1 00:00:00,000 --> 00:00:10,040 Hello and welcome to my next podcast. There was no podcast last week. Unfortunately I 2 00:00:10,040 --> 00:00:17,800 wasn't having the best of weeks. So to be fair I just took a bit of a break from it 3 00:00:17,800 --> 00:00:24,800 and see where we went. But welcome back. It's good to be talking to you all again because 4 00:00:24,800 --> 00:00:31,480 I'll be honest I did miss it not recording last week. It was a bit frustrating. But you 5 00:00:31,480 --> 00:00:37,200 know one of those things we sometimes have to push things to one side to allow us the 6 00:00:37,200 --> 00:00:47,000 chance to push forward as a person. For those of you joining me on YouTube I have had an 7 00:00:47,000 --> 00:00:59,920 attempt at actually recording this podcast through an actual proper piece of equipment. 8 00:00:59,920 --> 00:01:05,120 I'll be honest I'm running it through the laptop and I've got a green screen behind 9 00:01:05,120 --> 00:01:10,120 me. I've not done that perfectly I've got to be honest with you. There's a picture of 10 00:01:10,120 --> 00:01:15,680 trees and a bit of a waterfall. There's still part of the green screen poking through but 11 00:01:15,680 --> 00:01:23,400 over time hopefully I will try and figure that out. There's also a little bit in the 12 00:01:23,400 --> 00:01:31,800 bottom corner just telling you who I am and what this is. Well that's all for a bit of 13 00:01:31,800 --> 00:01:37,560 an intro today as I say I wanted to apologise for the lack of a podcast last week. But you 14 00:01:37,560 --> 00:01:46,280 know hopefully that gives you all a bit of time to recover from the sound of my voice. 15 00:01:46,280 --> 00:01:53,880 I've got to be honest with you it's not been an easy time currently. It really hasn't been. 16 00:01:53,880 --> 00:02:00,880 I've been struggling. There's been a few bits going on in the background. I can't go into 17 00:02:00,880 --> 00:02:07,480 too much detail. It's work related but I really can't go into too much detail at the moment. 18 00:02:07,480 --> 00:02:17,600 All I can really say is hopefully I'll be able to talk about it soon with you all. But 19 00:02:17,600 --> 00:02:24,160 yeah I'm not going to go too much into that. It is what it is. I'm plugging along and trying 20 00:02:24,160 --> 00:02:32,840 the best I can to cope with it. But yeah I mean today I'm going to do something that 21 00:02:32,840 --> 00:02:39,360 I thought about doing for a few weeks but actually I hadn't done. I was a bit nervous 22 00:02:39,360 --> 00:02:46,480 about it. I have in front of me my little book that I was given when I went for my first 23 00:02:46,480 --> 00:02:54,400 ocrevus infusion and it's obviously the little booklet that you get given that talks about 24 00:02:54,400 --> 00:03:03,160 the infusion itself, why you've been given it and everything else. So as it's MSAware 25 00:03:03,160 --> 00:03:09,360 this month and we are pushing to the end of it now I thought you know what let's talk 26 00:03:09,360 --> 00:03:13,600 about it. My memory isn't great. I'm going to be honest with you my memory is pretty 27 00:03:13,600 --> 00:03:19,720 awful so I am going to read from the book quite a bit and then I'm going to make my 28 00:03:19,720 --> 00:03:29,360 comments on certain aspects of what's in the book. So please bear with me. This is a different 29 00:03:29,360 --> 00:03:35,440 type of podcast this one. It's probably a little bit more professional. Probably not 30 00:03:35,440 --> 00:03:40,240 let's be honest probably not. I'm kidding myself on that one but I'm trying. I'm trying 31 00:03:40,240 --> 00:03:52,160 my best. So I'm opening up the book and it's needless to say the first page is a contents 32 00:03:52,160 --> 00:04:04,200 page. Okay pretty confident we know roughly what's inside this. Okay let's get in here. 33 00:04:04,200 --> 00:04:11,920 Okay so it says here starting with ocrevas and basically it explains you've been given 34 00:04:11,920 --> 00:04:19,600 this booklet because you've been prescribed ocrevas ocrelusumab for early primary progressive 35 00:04:19,600 --> 00:04:25,560 multiple sclerosis. I don't know how early it is I'm going to be honest with you but 36 00:04:25,560 --> 00:04:32,880 you know we'll take it. A bit of treatment is a bit of treatment and I have to admit 37 00:04:32,880 --> 00:04:39,960 I'm feeling a bit a little bit better in myself since having the treatment. I know it's still 38 00:04:39,960 --> 00:04:45,120 quite early stages I'm going to be honest it's not long since I've had the second half 39 00:04:45,120 --> 00:04:52,240 bay. Even if it's just mentally it's making a bit of a difference to me which is a good 40 00:04:52,240 --> 00:05:00,080 thing it's a real good thing. It's important you feel confident about taking ocrevas. If 41 00:05:00,080 --> 00:05:04,760 you want to be sure you're getting the best from the treatment your doctor has prescribed 42 00:05:04,760 --> 00:05:12,800 this booklet is here to help. That's pretty decent we'll take whatever help can come not 43 00:05:12,800 --> 00:05:19,320 a problem with that at all. I mean there's little bits in there about sort of understanding 44 00:05:19,320 --> 00:05:32,520 your MS. Let's be fair and I'm going to really really dumb it down. My immune system gets 45 00:05:32,520 --> 00:05:45,600 a bit hungry sometimes and it decides it fancies eating the myelin on my nerves. I don't quite 46 00:05:45,600 --> 00:05:51,160 know why it does that but you know if he's hungry he's hungry and it just chooses to 47 00:05:51,160 --> 00:05:59,960 eat the wrong stuff. I kind of understand that because I love a big fat greasy burger. 48 00:05:59,960 --> 00:06:04,200 As I said I'm going to try and dumb that down a little bit and it don't get much more dumbed 49 00:06:04,200 --> 00:06:09,840 down than that but that's the be all and end all with MS. Immune system gets a bit hungry 50 00:06:09,840 --> 00:06:16,760 and it decides it's going to eat the myelin which for those that are not sure because 51 00:06:16,760 --> 00:06:20,800 I'm aware there is some people that listen that don't really know too much about MS at 52 00:06:20,800 --> 00:06:31,440 all and they don't have the condition. Basically that's what MS is in a very basic form. Your 53 00:06:31,440 --> 00:06:40,040 immune system attacks your central nervous system, your brain, that sort of stuff and 54 00:06:40,040 --> 00:06:48,280 it just so happens that the myelin which is like the fatty sheath that goes around your 55 00:06:48,280 --> 00:06:57,720 nerves that's what gets chewed up on. A little bit like taking an electrical wire and stripping 56 00:06:57,720 --> 00:07:04,120 the protective coat off the cabling. It's going to mean things don't work properly 57 00:07:04,120 --> 00:07:10,240 aren't it let's be honest. It really is going to mean that but that's again just a dumbed 58 00:07:10,240 --> 00:07:19,000 down way of putting it. You know I'm going to make jokes because this is my way of coping 59 00:07:19,000 --> 00:07:29,720 that's how we do this. So as it states here and again to me this condition is relatively 60 00:07:29,720 --> 00:07:39,600 rare we do know that but around 130,000 people in the UK have MS. The next line is very very 61 00:07:39,600 --> 00:07:50,160 accurate. Everyone that's got MS actually doesn't get affected in the same way. Yes 62 00:07:50,160 --> 00:08:02,360 we do have very similar effects and feelings and whatever else but actually in the overall 63 00:08:02,360 --> 00:08:11,680 two people are affected in the same manner. Again that's fact you know I've talked to 64 00:08:11,680 --> 00:08:19,760 a lot of people worldwide and it really is a case of no two people are the same. So it 65 00:08:19,760 --> 00:08:28,680 is again it's a very personal condition it's one that you can have a good conversation 66 00:08:28,680 --> 00:08:34,000 with people that are also struggling with it. But it's going to be little bits and pieces 67 00:08:34,000 --> 00:08:41,200 that are totally different from one person to the next. So again just one of those I 68 00:08:41,200 --> 00:08:45,560 thought I'd float out there because I kind of like that comment he's put there I really 69 00:08:45,560 --> 00:09:00,200 do. What have we got next? How MS affects your nerve cells? Okay nerve cells are the 70 00:09:00,200 --> 00:09:06,080 body's communication system electrical messages pass along these cells to keep everything 71 00:09:06,080 --> 00:09:13,160 in our bodies running. Yeah you can see here unfortunately there's a little diagram and 72 00:09:13,160 --> 00:09:20,080 it shows the nerve cell it shows damaged myelin and healthy myelin next to it. And as you 73 00:09:20,080 --> 00:09:29,520 can imagine the information being sent up that nerve to the cell when there's a break 74 00:09:29,520 --> 00:09:37,120 in the cable so to speak actually that information is going to fly off in different places where 75 00:09:37,120 --> 00:09:43,400 it doesn't need to be and that's what's going to cause different effects. And again yes 76 00:09:43,400 --> 00:09:50,520 it's a really good and I am trying to play down as much as possible because again I'm 77 00:09:50,520 --> 00:09:56,280 trying to sort of get these ideas out there for people that don't really know a great 78 00:09:56,280 --> 00:10:04,280 deal about MS because actually I think the more that gets known about the condition worldwide 79 00:10:04,280 --> 00:10:12,840 the better. So again please bear with me in this episode because this is a different thing 80 00:10:12,840 --> 00:10:22,520 for me to do. MS is well known as an autoimmune condition it really is and the exact wording 81 00:10:22,520 --> 00:10:30,280 that is here for that. This means your body's immune defenses mistakenly target parts of 82 00:10:30,280 --> 00:10:37,960 your own body correct yeah they do as I just said immune system gets hungry nom nom nom 83 00:10:37,960 --> 00:10:44,800 nom it starts to have a chomp down on the myelin around your nerves your central nervous 84 00:10:44,800 --> 00:10:53,040 system that's what it does and it's a bit of a weird thought process I'm going to be 85 00:10:53,040 --> 00:11:02,120 honest with you it is a bit strange I'm going to be fair. As it says here it does affect 86 00:11:02,120 --> 00:11:09,080 the B and T cells I'm going to be honest with you B and T cells I'm not massively 87 00:11:09,080 --> 00:11:17,240 a favor of what they are so I don't want to go too far into it but yeah now it is what 88 00:11:17,240 --> 00:11:24,480 it is that's what this ocrevus then comes to have a chat with very friendly chat very 89 00:11:24,480 --> 00:11:37,400 friendly. Primary progressive MS what it is saying we know there is several types of MS 90 00:11:37,400 --> 00:11:45,680 that's very very well known that's something that is out there. The prescription for ocrevus 91 00:11:45,680 --> 00:11:52,600 has been made to treat early primary progressive MS as I've said previously I've been looking 92 00:11:52,600 --> 00:12:00,160 back and speaking to medical professionals I've actually been probably struggling along 93 00:12:00,160 --> 00:12:10,920 with MS since the year 2012 so probably actually in my 11th year which is a bit strange because 94 00:12:10,920 --> 00:12:19,080 again I was only diagnosed last year but maybe me I ignored a lot of signs and everything 95 00:12:19,080 --> 00:12:22,920 else that was out there that could possibly have been saying to me go get your doctors 96 00:12:22,920 --> 00:12:27,240 get yourself checked out for whatever don't get me wrong I did go to the doctors for little 97 00:12:27,240 --> 00:12:34,600 bits and I was treated for little infections and whatever clearly that never worked but 98 00:12:34,600 --> 00:12:41,360 maybe if I had pushed things a little bit tougher maybe just maybe this would have been 99 00:12:41,360 --> 00:12:48,440 figured out sooner. Again as it says here symptoms can vary from person to person I've 100 00:12:48,440 --> 00:12:58,240 discussed my symptoms for me again it all started with the numbness in the feet and 101 00:12:58,240 --> 00:13:03,800 over time that worked its way up my body I'm not going to go massively into it but it worked 102 00:13:03,800 --> 00:13:14,000 its way up my body right to the point of sort of around the rib cage area and just felt 103 00:13:14,000 --> 00:13:24,120 like a massive squeeze the MS hug I do like a hug I've got to be honest I do like a hug 104 00:13:24,120 --> 00:13:33,360 not this one. Possible primary progressive MS symptoms and to be honest with you not 105 00:13:33,360 --> 00:13:39,920 just primary progressive these symptoms can also affect different types of MS but it's 106 00:13:39,920 --> 00:13:44,720 saying eye pain and vision problems difficulty thinking clearly I must admit that's something 107 00:13:44,720 --> 00:13:58,000 I'm having issues with. Fatigue oh yes numbness and tingling tingling not tickling I don't 108 00:13:58,000 --> 00:14:03,400 know it does tickle a little bit though but yeah numbness as I've just described numbness 109 00:14:03,400 --> 00:14:15,920 for me was where it all started. Problems with balance and coordination yes absolutely 110 00:14:15,920 --> 00:14:24,160 real big issues I've got to be honest massive issues. Sensitivity to heat now this is where 111 00:14:24,160 --> 00:14:32,960 it's a bit strange for me because heat yeah it sort of dulls me down a little bit but 112 00:14:32,960 --> 00:14:37,480 actually I'm a massive fan I love sunshine I love the heat not a problem actually it's 113 00:14:37,480 --> 00:14:46,920 cold cold weather for me this this last winter actually has been really awful yes I mean 114 00:14:46,920 --> 00:14:54,400 okay this is about the point where I'm the worst I've ever been you know progressive 115 00:14:54,400 --> 00:15:01,960 so I've progressed to a point where clearly I've never been but cold weather has seemed 116 00:15:01,960 --> 00:15:13,480 to be more of an issue for me personally it's then talking about pain pain ah yes pain without 117 00:15:13,480 --> 00:15:23,760 a doubt for me pain predominantly is legs and lower back I'm not going to class my hug 118 00:15:23,760 --> 00:15:31,560 as pain because it doesn't hurt it's just it's there it's there and I'm dealing with 119 00:15:31,560 --> 00:15:37,040 it so yeah in all fairness I'm not going to class that as pain but it's a real bad discomfort 120 00:15:37,040 --> 00:15:42,960 and I have to admit it is awful really really awful to the point at times it makes it very 121 00:15:42,960 --> 00:15:47,520 difficult for me to breathe properly I have to sort of struggle to try and to try and 122 00:15:47,520 --> 00:15:54,160 breathe but I'm kind of used to it now it's been it's been going on for a long time stiff 123 00:15:54,160 --> 00:16:01,080 muscles yes bowel and bladder problems now I'm not going to start talking to all about 124 00:16:01,080 --> 00:16:08,840 my bowel and bladder not massive issues for me to be honest with you nothing that causes 125 00:16:08,840 --> 00:16:15,480 huge problems but there is little bits and pieces and again it's not fair for me to talk 126 00:16:15,480 --> 00:16:24,480 to you about that so I'm not going to the other ones talking about sexual problems again 127 00:16:24,480 --> 00:16:31,040 that's not a conversation we're going to be having not here but again if you have those 128 00:16:31,040 --> 00:16:35,680 kind of issues talk to your doctor talk to your MS team see if there's anything that 129 00:16:35,680 --> 00:16:42,120 they can do to assist any of those sort of issues make sure you're speaking to your 130 00:16:42,120 --> 00:16:52,680 your medical team discuss them the booklet is then going on to ocrevus itself now I am 131 00:16:52,680 --> 00:16:58,680 mindful of the time we're sort of looking at 17 minutes here that I've been chatting 132 00:16:58,680 --> 00:17:06,720 away but this little bit I actually I do want to get to talking about and what I'll do on 133 00:17:06,720 --> 00:17:10,880 the next podcast there's a chance actually I might actually release another podcast in 134 00:17:10,880 --> 00:17:17,000 the week there's no promise if I get chance I will release another one in the week so 135 00:17:17,000 --> 00:17:28,120 bear with me it might happen as it says ocrevus is disease modifying therapy it effectively 136 00:17:28,120 --> 00:17:36,200 is supposed to slow down the progression and control the MS itself now as it says here 137 00:17:36,200 --> 00:17:41,360 it's talking about the B and T cells which are the ones that are supposed to protect 138 00:17:41,360 --> 00:17:52,260 your body from disease but as it says when you've got MS they team up and cause inflammation 139 00:17:52,260 --> 00:17:59,720 and attack your nerves which is what the ocrevus is there to do it's there to try and stop 140 00:17:59,720 --> 00:18:06,300 those B and T cells from causing those kind of problems and again I'm not going to try 141 00:18:06,300 --> 00:18:10,400 and get too scientific I'm not just going to completely read from the textbook in front 142 00:18:10,400 --> 00:18:20,220 of me but the basics are the ocrevus goes into your body and it tries to slow down the 143 00:18:20,220 --> 00:18:24,840 effect the B and T cells are causing the problems they're causing the inflammation all the rest 144 00:18:24,840 --> 00:18:36,280 of it so hopefully hopefully that does actually work and hopefully things can start slowing 145 00:18:36,280 --> 00:18:44,400 down for me personally because I'll be honest with you it's been flying I must admit the 146 00:18:44,400 --> 00:18:53,760 problems are becoming thick and fast but actually in the last two maybe three weeks I've not 147 00:18:53,760 --> 00:19:02,960 really had anything new it's been all old stuff which I'll take I can accept that now 148 00:19:02,960 --> 00:19:14,360 what it is next talking about is how ocrevus is supposed to help you as a person now I 149 00:19:14,360 --> 00:19:19,960 to be fair that is probably something I might well discuss in in the next episode because 150 00:19:19,960 --> 00:19:25,640 we are pushing on at 20 minutes now and me sort of talking all sciencey and everything 151 00:19:25,640 --> 00:19:33,720 else to you you probably get a bit much but from my point of view as I say being as it's 152 00:19:33,720 --> 00:19:43,240 MS month this is sort of thing I wanted to talk about so I wanted to do this last week 153 00:19:43,240 --> 00:19:50,080 but with everything I had going on I just I didn't feel right sitting down recording 154 00:19:50,080 --> 00:19:57,040 a podcast when actually I wasn't in a great headspace I'm still not now there's the issues 155 00:19:57,040 --> 00:20:06,160 are still very much there but it's a case of yes they're there but there's a little 156 00:20:06,160 --> 00:20:10,400 bit of light at the end of the tunnel and that's all I ever asked for if there's a 157 00:20:10,400 --> 00:20:19,480 possibility that we could be looking at a positive outcome on something not a problem 158 00:20:19,480 --> 00:20:30,440 because I do want to look positively at stuff well I think for today we will call that a 159 00:20:30,440 --> 00:20:39,520 wrap we'll call it a wrap I'm now going to attempt to start playing about and editing 160 00:20:39,520 --> 00:20:47,080 this sort of stuff yeah yeah I'm not confident I'm going to be honest I'm really not confident 161 00:20:47,080 --> 00:20:52,920 but I'm going to try my best and as I say those on YouTube I do apologize for the little 162 00:20:52,920 --> 00:20:58,280 bits of the green screen you can still see but hopefully it's a little bit more interesting 163 00:20:58,280 --> 00:21:06,000 looking at my logo which is just there and the bits of trees and waterfall that you can 164 00:21:06,000 --> 00:21:11,720 actually see well I hope you all have a good week as I say if I get chance I will record 165 00:21:11,720 --> 00:21:17,640 another podcast and post it in the week no promises but I'm going to try my best speak 166 00:21:17,640 --> 00:21:37,200 soon bye bye