Listen to S2E2: A conversation with Jessie Ace, host of the 'DISabled to ENabled' podcast
Thanks for listening in to our second season’s second episode. Deuces are wild, so we are breaking with our usual format and setting the stage for two podcasters to have a frank and intimate conversation about their respective journeys. Joining Geoff for this episode is the talented Jessie Ace – blogger, illustrator and host of the DISabled to ENabled, a podcast that aims to inspire people living with chronic illness.
Geoff Allix 00:00
Support for the Living Well with MS podcast is provided by Overcoming MS, a global charity registered in the United States, United Kingdom and Australia, whose mission is to educate, support and empower people with MS in evidence based lifestyle and medication choices that can improve their health outcomes. Please visit our website at www.overcomingms.org to learn more about our work and hear directly from people around the world, about the positive impact Overcoming MS has made on their lives. Now on to today’s episode. In today’s episode, I’ll be talking with Jessie Ace. Jessie is the host of the Disabled to Enabled podcast, which looks at invisible illnesses, and has a selection of inspiring guests to help and inspire people listening to her podcast. Jessie was diagnosed at 22 years old with MS, actually on the last day of her university degree. So she had an art degree and she’d already set up an illustration business and she lost feeling in one side of a body and ultimately couldn’t use her hands properly, so couldn’t work effectively as an illustrator initially. So we’re going to have a chat with Jessie, this is actually a co hosted podcast, so this will appear both on Overcoming MS podcast and also the Disabled to Enable podcast. So we’re going to have a discussion about how each of us have found having MS, treatments and things we’ve learned through hosting podcasts.
Jessie Ace 01:39
So excited, this is gonna be awesome. Enabled warriors, please help me in welcoming the fabulously lovely Geoff Allix everybody. Hey, how you doing?
Geoff Allix 01:49
And also because this is going to go out on both podcast platforms, I’d like to welcome you Jessie Ace.
Jessie Ace 01:57
We are doing it slightly different today which is very interesting. So hi, everybody on Overcoming MS. How you doing?
Geoff Allix 02:06
And hello to everybody on the Disabled to Enable podcast as well.
Jessie Ace 02:11
Fabulous. So let’s get straight in by discussing like what was your diagnosis story like, what happened that day when everything hit the fan as it was?
Geoff Allix 02:22
So it was quite a long drawn out process, so as you said my dad had MS, so I had some awareness of things. And I’d had some weird symptoms going back a long time; 15 years maybe was the first thing but really minor things like I lost sensation and all my fingers, ended up seeing a consultant at Charing Cross Hospital in London, he was very specialist guy, he couldn’t work out what it was, because he was saying, you’d normally lose them in two or three, there’s different nerves going down there. And a few months later, it cleared up and they said, Oh, that’s fine then and off you go and I just thought that it was fine and I thought okay, yeah, it was just an odd thing. Then I was getting other things and my doctor, my GP was aware that my dad had MS and he kept saying, Oh, don’t worry about that, it’s not that, it’s something else and just odd little little things that cleared up after a while and they said, well, that’s okay then. And then the one that really triggered it was I had an eyesight problem and I was having double vision. So completely seeing double vision from my eyes. The optician said, there’s nothing wrong with your eyes, because he said I just look in the eyeball, inside the eyeball, nothing wrong there, he said it’s something outside, something to do with your muscles or something to do with the nerves and that’s when I really pushed my doctor and he said, Okay, look I’ll send you to a specialist to get tested for MS, just so you don’t worry about it anymore. And so thankfully for my dad having MS I think I wouldn’t have got the testing when I did and it was merely so I didn’t worry. And then obviously I did see the consultant, and I got an MRI very quickly, I thought I’ve never used private health care, but I’ve always had it through work so I thought I’ll use it because there’s a long delay and so the very next week, I got an MRI scan and the consultant said straightaway, you need to be back on the NHS because Bupa won’t pay for all the tests you need. I mean they’re very, very good at some things; cancer care; amazing, other less common ailments; less good. So yeah, so basically I went back onto the queue being told I almost certainly had MS but it was unproven, so I didn’t get any treatment or support and then back of the waiting list I tried to avoid and so I had sort of months of waiting really and Dr. Google, and that’s how I came about a lot of charlatans really, people trying to sell you things, quite expensive vitamins basically. My wife came across Overcoming MS actually and she said “Oh there’s these people, not only they are not asking for any money, they will send you the book for free,” and you think OK, there’s nothing to lose. So you could sign up for them, not everywhere in the world, but UK, Ireland, I think Australia, New Zealand and American get an e-book version of it, they send you it for nothing. You think, okay, that’s worth doing and it’s very, very heavily researched. So the only thing is, I would say, If you’re not scientific background, it might be a bit heavy, but I sort of have that sort of background and I was quite into the idea of it, it was all referenced and lots and lots of evidence. Well, that sounds like good idea.
Jessie Ace 06:16
It’s really nice to see that there is so much evidence around it as well, because there’s some other diets in there, like the the Wahls diet, and you know, all this sort of stuff.
Geoff Allix 06:26
I think there is some commonality between the diets. So I do think that the Overcoming MS; Dr. Jelinek’s approach has more research and it’s the only one that they’re not asking for any money and I think that was a real key thing for me, it’s like, okay, this guy is actively not trying to get money out of me. And so, yeah, that’s really it, all the other ones you do have to buy into the program to some extent. And yes, they’re probably just trying to cover their bills and things like that, but there is a little bit of worry when you’re paying money for essentially well not a cure but an improvement in your condition. And how about yourself, how did you discover? I think you’ve had MS diagnosis for quite a long time havent you?
Jessie Ace 07:27
Yeah, so I’ve been diagnosed for about six years now. Right at the start, it was absolutely crazy. So you said that you had quite a long drawn out sort of process. Mine actually happened in three days. Three days, I went from being a perfectly normal 22 year old person and then suddenly, having being diagnosed with a degenerative lifelong condition. And I was like, what? Are you insane, this is crazy. It all actually happened on the last day of university, typically. So I’d spent three years training to be an illustrator, training to do like surface pattern design and things, I had this dream of having my designs in everybody’s houses and things and then on the last day, I woke up and the left side of my body had stopped working and I was like, Oh, my gosh, what the heck is going on here? This is insane. Like I was one of those people that just did not get ill, ever. I’ve never been to a hospital other than like to visit someone, it just wasn’t me, it wasn’t happening. So all of a sudden, I was taken/dragged more like to my GP surgery by my boyfriend, and he was like, look, it’s been a week, this hasn’t gone away, you really need to get this checked out. And the doctor actually misdiagnosed me to start off with a hemiplegic migraine. Which is, I Googled it, essentially, that means that there’s a area of localised weakness in the body or something and she was just like, Oh, it’ll come back. it’ll come back. But she actually rang me on the way home, it was about an hour later or so and she said, Look, I’ve just been speaking to my colleague, and she thought that you actually could have had a stroke, and I really should have sent you to A&E. And I was like, I’m sorry, what? I’m sorry, what a stroke at 22? Like, that’s insane. And I was like, Okay, well, if it’s a stroke, then it’s already happened, so it can’t get any worse, surely and then it got worse. So was sent to A&E, in there for two or three days having tests after test after test and tests that are ever only seen on Grey’s Anatomy, and I’m obsessed with Grey’s Anatomy. So I was just like, Okay, this is now completely bonkers. I’d actually had like, a children’s book to illustrate at the time, so I was doing that in hospital, because I don’t stop working, it just carries on. Yeah, it was just insane and the actual diagnosis process I’ve learned since being diagnosed was actually kind of bad because, I wasn’t getting any information about it in hospital. I was literally told to go and google it in my own time when I got home and I’d find all the answers I needed online. And obviously, all the answers I found online, involved wheelchairs, scary stories, crazy medication stories, and I was like, Oh, my God, what is going on? This is crazy. So I think because it happened in such a short timeframe, it just completely blew my mind, because I didn’t know who I was anymore. You know, like, a few weeks after I lost the left side, I actually also lost my right hand as well, so I had two hands that were not working. So the illustration degree that I did was just completely null and void within 72 hours or whatever. And I didn’t know who I was anymore, like I spent my life drawing, that was what I did, that was who I am and I just couldn’t do it, I couldn’t hold a pencil, it was bonkers. So yeah, I spent about four years or so I think, struggling to come to terms with this diagnosis and struggling to come to a new way of life and reaching that acceptance stage. And it was really hard, it was really, really hard. But after that stage went, I kind of thought, right, okay, I can’t do anything about this, so I’m gonna have to make it into something else and I actually started to write blogs for the National MS Society in America, which was amazing and it took me probably three months to get that gig because they kept saying no and I was like, but you need a younger perspective. I was like, Yes, you do, you need a younger perspective, let me talk about like, what it’s like to use a blue badge at 28 years old and stuff. Eventually, I got it, I got the call and then it all kind of just started to snowball from there. So I started to write for the MS Society in England, Shift.MS and MS-UK. And from those came magazines like New Pathway magazine, MS Matters magazine, Momentum magazine and it’s all just kind of got momentum now. It’s pretty crazy and then obviously, I started my podcast; Disabled to Enable podcast. Because when I was diagnosed, I was taken into my MS nurse’s office four months after my diagnosis, and she said, right, okay, we need to talk about disability law, we need to talk about disability benefits and I was like, whoa, I’m not disabled, like, this is crazy. I was like, yeah, my left side doesn’t work at the moment and I’m kind of stumbling all over the place, but I see myself as being creatively abled, or enabled. I don’t see myself as being disabled. So, yeah, essentially that’s it.
Geoff Allix 12:54
That’s a benefit of my dad, actually. My parents separated when I was quite young. I wasn’t living with him since his MS diagnosis, but I was certainly very aware that he was never in a wheelchair. Because I still had that like part of me thought MS is wheelchair and then the other part of me thought, but my dad is not in a wheelchair, so I kind of knew that it wasn’t always like that. I mean, I knew it wasn’t that bad and he did everything wrong, that I know now. So he had, well, yeah, his diet was terrible, he didn’t get any Vitamin D, he was told not to do much exercise, because they thought exercise made it worse. Initially, he was in a very high stress job, he used to run a pub. He didn’t change that, I think he realised that if he was stressed out, then things got worse. And I think you know that straightaway, if you’re stressed, then symptoms get worse. So there was no medication, then in the ’90s, so yeah, he didn’t have any medication and basically, they just didn’t know anything. And he smoked as well, and they didn’t really tell them to stop because they didn’t know. So he was doing everything wrong and ultimately, I think it was problems with a bladder infection that then led to other things and that’s why he died quite young. But yeah, he wasn’t in a wheelchair. So I was kind of I knew that that wasn’t an inevitability. So that was a benefit in a way.
Jessie Ace 14:33
Yeah, that’s really interesting and I do think you’re honestly really lucky to have someone so close to you with the same condition. I really do because I didn’t know anybody, I’d never even heard of the condition it just came completely out of the blue. So I think you kind of having that almost framework, I guess, to kind of see the cause and effect relationship between what he was doing and how he was living, to his inability to do so I think because of that, you probably thought, right, okay, I’m gonna look after myself better than what my dad did. So that’s why you kind of got into the OMS program isn’t it?
Geoff Allix 15:15
Well, it was the gap as well, that’s that big gap between being told by a consultant that I almost certainly had MS and officially having MS when you then can get treatment and support and so there was nothing in between those two, other than Google and so it was just well, what can I do in this sort of five months I think total. What can I do in that period to help myself? And we came across that and part of that approach, everyone sort of thinks that it’s just a diet, but it’s actually there’s at least five pillars, well there is seven, but there’s five core one. And one of those is medication actually, so it’s not, so it’s sort of take medication as necessary as well. So I wasn’t doing it as an alternative to what the neurologist was saying, it was, what else can I do? You know, if I can do everything possible, what can I do?
Jessie Ace 16:12
It’s more of a way of life in general, isn’t it? It’s a way to live healthily, encompassing all of those different pillars and things. Yes, so for enabled warriors listening on Disabled to Enabled podcast at the moment, could you kind of go through what those pillars are and the kind of overall of the OMS program?
Geoff Allix 16:31
Everyone thinks of it as a diet, it’s often referred to as OMS diet, because that’s the most visible change that you make. Everyone sees that you’re eating different food. So essentially, the diet for Overcoming MS is, if you think of a vegan, whole food diet, plus seafood, is the simplest way of saying it. So, no dairy and that is a real commonality amongst the different MS diets that you see. So when you look at Wahls protocol, when you look at the Best Bet diet, they very much push for no dairy which is a weird one, my MS nurse wasn’t really very positive about it and she said, well, that’s one of the main food groups. And then it was only when someone said, well, actually, it’s a bit weird, you know that there’s no adults animal on earth that still has breast milk and that’s a little bit odd that we still have breast milk. And there’s certainly no animal on earth that has breast milk from another species. And probably, if you were actually getting it direct suckling from a cow, you’d probably be arrested. People sort of say, variously, people come out with human breast milk, ice creams and things in trendy boxes or something and that equally every one goes that’s really, really weird. Well, it kind of is, but it’s kind of no more weird than another creature’s breast milk ice cream. So then you start to think well, actually, is it? So yeah, say vegan, plus seafood, because any form of seafood; any fish, shellfish are all absolutely fine. Again, I mean, there is the Overcoming MS book has reasons for these things. There’s a lot of similarities between some of the molecules in dairy or red meat, certainly, and myelin, which is the sort of the myelin sheath around the nerves and then it’s thought if you get a leaky gut, so your stomach is leaking things into your bloodstream, which it shouldn’t be, but is very, very common with MS, then your body thinks we need to get rid of this bad stuff that’s come across, they attack that, something very, very similar to that is myelin. So your body goes on this overdrive and attacks that as well and that’s not proven that’s just a sort of thought why there might be that causal link. So there’s a lot of evidence that it happens, the why it happened is a whole nother thing. That’s just a supposition. There are some other things very low saturated fats and this goes back to the Swank diet, beacuse in the 1950’s and has the longest running MS diet, where he put people on very low saturated fat and they did very well, the people who stuck to his program and what I find extraordinary is that he put the whole families on it, so he didn’t put the person he put their whole family on it to make it easier to actually follow it. And none of the children got MS and I think there was something like 500 people, it was statistically off the scale that none of the children got MS. They should have been quite a few, but not one of them got MS. So that makes me think for my kids, Okay, if you follow just the main tenets of what I’m doing, then it really massively reduces your risk. And so yeah, so basically, I avoid fried food, I avoid meat and dairy. But I have as much fish and shellfish as I want. On another thing I tried to avoid the big fish because you also worried about their mercury and stuff like that.
Jessie Ace 20:33
Well there is that as well.
Geoff Allix 20:38
So I said, like, anchovy is fine, mackeral small, tuna huge. So try and avoid. Doesn’t just mean eat tuna everyday because then you’ve got other issues. But yeah, it’s not been to hard, I mean, the hardest thing people said is cheese. There’s vegan cheese. Vegan cheeses aren’t cheese, whatever anyone tells you. But there’s nothing like a stilton or a cheddar. And really what got me into I was like, Okay, I feel better and now I hate the cheese isle in the supermarket, If I have to go down that aisle, I don’t like it, I don’t like the smell of it. So yeah, probably the hardest thing for me it’s giving up cheese, there are so many dairy fake milk if you like; soya milk, almond milk, they are endless now, so that’s all fine. It is just yeah, it’s just cheese, you can get some vegan cheeses, which will do some cream cheese, or you can make cheese sauce, but you’re not gonna get Stilton. The others is Vitamin D, there is an absolute causal link between how far you are from the equator and how many people get MS.
Jessie Ace 22:05
Yeah, I’ve just come back from Shift.MS’s, MS session in Bucharest and we talked a lot about Vitamin D with like, different neurologists and different nutritionists and things and I found it absolutely fascinating and one thing that they did say was if you’re having I think it was over 5000’s IU , if you having a 5000IU then you are at risk of having too much Vitamin D and potentially poisoning yourself.
Geoff Allix 22:38
Yes, so there is an element of that. Yeah, because there is a thing of the Coimbra protocols, Brazilian guy who gives people massive amounts of Vitamin D, and finds a lot of improvements. But the risk you have with high Vitamin D is Vitamin D is used to extract calcium from what you eat and if you have too much of it, you can extract too much calcium, and you can get kidney stones and actually someone did die of having a sort of hyper calcium or something. They were having massive amounts of Vitamin D, and they were having calcium as well. So with the diet side of it, if you’re not having dairy that cuts out your big calcium intake. So you get plenty of calcium from Vitamin D plus green leaf, because people say oh, how do you get calcium? Well how to cows get calcium they get it from eating grass, drinking water and being in the sun and that was it. So you can make calcium from, I wouldn’t encourage you to eat grass, but green leafy vegetables, plus Vitamin D. So the key thing is if you follow the diet, that also actually is low calcium anyway, so it’s not too bad. It’s certainly a 5000IUs I use is not a problem. If you going higher than that, I mean the OMS protocol recommends you get checked twice a year and most GP’s and you can go online as well for a small fee and if you check sort of spring and autumn tend to be the best times. Then you say okay, after the summer, you obviously get more, because of skin exposure? And what’s my levels like there and what’s what it was like after the winter and it takes a little while sort of tinkering about really some people need more than others. But yes, you should if you’re going to a high level of Vitamin D, that it’s worth getting it checked out and seeing what your levels are like.
Jessie Ace 24:35
Yeah, definitely, if anything around 30,000 or something a day then there was someone that was on that and I was like, Oh, that’s a lot.
Geoff Allix 24:48
But it’s one of those things that it’s not an instant thing like some vitamins, you must take them every six hours like if you’re taking antibiotics; like you must take them three times a day. It’s not like that, it’s stored in your body fats, so some people take none all week, and then take 50,000IU on a saturday or something. So if you’re told by your GP to up your levels, they quite often do it with a with a mega dose, so they’ll say; take a whackingly huge amount once and then it sort of slowly as dissipates, it’s not going to disappear after six hours. And it’s like a tablet, I think, Oh, if I didn’t have my Vitamin D, yesterday, I don’t worry about it, you just think i’ll catch up twice as much today, because it will level out. So it’s not one of those things, you need to take on a specific schedule, it gets stored in your body. And so this really is a really big one. There’s another one actually, it’s not really a pillar because I kind of don’t take it as read, which is the smoking one. Smoking is so heavily connected with MS and if you’ve got kids, really, you’ve got to avoid that when they’re really young and that’s what I realised, I smoked a bit when I was at university, not a lot, but my dad smoked and he was in my house until I was about six years old. And that is taken to be way worse than you smoking when you’re older. So if anyone with MS and they’ve got kids, who are kids have a higher rate of getting MS if your parents did, yeah, when they’re little when they’re really, really young infants the first few years of their life really try and avoid any smoke. There’s other ones exercise. So my dad was advised not to because they thought it makes things worse it does certainly does, if you were actually really hard and you’ve got MS, yeah, everything gets exacerbated if you see some of the Paralympic athletes, what you see and some of them finish a race and they can’t stand up and that’s because they’ve just done something really extreme activity, and everything’s exacerbated. But and this is sort of official NHS or British UK NHS, that my neurological physio said, if you sort of think of it as your sort of fitness ability is lower. If you don’t do any exercise, then those symptoms will kick in when you do even less activity, and you’ll keep going and the sort of circle will get smaller and smaller and he said that the end of that is not be able to any activity at all, because anything you do will start to exacerbate things. If you push the envelope outwards, yes, it might be uncomfortable, yes, you might get sort of symptoms, but you might actually find the fitter you get, the more you can do and certainly with doing a podcast, I’ve come across people running marathons and climbing mountains, all sorts of crazy stuff. And I can’t do it, I mean, I ran a marathon prior to having MS, there were, again, unknown then why I was getting sort of weird symptoms, I did a really heavy running session, which almost certainly was MS. But yeah, I didn’t have major symptoms. But there’s no way I could do it now, but I’m kind of thinking if I could push it a bit, start to do 5Ks and the problem I have actually is my the way I am I know if I stopped doing 5Ks I want to do 10Ks and if I end up the reason I ran a marathon is because I ran a half marathon and then there’s two of us went that’s only half a marathon, it’s kind of in the name, we have to do a marathon. So I don’t intend to do math again, but yeah, just pushing the envelope out was a bit and that certainly has improved prognosis long term doing some exercise. And the other one is meditation. So keeping stress reduction really. So mind whether you want to quit mindfulness, meditation, trying to reduce stress really, again, that’s bizarrely my neurological physio told me that I needed to meditate which I found really weird because he was a physio. Just think about stress as well, he said, If you get stressed out, things get worse and that’s definitely true.
Jessie Ace 29:17
You do you actually do and stress, like I don’t know about you, but it completely exasperates my symptoms, like, if I’m starting to feel anxious, then it’s just, oh, I start to get more pain, I start to get more weakness, and more fatigue and it’s just ridiculous. I actually developed a five day course recently, so it’s actually a five day challenge. Where you learn different exercises, different mindfulness techniques, different kinds of meditation techniques. And for anybody that wants to do that, if you go to bit.ly/fivedaychallenge, you can go and do that. So five day stress challenge, you can go and try that out and the people that have been through it have said like I’ve now got total techniques that I can use when I’m feeling anxious, when I’m feeling stressed, and it’s just so good, it’s so good to see and it’s so good to be helping people with that, it’s amazing.
Geoff Allix 30:10
I mean, I’ve spoken to some real specialists in it and they said, it’s good to do it, do half hour a day, brilliant, but do it all the time while you’re walking the dog. Just think about your surroundings, don’t stress about your work and everything. They said don’t do it whilst you are driving a car, because some people drift off to sleep. But generally, you can just be more mindful, you can think about what you’re currently doing, what are you smelling? What are you seeing? What you’re hearing? Not what are you stressing about with work? Or what’s going to happen next week? What’s with Brexit?
Jessie Ace 30:53
The majority of the time, the things that we stress about in life, we actually can’t control anyway. So it’s actually doing is no good to be stressing about something that we can’t have any control over.
Geoff Allix 31:03
Yeah. And what’s already happened there is no point in stressing about that. There was an analogy about a boat, if you’re sort of captured in a boat, you leave waves behind you of what’s happened, you can’t go back and change the waves, they’re just behind you. So you’ve just got to look for the present and always think about the present. So don’t worry, you know, what’s going to happen with Brexit, if you can do something about something, then do it. So if it’s an obvious thing, yeah, so I don’t fix that gutter, then i’m going to get loads of water in the front of my house. But if I’m worried about Brexit, there’s not a lot I can do about it. I can vote one way or another, but it will happen or it won’t happen, depending on what you prefer. And the final is medication because it’s not the Overcoming MS protocols are not anti medication at all, it’s set up by a doctor and they act to be encouraged to say where appropriate. I mean, I think that’s the key thing, I think neurologists kind of it’s the biggest thing in their armory is must take drugs. Now there are people who actually are doing all right, and they think, do you know what and they maybe often sort of phased away from having drugs and they do find when you get older, they become less useful anyway and they actually sort of slowly say, actually, I’m being very, very healthy, I’m doing all the good things and they then they do, try stopping it and fine, but then I take medication or kind of I’ve had a thing called Lemtrada, which is infusion treatment and I’ve had both rounds of infusion, so I shouldn’t need anything else. But so yeah, I’m certainly not anti medication and I’ve had people on our podcasts, ther’s a guy called Aaron Boster, I think I gave him your details where he’s very, very interesting. He’s very US specialist and he really thinks you should hit it hard, hit it early approach, which I think is the opposite of what tends to happen is they go okay, we’ll give you the sort of weakest drugs.
Jessie Ace 33:16
Yeah, we’ll see how you do.
Geoff Allix 33:20
Yeah and oh, you’ve had loads of massive relapses, we might have to up you a little bit. Well, why not go with the stuff that stop you having a massive relapses in the first pace? I’m relatively fortunate, so I’m on Lemtrada and the reason I was put on it is I started on a thing called Tecfidera, that caused me to have a dangerously low white blood cell count and I’d said, Oh, could I go on to Lemtrada because I really would like to sort of hit it as hard as I can and he’d said, no, no, you can’t unless you have loads of relapses it doesn’t work. But then he said, Oh, do you want to go on Lemtrada now? I said, I thought I couldn’t. He said, Oh, well, you know, you’ve been on a drug that’s failed and I said, but I haven’t had relapse. He said, yeah, it doesn’t matter why it failed, it failed, because you’ve got a high white blood cell count. So for whatever reason, a failure’s a failure. So, so I kind of felt quite fortunate, and I could really hit it hard. But it’s down to your health service, really. I mean, the UK is great, because it’s free, but you don’t get the choice. You couldn’t go to another company, the US you’re going to pay loads of money, but you have more choice and other countries are in between the two. So it does depend where you are and there is a big moves theres a guy called Gavin Giavannoni who’s the sort of top UK specialist at Barts and he’s really trying to push generic drugs out to places in Africa and Asia and South America where they don’t have the funding that they should be able to get some treatment because it’s so, so expensive and I feel very fortunate that in the UK that we do have it provided
Jessie Ace 35:09
Oh, seriously? Yeah, definitely, this is the other thing from going to Bucharest as well, I’m going to this MS sessions thing, we heard from people in Eastern Europe who don’t have access to any sort of MS medication or anything, they have no treatment plan, they don’t see a neurologist and it’s insane. We are incredibly lucky in the UK.
Geoff Allix 35:32
Yeah, I think and what developed world in general; Australia, New Zealand, America, I mean, America, maybe you’re gonna pay a lot more, but at least a specialist there and I think a lot of the world they are left to drift a bit. So that’s the core five protocols of the Overcoming MS. The other two really are look after your family as well, because they do have a massively increased risk. If you’re someone with MS, your children are very unlikely to get it, even in the sort of couple of percent range. But if you’ve got MS, it’s quite likely you’ll have another relative with it, it kind of work both ways. So there’s a lot of people I’ve met who’ve got a parent, or close relative with MS. So if you’ve got MS doesn’t mean your kids will have it. If you’ve got it there’s some genetic component, which they’re not sure. But there’s a good chance that someone else and you start to find that this is in the sort of like 10 to 20% range of people with MS have a close relative who has also got it. So yeah, just look after your kids, it doesn’t mean they have to do absolutely everything, you’re not gonna put on medication, certainly. But keeping them fit healthy; Vitamin D, make sure they get sunshine. That’s a classic thing as well, in Australia, they have this big Slip Slip Slop campaign, because they had a problem with skin cancer, very much in the ’90s I think they really pushed for it. So they really, absolutely encouraged everyone, massively high factor sun cream before you leave the house all times and they cut their skin cancer rates dramatically. But what happened is, all the other cancer rates went up and so did MS. So other things went up and so they actually stopped one thing, so actually their overall cancer rate as I believe as a whole went up, even as skin cancer went down. So they were curing one specific sort of cancer, but all the others were relied on Vitamin D and so now, with my kids, I take tropical places 15 minutes of sunshine; no sun cream, and then go in suncream all over, in 15 minutes, you’ll max out the amount of Vitamin D, your body will produce in a day anyway, it’s literally a quarter of an hour in Mediterranean or Caribbean or somewhere tropical, then you’ve got all the vitamin D, you’ll get in a whole day and then you can completely cover up and your body will stop producing anyway, because it naturally will just stop, it will never overdose you and you know, we were saying don’t take too much, your body won’t do that to itself. So you can, it will just stop producing it. So that’s an easy one with the kids, exercise, my kids have a pretty healthy diet they don’t have red meat, they do have chicken. Yeah, it’s healthy, but not quite as rigid as what I’m doing. I’m pretty confident with that, that it really gives them a very, very low chance of of getting MS.
Jessie Ace 38:46
Brilliant. So when you started on the OMS program, what kind of symptoms were you feeling then? And what kind of symptoms do you feel now? Have you seen a difference?
Geoff Allix 38:59
That’s a longer story. So I had those things like double vision, I had loss of feeling, really bad balance problems, I had real, there’s a single foot drop, a lot of people get where they can’t lift their foot, I don’t really get that I get sort of knee drop so that it’s not my foot lifting, it’s the ability for my knee to go up and also my heels go sort of heel to bum, I have trouble and those are real problems, so I couldn’t run anymore and those things, what was interesting is that my neurologist said okay, you’ll get to a new baseline, so he said you’ve had a relapse that caused those things, he said, we’ll get you on some medication, and then you’ll get to a new baseline and that’s where you are, if you have another relapse, we would now try and treat it with steroids and try and reduce the effects so that your baseline doesn’t lower anymore, but that’s your baseline, that’s where you’ll be. So after six months, some things have improved a bit, the double vision has improved a bit but he said that’s your kind of new base, that’s kind of what you need to live with now. And he was somewhat surprised, he said, but after a year, they’d all gone and he said, so you shouldn’t really come out of relapse, which was a while before because that’s caused the diagnosis, so it’s been a total of 18 months since I’d had these symptoms initially but then they started to fade away, he said that’s quite unusual and he’s quite pro Overcoming MS actually, my neurologist, my MS nurse, less so, but my neurologist is because he likes the fact that’s it’s set by a doctor and Professor stuff and he likes all the evidence. So he’s very much on board with it, and said, yeah, so what you’re doing, there’s no medical explanation for long term improvement other than your diet, lifestyle, and so on. I mean, that’s a dream that there is that re myelination, so hopefully that is something that will happen with medications, they are talking about, I foget the name of it now; Metformin, which is going into trials, and they’re fixing mice, but not humans yet. But that’s something where they are looking at that, that does cause remyelination, so it can actually fix the damage you already got. So I got some really very minor problems, actually, the problems I have now are largely caused by Lemtrada, which is the drug taking and they said that, they said it is likely to bring back previous symptoms. So if you get new symptoms, that’s a relapse, but if you’ve got existing symptoms that come back, that’s Lemtrada does cause that. So my left leg, I mean, I can’t run again, because I can’t lift my left leg very quickly, the double vision didn’t come back, nothing like that. It’s just it’s just really that left leg thing that’s coming back, subsequently from having Lemtrada very much after the second round. So Overcoming MS I think really did sort of clear me up quite a lot. I think the Lemtrada though, it’s a long term thing. You’re not taking a tablet that will fix you, it’s at least six months, six months really till you noticed any improvement and then you’ll probably get improvements over the next sort of first five years, just slowly, it’s like turning around an old tanker. It was going in one direction, you can’t turn it round instantly. So eventually you’ll get improvements. I mean there are people who are doing Overcoming MS that are in wheelchairs, having said that all the people I’ve met, they kind of stopped progression from doing it. So they didn’t get any worse. They are saying Oh, I wish I’d known earlier because I had all this and it hasn’t got rid of it, but it hasn’t got it worse since i’ve been doing it. So that’s why, I’m optimistic so it’s given me optimism really for the future. So I mean, I really think I will be much more active and I’ll be surfing and things.
Jessie Ace 43:10
Yeah, that’s excellent, that really is. I think, yeah, it’s interesting what you were saying about going back to exercise, I think, and moving your body more. Because there’s a thing called neuroplasticity. I don’t know if you’ve heard, so yeah, I had Dr. Gretchen, come on the podcast not too long ago and talk about neuroplasticity and it’s basically let me try to shrink this down. When you have lesions in your brain, you have scarring in your brain, neuroplasticity is when the brain sort of creates new pathways around those scar tissue, as I understand it. So by doing exercise and things, by moving your body, you actually create those new pathways and helps improve symptoms in the long term. I think what I’m struggling with at the moment, because I started running a few months ago, just before summer, actually. I started running and everything was kind of okay, and I kind of got used to the temperature eventually. But now that the weather has changed, I’m finding it really hard to run now and it’s really strange how it’s just kind of flipped on its head, but because it’s cold, I’m finding it really hard to move my body now. So I’m hoping to find different ways of exercising so doing yoga or something that is still creating those new neural pathways, so it’s interesting, I think.
Geoff Allix 44:42
Yeah, I think it goes one way or another. So I’m the opposite. So when it’s really cold, my symptoms are much lower. So I’m much better going like, I’ve been snowboarding a few times since I’ve had MS and I won’t really wrap up, I wont wear loads of massive thick layers because the cold is great for me, but heat is terrible. If it’s hot, then my symptoms are much, much worse. So I really have to avoid the heat. If I stay cold, I’m much better. So there’s a guy called Wim Hof; the Iceman, so he has an ice bath, but I’ve certainly gone thought this cold showers every morning. Massively improve, if I have a cold shower every morning, it improves what I’m doing. I travel a lot, I was traveling with work, last week I was in Florida, but a cold shower every morning and I’m fine. Try and stick to air conditioned places and i was a work thing, so largely, it was air conditioned so it’s not too bad. But yeah, I have to sort of like, oh, take a dip in the pool and look for cold. But it does seem to be either people are affected by cold or by heat.
Jessie Ace 45:54
I feel both because I get different symptoms depending on the temperature. Like is that a normal thing? I don’t know.
Geoff Allix 46:03
Most have been one or the other. There was somebody who follows Overcoming MS, not only did she do the Antarctic marathon, where you’re literally running across ice pack in the Antarctic, but she won. So she’s got MS and she won the Antarctic marathon as a female and yes, she’s following the Overcoming MS protocol, but she’s someone who loves the cold. So if you’re bad in cold and bad in heat, then I suppose the UK is a good place to be.
Jessie Ace 46:38
So everybody listening to this, if you comment down below under the podcast. How do you respond? How does your body respond to heat? Are you better with heat or better with cold? Like what’s going on there? How would you feel?
Geoff Allix 46:51
And also what do you do as well, any tips? Because you can get cold towels and the various ones, some of them you have to have bits of ice in them, other ones you just make them moist and and there’s there’s like electric cooling jackets. And there’s, obviously warming is somewhat easier, but a lot of people find even if you’re wrapped up as much as possible, their hands are completely numb.
Jessie Ace 47:16
It’s crazy and in the summer, I got this really great thing in the summer. Because I didn’t want like a cooling vest or anything like that, because it looked a little bit too, not my style, let’s say so I wanted something. I found this company and their scarves are brilliant so they sell these scarves and you basically dampen them and then wring them out and this scarf stays cold for like hours, it’s insane. So when I’m sat outside, and it’s really, really hot, have a barbecue and I’m like, oh, but I’m going to be weak and I’m going to be like tingly and so this scarf was my savior and it’s like, I can literally just put that on and like, feel so cool. It’s nice, It’s really great.
Geoff Allix 48:01
Yeah, I think from another company, but I’ve got a similar thing and the beauty of it is, so we went at Easter went to Thailand, where it was really it’s unseasonably hot as well, actually even for them and the beauty of the towels was that they worked for quite a long time, then eventually it will evaporate away and stop working. But you just the tub it came in was sealable, so you just kept water in that and then you just make it wet again, wring out a bit put it back on. So it could it would just keep working, so if you’ve got access to water, then you got access to cooling itself down. So that was a really handy thing to have.
Jessie Ace 48:53
Fabulous, that’s really good and I think it’s just genius to have those things like around you. Because they do make such a difference. They really do.
Geoff Allix 49:04
Yeah, so I mean, I think warming is probably more obvious state where we all wrap up warm. I think the other thing is, I do think about holidays, you know, where are you going on holiday, it does change where you want to go.
Jessie Ace 49:23
I think it matters as well, who you go with. Because if you go on holiday with friends for the first time, for example, I found quite difficult because I was kind of like they don’t understan and yeah, they just see me as a normal person and this is gonna be awkward. So anyway, before we go, do you have any advice that you can give to someone who is newly diagnosed or maybe been diagnosed for a while? And what would you what do you say to them?
Geoff Allix 49:53
I think arming yourself with the information is a really useful thing. So I would say I mean, obviously I follow Overcoming MS, so I would always promote that. I think it’s a very effective protocol. The book is free if you go onto the overcomingms.org website. You can buy it on Amazon as well, they’re happy for it to be free. they’re not trying to make money, they put it on Amazon because there’s the rest of the world as well. It’s very scientific. But that’s really useful and it gives you huge amounts of information. But also have a look into the other things as well, I mean, do you know do arm yourself with information, look into Wahls protocol, look into the Best Bet diet and make an informed decision because it needs to be something that fits with your lifestyle. But do bear in mind that certainly your GP has no idea, probably. My GP knows, he says he knows less about MS than I do. He doesn’t actually know really know, he knows a lot about normal day to day illnesses, but not a lot about those sort of things. My neurologist I only see about every six months if I’m lucky.
Jessie Ace 51:14
That is lucky, because I’m not seeing mine for three years now.
Geoff Allix 51:15
So I’m pushing to see mine again in December. So that’s because I’m going for treatment. But so they don’t see very often but even then be armes with information and questions and one of the best questions, actually, tip that I’d have is to when you speak to your neurologist, they have to give you official advice. So they will give you the standard NHS advice. An interesting question to ask your neurologist is what would you do? Because that allows them to give you a different answer.
Jessie Ace 51:48
I’ve heard that so many times.
Geoff Allix 51:49
What’s the official advice? Yeah, it’s what would you do? And my neurologist said, “Well, actually the diet lifestyle you’re doing, he said it’s gonna lower your risk,” he said probably lower your risk of MS, unproven, but it’s good chance. He said, certainly it will lower your risk of heart disease, low risk of cancer, diabetes, stroke, all these western illnesses have a lower incidence of people who have whole food, diets, but with the fish as well, because if you’re fully vegan, then you’re missing out on some things and you do need to be careful with Vitamin B12 and things you’ll miss. But if you have a whole food, plant based diet plus seafood, then you’re covering everything you need and getting rid of all the saturated fats and all the bad bits. Certainly the trans fats and that’s one thing, cooking with oil is something that Overcoming MS says you shouldn’t do because it does, it converts those fats into sort of more nasty sort of trans fats and they say if you see a McDonald’s burger and put it on a shelf for six months, it won’t go off, it will still look the same. Mould won’t touch it. So yeah, I mean, I’d sort of arm yourself with information is probably the biggest thing.
Jessie Ace 53:06
And I think as well, like, don’t be afraid to kind of say, to kind of advocate for yourself and to say to your neurologist, you know, like, I’ve heard that exercise is a good thing. Because neurologists were given the advice to give out to say don’t exercise and all this sort of stuff. So I think advocating for yourself and standing up for what you kind of want as well don’t just settle for, well, this is what my neurologist said, so I need to do this. It’s much more of a lifestyle change for you and make you make everything work for you.
Geoff Allix 53:41
And I have optimism as well and be the captain of your own ship. If you if you really want to get improvements, or certainly less symptoms, even if not improving, not getting any worse, then do everything. And that’s the tagline for Overcoming MS, is whatever it takes. So to do everything that’s like, well, don’t just think, Oh, I just need to take the tablets and that’s it. I think most people that is the majority of people that say certainly my MS nurse, my neurologist got me to talk at one of the forums, which is run by the MS Society and they said and it is remarkable there. There are about 100 people newly diagnosed MS people there. Five of them were interested, I’d say in diet and lifestyle, and the rest of them had no interest they were what drugs are gonna give me? How do I get benefits? How do I get a blue badge? And literally there were brochures of wheelchairs and if people weren’t in wheelchairs and they were sort saying okay, they would almost rather get at you sort of like do you you can either, you know over don’t want to give up cheese, It’s like, well okay, but there’s different paths you could take and yes, you might end up in a wheelchair and I know that’s a possibility for my future, but I would rather delay that as much as possible. I’d rather that never happened. I’d rather do whatever I can and if I’m in a wheelchair, I’d rather be in a wheelchair than be completely bed bound. I’d rather I have the best possible outcome that I can get.
Jessie Ace 55:28
You’ve done everything that you can. Yeah, exactly. It makes sense. Awesome. So, at the end of the Disabled to Enabled podcast, we go through something called a super quick secrets around. MS is kicking in today. So are you ready for some super quick secrets to wrap this up?
Geoff Allix 55:50
Are you ready if I do it back to you? Have you ever done it on your own podcast?
Jessie Ace 55:56
No, I can’t say I have to be honest. I can’t say how I thought but I am nice because I did send you these yesterday. My brain is not very good at thinking of things on the spot. So we will see how this goes. So okay. We have talked about some heavy stuff today and let’s have a little bit of fun before we go. This is about the show where we find out a little bit more about the personality of our guest. Listen, super quick secrets. Are you ready for this Geoff Go for it. Let’s do this. What is the most inspiring book that you have ever read?
Geoff Allix 56:31
So I’m gonna discount the Overcoming MS book. That’s a given kind of, so I’d say things like, like fiction books, One Flew Over the Cuckoo’s Nest by Ken Casey, is an amazing book, Life of Pi. But if you start talking about, apart from Overcoming MS, things, like lifestyle, stuff like that, The Four Pillar Plan by Ranjan Chatterjee, who’s a British doctor who does some stuff for the BBC. That’s a fantastic book and that’s talking about general health. But that’s talking about diet and stress relief and exercise and it’s a great book. It’s very simple things, but you’ll end up on a very similar theme to Overcoming MS, to be honest, because it’s again, sort of evidence for things, but he’s not talking specifically about MS, he’s just talking about health in general. And yes, good, you know low stress is always good. Listen, so if I throw that back at you, then what book you’ve read’s the most inspiring?
Jessie Ace 57:37
Oh, gosh, here we go, I think one of the one of the most inspiring books that I’ve ever read, I think was Beautiful, by Katie Piper and I’ve also just finished reading what was it called?
Geoff Allix 58:00
She’s the person who had the attack, acid on her face?
Jessie Ace 58:03
Yeah. So she was basically, she was a model and she got acid thrown in her face, It burnt like the whole top half of her it was it was horrendous and she went into so much detail on exactly like, how it affected her and what she looked like and she put pictures in the book and stuff and like, I can’t imagine and she suffered a lot with depression and anxiety at that point, because she was scared to go outside. She was scared to kind of for anybody to see her and it was just, it was heartbreaking to read to be honest, it was just amazing and she’s now gone on to set up the Katie Piper foundation for other people affected by burns and things and I love books like that. I absolutely love it because someone who has taken adversity and just like rocked it and has done something about it and it’s just phenomenal, I love it. Absolutely love it. So yeah, but I’ve also just finished Mad Girl by Briyony Gordon and oh my goodness, that deals with her struggles with OCD and anxiety and depression and just everything. She had an eating disorder on point as well and her life is amazing, she really is. She is the columnist for The Daily Telegraph, which is a newspaper in the UK if anybody’s listening that’s not in the UK. So yes, the kinds of things that she writes in such an amazing way, so definitely check that out Okay, next question to you. What is the weirdest thing that you’ve ever done?
Geoff Allix 59:36
I’ve done a lot of weird things actually. I used to travel a lot, I still travel quite a bit so work and stuff. I feel a lot of guilt about air miles. I’ve camped on a volcano, an active volcano, overnight so that we could see the lava flow properly because lava flow you can’t see very well in day light. So to get the really orange stuff you need night time and go above the tree line, we camped out with seismologists. They are getting reports on their radio from the Seismographic Institute and they get an idea of which direction it’s going in. So they want to have you sort of 45 degrees around the volcano, so you can see it, but it’s not coming straight towards you and it worked and it was in Indonesia called Mountain Merapi and it used to erupt every hour and yeah, eventually, they were having reports all through the night when we were sleeping, because you could hear the radio go off and get a load of chattering and they said, Don’t worry, all you do just stick with us, It’s very fast flowing lava here, If this problem, we go sideways, we don’t go down because you will never outrun it. So you just move across and it’ll go down the valley bits. You’ll be okay.
Jessie Ace 1:00:57
Crazy
Geoff Allix 1:01:02
Yeah, I used to love adventure sports. So I’ve fallen off a cliff and ended up not walking six months from compound fracturing all the bones in my right leg. That was my sixth form.
Jessie Ace 1:01:30
Okay, what is the what is your most favorite place that you’ve ever visited?
Geoff Allix 1:01:38
If it’s a country, I think Peru and I have traveled a lot. I’ve been round through Asia, I spent a year traveling around Southeast Asia, North and South America and yeah, most places. Peru’s just got a bit of everything, because if you go there, there’s a bit of coast, we didn’t spend much time on the coast to be honest. But they’ve got Amazon rainforest, really quite pristine Amazon rainforest. They’ve got mountains; Andes, so you can go into the Inca Trail, and they’ve got all the Inca stuff, the ancient Machu Picchu and stuff like that. So they’ve got all the mountain stuff you could go, genuinely mountaineering there. The Inca stuff, the rainforest stuff, the cities that Lima, sort of an ancient city, there is a bit of everything, really and it that’s what was quite fascinating. We’re just going from place to place to place and there will be so dramatically different when you go from the Amazon to the Andes and they’re all in one place. So I think of the countries I’ve been to, I think that’s probably the best one. And what about yourself?
Jessie Ace 1:02:46
Amazing. Um, for me, I think it has to be France, actually, the South of France, particularly because we went to stay in, so before this business, I had a wedding business. So we went over to teach this wedding venue about, like, how to attract more British brides and things, which is amazing and this place was just incredible and it was on the top of a hill and it was completely silent. I’ve never been anywhere that has been completely silent. It was insane and there were so many like vineyards and stuff around and yeah, we went for some really good food and that just makes my list to be honest. Nashville in Tennessee, America. I am obsessed with country music, so I love love, love going over there and I can’t wait to go over there next year. It’s going to be awesome. So yeah, they are my two I think. And I actually got out of telling you the weirdest thing that I’ve ever done. I’m gonna fill you in now. Okay, because this is a little bit weird. But I used to dance when I was younger. So I used to do ballet, and freestyle, or whatever and I actually did a show once dressed as a squirrel, and I was about 14 and it was the most embarrassing thing I ever did.
Geoff Allix 1:04:07
Could you be recognised though or were you fully squirreled up?
Jessie Ace 1:04:11
Well, I learrnt that there was loads of people in the audience from school, so I was like, oh my god, this is so embarrassing. You can laugh about it now, obviously. But um, yeah, there we go. So what is the scariest thing you think you’ve ever done?
Geoff Allix 1:04:26
So that’s going back to the weirdest thing I didn’t mention because I used to do a lot of rock climbing, some rock climbing without ropes, thats sometimes quite scary, but you kind of focusing on what you’re doing, so I don’t think you’re getting really scared as such. So I think the scariest time ever was I got chased by an orangutan. So we were trekking through the jungle we were hoping to see orangutans and we saw loads and loads of amazing animals. Loads of gibbons and monkeys and stuff and then yeah, this one and the guide knew about it, because they try and rehabilitate them, which is really good. But some of the orangutans have had a bad life and this particular one had had a very bad existence from humans when it’s captive, and they think it was very, very badly treated and so basically sort of hatred for humans, and they’re like, Well, you’re in the jungle, it’s their environment. They didn’t want to kill this thing, so we were being guided to go up and down really steep rock faces, and it was still following us and they were keeping us away from the high trees because the high trees they can swing from branch to branch, so trying to make sure it had to stay on the ground with us, but it was still following us. And they said, okay, it won’t cross water, so we went across a, it was fairly low river, it’s only, it was probably two foot deep and we sort of waded across and the guy was so confident that he got our lunch, the other side. The orangutan came down to the river still following us and he said, you just watch it now, it that won’t cross the river, you can have your lunch, watch the orangutan and then it starts to wade across the river and it got within a few meters of me one point, I think. And they are very, very, very strong and very dangerous. Incredibly strong muscles, very big teeth. So eventually, the guide took all the food because it was smelling the food and he went a different way. Said I’ll meet you back and he lured it away and then as soon as he lost us Westerners he lost the orangutan because he was much quicker.
Jessie Ace 1:06:51
So your guide that you’re with just kind of went right, Okay, I’ll go this way, you look go that way. Hopefully see you later.
Geoff Allix 1:06:57
Yeah, we had a trainee guide with us and he was actually he’d grown up in a tribe in the jungle. So he really sort of knew his way around. We couldn’t communicate very well with him, we just we just followed him. And the other guy just literally, he’d lost the orangutan in about 10 minutes, once he got rid of the Westerners who were slow and useless. Then he quickly lost the orangutan. But yeah, that was pretty scary. When it got that close, It was it was pretty close and I knew that it had attacked people and they had ended up in hospital before. So yeah, that was pretty scary.
Jessie Ace 1:07:39
Wow. That’s insane.
Geoff Allix 1:07:41
That’s is that scary or weird? Yeah.
Jessie Ace 1:07:46
Oh, wow. That is insane.
Geoff Allix 1:07:48
How about you, what the scariest thing?
Jessie Ace 1:07:50
I mean, compared to that, I mean, I don’t think I have one. I think the scariest certainly animal related, scary thing was probably when we were in France, actually and we went horse riding. So there was three of us. There’s me, my husband, and the person that lived in this venue and it was just kind of a how do I say, like, we kind of all just got on a horse and then just went through a forest. So this is only the second time that I’ve ever been horse riding, it’s the first time my husband had been riding. So we had no idea what we were doing. We were just following this person, like, Okay, this is okay, this is fine. We were going through this forest and there was like, suddenly, all these really, really low branches and we’re like, oh, God, like how, how are we gonna? This is really bad. So my horse was fine, my horse behave. But then we got to a river and my horse decided to just run and jump straight in the river from this really big height and I was like, Oh my God, what are you doing, I’ve never felt so out of control in all my life. Actually, on that same holiday is when they invited me to try snail for the first time, and I’d actually just stopped being vegetarian at the time and I’d literally just started to try getting into meat and things. So I was a bit iffy about chicken and I was given a snail and I was like, I don’t think I cant eat that. Oh my gosh, but I did eat that and it was grainy. So yeah, that’s probably the scariest thing. That’s that’s not a patch on an orangutan. So Geoff where can the warriors find out more about you and what you do?
Geoff Allix 1:09:34
So my name is quite unusual, so if you put my name into anything, it’s me, basically, there aren’t any others. So I’m on all social media, so yeah, Instagram, Twitter. If you put Geoff Allix then you’ll find me on Twitter, on Instagram, any of those sort of things. But in terms of what we’re doing a podcast overcomingms.org If you go onto the homepage there, scroll down quite a bit, you find a bit about the podcast. There’s an introduction to me, theres an introductory episode and yeah, we host we have about an episode a month, roughly, I think we’re something like 13 episodes in. In fact, one came out yesterday, which is talking about food for the holiday season. So you can do OMS compliant food, with the run up to whether it’s Christmas or Hanukkah or Thanksgiving. A lot of big meals happen this time of year, wherever you are and they’re often not ideal for certainly the way that Overcoming MS suggests you eat. So it’s trying to adapt for those sort of things. But yeah, overcomingms.org you’ll find those stuff. But yeah, an equally unusual name. So find me on Twitter, Instagram, wherever.
Jessie Ace 1:10:54
Cool. And you’ve had loads of really cool guests, on you’re on your podcast as well. I noticed so I noticed you’ve had Connor Kearney? So like, I know him.
Geoff Allix 1:11:06
I mean, certainly, there’ll be some of the same guests, I think. Because they’re there people with lots of useful information and I’ve certainly seen some of the ones you’ve got, you’ve had or coming up. And yeah, I mean, I mentioned Aaron Boster; I think it’s going to be a future guest of yours, he’s a useful guy and those people out there on social media anyway, there and there’s absolutely loads of resources, I think, for people have a look around there’s so much stuff, there’s lots of YouTube channels. Brandon Bieber’s another guy with a YouTube channel. he’s a US neurologist. There is loads of information. So really equip yourself with as much information as you can, because there is loads of stuff out there, but be skeptical as well and this was thing, so Aaron Boster, this US neurologist, his thinking about how you should add extra things as you’ve got the neurologist to give you the drugs. So you can just take the drug do nothing else. But if you’re wanting to do more than that, his rules are, don’t cost you loads of money, if it costs loads of money, potential it’s a con or potentially you’re just spending loads of money you haven’t got, so he said avoid things cost loads of money, or certainly are unaffordable. That’s one of his things. What are the potential benefits? So potentially, I’ve sort of so set something Overcoming MS. Potentially, it could actually lessen my symptoms, and give me a better long term prognosis. What are the potential side effects? So that’s something certainly with medication. I certainly wasn’t really aware of the level of side effects that I might get from Lemtrada, it certainly has had much more side effects than I would have hoped and I mean, I’m thinking maybe in two or three years, if I’ve come through this, and I will absolutely great, then I won’t regret it. If in two or three years, I haven’t improved from where I am now then I would regret it because I was better before the drugs, but looking at potential side effects. So other potential upsides or potential downsides for anything you do and the potential downsides for Overcoming MS for me are that I’ll miss cheese. But it’s something I mean, some people are, you know, they absolutely say no, I could not manage without milk in my tea and cheese on my bread. It’s not gonna happen. So but yeah, have a look what are the what are the ups and downsides? So does it cost those money? What the potential benefits what the potential downsides. If you put everything through that filter, then then you can sort of start things, should I be trying this and then and then try things to see how they do it. I mean, it could be that you’re low in Vitamin B12, it could be low in iron, or it could be Vitamin C or I’ve been through these things. I think another guy said to me avoid chasing rainbows, so essentially saying, you’re not going to find the pot of gold. If you keep chasing the rainbow, you’ll never get there. So don’t think that there is one thing that will cure you and maybe one day there will be but at the moment there isn’t. But if you could just find like incremental improvements and things will maybe make you a little bit better. And yeah, sure, try Vitamin B12, you can get all these things very cheaply anyway and did that benefit me or get to get your blood tested, am I low in something and all those things make a difference. So yeah, there is absolutely loads of useful resources out there.
Jessie Ace 1:14:33
So just to recap on that bit as well, so you can go and find Geoff Allix everybody listening on what Facebook, Twitter Instagram.
Geoff Allix 1:14:41
So the key thing is overcomingms.org or look me up on Twitter, on Instaram as well and I publish things I see about they’re mostly MS based stuff that I post on there. And for yourself Disable to Enabled I found actually if you search for Disabled to Enabled you find lots of resources, which are all you.
Jessie Ace 1:15:08
Awesome. Yes, somebody actually told me the other day, which is really funny that they were searching for information on a blue badge and the first thing that came up is a blog that I did for the MS Society, oh okay, good. So yeah, so you can find me on the Disabled to Enable podcasts, search iTunes, wherever you listen to podcasts, or you can go to bit.ly/ewconnet and all of this will be in the link in the show notes anyway, so you can go and check up there. If you want to read all the blogs and things that I’ve written and see the illustrations that I’ve done, you can go to Jessieace. com. So there we go. So thank you so much for coming on the show today, Geoff. This has been like a totally new thing for me, I’ve never had someone interview me whilst I interview them. So yeah, so if you’ve enjoyed that, you can go to the the Overcoming MS podcast, and go into the shows or you can come to the Disabled to Enabled podcast where we have a lot of fun and share lots of cool information. So thank you so much, Geoff.
Geoff Allix 1:16:19
With that, I would like to thank you all for listening to this episode of Living Well with MS. Remember that there is a wealth of information at overcomingms.org including show notes and an archive of all Living Well with MS episodes. Once again, that’s overcomingms.org. There you can also find OMS friendly recipes and exercise tips, connect with other OMSers in your local area through our OMS Circles program, and learn about the latest research going on in the MS world generally and related to OMS specifically, I encourage you to register on the site and stay informed about the latest news and updates. I also encourage you to subscribe to this podcast, so you never miss an episode and please feel free to share it with others who might find it a value. Let us know what you think about the podcast by leaving a review. And if you have ideas for future episodes, we’d love to hear from you so please contact us via our website overcomingms.org. Thanks again for listening, and for joining me on this journey to Overcoming MS and Living Well with Multiple Sclerosis. I’m Geoff Allix and I’ll see you next time.
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Jessie has interviewed everyone from Paralympians and radio DJs to chronic illness bloggers and marathon runners. She’s also a writer and illustrator for the biggest MS charities worldwide, such as the multiple sclerosis today, National MS Society, MS Society UK, shift.MS, MS-UK amongst others, and has also written articles and illustrated for Momentum magazine, MS Matters and New Pathways.
Jessie was diagnosed with MS at 22 and says MS makes her feel blessed every day to be able to live a new life and to connect with so many amazing people. Her own experience of being newly diagnosed so young was negative and scary, so she wants to change this for other young people and support them through the process by being a patient advocate.