Jeff Alex (3:44)

Seriously no treatment.

David Peyman (3:46)

No treatment, no MRI, nothing. And I had the lumbar puncture etc. And then I basically sort of recovered and then I was sent back to the army but I was so bad cut commandant came to me one night and he said I'm going to cut your spine open tomorrow. And in a very vicious way I phoned a couple of friends. I wheeled myself, crawled to a ticky box old telephone and a couple of friends came, they picked me up, dragged me out in the middle of the night. Sounds all melodramatic but it's actually true. Got back to Johannesburg in those days and the bottom line is I was completely paralyzed. I was AWOL from the army but I didn't care whatever they do and I was completely paralyzed. I couldn't stand, I couldn't walk. Bladder gone, bowels just everything gone. And I then was sent back to stay with my parents and because there was nothing obviously there, there was nothing to be done or anything and I basically took. It was about a year and a half year and three quarter and six neurologists saw me and they all said I'll be dead within 45 years. All of them without knowing what they each said including one ex good friend of mine. So I booked my plot in the cemetery at a very young age and I thought well that's it. Game over. And aspirations, dreams like many people I'm sure the window gone. Then serious depression and fear turned into anger. And anger can be a creative Energy at times, if one combines it with what one has between the ears. And I then started to think, maybe something I can do for myself, maybe there's nothing to lose. And I was so young anyway, so many friends got me. I read over a hundred books, biochemistry, neurology, everything I could to understand what on earth it meant and how it worked in the body in those days. I thought, well, it's worth trying. And then an ex girlfriend of mine who happened to be living in London, read an article about Judy Graham, who wrote the original book Managing Multiple Sclerosis. And I wrote, read it and I thought, this biochemically seems to make sense. So Swank's research, his work, what she and others were doing with arms at the time in London. This is 42 years ago. I wrote off to biochemists in Tokyo who wrote back to me in Japanese I couldn't understand. And I wrote in Paris at the Sorbonne. I wrote to New York, Columbia, where I'd been, et cetera, et cetera, many places, people who had written the books on biochemistry and neurology, and they wrote back. I wrote to their publishers, and most of them wrote back, amazingly, maybe different times, but they did. And I wrote to Judy and she wrote back. And then I started to seriously research and understand the biochemistry behind it, and that maybe Ms. Was more vascular in origin and neurological in result. Because all the little tiny. Why were the little white plaques we later find through MRIs happening around the periventricular, the little ventricles in our brain? Why were so many of them close to the little ventricles? Why are they not in different parts, more so together with other things that Swank went into and others went into. And basically, after being given four to five years to live, that. That was it. Six top neurologists in Johannesburg, I started the Swank diet. And it's the only thing I'm evangelical about in life, besides a love for theater and the arts and literature and film. So I started it and reading everything I could to understand more the biochemistry behind. And nothing happened for a year and a half, but I didn't die. Secondly, I didn't get worse, although I was so bad I couldn't walk five steps to the toilet. I couldn't walk, stand, move, nothing. You know, my fingers had gone. I couldn't do a button up, I couldn't hold a cup of coffee, a knife and fork, the usual. And I noticed that it hadn't got worse, it hadn't improved, but it hadn't got worse. And I wasn't dead, as they all predicted I was going to become. Then it took another year, just over two, nearly two and a half years on the diet. And then. This is going to sound like a melodramatic cliche, but literally one day I was able to stand out of being bedridden and somehow clamber through holding on the walls to the toilet. I was able to hold my bladder for 30, 40 seconds, which, and this to me was like climbing Everest. And I started to almost imperceptibly gradually over the next year notice little, little bit by bit improvements in my body and what you're seeing today and all the work that you mentioned kindly, that I've done and have done since, I've never ever gone back to as bad as I was. I've had relapses on average every two to three years. I've only been on Carpaxone since it came out. And I religiously stuck to the Swank diet and I still do and the vitamins and all the rest of it that went with it. And here I am.

Jeff Alex (8:55)

So from Swank, how did you discover the Overcoming Ms.

David Peyman (8:59)

Program then from Swank and Judy Graham? I then through Judy as well discovered the OMS program and George Jelinek's book because I was trying to keep up to date with everything and I think his book is brilliant and the OMS people and program are amazing and brilliant. But seriously, because he combines all the evidence based approach, as you were saying earlier, Jeff, together with all the other, you know, the dietary, the vitamins, stress management. I did three things. One, Swank and understand the biochemistry behind it, which George Jelinek and OMS take up and develop much further. Number two, I put myself into psychotherapy for five years to understand stress management because I've met hundreds, hundreds of people, as I'm sure you have with Ms. All over the world. And when we are really honest, I have found, and I'm only talking about myself, stress can trigger, not cause obviously, but it can trigger a relapse. And we can try and help manage our condition if we can manage the stress. And it's honest with me, 60, 70% of my relapses and many hundreds of people, when they're really honest with me about it, one person's stress is another person's challenge. So the task for me was to find out, well, what triggers my stress, but it's not necessarily anybody else's stress trigger and identifying that quite specifically through counseling, which I did and developed a motto, take the path of least stress. Whenever I Can. So it was the diet with all the vitamins, it was stress management. And then the last thing, obviously, together with exercise as my body improved, swimming, which was my love as a little child, always swimming, surfing. And then the third thing later, much later, became the copaxone. And those are the three things. But what was important for me was to understand the biochemistry behind how stress might work in the body and how ms, how those little scars form in our brain.

Jeff Alex (11:03)

People with Ms. Know when they get stressed. I've found I certainly do my. Even a small amount of stress. And I can. People are like, oh, are you stressed? Like, I know if I'm stressed because I can feel that my symptoms will. I have a physical response to stress.

David Peyman (11:15)

And I know it.

Jeff Alex (11:16)

The stress affects me.

David Peyman (11:18)

Me as well. And I've known so many friends, not only in South Africa, in England, America, Australia, everywhere, when, when we're all honest, it can help. It can be part of a trigger.

Jeff Alex (11:29)

And so you mentioned copaxone and you were on the original unblinded trial before we had full placebo controlled trials more than 20 years ago now. And you still do the injection daily. So could you tell us about the experience of that trial and how that being on that, you know, the only drug at the time of REMs.

David Peyman (11:47)

Yeah, Jeff, they only took a few of us on it, and I think we were about 50. And I fought like hell. And it was originally devised by an Israeli scientist with Teva Pharmaceuticals. And my sister lives in Jerusalem and she helped me really fight to get onto it because so few were getting onto it. I think I was 40, number 45, 46. And got there. And so we knew we were injecting ourselves with the actual medication, not placebo. But I weighed up the risk benefit ratio or the possible risk. Possible benefit ratio, which was not really known at the time. And I thought the possible benefit outweighed the possible risk. And I would take a chance with my body as I had weighed up everything with diet food. Swank later, George Jelinek's research as well.

Jeff Alex (12:38)

You obviously. I mean, so you still on Capaxone now? So.

David Peyman (12:40)

Yes.

Jeff Alex (12:41)

You don't have a problem with injections and that?

David Peyman (12:44)

I mean, I get a little itchy or a little bump, you know, this or that, but tiny compared to the way. I mean, it's just nothing compared to the symptoms that we all know so well.

Jeff Alex (12:53)

And being on a trial program, you'd encourage people to, well, assume.

David Peyman (12:57)

I know it only helps 1 in 3 lessen the number and severity of relapses. Which we all know. And it's. We all know, obviously there's no cure or anything, but what's to lose? And the side effects, I think, are pretty minimal compared to the possible side effects of other things, you know, and what's to lose? In the same way that I went back to those six neurologists with a diet, and I walked into their office and they looked at me and they said, you should be dead, thinking they were joking, you know, years later, I went back furious, but calmly and quietly in a very English way, and I said, I'm not dead. Look, I'm working full time, in fact, and I've had hardly any time off for Ms. They all said, miracle, miracle, miracle. And I said, nothing, I don't think so. A lot of blood, sweat, all the rest of it, tears, as we all know. Yeah.

Jeff Alex (13:48)

And so you mentioned stress management. So how do you go about the stress management side of dealing with ms?

David Peyman (13:55)

I try not to get things like flu and infections, you know, but one can't help, you know. But then I watch that like a hawk because I know the triggers for me when I feel that starting to happen. Path of least stress. One of my three mottos comes in and I figure out, okay, what is the path of least stress here? And try to remove myself from the situation, which may be internal in my own head, or it may be an external or a mixture of situations, and remove myself from it as much as I can and walk the other way. Or I see it as a barrier in the road which I try and find a way around or through, or walk another pavement. I don't try and pretend to be Mr. You know, mental tough guy or whatever, and take it on and da, da, da, da, da, and all the rest of it. I try and outwit rather than cavalry charge like the Light Brigade.

Jeff Alex (14:54)

And so connected with that. There was something I was asked the other day about this, the anger side of it. Do you not feel angry and it's unfair that you've got Ms. And it's not right? You know, I just think it's random. But how. How I dealt with the anger of that. He said, so how would you deal with the mental health components for the fear of ms, the anger of ms, when you've got a chronic incurable condition like this?

David Peyman (15:22)

I think that's such an important question and point that you're making, Jeff. And that's why I put myself into counseling therapy for five years together with figuring out, you know, what is stress for me or my triggers, how to channel the anger and the rage and the. And the fear, the terror. Because I was in all those 42 years ago. I was terrified, freaked. And, you know, I thought, well, that's it, it's over. Dead. And dreams and hopes and whatever, gone, you know.

Jeff Alex (15:48)

Well, you have doctors telling you that too.

David Peyman (15:50)

Exactly. And my body had completely crashed. So I just started to think slowly and it took time where I started to think, you know, maybe there is some way I can channel this into fighting rather than just sitting with my anger. But how to fight smartly. Which meant understanding the biochemistry. What is going on actually? What does the word mean? I didn't even know. It's Greek for multiple scars, as everybody knows. So how does it work? Everybody accepts cholesterol, heart disease and so on. Calcium, osteoporosis, et cetera. Maybe there is something I can do to intervene in the biochemical chain in my own body. Not cure, never. But maybe the intervention can happen on a biochemical level with food, with diet, with stress, with other things, maybe in the way that everybody accepts as one understands more and more, not only about genetics, but biochemistry. That's why I read 130, 140 books, I think. And that was all those decades ago and still do. And I thought it's a way of channeling the anger into something positive. Not the cliche of triumph over adversity, but the hard work to understand that anger can be an energy creative, like fire can be creative, it can be destructive. I could destroy myself with angle.

Jeff Alex (17:17)

You mentioned you had professional guidance from a counsellor. So how did you find that experience of going? Because I think a lot of people probably haven't gone to a counsellor. But how do you find the experience of going to a counsellor? And what were the benefits of that?

David Peyman (17:29)

That's great. I went to two or three. I went to about three and gave them. Ditched them quickly because they were just giving me jargon. And I had read a lot from my field as well, until I found a guy. And I would always ask them first question, what do you think is the aim of therapy or counseling? And I'd get the usual cliches until I met this one guy. And he said to me, the aim is two things. Number one, lessen your suffering. And number two, to try and find out to reach a stage where you are stimulus, unbound. Whatever the stimulus coming in, I don't have to be bound to it. It may be positive, negative. It may be from a love, from a child, from a partner, from a community, a society at large. South Africa, the maddening sanity of apartheid, the horror. It may be just on a very personal family level, you know, a wife, a partner, a boyfriend, a girlfriend, whatever, a child, a parent. I don't. It's stimulus unbound. Let the stimulus come, but don't be bound to it. Take a step back mentally. And I really practiced that as much as I could and still do.

Jeff Alex (18:37)

You can't be stressed about if you can't do it, if you can do something about it, then do something about it. But if you can't do anything about it, then you can't. You have to let that go. And I think that's what you were saying there with that.

David Peyman (18:50)

Exactly.

Jeff Alex (18:51)

Because unbound.

David Peyman (18:53)

Exactly, exactly, Jeff. And stimulus unbound. Because Ms. Is a thief in the night. We never know when it'll strike and we'll have a relapse or will suddenly get worse. And of course that is part of the terror and the fear. You know, we never know when the thief in the night will hit. But do I have to remain hostage to that? Or can I try and look at myself being hostage and step back, not deny it, but see I am being hostage to it and I live always as a hostage to it. Or can I step back, as you say? It can be the news, it can be something else, it can be somebody close, it can be work, job, anything, money, your child, anything in life.

Jeff Alex (19:28)

And many people change their careers or change their life in a major way after diagnosis. Have you or how have you experienced that? I mean, you mentioned you started out, you were in the army and now you've had this amazing theatrical career. So was that as a result of diagnosis or how did things change after diagnosis?

David Peyman (19:47)

Well, unfortunately, I didn't have the money to buy my way out of the white South African nightmare of an army, as some did, to be frank.

Jeff Alex (19:55)

So was it a conscription system, Forced conscription.

David Peyman (19:59)

Right. Or you would go to prison for 15 to 18 years, or if you came from a wealthy family, you could buy a passport and sort of buy an air ticket and get out anyway, during the times that I was called up, not all the time, and it was a couple of years army at that stage. And so I, I held my own views about the horrors of apartheid. One of the most amazing things was doing work much later for the, for, for Nelson Mandela when he was president, on conflict resolution work and using theater for conflict resolution. Well, between the ex white South African killers in the army or the police and the ANC guerrillas fighters, and how to put together the new police force and army where human rights, individual rights, justice, democracy were at the core, not dictatorship. Anyway, it was remarkable using theater, certain theater approaches for that which he had asked. Anyway, yeah, I just tried to channel this anger into all of it, you know. And Mandela put it brilliantly when he came out of prison because one of the first things he did was he went to see the wife of the man who'd coined the term apartheid. And he'd been the prime minister of South Africa at the time for wut who had thought it all through and implemented the policy of apartheid. He went to see his wife, he was still 90 something and had teeth and he was heavily criticized. And he said, Mandela, he said, well, how do I find my real freedom unless I face the greatest terror and the greatest evil of my life? How am I going to find my own freedom without rage and anger? Just sit and have a cup of tea with it. And I thought to myself, I'll have a cup of tea with my rage, I'll have a cup of tea with my anger. My hostage to Ms. Dictating so much of my life. Yes, it turned me towards university, which I didn't originally intend to become a university person, but I felt I wanted financial security, I needed it. And I managed to have a parallel life between university and writing and directing and I try to work as much as I can. That parallel life between the creative and the academic and the teaching side, not perfect, sometimes too much one, too little of the other, but, you know, shouldn't have a cup of tea with it. Like if he could do it well, who was I to not try and do it with ms?

Jeff Alex (22:18)

And so what advice would you have for other people who are trying to find their own voice and follow their passions, particularly if they've got Ms. And maybe they're younger in diagnosis, they might be in their mid-20s and they're worried about following their passions when, when they've got an illness like Ms.

David Peyman (22:36)

Think I think it's so important what you've just asked and said and crucial. And I don't want to seem lecture y, I can only talk from my experience. Number one, try and find out the stress triggers. Try and find out the ways of not being a hostage and ways of channeling rage into something creative like fire, I said earlier, can be creative or destructive. Try and find a passion in work and love, in family or whatever, travel, whatever that gives one some kind of satisfaction without being naive or sentimental. And try and live that as much as possible with earning enough income so you can pay the bills, put bread on the table. The compromise I made, to be frank with you, was going to university because that would put bread on the table, and then I would be able to follow my passion whenever I could, of writing, directing, theatre, film, et cetera, et cetera. It was a compromise. I had intended to be freelance, travel the world, direct all over, write all over. I was in New York, I was elsewhere, as you said, you know, everywhere and so on. I had to massively compromise, which had its own anger, but I had to find a way to combine the passion with the reality of, you know, paying the bills. And I think that takes time. I don't think it's. I would never pretend it's a quick, easy step. Of course it's not, and. But one has to try because no one is going to help us. Judy helped me amazingly. George Jelinek's book, everything you do and others with oms do also helped later in life. The Carpaxo, that therapist I mentioned, I sought those out and they helped in return. And I will always try my best to help anybody with Ms. I've spoken to hundreds and hundreds since over the many decades, but in those early days, I didn't have a clue. I just sat and if I couldn't write because I couldn't hold a pen, I'd ask a friend, I'd dictate, and a friend would write for me or my sister, and then they would take it to the post office and put it in the post box. In those days, obviously before the Internet and everything, find people who can help find who can help, and find a way to combine passion with money, whatever that passion may be, and know that a compromise is going to have to be made. You have to make a deal with oneself.

Jeff Alex (24:53)

And another symptom, which you haven't mentioned is that affects almost everyone with Ms. Is fatigue. So how do you manage that? And, you know, with a successful career, both academically and in theater. So how do you manage the fatigue levels?

David Peyman (25:09)

Well, I think, Jeff, the way you see me is, you know, when people look at me, they don't have a clue I have Ms. Unless I tell them. And I'm not saying this to boast or brag or any naive nonsense. You know, I tell people if I'm asked or I share, I think. I don't know, it's just. It's a way of living and thinking. You know, I was so obsessed with the minutiae of the diet and the vitamins in the beginning. I became in research and understanding everything, channeling that anger. Now I know I'm able to put that aside for a while. I can come and go from it, but I don't think there's any harm in turning obsession into something helpful to oneself. Because what I did learn, people are people out there who will help, but we do have to knock on their door. And a lot will reject, but some will not. And I was amazed at the ones who wrote to me. And there I was sitting in a friend's, lying in a friend's bed for a year and a half, whatever, couldn't do anything. People then would even help, just in little. Just in Johannesburg or wherever and later as well, you know. So it's not easy and it's hard, but what's the alternative? The alternative is obvious. As they said to me, you'll be dead in four or five. Maybe not dead, but you'll get worse, or you'll this or you're that, or, you know, And I don't know, I just. Maybe I've just always believed in fighting, but fighting with us.

Jeff Alex (26:41)

And you've mentioned that you've spoken to lots of people. So how has community and speaking with others who live with Ms. Helped you?

David Peyman (26:48)

They've helped, amazingly, some of the people I've mentioned already, and when I actually got Swank's book in Johannesburg from the publisher, I wrote to in America and in London and New York and that data, et cetera, managed to get it. And then I managed to get many things, all before the Internet, and I found an amazing community throughout, people who would just help, they'd write to me, handwritten letters, authors of those books, or I'd try and telephone them in the old days, you know, whatever. Some did and some didn't, but the ones who did were amazing. And I'll never forget it.

Jeff Alex (27:19)

And then go, so people with Ms.

David Peyman (27:21)

As well, and people with ms, which I've carried on, and there were people with Ms. Who'd given up, people with Ms. Who had shrugged, people with Ms. Who were just trying to live life in the fast lane as much as possible, probably, possibly die young, which is a choice. I don't judge ever, never judged. I just listen and I just try and suggest from now, all these years later, all I can do is say what has helped me. I don't want to pretend I have an answer. I don't want to pretend that I'm giving a lecture. I can just say it might help you. It's worth a shot, why not? What's to lose? And even that I didn't know and I was scoffed at by many people, scientific friends, scientists, medical friends, medical cousins. They all scoffed and dismissed it out of hand. You know, now, different story. They look at me, maybe I'm just fluke and just luck fluk. But I don't believe it because I know how bad it was 42 years ago. I think, yeah, you know, it's. What can I say? Like anything in life, it's worth trying. I had a professor who said to me, david, you'll never write a play better than Shakespeare, so why bother writing? And I looked at him. This is in South Africa, early days of my university. And I said to him, are you being serious? And he said, yes. And I said, professor, you don't have a clue. And I'm not going to listen to you because what you're talking is utter nonsense. And it comes from your failure, not mine. That's the wave you surf, not mine. And do we know, is the wave of history inevitable? We have no choice. We have to stick with that wave and nothing else. Or are we merely the foam on the wave of history where we don't have a choice? We just foam tossed around by Ms. Or we can try and slip into the wave and try and surf in some way and make some choices. Something. Maybe it'll work, maybe it won't. Maybe the wave will dump us anyway. But what's to lose? Yeah.

Jeff Alex (29:17)

So, firstly, thank you very much. That's been a fascinating and inspiring talk that we've just had. But just to finish up, is there anything else you'd like to add and specifically, any advice you have for people who are newly diagnosed or new to the Overcoming Ms. Program?

David Peyman (29:34)

I would say get in touch with your anger and rage and have tea with it. I don't want to sound like a Zen Buddhist, because I'm not. Or fight it or get furious or punch or kick or do whatever. You know, when I swim, I punch and kick sometimes because I'm still angry. Okay. I don't think it ever goes for us if we're really honest underneath it, because, of course, it's changed our lives completely. You know, obviously it totally changes, but the question is how to take that change. I would say get in touch with that rage, Talk to it, find it and try and use it in a positive way. Understand Ms. Research, understand the medications, understand oms, understand the diet, understand the vitamins, understand the biochemistry. Use the brain, what we are given. Use that to understand before we give up or just accept whatever a doctor might or might not say. That's the first thing. Never give up, never surrender, Mr. Churchill. Secondly, get into the diet, the vitamins, the medications. Try this. That see what may or may not work for oneself. Understand stress and the role of stress crucial and how to manage one's own stress and what is one's own stress and stick to it and take the path of restress and take the path of channeling the rage into something positive to fight. And talk to people with Ms. Talk to people like yourself, Jeff. Talk to people, anybody, anywhere who have the condition who are trying to do something about it. Not only. And some of the medical experts who will listen and talk and cross the road to the other side if they just judge and say, well, you know, nothing we can do. Try this medication, try that. Goodbye. You know, don't let. I mean it's the cliche, but it is true. Try and be partly married and partly divorced to Ms. One can't be fully either. That's naive and it will dictate many choices of job, love, happiness, family, tragedy, sadness in life. But try and find a way with both. Try and surf that wave, not be the mere foam of it. As much as one can with that.

Jeff Alex (31:38)

I'd like to thank you very much, David Peyman. It was absolutely fascinating.

David Peyman (31:42)

Thank you so much, Jeff. Thank to you and to everybody involved with oms. Thanks to George Jelinek, massively. I think his book together with Judy Graham's book on my two Bibles, literally, I really mean it. I go back to them again and again and again, you know, and when in my darkest hours I read them again and again and again. And to everybody with Ms. And suffering, morality is to try and lessen suffering. I really believe it. Morality is not about good and evil, right and wrong. Morality is about lessening suffering and let's try and help each other.

Jeff Alex (32:13)

Great. Thank you very much.

Regina Beach (32:16)

Thank you for listening to this episode of Living well with Ms. Please check out this episode's show notes@overcomingms.org podcast. You'll find useful links and bonus information there. Don't forget to subscribe to the podcast so you never miss an episode. And please rate and review the show to help others find us. This show is made possible by the Overcoming Ms. Community. Our theme music is by Claire and Mab Dean. Our host is Jeff Alex. Our videos are edited by Lorna Greenwood and I'm the producer, Regina Beach. Have questions or ideas to share, email us@podcastvercomingms.org we'd love to hear from you. The Living well with Ms. Podcast is for private, non commercial use and exists to educate and inspire our community. Of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional.