.
- [56:04]
D
Know what they want to do. It's good to be organized. I mean, how we work together is. As Adam officer has ms, I have no idea how that feels. And somewhat I help to try and manage it. Almost like a business that sounds ridiculous, but you get to know what is good. And then I help support Adam to do these things just to keep him so that he can stay.
- [56:28]
E
Well, how we actually work. And I think it's amazing how we work. Like this is. She tells me what to do and I do it.
- [56:37]
B
Brilliant.
- [56:38]
E
That's pretty much it.
- [56:39]
D
But it's getting on a serious note. But be practical. Get your ducks in a row. I mean, even people that are at the beginning. I can't, can't be any more. Can't get my words out in here. Strongly recommend even way back at the beginning when you're relaxing and written and start thinking about what if, what if just in case. And I know sometimes we can have a difference of opinion on that, you know, because you can't live life with us. But. But when you have this therapist, you've got to prepare for that. I mean we're in an adapted house now that we were away back. You know, this didn't happen last year and then we just came here, you know, like this was in the planning for a long time. So I think what I'm trying to say is plan. Get your ducks in a row just in case. Start thinking about how you would do that, how you would do that and almost go through. Something just jumped into my head. That's why I've lost my train of thought. And it's a really funny story that I can't really tell you because it's.
- [57:44]
E
You're going to tell because you've said it. So you need to tell me. That's how it works. Once you say something, you've got to say it.
- [57:52]
D
No, sometimes that's the law, isn't it? We'll just talk about what has happened. Okay, you really want me to tell this story? Okay, I'll tell the story. Okay. So Adam said to me one day he was in the toilet and he shouted me in while he was in my toilet and said, you might as well just come in and help. It was a joke. It wasn't funny. But it was just a sort of. We broke the. I think what we're trying to say is we broke the barrier, like should that ever happen. We've already broke the barrier with.
- [58:26]
B
Yeah.
- [58:27]
D
A comedy chat about it. There was no. It was just a sort of. Do you want to come in and help me? Because one day you might be doing it. You know, I didn't. It's not.
- [58:35]
B
Yeah.
- [58:36]
D
You know what I'm trying to say?
- [58:37]
E
Yeah.
- [58:37]
B
Oh yeah, yeah, yeah.
- [58:41]
E
But yeah, she's talking about wiping.
- [58:46]
D
It would be funny to say, well, you know, you can have a practice.
- [58:48]
B
Run if you like, so prepare for the occasion. Yes.
- [58:54]
D
I've just been silly here when I'm talking about that. But the point is. But yeah, plan for all these things, talk about them, get rid of the stigma, how you're going to deal with them, what ifs, do all your what ifs. And yeah, just get your ducks in a row.
- [59:07]
E
The way we deal with all that sort of stuff because that kind of. If you need to be helped to clean up or anything that can be soul destroying to some people, it can be really embarrassing. But the way we deal with it as just with humor. Just laugh at it.
- [59:25]
D
Just trying to get through. But it is important to be organized and.
- [59:29]
E
Yeah.
- [59:29]
D
And that is whether it be mobility aids or thinking about mobility cars or housing or benefits or Caterers or any of that stuff. Like, definitely have all those conversations with all the people around you and have them now. Don't. Don't wait until, you know, oh, gosh, we should have maybe got a walker. Now Dad's really struggling or things get. You know, have the conversations now. That would be my. The practical one.
- [59:56]
E
Yeah, she is.
- [59:58]
B
That's a brilliant advice.
- [60:01]
E
Can I just tell a quick, funny story?
- [60:03]
B
Of course you can.
- [60:05]
E
There was one time.
- [60:08]
D
I'm dreading what's going to come out.
- [60:10]
E
You know what's coming out.
- [60:11]
D
It's not that story.
- [60:12]
E
Yes, that story. One time we were driving back from the shops and we were trying to go home and we were about 10 minutes away and I was really needing the toilet quite badly and I was shaking and I was driving the car. I was still able to drive at the time, so I was stuffed. And then Sharon was sort of starting like. Oh, she started sort of finding it funny that I was. I couldn't stop the car, you know.
- [60:37]
D
Because we're missing a key point here, Helena. It was a number two.
- [60:40]
E
Number two.
- [60:40]
D
And it was to narrate it as if it was like a Grand national horse. So we starting to. So he was doing that and driving. I was starting to.
- [60:50]
E
She was starting to laugh.
- [60:51]
D
To laugh.
- [60:51]
E
And we were going. And then all of a sudden there was silence and I just said, it's out.
- [60:58]
B
Oh, dear.
- [61:00]
E
And then she started laughing and I don't think we stopped laughing that whole night. It was so funny. I mean, I know what happened to me and people might not like it if it happens to them and stuff like that, but it was. It was hysterical.
- [61:15]
D
Funniest. Funniest.
- [61:16]
E
And still the whole Ms.
- [61:18]
D
Journey. Yeah, our whole Ms. Journey. And it will remain the funniest. And what made it funnier and as well was when we got home, your dad was visiting and we had a bit of a full house, so that made it even funnier.
- [61:29]
E
Yeah, I'm trying to walk in, so try waddling in the toilet.
- [61:35]
D
The worst moment of Adam and his Ms. Actually is.
- [61:38]
E
And everyone was there for it all. Everyone was there.
- [61:41]
B
Everyone can share in. I think the thing is, though, the more we share stories like this, the more it normalizes when people do have those things happen to them and they feel really mortified about it, but actually it happens to a lot of people and. And you've gotta. If you laugh about it, then. Then it just feels better.
- [62:00]
E
Yeah. I really believe laughter. Laughter is the best medicine. And there's a truth to that saying, because it really is if you can laugh and if humor is something you can get over anything.
- [62:12]
D
We laughed more with Adam having Ms. Than we did before. There's so many funny stories, you know, that we could tell that we won't.
- [62:21]
B
You have to write a book.
- [62:23]
D
You should, you should.
- [62:30]
B
Thank you so much for sharing your stories and I'm sure we'll hear more from you. Thank you. Thank you.
- [62:39]
E
Yeah, it's been good. I've played this also had a lot.
- [62:45]
A
Wow, they're really powerful, Helena.
- [62:47]
B
Yeah, I had such a great time speaking to Adam and Sharon. It was, I was laughing so much in the interview as well. I mean, they're, they're, they're such a double act. You really have to go and watch them on, on Instagram just to sort of see how great they are together and how really interesting their story is. And I, I loved your interview with Yvonne. She has done so much for the Ms. Trust, so it's really nice to hear her story.
- [63:13]
A
Yeah, huge thank you to everyone and to Adam and Sharon and yeah, make sure you do you give them a follow on Instagram or link that below in the, in the show notes as well. Now, if you do have any questions about anything that was discussed today or any other aspect of life with ms, we are here for you. You can call our helpline, which is available from Monday to Friday, apart from UK bank holidays and the times that the the helpline is open is 10am to 4pm Outside of those hours you can leave us a message and we'll get back to you as soon as we can. So the number for the helpline is 0800-03-23839. Or alternatively, if you'd rather email your question to the helpline, you can reach the team@askstrust.org.uk and you can also find.
- [64:07]
B
Us on social media such as Facebook, YouTube, X Tik Tok and Instagram. And you can find this podcast wherever you would be listening to your normal podcasts like Apple podcast, Spotify and YouTube Music and Amazon. Get in touch and you know, like they say, like and subscribe. We love it when you get in touch. So please, if you have a story to tell us, either let us know on social media, tag us in anything or you can give us an email at comms at mstrust.org uk and please do look out for our next episode coming out, which is also about progressive ms, but about treating progressive Ms. See you next time. Bye bye.
- [64:51]
E
Bye.