In this episode of Living Well with MS, Dr Jonathan White, Overcoming MS Medical Advisor who is living well with MS, welcomes Dr Jonny Acheson as our guest. Jonny Acheson is a physician who lives with Parkinson’s Disease. They chat about Dr Acheson’s diagnosis, the similarities between MS and Parkinson’s and the importance of healthy lifestyle to manage symptoms for neurological conditions.
Overcoming MS 00:01
Welcome to Living well with MS. This podcast comes to you from Overcoming MS. The world's leading multiple sclerosis healthy lifestyle charity, which helps people live a full and healthy life through the Overcoming MS program. We interview a range of experts and people with multiple sclerosis. Please remember, all opinions expressed are their own. Receive monthly tips and ideas about living well with MS by signing up for our newsletter at overcomingms.org/newsletter. This episode features Overcoming MS medical advisor and facilitator Dr. Johnny White. Speaking with Dr. Johnny Acheson, an emergency medicine doctor who lives with Parkinson's disease. The conversation includes their experiences as physicians managing chronic health conditions.
Dr. Jonathan White 00:51
Johnny Acheson welcome very warmly to the Living with MS. Podcast Living Well with MS podcast in fact, and thank you so much for agreeing to do it. We're having to freelance this an ad hoc a little bit because our normal recording stuff hasn't quite worked out. But hopefully we can have a really interesting, engaging conversation where we explore a little bit about the similarities and the differences in our two various chronic neurological conditions. So welcome. Thank you for being here.
Dr. Jonny Acheson 01:19
Thanks. Thanks very much, John. It's so it's nice to record this with somebody else called jolly, who's who's a doctor who also has from Northern Ireland who is living with a long term neurological conditions. So
Dr. Jonathan White 01:36
What are the odds of that?
Dr. Jonny Acheson 01:39
Very slim, very slim.
Dr. Jonathan White 01:42
When I when I first saw you on Twitter probably about a year ago, and all the work you were doing actually in sort of the time critical medications, and then through your art actually. I just thought I've got to reach out to this guy. There's way too many similarities. And I think probably the first thing we should do is get the inevitable, one degree of separation in Northern Ireland thing out of the way. So you know, they always say, Oh, where do you come from? But actually, anybody from Northern Ireland will know it's, what school did you go to? And then if you do that, you'll know everybody in Northern Ireland. So Johnny, where are you from? And what school did you go to?
Dr. Jonny Acheson 02:11
So I'm Banbridge and I went to Banbridge Academy.
Dr. Jonathan White 02:16
Amazing. I know, lots of people from Banbridge Academy from Banbridge, and Dromore, but we'll not go down that line, because it will be very interesting for us and boring for everybody else. But I'm very familiar with the beautiful part County Down. Okay, fantastic. Yeah, I'm from Belfast. I went to Campbell College. So yeah, I'll just say before you do the cream of Ulster rich and thick and all that sort of stuff is just park that so you don't get that one on me. So, Johnny, I thought what we might do, obviously, we've got a fair bit in common, personally and professionally. Maybe you could start by just giving us a bit of an introduction about about yourself, your background, your personal background and what you do for a living.
Dr. Jonny Acheson 03:02
Yeah, so. So I'm Jonny Acheson. I'm actually an A&E consultant, working in Leicester, went to Queen's University in Belfast graduated in 1999. And then I did various jobs in Northern Ireland, got married to Heather, back in 2000. And then, with my training, it was very difficult to get a number of back in those days in emergency medicine, because there was only one or two came up a year and as many people did, back then we we looked elsewhere, I took a lab job and last year for a year because my brother lived in Lincolnshire, he was working in public health at the time, and I didn't want to commit to coming across for five years. So I was successful at that interview went back home again that interview again for the third time in Northern Ireland. I got my number in Leister and then did my training and obviously kids, kids were born over here. They're now 17 and 13. And, you know, we're well settled. As far as a diagnosis when I was actually diagnosed with Parkinson's disease back in 2006, when I was 41 years of age, and obviously, that was a huge shock. Time when the kids were 10 and six, my career was just literally taken off as such. And that was just the biggest curveball I've ever been dealt in my life. And I know you're similar in your in your situation.
Dr. Jonathan White 04:46
Yeah. Yeah. I mean, it's, it's hard to know, there's so much to unpack in that. But I suppose the first thing just to give context or to our listeners would be that there's a whole generation of doctors in the UK in sort of the early to mid 2000s, who were a don't use the word victim, but certainly had to survive under the new MTA system, which basically meant that the actual training jobs with career progression were could be very, very difficult to find. And there's 1000s of doctors that have left the UK and never came back and went to Australia, New Zealand and elsewhere. And others like yourself, Johnny, who maybe didn't plan to have to move around the UK to get their training number. But did so it's it's great to hear that you've flourished outside of Northern Ireland think a lot of people in Northern Ireland forget that there's a world outside of it. And that's another topic for another day. But yeah, so just with regards to your Parkinson's diagnosis did that is that something that came completely out of the blue. Is it something that had been sort of there in the background for months or years beforehand? Or what was it that sort of initially brought you to that first consultation?
Dr. Jonny Acheson 05:51
I mean, to be honest, it was out of the blue, but I knew something was wrong. So it was about six months before my in laws would come over to visit, visit us and Leister and they hadn't seen me for about four or five months. And they sort of said to my wife, there's something wrong with him. He's not really himself. He's a bit withdrawn. No, they couldn't really put the finger on it. And you know, they didn't really say anything to me, but it was really after Christmas in 2016, I noticed that I was getting very tired. So I would fall asleep when I came home from work in the evenings before my kids were in bed. I would fall asleep sometimes literally put my head on the table like this will work just to you know, just arrest. I remember vividly, you know, going to my kids' swimming gala is where there's hundreds of screaming children and I would just lie and sleep on a Saturday night. And even in Leicester City Football Club, where we go and watch Leister City the year they won the Premier League in 32,000 people singing, Jamie Vardy's Having a Party, and I'm sort of sitting like this fast asleep. So fatigue was there. I also noticed that when I was walking, when I was, especially when I was tired, I would scuff my foot, and I would go forward as if it hit the curb. And then I'd look around and it was flat. And but that didn't bother me so much. And then I was typing in the last year medical school one day because in charge of organizing finals, and I noticed the slightest flicker in the left hand one of my fingers. And I thought, "What's this?" but the big thing that got me down to the GP was a collegue said, I've just been to Bollywood dancing class with my daughter. So obviously, Leister is a very ethnic setting a lot of lot of culture. So they go on to do some Bollywood dancing. So he said, Let's all stand up and do the sort of change the light bulb dance like this, when I realized at that moment that I couldn't rotate my left wrist very quickly. And that was really interesting, because I'm right handed. So I don't use my left wrist to do anything, change the light bulb, you know, screwdriver, etc. So I realized that I didn't know at the time that that was bradykinesia, even though had been to medical school for five years, I didn't actually recognize that I had bradykinesia. I just knew that my wrist didn't rotate quickly enough, no matter what my brain was telling my hand to do. So went down to my GP quite quickly. She was excellent. She took about 45 minutes. She referred me to the neurologist the next day. And then he took the history exam on me, he got me to walk across the clinic floor. So for all medics that listen to this, you know, I assess people's gait all the time, always want to do what felt like yourself, you know, actually, somebody assess your gait. And then I try not to scuff my foot. So I was walking across the clinic concentrating really hard. I sat down and he said, "You're not swinging your left arm very much." And I hadn't noticed, you know, my wife had noticed nobody noticed. But why? Why would you notice? So that's basically how I got into the neurologists clinic.
Dr. Jonathan White 09:14
So it's interesting that that journey once you sort of realized that you needed help, and you went to your GP. It sounds like it was quite quick. So GP to neuro office didn't take very long and that there's similarities there for me. And I'm wondering, then when you were told, listen, Jonny, "I think you probably have Parkinson's." Was that done in a way that you would either want for your patients or your family members? Was it done any differently because of the fact that you're a doctor? What are your thoughts around that one?
Dr. Jonny Acheson 09:45
Well, I think it's very difficult. I think it's difficult for any doctor who is treating another professional. So I think that puts them in, potentially in a different situation. And maybe they do things differently to somebody who's not medically trained. The neurologist, it was interesting. After he examined me and he knew what the diagnosis was, he leaned across my wife or tossed. And he said, Jonny, you need a DaT scan. Now, I've been in medical school at Queen's, great university, great teaching. But I don't ever remember anybody mentioned what DaT scan was. So I didn't know what that was. I don't know if, obviously, if you'd heard about that, that scan in your training. I didn't know. But my wife, she was an ST for in psychiatry at the time. And she obviously ordered DaT scans in her clinics to determine whether somebody had Lewy body dementia or not. And she then knew what the diagnosis was sitting three feet beside me. And she leaned across a neurologist and said, he doesn't know what that is. So he sort of rolled back slightly, and then said, Jonny, I'm really sorry to tell you but you've got Idiopathic Parkinson's disease. And to be honest, it was literally like somebody pressed the pause button, because I was totally blindsided. I didn't even think that was possible. That wasn't even on my list. I thought I had multiple sclerosis. I thought I had Motor Neurone Disease, I thought I had I had a brain tumor. So for him to say those words. It was really quite, you know, it was life changing news, but I think he was quite sensible. So he he said certain things like, I think you need to take some time off work to get your head around this. He said, "Take four weeks off," I think he was wise and doing that. Because I was so blindsided and needed time to sort of try to get my head around it. Now you don't get your head around it in four weeks, but at least you start to educate yourself about it and start something started to make sense. But I think he said things like, "you know, this is a progressive neurological condition that will progress slowly." He said, "You know, there, there is no cure, but there are medications that we can prescribe that will mask the symptoms, but will help the movement." And he talked about exercise, and the importance of exercise, the importance of high intensity exercise. He talked about diet, and he talked about reducing stress. And I said, I think I think, you know, I think it's really important how that news is given because that has a very big impact into how the patient perceives the condition on what that what the outlook might be. And I think neurologists have to although it's life changing, and you know, you're on a different path. Now, I do think there needs to be a degree of hope given to patients, and also that they in a sense are in control of their disease, you know, themselves. They need to really learn that they can do things in life that will help them help them. It's not going to stop them having a Parkinson's or multiple sclerosis. But there are certain things that can be done that will may may help people to live better every day.
Dr. Jonathan White 13:28
Just I couldn't agree more Johnny, I think that's just such an important message. And it's wonderful to hear another UK based doctor living with a chronic neurologic condition saying just you need to hear this message you need to listen to us to say, you know, I'm sort of thinking as you were talking there, there's an amazing book by neurologists called Jules Montague called Imaginary Patient, about the people behind these diagnoses. And people think, oh, that person in Bed 4 has Parkinson's, one and bed three is Motor Neuron Disease and we often forget the person as you were saying to me there, but you know how your consultant and actually scientists are quite empathetic and really nice way they were obviously so worried about insulting your medical intelligence, you know, that they sort of reverse sugarcoated if that makes sense. You know, that sort of your warning shot we also warning shots in medicine, we're going to give bad news, your warning shot was something you were never going to understand because you're not a neurologist. Yeah, it's fascinating, you know, and, and I can really, you know, this isn't about my story, but I can really, you know, that really connects with me and mine sitting in the neurologists office being told there's two more lesions in that scan, you know, as if we're talking about a third person and it's not a third person. It's, you know, it's me, it's a guy who's about to get married and his fiancee's sitting there with him and he's got his whole life ahead of him and like you that is a punch right in the gut. Which which we reel from and the wonderful thing there is that you were told to take some time off I think because a doctor's on treadmills and with targets to meet and hoops to jump, we never, we're terrible at that. So at It's wonderful. Did you take the four weeks off?
Dr. Jonny Acheson 15:02
I did. Yeah, I did. Four weeks off. I never had that amount of time off before, you know, since it since I graduated. And what I did was I found there was a cyclist in America called Davis Phinney. So Davis Phinney was an Olympic cyclist, and he was in the Tour de France. And he was diagnosed with Parkinson's as a 41. That was the only similarity really between us: our age, and the fact that we both had Parkinson's or I cycle a bit, but I'm not obviously on an Olympic or Tour de France. But he produced a book called Every Victory Counts. And it was all around, you know, it was a really fantastic resource, 300 pages, it's quite long. But I just read that from cover to cover. And a lot of things started to make sense. Symptoms that I had that I didn't realize were due to Parkinson's to a loss of smell, and wife would come down and go can you not smell toast burning? And can you see that the you left the gas on? You know, it's like, I can't smell. And when I was running, sort of in the mornings, it would get pain in my right knee. And I realized there was overcompensating because it wasn't working properly. It wasn't running properly. I was putting more pressure on my right knee. So that was interesting. And then all the sort of motor symptoms so the invisible symptoms that you don't see, you know, the anxiety that the apathy, the problem sleeping, you know, all that stuff that that is very difficult for people to understand because it because they don't, because they don't see it. So the four weeks really, really helped me and think it taught me two things. One, this disease wasn't going to kill me. Well, not directly anyway. And secondly, that high intensity exercise of two and a half hours a week, may slow progression, but it'll certainly help you feel better and reduce your symptoms, though. So that was a was a very useful, it was a very wise thing to say, I think.
Dr. Jonathan White 17:14
And it sounds like a bit bit like me maybe another similarity, you went on a quest for knowledge and for answers. And it's amazing to hear that you found it and for me, it was very, very much the same. It was George Jelinek's work and Overcoming MS. You know, in fact, he's more like you than me, he was diagnosed at 41, he was an emergency medicine physician, but at a time when there was very little positivity about MS. He put together all these relatively simple things that I could do. And that was life changing. It was there, the light in the darkness, the little granule of hope that you could grab onto and hopefully, you know, tend and grow. And yeah, it's it's funny to hear that from your side as well. He wasn't an elite cyclist either. No, it wasn't and neither am I, by the way. Although I do like it, Jonny, just for the benefit of our listeners. And it's probably worth maybe it's okay, just taking one minute and explaining what Parkinson's disease is, you know, we're used to we're all very clued up in the world of MS. But we forget that there are many other neurologic conditions around one of which is Parkinson's. And that's also very common. So rather than me hashing out what I think it is, perhaps you could tell us,
Dr. Jonny Acheson 18:27
So Parkinson's, I mean, I didn't, I knew I knew sort of from medical school, what it looked like. So Parkinson's is a is a neuro progressive neurological condition for which there's no cure, it's caused by a lack of dopamine in the brain because the brain cells was in the substantia nigra that produce it have died. And by the time by the time you're diagnosed, they say potentially up to 70% of your of your neurons have died in your substantia nigra and that's when your motor symptoms start to present. So there's not a lot of wiggle room. Most commonly the only symptom that everybody with Parkinson's has is Bradykinesia. So everybody's got Bradykinesia here. Interesting. 20% of people with Parkinson's don't have a tremor. And that's important for sort of, you know, primary care doctors to realize because I think the people that present without a tremor, maybe take longer to get diagnosed. And then obviously you've got rigidity, as well, and stiffness. And then obviously, there's a whole range of non-motor symptoms. But the thing about Parkinson's I'm not sure if this is the same with multiple sclerosis, but there's over 40 symptoms. Everybody is different. So there's a phrase that says, "We're all the same but different" we're all labeled as Parkinson's disease, but there are there are subtypes and I think what will happen in the future As, as the research comes on, you'll have type one, type two, type three potentially it will be Parkinson's diseases. And, you know, I think as research goes on that that will come out in the mix.
Dr. Jonathan White 20:19
That's fascinating that that is exactly the same as multiple sclerosis. Actually, there's a huge catalogue of symptoms, no two people with it will ever be the same. There are hallmarks and everybody thinks that people with MS. But actually for lots of people that isn't there a big problem, you know, a lot of people will talk about gait disturbance and MS as well. But for a lot of us, our symptoms maybe completely invisible. I suppose maybe the one difference is, and maybe I'm wrong. And this most people with MS are diagnosed between around the ages of 20 and 40. It's maybe slightly later Johnny in Parkinson's disease normally, is that is that right?
Dr. Jonny Acheson 20:51
Yeah, that's right. I thought that's why I thought I had multiple sclerosis because I was only 41. And I know it's more common in women where Parkinson's is more common in men. But yeah, Parkinson's, usually, anybody diagnosed under the age of 50 is known as early onset Parkinson's, the vast majority of people with Parkinson's are diagnosed, you know, older than that. So as your age increases, the incidence increases, as well.
Dr. Jonathan White 21:20
And the mainstay of Parkinson's disease therapies. If I understand this correctly, it's not that it's really modifying the disease course it's treating the symptoms that generally the motor symptoms caused by the condition. So what does that look like for the average person, you know, is that everybody with Parkinson's ends up taking Levodopa? Or how's it work?
Dr. Jonny Acheson 21:43
So when I was first diagnosed, I was just started on Rasagiline, which is an MAO-B inhibitor. Because, you know, it wasn't that my symptoms weren't affecting mobility as such, or daily activities. But it was one day I was walking up the corridor, and the nurse said to me, "why are you limping? Why are you dragging your foot?" And I was like, right, okay, well, obviously, this is a bit obvious. So I started on the Levodopa 18 months after was diagnosed. But you're right. You know, there's no disease modifying drugs that will slow the condition down, the medications just mask the symptoms. So Levodopa was introduced in 1961. And it is probably the most widely used drug. The difficulty with Parkinson's is, you know, as the disease progresses, new medications are not as effective. So, you know, the drugs I was taking at the start, which would last six hours. Now, that dose only lasts three, so within seven years I'm going from six hours to three hours. And that brings in the concept of wearing off your medication. So you sort of wait for half an hour before the next dose will wear off. So I can wear off motor and wear off no motor. So my arm could be just like hanging down by my side, not really moving. When I'm walking, I feel as if my left legs like a ton weight it feels like lead, otherwise my brain slows down, I get a bit sort of slower decision making, I can get quite anxious. I think my brain tries to compensate by that but I actually start to talk more quickly. So it's a weird concern. Obviously, being from Northern Ireland, whenever you speak to somebody from Northern Ireland, you naturally speak more quickly. Because whatever you're trying to speak nobody understands what you're saying. So apologies. On the podcast, I'll try and slow it down.
Dr. Jonathan White 23:58
At least we'll understand each other.
Dr. Jonny Acheson 24:04
Exactly. That's it. So yeah. I think the thing about Medicaid is trying to find a balance. Obviously, side effects, you know, are important. Dopamine agonists are effective drugs, they basically stimulate the neurons that you've got to produce more dopamine. The difficulty with that is you will get dopamine in areas of the brain where you've got enough so you can cause impulse control problems. So people might eat a lot. People might shop a lot, new gambeling you know, be careful with that, hypersexuality you know, it's important that you look out for those things. And neurologists are very good at counseling people with that and their care partners as well. So it's really just trying to find the balance of what works for you as the individual
Dr. Jonathan White 25:01
I'm interested that your, your neurologist right at the start said lifestyle potentially is an important part of this. And I know for you exercise has become a really important part of how you manage your Parkinson's. But my understanding is actually the evidence in Parkinson's and the rule of exercise is really strong and getting stronger all the time. In fact, I saw a news article just last night about a guy Scott from Northern Ireland with Parkinson's, who is using exercise and really helping to manage his condition. Can you maybe tell us a little bit about that side of things?
Dr. Jonny Acheson 25:32
Yeah. So they think that high intensity exercise, two and a half hours a week, may slow progression of the disease. So it's like anything in medicine, you know, until you get the evidence, you can't say for certain, but I'm pretty covinced. I mean, I think if I hadn't been exercising, I've tried to exercise two and a half hours a week since I've been diagnosed over the past seven years, and I've never really gone over two and a half hours, and usually about half an hour, maybe five days a week, or I might do an hour one day and then split it up. But, you know, I feel so much better on the days that I do that. You know, there's been a study from from, from Holland that looked, I think they did MRIs on some patients, and then with Parkinson's, and then they put them on an exercise bike, I think for six months. And then they did the repeat MRI scans. And I think it potentially showed that there was neuroplasticity, happening, while people were exercising. I mean, the thing that convinced me was, again, in the Davis Phinney Foundation, there's a story about a neurologist who went on holiday with his friend who had Parkinson's. And it was a cycle holding. And obviously, the personal Parkinson's was a bit pensive about cycling themselves. So they decided to get on a tandem bike, and the neurologist was the front and the person with Parkinson's on the back. And obviously, the neurologist set their are the RPMs. And the after about five days of the cycle holiday with the person Parkinson is going on at a higher rate, they find that their handwriting was much better. And that just struck me as you know, struck me as like quite an amazing study, you know, you're never going to be able to repeat that. And just because just because the evidence isn't there doesn't necessarily mean It doesn't help. I'm not programming on BBC News is an example of that, you know, Scott Hanley knew he was a guy who, who realized exercise could help it and he got training and he lost some weight. And he's basically managed to take a bit of control back to managing this condition. And, you know, it's very important, I think the difficulty is that, you know, the general population have difficulty exercising, have difficulty motivating themselves to exercise, I think if you're living with a long term neurological condition, it's so important, but it's trying to keep the motivation that is really, really quite the challenge. And I think it's about finding something that you enjoy doing. It's finding some that you'll stick at, it's something that you know, that it's easy, and accessible. The difficulty with Parkinson's is the vast majority of people, a lot of people are diagnosed in their 70s. Whereas with multiple sclerosis, you've got a much younger population. And you guys are probably more motivated, potentially to exercise or potentially find it easier to exercise and people who are diagnosed with Parkinson's at an older age, but there are exercises that can be done.
Dr. Jonathan White 28:49
What you're saying two and a half hours a week is actually the guidance in the general population anyway that's nothing above and beyond. That's what we should all be aiming for. And I suppose motivation is absolutely right. I really struggle with that myself. And there's the sort of just turn attitude now you know, I'll try and do a lot of sort of bodyweight exercise and things that I do at home easily to stick on the the shorts and the t shirt and go for it and actually, as you say, every time you do it, no matter if it's a home rubbish you feel before you start if you're feet are absolutely killing you that day. The one thing you can guarantee is that you will feel better at the end of it and probably the day after so I just couldn't agree more and what you're touching on with regards to sort of self activation and that sense of autonomy, control mastery. I just think it doesn't matter what your condition is that is just absolutely vital to living well with it. And it sounds to me Jonny that that's what you're doing. How has work, changed for you since your diagnosis? Have your colleagues been supportive? You were obviously your frontline NHS worker. Now you're, you know, emergency medicine we all knew in the UK is getting absolutely hammered. How's that been?
Dr. Jonny Acheson 30:11
So my Trust, I have to say I've been very, very supportive. So for example, when I was first diagnosed, I was finding it really difficult to multitask. And it was one of the non motor symptoms, it was difficult like making rapid decisions, and making quick decisions and a lot of decisions. A lot of the shift I was fine, it was knackering me. So they took me off on call rota quite quickly, and was basically put on a Monday to Friday, fixed pattern eight to six, stuff still work one weekend in four on a Saturday morning. And that really helped because it gave me organization, it gave me planning, I knew what I was doing. But about three years after I was diagnosis at a took another three months off work because it was just too much I was still working in the Main Department. And at that stage, they decided that I would move to the observation unit, which is the EDU emergency decisions unit. So people are admitted in there who have been seen, but they need a period of observation. So we've got various pathway. So we'll get anaphylaxis patients and head injury patients, we get alcohol, a lot of mental health, we'll get sort of waiting results pathways will get abdominal pains that we're not sure what's what. we'll get alcoholics parsing all overdoses who need treatment, etc, etc. So, in a sense, you know, all that training for 20 odd years, suddenly was confined to this really, really niche part of Emergency Medicine, I sort of felt slightly short changed in the sense that, you know, I wasn't able to use my resuscitation skills, but I'm still able to use, I'm still able to use my training because there's the odd time you pick things up that somebody's missed. So, you know, last week, it was somebody who was sent around on a renal colic pathway, but the pain wasn't in their loin, it was actually in their lower chest and they had a pulmonary embolism. There was somebody a few months ago that was sent around with acute urinary retention and actually on the acute urniary retentive pathway, but they ended up having a an abscess and epidural abscess. So it's things like that you can still use your skills. And I think the important thing to say is, you know, if you get diagnosed with a chronic neurological condition or or any condition you don't need to make a decision about work immediately. You know, I think a lot of people worry about the future and what will happen. And I did exactly the same, but you know, where I am seven years down the line. You know, I think those choices were right. And I think the Trust has helped me adapt with with good, reasonable adjustments. And I think I'm working as hard as as I ever have them as busy as ever have been. But I just need to pace myself and not use up all that dopamine, you know, in one go over the course of the day.
Dr. Jonathan White 33:12
And this is maybe a silly question to ask, Do you think that Parkinson's and being you know someone who's now living with Parkinson's, has that changed the way you are a doctor in any way? In particular? I don't mean in terms of you know, that where you're working, etc. But has it given you anything? Is it taking anything away? Has it changed how you manage certain things or talk to patients?
Dr. Jonny Acheson 33:35
I think the alcohol, people who get admitted with alcohol are, you know, I do spend a lot of time with them, because people just want you to listen. Yeah. And I think it's really important to think whenever you get diagnosed with a condition, so Parkinson's, I'm really keen for everybody to know what Parkinson's is, and what it's about. But I always say, you know, but I'm only doing that because I've been diagnosed with a condition. And you can't expect people to know about Parkinson's, multiple sclerosis, learn the whole range of conditions and the thing, I think it's really important to what I would say it's really important to educate your family, it's important to educate your friends. And it's important to educate your work colleagues about the condition that you're living with, because that really helps. That really helps in those those environments. So, I would definitely I would definitely say that if you do get somebody with Parkinson's in the ward, I will always I will always sort of whisper in their ear, when I'm listening to their chest, you know, sort of say, "I understand how this is affecting you because I'm living with it as well." And they sort of reeled back a bit and go, "Well, you're so young," but, you know, I think that's important as well. I was in the post office to the week with my wife and my wife, obviously, I'm 48 this year, she's 47. But she, she looks a lot younger than I do. Must be the moisturizer that she uses, or her or her genes. But I was in the post office, and the woman behind the counter, looked at my wife and then looked at me and asked "are you two together?" And I was like, "Well, yeah. 23 years." I wanted to ask her why she said that. But I never had the guts.
Dr. Jonathan White 35:45
And a senior colleague used to say about my wife, Jenny, that I was punching above my weight every time he saw me. And he still does anytime he sees me "you're punching above your weight, son." So I take as a compliment.
Dr. Jonny Acheson 35:56
I think he'd probably say the same if he saw us.
Dr. Jonathan White 36:06
That idea of disclosure is a really interesting one. I don't always, I see lots of people with MS. Obviously, working in sort of Obstetrics and Gynecology, you'll see lots of people. And I sometimes tell them, I feel it's appropriate. But sometimes choose not to. In those I don't tell, I always feel slight guilt. Not because I want to tell them about me, but because I feel this duty to sort of maybe because often they're the management can be sort of a bit bare bones. And they're not aware of things like vitamin D, or exercise or the role that lifestyle plays and I feel almost this duty that I have to tell them. But it can be very difficult, because you're obviously giving a bit of yourself and you're really taught as a doctor not to do that. And it might be a bit inappropriate at times. But yeah, I like that idea that as you listen to their channel, she's whispering in their ear and saying, I've got it too. I'm not sure how I can do that. But I'm certainly gonna think about it
Dr. Jonny Acheson 36:58
I was gonna say, I do feel as if I have a duty there. And I think that's really important because I feel it's I have a duty to them getting their Parkinson's medications in hospital when they need them. Because, you know, I think, it's a travesty that, you know, Parkinson's UK did a study in 2019 that showed that in England and Wales only 53% of people in hospital with Parkins got their medications on time. That's what why we launched a you know, a national campaign back on World Parkinson's day last year for people in hospital with Parkinson's, getting them getting their time-critical medication on time, I think that's the big driver. And that's a big driver for us at the minute to try to get that addressed. But it's we've made some progress. We're making more progress and it's gonna take like anything in medicine it's gonna take a long time to sort of get it on the agenda get get out of chains and get get care improve, but it just has to happen.
Dr. Jonathan White 38:15
So you've changed the way you work a bit like me, you dedicate one day a week to working with Parkinson's and causes isn't that right? You sort of work in engagement and advocacy?
Dr. Jonny Acheson 38:17
So I do one day a week with a Parkinson's Access Network, which only we've talked about, obviously, lifestyle changes within Parkinson's, exercise, diet, reducing stress. And what struck me whenever I was reading about Multiple Sclerosis, over the past week, is how similar the lifestyle recommendations and changes are for both conditions.
Dr. Jonathan White 38:52
Yeah, I mean, absolutely. You know, I suppose a little bit like in Parkinson's, there's there's never going to be a gold standard diet or lifestyle approach. And people will argue about the semantics of various aspects. But I think there's absolutely no doubt now and I and I'm glad to hear that increasingly more newer health professionals are actually acknowledging this, that diet quality first of all, if you're purely talking about diet, diet quality is absolutely vital to somebody living with multiple sclerosis. And I imagine in Parkinson's disease, there's got to be crossover there too. And if I could advocate for patients in the way that you do Jonny my would be that I would desperately want every single person diagnosed with multiple sclerosis from now on to be told about the role of lifestyle in modifying their disease trajectory and how that they can through relatively simple changes in their lifestyle that don't cost the earth and that once you get used to them are not actually prohibitive in any way in fact, I eat a whole food plant based lifestyle with additional seafood and I've never eaten more interesting tasty food my life, and I wouldn't change it for for the world. It's it's daunting at the start. But actually, it's remarkably wonderfully empowering and without a doubt has made a difference to my disease trajectory already. And I just, I think that is something that we really need to get better at is, is, and I think that's as doctors is sitting in that space, where we're happy enough to say, we don't have a randomized control trial on this, but actually, that doesn't matter, because you can't do RCTs on fake steak, for example. But the evidence base is increasingly coming together and showing a very clear picture, that what you put into your mouth, how you exercise, how you manage your stress, has a massive impact on your brain health and your general health.
Dr. Jonny Acheson 40:42
No, I totally agree with that. I mean, I have to say, I'm probably better at doing my exercise that I'm watching my diet. It is an area that I really need to focus on a little bit more. I mean, we try to sort of stick to a Mediterranean diet and sort of fish and a lot of sort of lentils and that sort of thing. But you know, still like my meat, you know what I mean? And protein is a big, it's a big problem for people with Parkinson's, because, you know, if you have a big protein load, it'll affect the way your medication is absorbed. And that can make you feel a lot worse. So yeah, so yeah, I'll be looking on the Overcoming MS website, just to get a few more tips about that, because I was looking at the website earlier, a lot of crossover between between the two conditions. It's interesting, you know, I was reading and it said, you're not sure what causes it, but a combination of lifestyle environment and genetics is exactly the same as Parkinson's.
Dr. Jonathan White 41:49
You know, I always I'm really struck by the fact that MS certainly it didn't really exist, that we know of 160 odd years ago, yet, we now have 3 million people around the world affected 130,000 In the UK, it to me, it's an absolute no brainer, that something we're doing and our lifestyle or something in our environment has precipitated that change, because our genes don't change that fast. So it can't be genetics that accounts for it all and to completely ignore that side of the coin really is a disservice to you. Personally, you know, why would you not do all that you can to live as well as you can with these conditions? You know? It's obviously easier said than done.
Dr. Jonny Acheson 42:32
That's the challenge. That's the challenge.
Dr. Jonathan White 42:35
Yeah. Jonny, we've taken up lots of your time, but I think we haven't covered something that is very important. And it's it's what you do outside of medicine. So I know you're a big fan of football, and Leicester City. And tell us you're involved in a Parkinson's football tournament over the summer, I think. Is that right?
Dr. Jonny Acheson 42:56
Yeah. So we actually have been a couple times every year in Copenhagen, there's a there's a tournament called the Ray Kennedy Cup. So Ray Kennedy, obviously, played for Liverpool and Arsenal and he was diagnosed with Parkinson's, in his 30s. So it's really in memory of him. And it was set up by a physio from Copenhagen. But we went over in 2019, as part of the UK Young Onset Parkinson's football team, which was set up by a guy called Charlie Appleyard, and he lives in London. And he's also set up a charity of CIC company called Sport Parkinson. So it's really, really good what they've done. But we went in 2019, when there was 10 of us. We'd never played together before the weekend, we arrived at the all together and it was brilliant. So So we basically did an England we won the group, and then we got knocked out in the semifinals. But it wason penalties. So that was, that was a great experience. And we went back this year in 2022. And we didn't get out of the group, but it was, it was a great experience. There's a national sort of walking football tournament in St. George's Park and the head of the FA, which was happened last year for the first time. It's happening again, this year on the week, first weekend of March. And that's just encouraging people with Parkinson's, to play walking football really has two great way to get exercise, you know, just real team approach. It's getting people and social. It's very social. And that's very important for people with Parkinson's because they tend to sort of draw in themselves, not look outwards, and sometimes it can be very isolating. So the work that they're doing is obviously fantastic.
Dr. Jonathan White 44:51
So what you're saying actually, is that you're an international athlete now. Fairplay
Dr. Jonny Acheson 44:59
The only international athlete with Parkinson's is a guy called Patrick Crossan who is from Belfast, who actually got us Paralympic you know, classification. So he is the athlete amongst us that his his attitude to exercise has been absolutely phenomenal. And I wish him every success for all the competitions are gonna be under and in the next few years.
Dr. Jonathan White 45:32
Here, here here. Absolutely. There's one last lifestyle thing I want to touch on very briefly is I read a tweet that you wrote on the 18th of January. And it really struck me, which said that "I'm learning to always trust my gut instinct, if I make a decision, and it causes my sleep to be interrupted, increases my anxiety, and hence my overall Parkinson's symptoms, I've realized that the decision needs to be addressed and review to enable it to be reversed quickly." And I thought that absolutely chimes with me and how I feel about things like that, and what I'm learning about how I need to manage my MS. So perhaps you could very briefly just touch on the sort of the role of stress and how that does affect you.
Dr. Jonny Acheson 46:09
I was very concerned when I tweeted that I. This wasn't a it wasn't a Medical situation, it wasn't a clinical care, quite confident in those decisions. But this was around art. So basically, what happened. So I basically started to draw whenever about two years after I was diagnosed, I'd always drawn as a child, but hadn't drawn a lot since then. And basically, I set up an art website that initially was was set up to educate about Parkinson's so I drew I do a series of drawings called I called a Parkinson's portrayed was 32 sketches, basically took the took the word of the symptom, tried to draw a cartoon around it with a strap line to try to get people to understand what it felt like to have the condition but it was drawn a lot about Parkinson's, it was drawn a lot about emergency medicine as well. I did a charity calendar for the college for a couple of years. But I realized that drawing about Parkinson's that I live with, and drawing about emergency medicine that I worked in, wasn't actually that healthy. My most favorite thing I've drawn is people's pets so I actually draw people's the most promising draw or people's dogs and basically draw them it's based on silhouette and through the letters of their names. I've just got one here, I'll just, I'll just show you. This is a this is Otis and Arnold. Okay. Otis is a cockapoo. And Arnold is a pug. And that's proved quite then, that's proved quite popular. And I really enjoyed doing those, but I got an email from British Vogue there couple of weeks ago, and they said, we'd like to feature your art in one of our magazines in the March edition. So I sort of thought about it for one, you had to pay for it. And I thought, I think I'll do that. And then I started to feel a bit uncomfortable in that decision. And the reason was, because I'm a one man band, one man show, I started to worry about getting loads of orders wouldn't be able to fulfill. And that sort of got me stressed. And then I thought, well, I'm gonna have to draw about 30 pictures to basically even cover the cost of this. And is that the right decision? And, you know, what happened was, for 24 hours, I didn't sleep. I woke up the next morning, my Parkinson's symptoms were worse. I was stumbling, I couldn't think straight, I was just stressed, I was feeling real stress. And I thought myself, you need sort this out, you need to, you need to work out what's causing the stress. So that decision to say, I was going to go go with it, and obviously emailed them back at the end of the following day and said, You know, I'm not ready to do this, you know, contact me again, six months. And we'll see. And I think it was, that's why I sent the tweet out, so was the recognition that the decisions that you make, if they're gonna stress you, then you need to take action. Because once you once you address them and the stress reduces, then you're going to you're going to feel better. And you're going to live better with your condition. So that's really what that was about. But it was quite, it was quite scary as the how much of an impact that had and how symptomatic it was for for those sorts of 24 or 48 hours. And you know, I think It just brought home the importance of reducing stress and keeping things on on an even keel. I always say Parkinson's is a fine balance. I also say it's like being a Weeble, you know, the Weebles in the bath used to have, it's really like, it's really like that, because you're steady, you're not gonna fall over. But you'll, you can go, you can sort of, you know, key, the one side and that sort of care circle that's around you, is really important. Just sort of holding you back up and making sure you don't implode, so yeah, that's that's that that was that was an interesting experience.
Dr. Jonathan White 50:43
Well, as one of your customers, and proudly displaying Ross, the cat on our wall, I can certainly attest to the fact that you have pretty significant God given talent for that one, Jonny. So thank you for all of that work as well. And, and for delivering it on time for my wife's birthday, which was greatly appreciated. But that sounds like a fantastic way to manage your stress, I imagine that is they always talk about flow, the flow state of when you're doing something that you really love, and that you're very good at. How you just take on this wonderful sort of presence and so focused on the moment. And that's, that's something that I just think that all of us living with these conditions really need to find and it can just be so beneficial.
Dr. Jonny Acheson 51:30
I think you're I was just gonna say it really is because you know it, you can get a bit distracted with Parkinson's and I think what's good about finding a hobby or an interest is that it does focus the mind and it does settle you down and does I find it helps the motor symptoms on awful lot and, you know, even learning a new skill is something that can be can be of great, great benefit so,
Dr. Jonathan White 51:55
A bit of neuroplasticity
Dr. Jonny Acheson 51:57
Maybe by this time next year we will be we will be elite cyclists who knows.
Dr. Jonathan White 52:05
Maybe I'm I'm doubtful that I personally will be but sure I can keep pushing for that rainbow. Thank you so much for joining us on The Living Well with MS Podcast. We really, really appreciate it's been wonderful to hear your perspectives as a fellow Jonny, a fellow Northern Irishman, a fellow doctor and a fellow person living with a chronic neurologic condition. I wish you every success with all the brilliant initiatives that you have going on. And thank you again for your time today.
Dr. Jonny Acheson 52:30
Yes, thanks. Thanks very much. It's been absolutely fascinating. I've learned more about MS in the past week than I have in my whole medical career. So keep getting the message out, it's fantastic.
Dr. Jonathan White 52:43
Thank you, Jonny.
Overcoming MS 52:48
Thank you for listening to this episode of living well with MS. Please check out this episode's show notes at overcomingms.org/podcast. You'll find useful links and bonus information there. Have questions or ideas to share? Email us at podcast@overcoming ms.org or you can reach out to Jeff on Twitter @GeoffAllix. We'd love to hear from you. Thanks again for tuning in and see you next time for tips on living a full and happy life with MS. 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 health care professional.