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Hello, how is everyone? I hope you've all had a good week.

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And yes, I'm back again two weeks in a row.

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Like I promised, we're getting back to normal with this show now.

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So, today I want to start by talking about something that...

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Do you know what? I don't know if anyone else is noticing it.

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It's time. I just want to start talking about time.

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We're already in February.

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It literally feels like maybe ten minutes ago it was Christmas.

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And we're already a full month into the new year.

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It's unbelievable. I know I was always told as you get older, time goes quicker and whatever else.

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Quicker? This isn't quicker. This is like literally just rocket powered.

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It's just flying. I cannot believe it.

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I mean to that end, sitting thinking about what we're going to do in the summer.

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Because actually, it kind of needs planning. It needs thinking about.

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Because yeah, it's just going to get here very, very, very quickly.

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You know, already sitting and thinking about cutting the grass for the first time of the year.

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It just never really feels like it comes around this quick normally.

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Yeah, so it's been a bit rapid. I don't know if anyone else has felt that.

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By all means, chuck me a message and let me know if you have.

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Because honestly, wow. Just wow.

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I just had to start with that kind of comment.

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Because yeah, I mean time just seems non-existent.

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And you know what? I'm going to say that.

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For me, time has been one of those things where it's flown more so since Covid.

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It really is. It's more so since Covid.

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Days felt at that point like they were 24 hours long.

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Now 24 minutes long.

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Literally wake up. Oh look, it's bedtime again.

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It just makes no sense. I don't get it. I don't get it.

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But you know, it is what it is. As I say, I'm obviously getting older.

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By all means, anyone, please tell me I'm not.

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I'd quite gratefully not get older, but there you go.

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Anyway, the first real thing I want to talk about on the show this week

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is something really positive. Really positive.

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Now anyone that follows me on social media

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will certainly on the social media that begins with the letter T

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and another letter T. I don't think I can actually say the names of them on here.

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But there you go.

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But a few like-minded MSers

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came together after I put a bit of a shout out for

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UK and European MSers to come together once a week and just have a conversation

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about MS and our lives with the condition.

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Now I'll be honest with you, the response I got from a lot of people

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was so, so good. There's so many people that were

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were interested in having that conversation and whatever else.

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And the only fair way we could really do it in terms of choosing people was

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those that got in touch first because there was such a big amount.

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I mean, you can only have six people sitting in on a

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live conversation anyway. And I wanted to keep it between four and

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five people just so it wasn't an overload.

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And should we want to, some weeks we can have

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people come on for interviews and things.

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Well, the week just gone Wednesday, we actually had our first sit-down conversation.

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And it was fantastic. It really was such a good event.

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It was probably online for about an hour and a half.

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We had quite a few hundreds of people come through.

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I'm going to be fair, hundreds of people.

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And obviously the show was enjoyed because all in all it's about 25,000

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likes I think we'd been given.

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And we just come together, we worked out plans of what we

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wanted to talk about. And on top of that, we were taking questions from people as well.

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And the questions were very, very good. Very much related to topic.

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And we was able to get our thoughts out a little bit to try and support other people

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that have got MS, that may be struggling with different bits and pieces.

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Now, the one thing I will always say, and I always have said right from day one,

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is that for me, I won't give medical advice and I won't go too deeply into the

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the medical aspects of the condition. I'm not a doctor.

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I'm not a doctor. And again, some of said very regularly, I'm just a random fella

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that got diagnosed with a chronic illness that talks about that chronic illness.

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Now, one of the main things we talked about on the show is something I talked about on

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the podcast last week was the BBC news article about the origins of MS.

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So I'm not going to go into that at all. I did that last week.

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I did that last week. But we also kind of introduced ourselves and

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how our diagnosis come about and how we are with the condition.

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And lastly, we started talking about MS support groups,

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which again, for a first show, I think was a really wise idea, a very, very good idea to

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to sort of point people in the direction of support groups, ways and means they can get

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help with the condition and whatever else. Because again, you know, with regards to

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any chronic illness, and I will say any chronic illness, support is key.

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Support is absolute key. Because when you're

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having an issue that you've never had before, as much as you need the backing of a good medical team,

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you also need to be able to talk to people that actually have got a bit of an idea

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what you're going through. And that's where support groups come in really handy.

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And it's not just support groups. I will say it's social media,

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depending on the social media, and depending on the person you're talking to, the support can be

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absolutely pivotal, absolutely pivotal in getting yourself to a point where you're

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understanding what's going on, why it's going on, and what to think about it.

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And again, with MS is such an individual condition, it really is. It's a condition that

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one of the names for it is the snowflake disease. Because no two people are the same snowflakes,

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no two snowflakes are the same. So pointing people to support groups is absolutely a great thing.

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And again, for me personally, one of the biggest ones for me is the MS Society.

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I do whatever I can to try and help out, raise money, raise money,

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that sort of thing, because the support they offer is absolutely, again, necessary.

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And there's no hidden agenda or anything with them. When you phone up and speak to

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a member of staff at the MS Society, they just want to help. They just want to give you some support

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and try and make you leave the phone call having an idea on feeling a bit better about things.

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So again, that's a big one for me. There is also other support groups on social medias.

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And again, some of the best ones actually are social, the ones where you

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it's a closed group, that's the word I'm looking for, it's a closed group. So anyone outside the

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group can't actually see what you're saying and what's been said to you. And that is again, very,

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very, very good. Because you can say what you like to people, understand what's going on.

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And you get a better idea on everything. And again, from time to time, if you're a member of the

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group, you can say what you like to people. And again, from time to time, if you need to have a rant,

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a lot of the groups are quite comfortable with you doing so. Because we all need to have a rant

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sometimes. This condition kind of forces us to from time to time. You think to yourself,

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why the absolute you know what, am I going through this? So again, having a rant from time to time,

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it's good, it's needed. Because let's just think about the mental health side of it.

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If you're thinking things in your head, and you're not able to get those thoughts out,

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you're struggling and you're wrestling with bad thoughts, pain thoughts, all that sort of stuff.

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You need an outlet. You need an outlet for those kind of those thoughts. Now, that outlet, again,

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for me personally, right at the start, my outlet was what I'm doing now is it was this podcast.

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I would come on. And at the time, it was just me talking into my mobile phone,

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recording it as a video and posting it up. And again, for me, that was so helpful in terms of

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getting the thoughts out, not having those thoughts way heavy on me. Because

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when you're having those kind of issues, the worst possible thing you can do

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is keep things to yourself. Talking about issues, talking about thoughts is the right way forward.

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And again, for me, the biggest thing I would always point you towards, say the MS Society,

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who you can talk to. Or if there's other other issues you think might be a problem,

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your GP, go to your GP, get some get some support for the mental health side of things. Because

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again, we all know you can be doing absolutely brilliant, you can be thinking such incredible

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thoughts and then all of a sudden, MS goes, Nope, I'm going to drag you back down again.

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Well, do you know what? Let it try.

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Let it try because we're all stronger than that. We really are. I know sometimes it doesn't feel

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like it, but actually we are we've all got an ability to overcome the negative.

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That's the way I like to look at that is an ability to overcome the negative. Because

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with regards to the negative, a condition like MS, it wants you to think badly. Because if you

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think badly, it's going to win, it's going to take hold of you. Now, don't get me wrong, under no

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stretch am I saying that the power of thought can dissipate the negative. But it's not going to

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take hold of you. Under no stretch am I saying that the power of thought can dispose of a condition

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like MS. I'm never going to say that because it's totally inaccurate and wrong. But it can help you

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try and try and fight away the bad days in terms of mentally. Physically, nothing we can do,

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nothing we can do at all. But mentally, if we just try and push through a little bit more, it can help.

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I'm not going to help everyone, I get that. But it might help some. Now, coming away from that side of it,

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I want to make mention of

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what I'm seeing for myself. Because I'm going to be totally honest, of late I've noticed that

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things haven't been necessarily good and easy. And I know I did mention this in the previous podcast.

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But it does definitely seem as though I'm having to take a bit more time over things. Like now,

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I'm sat here talking and I'm noticing that I've got something in my head I want to say,

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but I say something before and it's gone. It is forgotten. Which is really frustrating.

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But if I just take an extra second or two, I'm going to be able to get back to the point.

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If I just take an extra second or so, I'm able to regather my thought process and we can get there.

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And as regards to that, again, this past week I've had a meeting, anyone that's been with me

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for a long time will know that I was helping out with a couple of studies at local universities.

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And the cognitive study that I'm helping with, I had my last meeting with them online

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this past week and I was doing some tests and things. And some of the tests, I'll be honest

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with you, they're really difficult. Really, really difficult. For instance, I'll be sat

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and the person I'm talking to will say words to me for a good minute or so. Loads of different

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words and I've got to try and remember what each of those words says. And it really is not easy

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at all. On top of that, telling me a story and I've got to try and memorize the story and recount

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the story back to them. Yeah, I'm going to be honest with you, it was difficult. I really did

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struggle. But since I've come off my initial painkillers, which again, I'm going to name them,

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I've done it previously, it was gabapentin. Since I've come off those, I've noticed my short term

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memory has improved ever so slightly. It's not massive, it's not huge at all, but it has

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improved ever so slightly. Now that is something I'm pleased about. You know, when your GP says to

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you, you've got short term memory issues because of MS, I'm now going to give you some painkillers,

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you're going to take them. And it took time, like I said, 15 months, 15 months I was on these

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painkillers. And it got to a point like, and again, I've mentioned it, so I don't want to go too deep

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into it. But it got to a point whereby I'm, I'm sat in my living room and just feeling like I'm

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not there. So it was a case of come off those painkillers because the GP confirmed those

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painkillers do also cause short term memory issues. I'm going to say, I wasn't going to,

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I'm going to say it. That is so counterintuitive in my opinion. If you know somebody's got a

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condition that can cause cognitive short term memory issues, don't give them painkillers that

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potentially can make that worse. Now I get it. Those painkillers are designed to help with

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that type of condition and those type of nerve pains. There's got to be something that can

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help with that. Because honestly, again, I'll use the terms counterintuitive. You're not,

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you're doing something that you know potentially could make an already difficult situation,

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slightly worse. Use your mind a little bit in terms of the mental health aspect of it for a

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a GP or whoever else, because again, there's, there's other things out there's got to be

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other things out. There's got to be other ways of doing this sort of stuff. It's, it's not all based

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on take that one tablet, that tablet is amazing. It's going to cure all your, all your pains. No,

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we know that's not the case. We just know that's not the case. But yeah, I mean, so

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there's that kind of thought and what I have to say, doing the sort of testing I was doing

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in that meeting, I did notice actually my short term memory had improved ever so slightly. And

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again, keywords there ever so slightly, it was not perfect. It was far from perfect. You know,

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trying to recount a story and I'm sort of thinking to myself, what was said then? What was,

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yeah, wow. And it was only when memory recall effectively kicked in, when the tester would say

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a word back to me and say, oh, was this word said? It would click in my brain. Yeah, actually that

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word was said or no, that one wasn't. So in terms of recall, it was coming. It was getting there.

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It was getting there and it was helpful. It was genuinely, genuinely helpful.

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And do you know what? I don't want to keep this episode seeming negative because actually I'm

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going to be fair. I am in such a positive head space. I really am in a massive, massive way.

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I want to sort of flip it around now to some of the other things that I'm doing and I'm trying to

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get done. The gaming aspect of what I'm doing and again, it's been talked about previously,

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but I need to say it. Sitting down, playing a computer game and uploading videos to YouTube

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and I'm seeing growth, real growth on that channel, which is one of the reasons why I

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separated the channels. So the podcast now has its own separate channel. It doesn't go onto the same

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as the gaming because that way I can see where the differences lie. What I can also do is it

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separates those that want to see the gaming content from those that want to see this kind of content.

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And again, it's going to be difficult to grow the new channel and whatever else. I fully understand

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that, you know, to get this channel to where my now gaming channel is, it's going to take many,

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many months, if not a couple of years. I'll be totally fair. It really is. But it's worth it.

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It's worth it because then everyone knows where to go for the right kind of content for them.

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And again, it's something that I actually really enjoy doing. I thoroughly, thoroughly enjoy it,

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you know, learning to edit and everything else. It comes with time. It does come with time.

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But again, even with this show, I'm sort of editing it and whatever else now.

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I kind of enjoy it. I'm going to be honest, I do kind of enjoy it. I've seen it as a bit of a

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challenge at times because again, my level of knowledge of technical stuff is so minor, it's

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unreal. It really is poor. But I'm getting there. I am getting there. And one of the things I can

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do now is I'm going to start streaming games, live streaming, because I did try doing that, but the

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internet we had at the time was absolutely atrocious. Honestly, it was awful. But I have now

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changed service providers. So I'm kind of hoping because their speed is a lot quicker now. It's a

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lot quicker. So I'm kind of hoping that that's going to have a bit of a positive impact on that

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type of thing. Because again, coming back to the sort of things that you can do, kind of to try

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and stick two fingers up to a condition like MS, I'm going to be doing a lot of streaming games.

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Kind of to try and stick two fingers up to a condition like MS. You know, it took the

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ability to go out to work away from me. We all know that at this point, it took that ability away.

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So I'm learning new ways. And one of the ways that actually I look at as a job is the streaming side

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a bit. You know, I'm really cracking back on with writing the columns for MS News today.

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I've just turned in another column today. I'm not going to talk about what that column was based on,

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because again, that needs to be released and everything else first.

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But it's things like that, that I'm doing, I'm looking at doing,

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that are positive. It gives me something to aim for. And again, I'm at a point now where I'm coming

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out to my studio more often to keep myself ticking over. Because as I said in the last podcast,

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after New Year, around New Year and just after, things had become very difficult for me in a

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mental aspect because I was feeling very low, very down, about not working. And I was feeling

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very down. Again, it circles its way back round to multiple sclerosis, taking things away. And in my

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personal thought, let it take away what it wants to take because I'm going to take back. I am going

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to take back. You know, this condition will have its day. It will do what it needs to do. So will I.

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I literally will do what I need to do also to be myself, to be happy and to show my family that

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actually, as evil as the condition is, I'm still a good person. I'm still the person I've always

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been. And I'm actually proud to be who I am. That's my thought on that. In the second part of the show

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today, I'm going to talk about my letter I had the other day from my MS team about treatment.

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Let's discuss.

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All right, so let's now discuss the treatment. So for myself, I'm on Ocreluzumab, Ocrevus. And

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in terms of that, it's an infusion treatment, which means I go to hospital once every six months.

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And I'm in there for around six hours, give or take. There is an option at some point in the

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future if my body can handle it, it can be done a bit quicker. I believe some people slept four hours.

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For me personally, I have had issues whereby I've had a bit of a reaction to it. So

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to part way through, I've been getting sort of a rash on the top of my head.

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And it's they have to slow the drip down so that the rash goes away.

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Which is again, I don't mind that, you know, if it's six hours, it's once every six months.

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Who cares? You really don't make a difference as long as the treatment is helping.

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When I went for my first half a bag of treatment, because with Ocrevus, what you do

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is your first lot of treatment is done in two. So you have half a bag of your treatment and in

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15 days later, you have your next half a bag and then it goes to six monthly.

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You have your full your full treatments. When I had that first lot, they gave me a booklet

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that explains how the treatment works. This booklet they've given me is for primary progressive.

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Again, that is what I'm told my my MS is.

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So what I'm going to do, because I want to get the information correct, I've got the booklet with me

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and I'm going to. I'm not going to read exactly what it's saying, but I'm going to give you an

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idea on what it's telling us about the treatment itself. So as it's saying here, it is a disease

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modifying treatment, which means it's aiming to slow down the progression and try and, to an extent,

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bring MS under control. It's never going to control it to too much of an extent, but it's

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aiming to slow things down. Basically, what it's doing is it is.

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Trying to stop the B cells, it's targeting your B cells because you've got the B and T now combined.

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What they're supposed to do is they're supposed to fight off infection with MS.

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What they're actually doing is they're mistakenly attacking your own B cells.

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So what they're doing is they're trying to stop the B cells.

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What they're actually doing is they're mistakenly attacking your own nervous system and they're

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stripping away the myelin, which is the fatty tissue on the nerve. So it's aiming to inhibit

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the B cells ever so slightly because the T cells themselves, they don't actually.

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Alone, they don't cause much damage. When they're linked with a B cell, they do.

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That's where the issue arises. So it's aiming to kind of limit the B cells ability to cause

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the damage that they're causing. So again, I'm not reading from this. I'm just getting my facts

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right before I relay them. And as it's saying here, it removes the B cells, not all of them,

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but it's going to remove some of them, which is going to lessen the impact of them trying to

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team up with the T cells and go after that yummy myelin that they think tastes so nice.

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Don't taste nice. Come McDonald's, wherever, go anywhere. Get yourself something to eat.

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That's not part of my central nervous system. That'd be pretty awesome.

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But yeah, one of the things I've got to say, I had to make that joke. It was just rude not to.

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One of the things with regards to that by removing the B cells, it does leave

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people that are on that particular treatment open to infection

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because you've not got your B cells, they're helping your T cells attack infection.

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So not only is it helpful in terms of trying to slow the progression of the disease down,

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it can also make things a little bit more difficult in terms of other illnesses kicking in.

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Again, that's part and parcel of it. You know, you can't win everything. That's just a fact.

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You can't win everything. But again, if the treatment is going to help and it's going to stop,

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it's going to slow the progression to the point where you're able to live a more comfortable life.

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In my opinion, it's worth it. It's worth it. Some don't agree and that's fine.

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For me personally, I do. I'm grateful for the fact that I'm on the treatment. I'll be totally honest.

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Right, so I'm just going to go through the book here and bits and pieces that come up.

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I'm going to mention because again, it is very, very handy to know this kind of information.

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It really, really is. As it's saying here is 12 hours before your ocrevus treatment,

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not to take blood pressure tablet. That does make sense. I'm not on any blood pressure tablet,

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so that's okay. And again, there's other things that they do previous to the treatment.

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And before each new treatment is they will check you for certain infections, things like hepatitis,

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just to ensure that you are clear of that. Because again, if you have an infection like that,

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it can be made a lot worse by having your immune system lowered with the treatment.

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So again, that is a real good thing for me personally. I've got my blood tests coming up.

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They are, I think it's about 10 days before the treatment is about the optimum time to get the

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blood tests done to understand where you are and if it's safe for the treatment to go ahead.

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Also, it's important to know that you're not on the treatment. If you're on the treatment,

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you're not going to get a fever, a cold, cough, anything like that. Let your team know so that

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your treatment can be put back a little bit. Because once again, if you've got those kind of

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issues, you don't want to be lowering your immune system when you've already got a problem going on.

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It just wouldn't make any sense, would it? Let's be totally honest. Now, it's also given some really

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good advice actually about on the day of the infusion. Now for me personally, as bits and

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pieces I do, on the day of infusion, take some bits with you. Because one, you're going to want

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stuff to eat. That's just a fact. You're going to want drinks because staying hydrated when you're

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on that kind of treatment as well is very, very, very important. It's really something necessary.

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I'm going to be fair. You need to do it. Entertainment. Because again, for me, if I'm

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sat there for six hours, I don't really want to just be sat there looking at a wall. I want

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something to do. Now for me, I take my laptop and I'll blog on my website, Mike's MSJourney.com,

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about how the treatment's going. Because again, I think it's quite important for people to be able

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to read that and understand what is actually going on on the day of treatment, how I'm feeling,

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and whatever else. Because again, somebody that's, say, new and said, oh, I've got my first

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treatment coming up. If they can read what somebody else is going through on the day of treatment,

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that might help them to stay calm. Because again, it is quite a scary thing. Let's be totally

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honest. It is quite a scary thing because again, as it says there, you're lowering your immune

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system. You're literally lowering your immune system. So you need to understand every aspect of

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it. On top of that, play games on the phone. I've got my phone in my hand as well. I'll play games

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on my phone. I'm quite lucky because the room that I go into for my treatment, I have others there

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who are normally, it's normally Tossabri, which is another MS treatment. And we'll sit and chat.

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I've got my MS nurse there. I'll be chatting to the nurse. I'll be chatting to other MSers.

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And it's good fun. For something that's such a serious thing to go through, it can actually

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be quite good fun. It can be just nice to talk to people that understand what's going on.

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And we don't just talk MS. We talk all sorts of stuff. Honestly, it helps. You know,

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if we can get each other through it, it's worthwhile. It really is. So again, take some

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food with you, take some drinks with you, take some entertainment with you, because you're going to

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need it. You really are. I mean, even if you want to get your head down and go to sleep, you can.

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I can't imagine you're going to be able to do that all the way through your treatment.

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You're going to want to have stuff there that you find fun, you find entertaining.

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It's worth doing. It's just worth doing. And I am right in what I'm saying in terms of 15 days

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between you have two half bags at the start. I've just looked at that. But again, some of the things

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that will happen on the day, you will have your pre medications put through your system, which is

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things like antihistamine, which again, should hopefully help. Now, going on the basis of

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antihistamine, what I will say in the three or four days after, take antihistamine,

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because again, it can be quite handy to give you give your body that ability to sort of fight

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back a little bit, because again, even in a couple of days after there is a potential that you can

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suffer rashes and bits and pieces like that. So if you're taking antihistamine, it can help.

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But yeah, on the day, they will put that through your system anyway.

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Then once that's gone through, that's when they'll start putting the actual medication,

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the infusion through your system. Once the infusion itself is done, they'll flush your system out.

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And give me a second, I'm just just going to check what that is. I'm pretty confident already. No.

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Yeah, basically, it's like a saline solution that goes through your system. So again, I wanted to be

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certain on that. And again, it's just to flush you through. And after that, they just they monitor

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you for a bit just to make sure everything is okay. And then it's discharge, which is the good bit

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means you get going. Now, one of the things that I've noticed is that, you know, I've seen a lot of

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quite a bit of side effects and that's on a section of my leg where it's coming off of some

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ligament, which is saying things like things along this line I've heard from friends or family

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intelligent or friends who are highly specific about sar火. It's always one of those things

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that ever happens during the day. And so, yeah, I think so. But, yeah, it's the combo that,

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you know, goes around for a while telling you what is right for the treatment and it's still

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is excess fatigue, tiredness, all that sort of stuff in the days following and

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again I've had that whereby I mean I'd be honest with you a couple of days after I

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mean I just wanted to sleep solidly that was after my first fall back I just

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wanted to sleep so I did. I relaxed I was calm chilled and spent time just doing

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what I felt was necessary which very much was R&R because again sometimes you

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need to do that you just have to do that and again as it's saying here in the

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afters skin reactions, throat irritation and pain, shortness of breath

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shortness of breath, flushing which again I did have that after the first

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half bag my face was very very red for a day or so it did go it did go things

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like fevers I've said that headaches, dizziness, feeling a bit Tom and Dick

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sick and fast heartbeat again it's all stuff that is known but should it become

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too much of an issue any of that immediately seek medical attention

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that's the biggest thing that I can tell you if you're concerned at all always

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always always get medical help that's just the way it needs to be I'm going to

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be honest that you have to now again for me going on

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ocrevas I did find that quite daunting quite daunting and even now I mean I'm

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sat here thinking in a month's time just over a month actually just over a month's

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time my immune system is going to get said kicked in again well you know if it

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means everything slows down MS wise you know what I'll take that I'll take that

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it's a bit frightening it's a bit scary but you know what it's necessary it's

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necessary treatment is something that's quite big now again I mean this this is

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a different section of the show I mean I'll be honest with you I don't tend to

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sort of go in to things too much unless I can prove what I'm saying and as I say

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I've got the book with me to ensure that what I'm saying is accurate and I'm not

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wording it exactly as the book does but the wording is as good as what the book

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is saying so I'm just I'm just ensuring that the correct information is being

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given because again that's a big thing it's a big thing making sure the

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information is correct now I'm going to end the show there today and I will be

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back again next week and what I will say I know this show may not have seemed

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overly positive do you know what it actually is it really is it's something

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that I wanted to talk about you know I wanted to talk about the fact that some

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of us MS's on certain social media have come together to try and talk about our

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our lives with the condition on top of that I will say some of our American

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friends are also doing a show very similar and it is fantastic very very

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very good yeah I'll be fair that's the reason we wanted to do ours because then

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you've got the two different time zones both having access to like-minded people

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that's probably the best way I can put it yeah I'm very proud of what we're

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doing very proud of it the next episode of that will be on Wednesday and as I

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say he's live and we are getting used to it ourselves but very very positive

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reviews come back from it really really positive so by all means nip across to

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the social media that has got the same name as what watch does because watches

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they sort of as you listen to them I go tick tock and that you know so pop

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across pop across come and come and have a listen in see if we can maybe answer

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some questions for you or or just help maybe we can put a smile on your face I

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don't know we'll try our best and again I wanted to talk about the treatment

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aspect because again that's coming up for me now and strangely enough I'm

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looking forward to it I hope you all have a good week I thoroughly enjoyed

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recording this episode I'm gonna be honest and I will speak to you all again

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in a week's time speak soon friends bye bye