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Multiple Sclerosis and the Musician
54 Plays3 years ago
Raymond Meade has been in the UK music industry for over two decades, first as a singer/songwriter for the Ronelles, a solo artist and session musician, and current bassist for Ocean Colour Scene. He also made a BBC documentary about the music of Auschwitz. His life is literally in his hands.
So what happens when those hands start tingling during a concert...and it doesn't stop? When you suddenly can't play music? When your doctors tell you that you have Multiple Sclerosis?
Listen to Yasi and Steven's interview with Raymond as they talk about him facing his own mortality, the strength of friendship and family to survive, and the perils of a music career on the edge. Also, meet Dr. Mark Janicki, an neurologist and MS specialist from Indiana, whose "always leave a patient with a smile" approach and early intervention from across the pond helped Raymond tackle the biggest challenge of his life.
Follow Raymond on Twitter at @raymeade82
Follow Raymond on Instagram at @ray_meade82
For more information on Multiple Sclerosis (MS), go to https://www.nationalmssociety.org
For more about Raymond's music career, go to https://www.powerpopaholic.com/artist-interviews/raymond-meade
To listen to Ocean Colour Scene, go to https://www.oceancolourscene.com
For a link to Raymond's documentary, "The Railway People", go to https://www.youtube.com/watch?v=ht0BuOhU_RQ
For information about Mark Janicki, MD, go to https://www.witham.org/provider/mark-j-janicki-md-neurology
For information about Athletes and the Arts, go to https://www.athletesandthearts.com
Bios:
Raymond Meade: Raymond Meade is a session musician from Glasgow, best known for his work with Ocean Colour Scene and Gerry Cinnamon. He has played on gold selling #1 albums and toured internationally for over 20 years, performing with some of the biggest names in music.
Raymond also wrote and produced the New York Festivals Award winning documentary "The Railway People" which told the story of Holocaust Survivor Eva Kor and Raymond returning to Auschwitz together in 2016. The film was shown across the world. Eva and Raymond remained close friends until her death in 2019.
During the pandemic years, Raymond produced a series of true crime podcasts which revisited The West Murders of 1994. Titled "Where No Shadow Falls", these podcasts featured key players in the case and were very well received.
He is currently studying a degree course and learning the Polish language with a view to realising his ambition of becoming an Auschwitz tour guide in the future.
He writes the occasional article for the men's lifestyle magazine GQ.
In 2021, Raymond was diagnosed with relapsing remitting multiple sclerosis. He is married and lives in Glasgow with his wife Leanne.
Mark Janicki, MD: He is a board certified neurologist, a fellow of the American Academy of neurology. He has been involved in over 15 clinical trials regarding disease modifying therapies for multiple sclerosis. He trained at Indiana University medical school and residency in neurology at Indiana University Medical Center. He has lived in Practice in the metropolitan Indianapolis area for the past 35 years. He is a diehard Indianapolis Colts fan. Married to Maribeth, he has five children and five grandchildren. He loves golf...it doesn't love him back.
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Transcript
Introduction and Podcast Overview
00:00:06
Speaker
Welcome to the Athletes in the Arts podcast hosted by Stephen Karaginas and Yasi Ansari. Hello again, everyone. Along with Yasi Ansari, I'm Stephen Karaginas and welcome to the Athletes in the Arts podcast. Now, if you like what you hear, please do us a favor if you could and leave a nice review for the podcast.
00:00:31
Speaker
Make sure you click subscribe on wherever you get your podcasts and new episodes every month will be delivered to you.
Hypothetical Scenario: Musician with MS Diagnosis
00:00:37
Speaker
If you want more resources for performing arts medicine, like anything on dance or music, vocalists, marching bands, nutrition, please go to www.athletesandthearts.com. Now for today's show, I want to ask you something like a hypothetical here.
00:00:55
Speaker
Imagine if you were a successful musician in the UK, a lead singer for one rock group, then a solo career, work as a session musician, and now playing bass for a group you've admired for decades. Now imagine if one night, during a show, your hands started tingling. You barely get through the show because your hands play like they're on autopilot, but what if they don't stop tingling?
00:01:20
Speaker
What if the tingling gets so bad you can't play guitar? What do you do? What goes through your mind? And then what if you are in the middle of a pandemic? What if you can't get an appointment with a specialist for seven months? And then what do you do if the diagnosis you finally get is multiple sclerosis?
00:01:44
Speaker
Well, we are taking you to Glasgow, Scotland today to talk to someone who faced this crisis just this last year.
Guest Introductions: Raymond Mead and Dr. Mark Janicki
00:01:51
Speaker
Joining us today is Raymond Mead, basis for the English rock band Ocean Color Scene. Also joining us is Dr. Mark Janicki, a neurologist out of Lebanon, Indiana, a specialist in multiple sclerosis treatment whom Ray consulted with to help guide his treatment.
Raymond's Early Music Career and Challenges
00:02:05
Speaker
So Dr. Mark Raymond, thank you so much for being here today. So Ray, let's talk a little bit about your music career. So you started off in the 90s with in high school and playing music. Take us a little bit through how you got started in music.
00:02:21
Speaker
I guess I'd always just wanted to be a guitarist from as young as I remember, eight or nine years old. That was all I wanted to do with my life. Obviously you get to high school and you meet like-minded people.
00:02:38
Speaker
you form bands and sometimes it's good sometimes it's you know not as good but it's all like a kind of learning curve in a way but it was really after after I left school that you know decided right this is
00:02:54
Speaker
this is what I want to do now, how am I going to make it my profession, that I can make a living out of it? And I guess that the first kind of real stab at it was my band, the Varnelles we were called, and that was myself and my brother had this band. And we had a record deal and we went all over the world really, playing America and Japan and released an album.
00:03:22
Speaker
probably doing it for the wrong reasons. At that point, it was more about the party side of it rather than the music and the playing. But we kind of shot ourselves in the foot in a lot of regards. But yes, I would say that was kind of the start of it. But I knew all through school I had no interest in anything other than being a musician.
00:03:50
Speaker
So it's more like the party scene or just a fun part of the music scene that got to you guys or what led to the Ronell's falling apart? Just drinking too much and don't join a band with your brother.
00:04:05
Speaker
I was going to say, two brothers from the UK in the 90s, it sounds very familiar. Yeah, it probably does. It's one of those things. The strange thing is, I'm 12 years sober now and my brother is 10 or 11 years sober and we still play music together now. It's worked out all right, but in those days, it was volatile to be around.
00:04:34
Speaker
Did your brothers, did you and your brother have a similar, was there a similar dynamic like with Oasis and their brothers, their famous, you know, outwards spats and stuff? Were you guys, were you guys more compatible or? I think it's hard to compare it because Oasis were kind of the biggest band in the world and we weren't even like the biggest band in Scotland, you know, so it's kind of, it was, it was just a
00:04:59
Speaker
We were looking back on it, we were a kind of bar band, you know, it was a kind of blues rock and roll thing. We just thought we were Keith Richards and all the other daft rock and roll myths that you can abide into when you're young. But yeah, it's funny looking back on it, I don't recognise myself at all.
MS Diagnosis and Its Impact on Raymond's Life
00:05:21
Speaker
You know, it's something that I've gone to kind of great lengths to black out of.
00:05:26
Speaker
my memory, which is actually the M.S. has come in quite handy because my memory is not so good, so I'm kind of forgetting things a bit easier. But, yeah. But, you know, it all leads you on the path. You know, if I hadn't had that band, it wouldn't have led me to the next step, which took me to the next step, which, you know, I ended up playing with bigger artists and doing it at a good level. So, you know, it's all a learning experience, I think.
00:05:54
Speaker
And now you've gone solo, correct? Well, kind of, I do my own thing, you know, as and when I can, really. You know, I play in a group called Ocean Colour, seeing who a kind of really well-known British band. And I was such a big fan of theirs growing up. I used to go and see them from the Asia
00:06:17
Speaker
14 or 15, so it's a really strange thing now to literally be on stage with the guys that made me want to be in a band. It's a kind of a fairy tale thing in a lot of ways, but I write as much as I can, but I'm predominantly a session musician these days, and I just work for other people, and I quite like that. It's what I enjoy musically.
00:06:48
Speaker
So Dr. Mark, so you were one of the few doctors I ever see who has a video on themselves about their career. And it describes who you are. And it's through a hospital. And yet, you're doing Elvis impressions. And for a neurologist, that's
Dr. Mark's Approach to Neurology and MS
00:07:08
Speaker
pretty unique. So tell me about your approach to medicine and how you formed that. Well,
00:07:15
Speaker
My approach to medicine is I am very grateful that I can be in this profession. Neither one of my parents finished high school and I had this kind of in me from the beginning when I was in grade school and high school.
00:07:34
Speaker
And that's what I want it to become. And what I like to tell people is that what I like, my motto is kind of that I like to leave, when I leave the room after seeing a patient, I want them to be smiling. No matter what kind of news I have to bring them, I want them to at least be smiling when they're going home and have a
00:07:55
Speaker
have had at least some kind of good experience about our encounter, even though some of the stuff I might have told them might not be very good. So I enjoy the encounters with people. I think I'm a people person. My wife would probably say something different.
00:08:20
Speaker
Yeah i do the voices i've had for a long time and sometimes they kind of break the ice so it's always good to have something that makes people laugh or smile. What led you into neurology.
00:08:37
Speaker
That is very interesting. So I originally went into medical school thinking I was going to becoming a pediatrician. I had three older sisters. They had already started families. And I loved my nieces and nephews. And I thought, this would be great. Then I experienced this tremendous neurology professor in med school. And the brain and the spinal cord all seemed to make sense. And it's just something I kind of fell in love with.
00:09:07
Speaker
The nervous system is the prime, the superior organ in the body. Without it, nothing else exists. Do you have specialized interest in the field as far as different diseases and such? I'm very interested in multiple sclerosis and have developed a niche over the course of the last 30 years and see a lot of patients with MS.
Raymond's MS Journey: Symptoms and Diagnosis Challenges
00:09:34
Speaker
So Ray, so we're talking about your career and you're going along, you're a session musician, solo career, and then you start having some problems. What kind of things were going on? Well, last year, I was under a lot of pressure last year with some of the people I was working with. And I just started to feel
00:09:57
Speaker
generally exhausted but with dizzy spells and um there was one morning i woke up and i couldn't get out of bed the room was just constantly turning just couldn't couldn't set so my wife uh phoned an ambulance and they came and checked me out and they took me in to the hospital for a day and um they did a quick x-ray of my head and stuff but there was no MRI
00:10:23
Speaker
So by that point it had kind of settled down and I just went home and they didn't keep me in but a couple of days later
00:10:31
Speaker
the tour I was on was starting so I'd gone away for a couple of weeks and I think I got about seven or eight shows in and there was just a point in one of the songs I went to play a guitar solo and I thought wow my hands feel my hands don't feel right at all here you know like they felt really clumsy and and it's a
00:10:53
Speaker
It's a hard thing to describe, but I'm not really thinking when I'm playing. It's just autopilot. Your hands are there before you know it, but I noticed that I was concentrating so hard on playing. What was a pretty simple guitar solo?
00:11:09
Speaker
So we finished the gig, I went back to the tour bus and I noticed my feet were just pulsing, they were so painful and I had new trainers on so I thought it must be something to do with that. So I took them off and that was even more painful and I started to think, you know, there's something kind of wrong here. As luck would have it, we were in Newcastle which is only a couple of hours drive from Glasgow and we were travelling back home through the night
00:11:37
Speaker
And I got, you know, I went to the hospital the next day and that was me in for, I think it was eight or nine days. And I had the MRI scan that revealed what they thought was multiple sclerosis. So it was still, you know, it's still such a shock to say it out loud, you know, even hearing Dr. Gennicki talking about MS and stuff, I still
00:12:05
Speaker
I still can't believe it's, I've got that. I've got a connection to it in that. But I've certainly, I've had to do a lot of reading up and things. I know a lot more about it now than the last time we spoke. But it's still, it was a real shock then. And now, there's always that thing you wake up in the morning every day and you have that nice,
00:12:34
Speaker
10 seconds before you remember that this is happening, you know, and then you're aware of the sensation in your hands, which has never really, it's eased, but it's still there, you know, it's still that kind of pins and needles kind of woolly feeling in your fingers. And I just feel a bit slower in my general life now, but then I've definitely had a good recovery from that relapse as far as I can tell, you know, I'm very active again. And I'm just grateful because at the time,
00:13:04
Speaker
your mind is an overdrive. You're just thinking the worst. You know, at first you think you're going to die and then if you're not going to die, you're going to be in a wheelchair or you're going to be restricted. And as a musician, I'm thinking, oh, I can't use my hands. What am I going to do? Because I've gone all in with this. I can't really do much else. So I think
00:13:26
Speaker
There's just come a time with it where I've had to calm down and just take it a day at a time. Give time time. It's that old kind of adage, isn't it? Just let my body recover as much as it can.
00:13:45
Speaker
see how it goes. I think that's the best I can do at the moment. What has helped you this past year cope with this, with some of the changes that you've had to make?
00:13:59
Speaker
Do you know, I did a lot of reading on it at the start and I had to ban myself because I realized that Dr. Google isn't always a good reference point. I find that a lot of people tend to focus on the bad.
00:14:21
Speaker
And I get it. This is a horrible thing for anybody. And I know there's more severe versions of it than the one I've got, which is the relapse and remitting. But I guess just informing myself a bit.
00:14:36
Speaker
I had to take stock of my whole life really. I had to look at some of who I was working with and think, is this good for me? Is this good for my stress levels?
Life Adjustments and New Appreciations
00:14:46
Speaker
Do I really need this in my life? There was a few things I had to go. There was a few people I had to go.
00:14:54
Speaker
I don't mean that with any malice, but I just don't need the stress anymore. So I'm just trying to eat better, I'm trying to sleep as much as, you know, one of the doctors I spoke to at the time told me, you're going to get quite easily fatigued.
00:15:13
Speaker
I didn't think that would happen, but he was right. You know, like every day I go for a sleep in the afternoon and that kind of takes the edge off the symptoms. But I got back to my running. I've got exercise bike at home. I go and do that. The most important thing was getting to play my guitars again, you know, getting my hands working. I couldn't write, I couldn't hold a pen. There were so many things that, you know, I find that I'm taking
00:15:43
Speaker
Taking real joy and pleasure out of things I wouldn't have paid any attention to pre-September last year. I don't think that's any bad thing. I've got a whole new appreciation of things that I definitely was just taken for granted. Right. So slowing down and taking some time to do the things that you love has helped during this time. Now, Mark, can you share a little bit about your involvement with Raymond's journey?
00:16:12
Speaker
Well, it came through another physician, Dr. Alex Core. He's a podiatrist at the facility where I work. And I guess he knew Ray, of Ray. And he brought Ray to my attention. And I think Ray and I met over a Zoom or internet connection. And we talked a little bit about it, about the condition. And that's kind of how I got to know Ray.
00:16:40
Speaker
you'll also be assuring at the time, you know, because after Covid, like the National Health Service in Britain is backlogged severely, you know, I wouldn't have had the opportunity to speak to someone for seven or eight months, you know, so to actually have that
00:17:01
Speaker
that opportunity to talk to you was massive for me. And it's funny when you said that you like everyone to go away with a smile because I remember you just said, I may be fine. You make a full recovery. Don't worry about it. Just go and do your life. Just do what you're doing and try not to focus too much. And I was really upset when we came off that call because for the weeks before that, I was thinking,
00:17:24
Speaker
planning a funeral or something, do you know what I mean? I thought I was on the way out. So it was a big help to me. It was massive. And eventually I got my own kind of neurology team in Glasgow and I've got an MS nurse now that I can call if I need any reassuring sort of, if there's anything to talk about.
00:17:48
Speaker
But Ray, you've given me credit. You're my only international patient. I'm proud of that. That's good. When I go speak to other groups about MS, I say, well, I have a patient in the UK. I have a patient. It's international. Yeah. I tell them I've got an international doctor. So there you go.
Understanding Multiple Sclerosis with Dr. Mark
00:18:12
Speaker
So mark tell us a little bit about ms as a disease me multiple sclerosis seems to have. One of these reputations of being like ray was saying it's a death sentence it's the form of cancer it's like parkinson's it's like so many different things it seems to have a lot of misconstrued concepts about it so can you tell tickets through a little bit about what ms is what's actually happening what's the root of it.
00:18:35
Speaker
Well, your immune system has learned a bad behavior, and for whatever reason, and most people think that in order for this to occur, it's an immune-mediated disease, autoimmune disease, that you have to have been, your immune system has to have been tricked or triggered, and usually we think that's probably going to be a virus.
00:19:01
Speaker
And they're doing a lot of research on that and we probably think it's related to the Epstein-Barr virus to some degree.
00:19:10
Speaker
And what we know about this disease is that it occurs in about roughly 1 in 800, 1 in 1,000 people, but that there is a genetic component to this. So that if mom or dad has multiple sclerosis, the likelihood of their child, their offspring, is about 1 in 25 now. So we know that
00:19:34
Speaker
We're all exposed to the same viruses, so why only one in 800 of us get this disease? It has to do with something in our genes that when the virus triggers our immune system, the genes then kind of take a left turn instead of taking a right turn.
00:19:54
Speaker
They activate all these abnormal proteins and they start attacking your nervous system. So Ray was just recently diagnosed, but I'll bet he's probably had the disease for maybe even a decade before his first presentation.
00:20:10
Speaker
It is the disease that really had a bad prognosis back in the 80s and 90s until the advent of specific treatments for this condition. It really did send half of the people that had the disease to wheelchairs in about 20 years. We've made great strides.
00:20:32
Speaker
When i first came into practice i had nothing to treat this disease we have roughly now over nineteen agents that could potentially be used to treat this condition and several on the way so
00:20:49
Speaker
It is a good condition if we're dealing with relapsing multiple sclerosis. The one thing I do want to share is that there are basically two types, relapsing form of multiple sclerosis, and then you have what's more called a progressive form of multiple sclerosis, which doesn't have that ability to respond to medications very well.
00:21:15
Speaker
Fortunately, 85% of all cases of multiple sclerosis are of the relapsing type, and only maybe 10 to 15% are of the progressive type. The name says it all. The relapsing will have attacks. They'll get better. They'll have attacks. They'll get better. My job as a neurologist is to reduce those number of attacks so they don't accumulate disability, and that's where the treatments become involved.
00:21:42
Speaker
The progressive MS patients on the other hand just slowly get worse without really having any attacks. If they do very little attacks, they just slowly get worse with their neurological condition and basically we don't have much to offer those patients.
00:21:59
Speaker
So for like the 10 years beforehand that he might have had this disease. Um, what kind of, could he have had like a very like constitutional type symptoms that are very, um, like minimal that he will just ascribe to something else. And then it just, or is it always kind of simmering below the surface?
00:22:15
Speaker
So this can be a great fool or he might have had something that he might have said, ah, it's nothing. Maybe some numbness in an arm for a few days and it passed and it went away or he may have had transient numbness somewhere else and it went away. The other thing is that we know this disease can
00:22:34
Speaker
It attacks the central nervous system. It can attack areas of the brain that aren't what we call eloquent, that don't manifest themselves outwardly like speech and vision and motor skills. It can be located in maybe your frontal lobes where you may not have any clinical manifestations, but if we could rewind the
00:22:58
Speaker
the Ray tape and go back 10 years and do MRIs on Ray yearly, I bet you we would see something, those first couple of lesions occurring and he might not have even been symptomatic. So this is a peculiar disease. It's like the iceberg in Titanic. So Mark, how have you seen this condition affect musicians? What does that look like when you've been working with musicians?
MS and Its Impact on Artists
00:23:27
Speaker
Well, Ray is probably my first professional musician. So I have other ones that kind of, you know, as a hobby, they'll play the guitar, play the piano, and certainly the motor skill aspect of it is very important. But there can also be a thinking aspect. Ray alluded to the fact sometimes what he does, a solo, it's just,
00:23:53
Speaker
It's reflex he's done it he's he's good at what he does he's a professional and it just comes naturally we can lose that ability but when i see people who you know the deal with this is more of a hobby.
00:24:07
Speaker
They even struggle with kind of thinking about what's going to happen next. So it can occur on several levels. It can occur with a motor skill paralysis. It can occur with kind of a thinking through what's going to be the next chord or next segment they're going to play. What about in other, I guess, arts fields? Like, have you worked with dancers who may have been diagnosed with a solution?
00:24:36
Speaker
Yeah, I've not had anybody, what happens unfortunately is it usually take, it robs people in the early stages of their lives. So we're talking about a disease that typically manifests itself between the ages of 20 and 50 with the average onset being 35.
00:24:59
Speaker
I don't recall any specific professional artists that I have that short of Ray that have had this disease that I've had to really necessarily dealt with, but you can see where it would be detrimental to their profession and what they do with their livelihood.
00:25:19
Speaker
So Ray, you have this, this, you know, these symptoms that come on and they attack, you know, the most essential aspect of your physicality in your career, your hands.
Family Support in Coping with MS
00:25:29
Speaker
Um, so from a mental standpoint, that's obviously got to be terrifying. And you already talked about that a little bit. So in, um, in the UK, do you have, did you were able to get any support from a mental aspect? Where is, what is getting mental health support like in the UK?
00:25:49
Speaker
It's a long wait, like everything else with the NHS. It's an amazing thing, our health service, you know, and it's freeing. I know it's not a luxury that's afforded to, you know, Americans and stuff like that, but I'm not one for sitting, talking about how I'm feeling or any struggle I might have with it. You know, I kind of just deal with that.
00:26:19
Speaker
myself really and kind of work through it. I just don't see myself going and sitting talking to someone I don't know about. Especially someone that's not got it or someone that's not a neurologist or a specialist because I'm not sure what they can really tell me. It's been a dark time. It's been a bad time.
00:26:46
Speaker
There's a song by Banco Radiohead and this is how I've come to sum all of this up. Then there's a line in the song and it just says, we're all accidents waiting to happen.
00:26:57
Speaker
And I just thought, you know, see if this is my accident, see if I've got MS and that's what I need to deal with in my life, then it's not the end of the world, man. You know, like at the time I thought it was, but, you know, they could have told me I had two weeks to live and that I had cancer or, you know, or, you know, you could have been a kid and you didn't even live a life. You know, I feel I've lived quite a full life for 39 and this is just a,
00:27:25
Speaker
bumping the road you know it's a readjustment that I have to make you know and I'm kind of I'm getting there with it but you know I was diagnosed in the September and I was back on the road in December you know like I remember talking to you doctor about it and just how it was good to have something to focus on and you know the the band do it ocean colour scene guys and they were great with me you know that they kind of
00:27:53
Speaker
They never for one second made me think that I couldn't be there for the shows in that December, you know, and it was all, it was all very, do what you can, just be there, you know, and it was reassuring.
00:28:07
Speaker
Ray brings up a great point and what you want to do, and again, this is a very devastating diagnosis when you tell patients at first about this. Patients need support. They really do, and they need family, they need friends, they need some kind of support, and maybe not necessarily a therapist of any kind, but I find that family and friends can be very, very supportive
00:28:37
Speaker
and very helpful in making this disease. I always encourage my patients to bring somebody with them when they come to see me. So everybody kind of knows what's going on. And in the old adage, you know, sometimes friends are God's apology for family. And I truly believe that. That's a good way to kind of look at things.
00:29:05
Speaker
I've been lucky with my wife. She's been amazing through all of this. She kind of deals with all of the appointments and points me to the places I need to be on the days and times I'm meant to be there because there's been so much information and even just where
00:29:27
Speaker
you know, the treatment path that I decided on. I had a few options, you know, and obviously I have to speak to yourself. I settled on Qasimta, which is a monthly injection, rather than taking a daily dose of tablets, which are quite strong and you need to really up your, you know, your eating and stuff. It doesn't really suit my lifestyle. So, you know, just things like that.
00:29:53
Speaker
I've been lucky to have one or two really good friends to this, but nobody more than Leanne and my wife. Because it's hard for them too, right? You're changing in front of their eyes.
00:30:11
Speaker
You almost feel a bit guilty about it. You didn't pick it and you didn't want it to happen, obviously, but it's still probably wouldn't have got through it. The way we've been able to get through it without it, it's been massive. Personally, that's more important than any kind of
00:30:36
Speaker
therapy or anything like that I think you know it's just it keeps it in house and I kind of like that.
00:30:44
Speaker
So as far as I was going to say that family must be motivation for you too, right? So it's, it's motivating to, to keep, I guess, I don't know if it's the right term would be fighting, but just to continue, like they're like your purpose, right? So family, your, your wife, um, kids, you know, and, and I feel like music as well. So.
00:31:07
Speaker
That's kind of leading me up to the next question What are your thoughts mark on the use of music therapy and conditions like like MS?
Music Therapy and Treatment for MS
00:31:18
Speaker
Oh I think not the only in conditions of MS. I think music is is such a wonderful therapy it It is just a very beneficial for for people
00:31:36
Speaker
If they can play music, I think even better. I think the people who can play music at a high level have a great brain capacity and great brain reserve.
00:31:46
Speaker
But just listening to music, I think, is very beneficial for almost any patient, no matter what they're dealing with, whether it's MS or after a stroke or a heart attack or post-surgical. Music got me through my teenage years, let me put it that way. So it was very beneficial. So yeah, I think music is a wonderful avenue.
00:32:14
Speaker
How is your treatment nowadays, Ray? I mean, you mentioned once a month injection, is that what you said? Yeah, it's called Qasimta, although I think it's called something different in the States. I can't pronounce. I think it is. I can't say it. I don't know what the ingredient is. It's a funny word to say, but I take it on the third of every month. It's an injection into my thigh that I do myself.
00:32:44
Speaker
And you know, the worst side effect I've had off it is a headache for about 20 minutes. You take some paracetamol and you're fine. I'm getting quite good at it. I don't even bleed anymore. I don't know. From the options that I was presented with,
00:33:08
Speaker
it just seemed to be the kind of standout choice. I remember Dr. Yannicki saying to me all, you know, do what you do, you know, this has to work around your lifestyle and I think that it really does.
00:33:23
Speaker
I don't think about it until it comes time to do it again and unless they send me advance needles and they have to stay in the fridge and I maybe see them every day but usually it arrives two or three days before you take it and it goes straight into the fridge and then and that's it. I actually can't believe how straightforward it is and by everything that I've read it seems to be a bit of a
00:33:54
Speaker
a miracle thing if it agrees with you. So I'm kind of hoping that it's working. They gave me an MRI scan in April, and I got the results in May, and it wasn't like the kind of best news. They said there were several new lesions. And that's all they said in this letter. It was one, I couldn't even call it a paragraph. They said, further to your MRI scan, we can confirm there's several new lesions. But I thought, well,
00:34:23
Speaker
That's kind of worrying, what does that mean and what's the consequences of that? But I saw the neurologist maybe a week after the letter and she said to me that they can't really date these lesions as it could have happened
00:34:40
Speaker
between being diagnosed and me starting on Cassandra. So that was kind of reassuring because, as you can imagine, it was quite a stressful time really, you know, and my understanding of it is that the stress and stuff helps the lesions develop.
00:34:56
Speaker
it would make sense that there were maybe some new ones after the initial shock of the diagnosis. But they're going to, they basically just, again, sent me away, told me to come back next April. That was a baseline scan and that's what they're going to be comparing all future scans with. So I just need to, I don't feel like I've got any new symptoms, you know. So I'm just going about my life, you know, and kind of hoping
00:35:26
Speaker
Cause there's going to be keeping things on an even keel. So are you back then full fledged in the music career or are you basically doing what you want to do? Do you have to change your schedule of how you do things? Where are you at with music? I mean, I was back to, you know, pretty much just two months after the diagnosis, you know, I kind of forced myself back to it because I thought the longer, the longer I take away from it, the harder it's going to be to go back. And I felt,
00:35:55
Speaker
I felt it was improving. Even looking back on it, it didn't feel like it at the time, but I knew week by week my plane was coming back to me, which was such a relief. The only kind of changes I've had to make are, I need to go for a sleep in the afternoon most days, and even if it's only half an hour, 40 minutes, it just resets things a bit and it kind of, it's hard to describe what it feels like, but the closest I could tell you is that
00:36:26
Speaker
You know, sometimes you hit your elbow, your funny bone and you get that kind of horrible feeling shooting through. It's just like a constant version of that in your hands. And I sometimes feel if I've had a good sleep or, you know, even asleep in the afternoon, that it really diminishes, you know, like it kind of is noticeable for me anyway. I was taking some CBD oil at the start, you know, because I dread a lot of things about it taking the edge off symptoms, but
00:36:56
Speaker
At first, it maybe did help, but I don't know if I could say that for sure, or if it was just the time I'd started to recover a bit, which was making the difference for me, but I don't take it anymore. I'm more just, I'm quite happy sleeping. Go for a nap. Yeah.
00:37:22
Speaker
Ray brings up another key point that a lot of patients with MS will describe a lot of fatigue.
Lifestyle Adjustments for Managing MS
00:37:30
Speaker
Taking a nap in the middle of the afternoon is probably the best treatment for you, 30 minutes, 15 minutes even. Fatigue can be one of those things that we
00:37:42
Speaker
physicians kind of go by and make it very very small part of it but it is a large part of this disease in patients with multiple sclerosis. Do you know how long it takes for a lesion to develop? I can't say anything about it online where there's not so much a blueprint but I was interested in how quickly these things appear.
00:38:08
Speaker
What we probably know from MRI data is that they probably, when we give contrast and we see contrasted enhanced lesions, which are the active ones, it may take several months for them to go away. Some people think it's probably anywhere from three weeks to three months over the course of a lesion. So some of these lesions, as you know, go away and your doctor was correct.
00:38:37
Speaker
you probably had some of those lesions are seeing on this MRI scan even prior to starting treatment and we're almost before even started treatment predestined. Because we know this disease is ongoing it never really does truly remit in the sense of what's happening internally.
00:38:59
Speaker
So this first MRI scan generally is your baseline. It's everything that comes after this as far as the MRI scan is important as far as how your treatment is going. So yeah, I think you're on a good treatment and it has a good reputation for good efficacy and still very safe too.
00:39:22
Speaker
Now, Mark, it sounds like rest is a big one because of the symptoms of fatigue. Are there any other lifestyle changes that you recommend?
00:39:32
Speaker
Well, race hit on all of them. You know, you really don't want to, you want to kind of take care of your diet. I'm a big believer that vitamin D helps bolster your immune system, the good parts of your immune system. So I'm an advocate for taking at least 4,000 international units of vitamin D every day. If you're not in a sun drenched country. Oh, I forgot you're in Glasgow. There's lots of. Thanks for reminding me. Yes.
00:40:05
Speaker
But yeah, the number one thing Exercise diet getting rest, but the number one thing is if you're a smoker you got to quit it really affects smokers and with debility Debility much more than non smokers
00:40:26
Speaker
And see with regards to relapse and remitting, are these diagnosis quite secure? Can it go from relapse and remitting to progressive?
00:40:37
Speaker
Well, it can. It can go into what we call secondary progressive. And that's the whole notion of making the diagnosis as quickly as possible and getting started on treatment quickly as possible because what we want to do is preserve neurological function. And some people think there is a very
00:40:59
Speaker
Narrow window that we can do this maybe a year maybe a year and a half so Getting on something as quickly as possible and getting the diagnosis made as quickly as possible Is going to be the most beneficial thing as far as having a good outcome 10 15 20 30 years and I've got patients. I've got lots of patients ray who Started out with minimal disability and are 30 years down the road have changed very little so
00:41:30
Speaker
Yes, get on treatment if after a year you're noticing side effects or having problems with this. Like I said, we have newer medications that are out there that are available and there's certainly something else that they could switch you to if you needed that. That's good to know. How does the medication that Raymond's taking work? What is it doing to the body?
00:41:55
Speaker
Well, kind of going into, you know, they're all a little bit different. The whole notion is you have this immune system that is kind of sick in a certain way and it's attacking your nervous system. So in Ray's case, what they're trying to do with a part of his immune system is to kind of slow down the
00:42:20
Speaker
B lymphocytes. And by doing that, the B lymphocytes kind of act kind of as a conductor of the orchestra. So you have other portions of your immune system that the B lymphocytes kind of make their jobs or tell them to dictate what their job should be. So getting rid of the B lymphocytes gives Raymond the opportunity of growing new B lymphocytes that hopefully won't have that same
00:42:49
Speaker
characteristic of attacking your nervous system so that's that's the notion behind race specific treatment and a lot of those agents that are out there at least in the older ones kind of tempered the immune system they they reduce the amount of inflammation that the.
00:43:06
Speaker
the lymphocytes, the immune system would carry on. We're advancing more and more and we're trying to change the immune system almost totally, almost very close to doing stem cells and they have done research in doing stem cells in patients with
00:43:25
Speaker
relapsing multiple sclerosis with very good success the whole notion is getting rid of the rebooting your immune system getting rid of the the stuff that the immune system that's not working and replacing it with an immune system that is healthy and no longer targets your nervous system so that's kind of what what raise medication is doing to a certain extent.
00:43:50
Speaker
It makes a lot of sense why fatigue occurs and why stress affects you. That makes a lot of sense.
00:43:58
Speaker
It does. It was the one thing I remember. There's so much information at the time when they're giving you the diagnosis. But I remember the neurologist saying to me, you're probably going to want to have a sleep, a nap during the day. And I've never done that before. So I thought, nah, I don't think that will be me. But now, like clockwork,
00:44:24
Speaker
This is right in the middle when I would be sleeping, actually. No, I'm kidding you on. Sorry. No, I'm kidding you. This is far more interesting. But like I said, it's become a little just another readjustment I've had to make. I'm quite happy to go in and lie down for even half an hour, close your eyes, even not fully asleep, just resting, resetting.
00:44:48
Speaker
But I really noticed the benefits of doing that, especially when I'm touring with the band, because it's a funny day, everything's gearing up towards the evening, but during the day you've got the sound check and then you eat at different times when you're on the road and stuff. So it's just a readjustment is the word I would keep coming back to in all of this.
00:45:18
Speaker
Yeah, I mean sleep's also just so important too, you know, aside from, you know, working with the condition of MS, but I think just taking that afternoon nap, even if it's 30 minutes, 40 minutes, it'll help kind of spike energy up for any performance that's taking, just, you know, that you're taking part in after, in the afternoon. So that's, yeah, definitely.
00:45:44
Speaker
And I think as well that I told people quite soon. I didn't want it to be almost like a stigma or something. I wanted to let people know. I don't really know why. It just felt important to me to make it a kind of public thing. I put it on my Instagram, just a post. It just felt important for it to be
00:46:14
Speaker
knowing that this is happening and it's not going to stop me from from playing in the band and playing music and you know I've had a lot of messages from people that they saw that and that they've maybe been having their own problems and stuff and it's kind of you know they see the band a certain way they see you know that you're able to get up and play and you know it felt important to
00:46:42
Speaker
Just for people to know that it's not going to defend me yet. I just wanted it to be a thing that people knew about me.
00:46:54
Speaker
know, if it kind of helps people come to terms with whatever they're dealing with, then that's a positive thing. I always tried to do that when I sold the duck, when I stopped drinking and I was always really open about it, you know, if anyone needed to, just even a kind of impartial ear, someone to talk to, but things, my messages are always open for that kind of thing, you know, because like you say, you know, not everyone's as lucky as me to have
00:47:20
Speaker
an amazing wife and everything else and someone to talk to. And I think it's important to help people where you can. I mean, it was a chance conversation with our mutual friend, Alex, that led me to speaking to you, Doctor, and that was such a big help at the time. It was reassurance when I needed it the most. So I really think that's important for people.
00:47:46
Speaker
That's part of the issue of the music industry. The culture always seems to have
Impactful Meeting with Holocaust Survivor Eva Kor
00:47:52
Speaker
this example of living life as crazy as possible and living out loud and live fast, die young, leave a beautiful corpse and the show must go on and all that type of stuff. It seems like
00:48:04
Speaker
Have you seen a like in the last twenty five years and you start playing to now a sort of change in the awareness of. I'm a musician musicians taking care of themselves or is a little more understanding of that because like a person like you being so brave and thoughtful enough to share your story i think that be very helpful.
00:48:23
Speaker
I just find that there's a lot of mythology around music, you know, and guys like Keith Richards and, you know, that kind of thing. There's a reason there's only one of them, you know, because he's a kind of anomaly, isn't he? Do you know what I mean? He's one of my all-time heroes and I love him. I love the bones of the guy, but it's not kind of
00:48:50
Speaker
True of the musicians that I've encountered. I find that a lot of people look after themselves. Certainly in the band that I play with, in the 90s they were through a big, big band.
00:49:07
Speaker
everywhere all the time and you know probably they would be the first guys to tell you that they enjoyed all the trappings of being in a big rock and roll band but you can't sustain it after a certain age. I mean they're a bit older than me. I mean I'm going to be 40 and sooner than I like to admit but they're all kind of in their 50s and you know it's definitely not
00:49:35
Speaker
It's not like the Jolly Roger or anything when you're away. Everyone's kind of in bed. I don't know. Very, very few people can sustain that kind of lifestyle. I think music is different now. The music business is
00:49:55
Speaker
unrecognizable even from the 90s now with the whole the streaming and all that kind of thing and I think that's a lot to do with so many bands make the living on the road rather than from record sales and all that kind of thing you've just got to be
00:50:13
Speaker
Healthies may be an exaggeration, but you've got to function. You've got to be able to do it every night, so you can't very, very few people like I say can do it, you know, if they've got a habit or anything like that. Well, this has been amazing to talk about because one of the things I realized, so Ray, you know Alex, Dr. Alex Korr, the podiatrist, how did you guys hook up? How did you and Alex meet?
00:50:44
Speaker
Well, this is probably a podcast of its own really, but I knew, well, the long story short version is that I went to Auschwitz in 2015 and it was a kind of, it was a life changer for me, you know, like I don't mind saying that to you, it really
00:51:07
Speaker
just altered me as a human being and changed the way I saw the world and I had written some music as a bit of a reaction to having visited the place and I had this idea to it would be
00:51:23
Speaker
quite powerful to have a survivor read a spoken word part in one of the songs and I read a book by Eva Kor who was Alex's mum and I emailed her just kind of specialatively you know just never thought I'd hear back from her but as I now know Eva being Eva she replied in about five minutes just saying oh yes yes I would like to do that how are we going to do this and I said well I can send you the
00:51:53
Speaker
the poem and you can you can recite it she said nah nah why don't we why don't we go to Auschwitz again together and I'll I'll read it where the last place where I saw my family before they were they were killed in the gas chamber and I just thought wow this is this is this is becoming something something very very special you know and then so
00:52:16
Speaker
Someone, a friend of a friend told someone else, and they called me to ask if they could film this happening. They wanted to make a kind of documentary about it. And at first I thought, nah, you know, it's not really about that, but I thought just even for posterity to have it to look back on, it might be a nice thing to record.
00:52:35
Speaker
So we went to Auschwitz and I met Eva and we just became the best of friends. It was the maddest thing. She was 50 years older than me, but we had conversations like we were having just now. It wasn't what people thought it was, even like a grandparent, grandchild type arrangement. It wasn't like that.
00:52:59
Speaker
We talk about music and we just talk about life and we became really close right up until our death in 2019 and I was really honored when Alex asked me to sing at our funeral, you know, so I went over to Terre Haute and it was, like I say, it was my great honor to be able to do that. But in between times, I mean, I brought her to Glasgow for an event and
00:53:28
Speaker
You know, she was just full of life even at that age, you know, 84, 85 years old. Never off a plane every time I spoke to her. She was in an airport and one of, you know, talking about getting a lot of sleep. I'm not sure the MS, I'm not sure the MS would have worked out with Eva because she paid no attention to the time difference. So she'd just go, mate, 4 a.m. and you sound very tired, I'm saying, Eva, it's half past three in the morning. Oh, well.
00:53:58
Speaker
What's been happening? You're a really misser, but I'm really fortunate to be in touch with Alex very regularly and there's a whole...
00:54:11
Speaker
whole other group of friends that I've got over there in Indiana, you know, even Governor Holcomb and stuff like that, you know, I've got to know him through all of this and it's just, it's been, you know, I can't, I can't tell you how special it's all been to the point of that, you know, I've been back to Auschwitz a further 11 or 12 times and, you know, it's now
00:54:35
Speaker
I'm learning the Polish language to hopefully one day become a guide there and maybe move there and try to play my part and remember even in all the other victims because it really moved me. I'm not a religious person in any sense but it was
00:54:55
Speaker
I don't know if any of you have been there, but it's devastating. It's life changing. The effect that's had on me is huge. That whole situation led you to Eva, which led you to Alex, which led you to Dr. Mark.
00:55:14
Speaker
when you needed him, when you had this diagnosis, which led you to hear.
Conclusion and Listener Reminder
00:55:18
Speaker
And now we have our whole network of athletes in the arts people and 20 different organizations that are going to hear your story and, and open up a whole nother frontier possibly for you. It's funny how life works, you know, it's, it's, it was a, I had, I don't know why, but I just, Alex was one of the first people I told, you know, what had happened and he's quite,
00:55:43
Speaker
To the point, Alex, you know, like he's kind of matter of fact and okay. Right. Okay. I know a guy. Don't worry about it. Yep. The secretary's going to be in touch. Yeah. Listen, don't worry. Have you heard from him yet? No, no. Okay. I'll come back to you. And he was brilliant. He set the whole thing up. And like I say, it was getting to speak to the doctor was reassurance when I, and he did it the most, you know, you get news like that and then
00:56:12
Speaker
It's nobody's fault, but the backlog after COVID and the pandemic and stuff, it was going to be months and months before I got to speak to someone who knew the ins and outs of what this was going to be. And I think you guys, Americans in general, are just so much more upbeat and positive than us. I don't know. I tend to see the
00:56:41
Speaker
the glass half empty, you know, and you're kind of the opposite. So it was, it was really encouraging. Even some of what you've said today is good to, it's good to hear, you know, that it's not, it's not the death sentence that it used to be, you know, and I'm grateful for that.
00:56:59
Speaker
Well, we are close to the end of this episode. And before we end, I just wanted to ask Mark as well. Mark, where can people go for more resources when it comes to MS? Well, here in the United States, the MS Society is probably the number one place you can go.
00:57:25
Speaker
I would probably avoid Dr. Google as much as possible, but the MS Society and the MS Association, both of them have lots of information on lifestyles, on things you can do simply for yourself, on upcoming treatments, things that are coming out around the corner.
00:57:48
Speaker
Yeah, those are probably the number, the top two that I would go to. Yeah. And, you know, you both shared a lot of recommendations for MS Management. And I do want listeners to know that if they have been diagnosed, to make sure that they're reaching out to their, their care team, too, about what's the right
00:58:06
Speaker
you know, form of care for them and the right treatment that's appropriate for them. So I do want to make that really clear. But you know, Raymond, thank you so much for sharing your journey with us and just what you've gone through the past year and what you look forward to.
00:58:26
Speaker
in the future, we're excited to see what this journey holds for you and, and all the amazing things that you are going to be accomplishing. No doubt about it. And I, and I know, Steve, we're just very excited to share your story with those who are listening to know that
00:58:42
Speaker
with music too, you can continue doing the things that you love. And it just takes a few adjustments and working with the right care team and being surrounded by those who you love and give you the support that you need. So thank you so much for sharing all of that with us. My pleasure. Thanks for thinking of me.
00:59:10
Speaker
I was apprehensive. I wasn't sure how I would feel talking about it, but it's actually, it's been really nice. Really nice. So thanks. Thanks for your time. Yeah. Raymond is, you know, I've only had one encounter besides this one with Raymond. He's a tremendous advocate for this disease and he needs to get out there and speak more and more. He is just, he is the
00:59:34
Speaker
You know, what Socrates once said, the unexamined life is not worth living. And Raymond is truly, has examined his life. Great, great advocate for this condition. You go get them, buddy. Thanks. And Mark, thank you for your time and for sharing the work that you do and providing the recommendations that you do provide to your patients. Keep making patients smiling. And we love hearing about the work that you do and hope to have you on in future podcasts.
01:00:04
Speaker
Thank you. Thank you very much. And enjoy that Air National practice you have now. I will. I will. All right, guys. Thank you so much for being here today. We'll talk to you soon. Thanks. Bye. Take care. And that'll do it for this episode. Remember, if you'd like what you hear, please leave a review and click subscribe so you can get our episodes sent to you every month. Priyasi Ansari, this is Stephen Karaginas, and this has been the Athletes in the Arts podcast.