Hello, how is everyone? I hope you've all had a good week.
And yes, I'm back again two weeks in a row.
Like I promised, we're getting back to normal with this show now.
So, today I want to start by talking about something that...
Do you know what? I don't know if anyone else is noticing it.
It's time. I just want to start talking about time.
We're already in February.
It literally feels like maybe ten minutes ago it was Christmas.
And we're already a full month into the new year.
It's unbelievable. I know I was always told as you get older, time goes quicker and whatever else.
Quicker? This isn't quicker. This is like literally just rocket powered.
It's just flying. I cannot believe it.
I mean to that end, sitting thinking about what we're going to do in the summer.
Because actually, it kind of needs planning. It needs thinking about.
Because yeah, it's just going to get here very, very, very quickly.
You know, already sitting and thinking about cutting the grass for the first time of the year.
It just never really feels like it comes around this quick normally.
Yeah, so it's been a bit rapid. I don't know if anyone else has felt that.
By all means, chuck me a message and let me know if you have.
Because honestly, wow. Just wow.
I just had to start with that kind of comment.
Because yeah, I mean time just seems non-existent.
And you know what? I'm going to say that.
For me, time has been one of those things where it's flown more so since Covid.
It really is. It's more so since Covid.
Days felt at that point like they were 24 hours long.
Now 24 minutes long.
Literally wake up. Oh look, it's bedtime again.
It just makes no sense. I don't get it. I don't get it.
But you know, it is what it is. As I say, I'm obviously getting older.
By all means, anyone, please tell me I'm not.
I'd quite gratefully not get older, but there you go.
Anyway, the first real thing I want to talk about on the show this week
is something really positive. Really positive.
Now anyone that follows me on social media
will certainly on the social media that begins with the letter T
and another letter T. I don't think I can actually say the names of them on here.
But there you go.
But a few like-minded MSers
came together after I put a bit of a shout out for
UK and European MSers to come together once a week and just have a conversation
about MS and our lives with the condition.
Now I'll be honest with you, the response I got from a lot of people
was so, so good. There's so many people that were
were interested in having that conversation and whatever else.
And the only fair way we could really do it in terms of choosing people was
those that got in touch first because there was such a big amount.
I mean, you can only have six people sitting in on a
live conversation anyway. And I wanted to keep it between four and
five people just so it wasn't an overload.
And should we want to, some weeks we can have
people come on for interviews and things.
Well, the week just gone Wednesday, we actually had our first sit-down conversation.
And it was fantastic. It really was such a good event.
It was probably online for about an hour and a half.
We had quite a few hundreds of people come through.
I'm going to be fair, hundreds of people.
And obviously the show was enjoyed because all in all it's about 25,000
likes I think we'd been given.
And we just come together, we worked out plans of what we
wanted to talk about. And on top of that, we were taking questions from people as well.
And the questions were very, very good. Very much related to topic.
And we was able to get our thoughts out a little bit to try and support other people
that have got MS, that may be struggling with different bits and pieces.
Now, the one thing I will always say, and I always have said right from day one,
is that for me, I won't give medical advice and I won't go too deeply into the
the medical aspects of the condition. I'm not a doctor.
I'm not a doctor. And again, some of said very regularly, I'm just a random fella
that got diagnosed with a chronic illness that talks about that chronic illness.
Now, one of the main things we talked about on the show is something I talked about on
the podcast last week was the BBC news article about the origins of MS.
So I'm not going to go into that at all. I did that last week.
I did that last week. But we also kind of introduced ourselves and
how our diagnosis come about and how we are with the condition.
And lastly, we started talking about MS support groups,
which again, for a first show, I think was a really wise idea, a very, very good idea to
to sort of point people in the direction of support groups, ways and means they can get
help with the condition and whatever else. Because again, you know, with regards to
any chronic illness, and I will say any chronic illness, support is key.
Support is absolute key. Because when you're
having an issue that you've never had before, as much as you need the backing of a good medical team,
you also need to be able to talk to people that actually have got a bit of an idea
what you're going through. And that's where support groups come in really handy.
And it's not just support groups. I will say it's social media,
depending on the social media, and depending on the person you're talking to, the support can be
absolutely pivotal, absolutely pivotal in getting yourself to a point where you're
understanding what's going on, why it's going on, and what to think about it.
And again, with MS is such an individual condition, it really is. It's a condition that
one of the names for it is the snowflake disease. Because no two people are the same snowflakes,
no two snowflakes are the same. So pointing people to support groups is absolutely a great thing.
And again, for me personally, one of the biggest ones for me is the MS Society.
I do whatever I can to try and help out, raise money, raise money,
that sort of thing, because the support they offer is absolutely, again, necessary.
And there's no hidden agenda or anything with them. When you phone up and speak to
a member of staff at the MS Society, they just want to help. They just want to give you some support
and try and make you leave the phone call having an idea on feeling a bit better about things.
So again, that's a big one for me. There is also other support groups on social medias.
And again, some of the best ones actually are social, the ones where you
it's a closed group, that's the word I'm looking for, it's a closed group. So anyone outside the
group can't actually see what you're saying and what's been said to you. And that is again, very,
very, very good. Because you can say what you like to people, understand what's going on.
And you get a better idea on everything. And again, from time to time, if you're a member of the
group, you can say what you like to people. And again, from time to time, if you need to have a rant,
a lot of the groups are quite comfortable with you doing so. Because we all need to have a rant
sometimes. This condition kind of forces us to from time to time. You think to yourself,
why the absolute you know what, am I going through this? So again, having a rant from time to time,
it's good, it's needed. Because let's just think about the mental health side of it.
If you're thinking things in your head, and you're not able to get those thoughts out,
you're struggling and you're wrestling with bad thoughts, pain thoughts, all that sort of stuff.
You need an outlet. You need an outlet for those kind of those thoughts. Now, that outlet, again,
for me personally, right at the start, my outlet was what I'm doing now is it was this podcast.
I would come on. And at the time, it was just me talking into my mobile phone,
recording it as a video and posting it up. And again, for me, that was so helpful in terms of
getting the thoughts out, not having those thoughts way heavy on me. Because
when you're having those kind of issues, the worst possible thing you can do
is keep things to yourself. Talking about issues, talking about thoughts is the right way forward.
And again, for me, the biggest thing I would always point you towards, say the MS Society,
who you can talk to. Or if there's other other issues you think might be a problem,
your GP, go to your GP, get some get some support for the mental health side of things. Because
again, we all know you can be doing absolutely brilliant, you can be thinking such incredible
thoughts and then all of a sudden, MS goes, Nope, I'm going to drag you back down again.
Well, do you know what? Let it try.
Let it try because we're all stronger than that. We really are. I know sometimes it doesn't feel
like it, but actually we are we've all got an ability to overcome the negative.
That's the way I like to look at that is an ability to overcome the negative. Because
with regards to the negative, a condition like MS, it wants you to think badly. Because if you
think badly, it's going to win, it's going to take hold of you. Now, don't get me wrong, under no
stretch am I saying that the power of thought can dissipate the negative. But it's not going to
take hold of you. Under no stretch am I saying that the power of thought can dispose of a condition
like MS. I'm never going to say that because it's totally inaccurate and wrong. But it can help you
try and try and fight away the bad days in terms of mentally. Physically, nothing we can do,
nothing we can do at all. But mentally, if we just try and push through a little bit more, it can help.
I'm not going to help everyone, I get that. But it might help some. Now, coming away from that side of it,
I want to make mention of
what I'm seeing for myself. Because I'm going to be totally honest, of late I've noticed that
things haven't been necessarily good and easy. And I know I did mention this in the previous podcast.
But it does definitely seem as though I'm having to take a bit more time over things. Like now,
I'm sat here talking and I'm noticing that I've got something in my head I want to say,
but I say something before and it's gone. It is forgotten. Which is really frustrating.
But if I just take an extra second or two, I'm going to be able to get back to the point.
If I just take an extra second or so, I'm able to regather my thought process and we can get there.
And as regards to that, again, this past week I've had a meeting, anyone that's been with me
for a long time will know that I was helping out with a couple of studies at local universities.
And the cognitive study that I'm helping with, I had my last meeting with them online
this past week and I was doing some tests and things. And some of the tests, I'll be honest
with you, they're really difficult. Really, really difficult. For instance, I'll be sat
and the person I'm talking to will say words to me for a good minute or so. Loads of different
words and I've got to try and remember what each of those words says. And it really is not easy
at all. On top of that, telling me a story and I've got to try and memorize the story and recount
the story back to them. Yeah, I'm going to be honest with you, it was difficult. I really did
struggle. But since I've come off my initial painkillers, which again, I'm going to name them,
I've done it previously, it was gabapentin. Since I've come off those, I've noticed my short term
memory has improved ever so slightly. It's not massive, it's not huge at all, but it has
improved ever so slightly. Now that is something I'm pleased about. You know, when your GP says to
you, you've got short term memory issues because of MS, I'm now going to give you some painkillers,
you're going to take them. And it took time, like I said, 15 months, 15 months I was on these
painkillers. And it got to a point like, and again, I've mentioned it, so I don't want to go too deep
into it. But it got to a point whereby I'm, I'm sat in my living room and just feeling like I'm
not there. So it was a case of come off those painkillers because the GP confirmed those
painkillers do also cause short term memory issues. I'm going to say, I wasn't going to,
I'm going to say it. That is so counterintuitive in my opinion. If you know somebody's got a
condition that can cause cognitive short term memory issues, don't give them painkillers that
potentially can make that worse. Now I get it. Those painkillers are designed to help with
that type of condition and those type of nerve pains. There's got to be something that can
help with that. Because honestly, again, I'll use the terms counterintuitive. You're not,
you're doing something that you know potentially could make an already difficult situation,
slightly worse. Use your mind a little bit in terms of the mental health aspect of it for a
a GP or whoever else, because again, there's, there's other things out there's got to be
other things out. There's got to be other ways of doing this sort of stuff. It's, it's not all based
on take that one tablet, that tablet is amazing. It's going to cure all your, all your pains. No,
we know that's not the case. We just know that's not the case. But yeah, I mean, so
there's that kind of thought and what I have to say, doing the sort of testing I was doing
in that meeting, I did notice actually my short term memory had improved ever so slightly. And
again, keywords there ever so slightly, it was not perfect. It was far from perfect. You know,
trying to recount a story and I'm sort of thinking to myself, what was said then? What was,
yeah, wow. And it was only when memory recall effectively kicked in, when the tester would say
a word back to me and say, oh, was this word said? It would click in my brain. Yeah, actually that
word was said or no, that one wasn't. So in terms of recall, it was coming. It was getting there.
It was getting there and it was helpful. It was genuinely, genuinely helpful.
And do you know what? I don't want to keep this episode seeming negative because actually I'm
going to be fair. I am in such a positive head space. I really am in a massive, massive way.
I want to sort of flip it around now to some of the other things that I'm doing and I'm trying to
get done. The gaming aspect of what I'm doing and again, it's been talked about previously,
but I need to say it. Sitting down, playing a computer game and uploading videos to YouTube
and I'm seeing growth, real growth on that channel, which is one of the reasons why I
separated the channels. So the podcast now has its own separate channel. It doesn't go onto the same
as the gaming because that way I can see where the differences lie. What I can also do is it
separates those that want to see the gaming content from those that want to see this kind of content.
And again, it's going to be difficult to grow the new channel and whatever else. I fully understand
that, you know, to get this channel to where my now gaming channel is, it's going to take many,
many months, if not a couple of years. I'll be totally fair. It really is. But it's worth it.
It's worth it because then everyone knows where to go for the right kind of content for them.
And again, it's something that I actually really enjoy doing. I thoroughly, thoroughly enjoy it,
you know, learning to edit and everything else. It comes with time. It does come with time.
But again, even with this show, I'm sort of editing it and whatever else now.
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
challenge at times because again, my level of knowledge of technical stuff is so minor, it's
unreal. It really is poor. But I'm getting there. I am getting there. And one of the things I can
do now is I'm going to start streaming games, live streaming, because I did try doing that, but the
internet we had at the time was absolutely atrocious. Honestly, it was awful. But I have now
changed service providers. So I'm kind of hoping because their speed is a lot quicker now. It's a
lot quicker. So I'm kind of hoping that that's going to have a bit of a positive impact on that
type of thing. Because again, coming back to the sort of things that you can do, kind of to try
and stick two fingers up to a condition like MS, I'm going to be doing a lot of streaming games.
Kind of to try and stick two fingers up to a condition like MS. You know, it took the
ability to go out to work away from me. We all know that at this point, it took that ability away.
So I'm learning new ways. And one of the ways that actually I look at as a job is the streaming side
a bit. You know, I'm really cracking back on with writing the columns for MS News today.
I've just turned in another column today. I'm not going to talk about what that column was based on,
because again, that needs to be released and everything else first.
But it's things like that, that I'm doing, I'm looking at doing,
that are positive. It gives me something to aim for. And again, I'm at a point now where I'm coming
out to my studio more often to keep myself ticking over. Because as I said in the last podcast,
after New Year, around New Year and just after, things had become very difficult for me in a
mental aspect because I was feeling very low, very down, about not working. And I was feeling
very down. Again, it circles its way back round to multiple sclerosis, taking things away. And in my
personal thought, let it take away what it wants to take because I'm going to take back. I am going
to take back. You know, this condition will have its day. It will do what it needs to do. So will I.
I literally will do what I need to do also to be myself, to be happy and to show my family that
actually, as evil as the condition is, I'm still a good person. I'm still the person I've always
been. And I'm actually proud to be who I am. That's my thought on that. In the second part of the show
today, I'm going to talk about my letter I had the other day from my MS team about treatment.
Let's discuss.
All right, so let's now discuss the treatment. So for myself, I'm on Ocreluzumab, Ocrevus. And
in terms of that, it's an infusion treatment, which means I go to hospital once every six months.
And I'm in there for around six hours, give or take. There is an option at some point in the
future if my body can handle it, it can be done a bit quicker. I believe some people slept four hours.
For me personally, I have had issues whereby I've had a bit of a reaction to it. So
to part way through, I've been getting sort of a rash on the top of my head.
And it's they have to slow the drip down so that the rash goes away.
Which is again, I don't mind that, you know, if it's six hours, it's once every six months.
Who cares? You really don't make a difference as long as the treatment is helping.
When I went for my first half a bag of treatment, because with Ocrevus, what you do
is your first lot of treatment is done in two. So you have half a bag of your treatment and in
15 days later, you have your next half a bag and then it goes to six monthly.
You have your full your full treatments. When I had that first lot, they gave me a booklet
that explains how the treatment works. This booklet they've given me is for primary progressive.
Again, that is what I'm told my my MS is.
So what I'm going to do, because I want to get the information correct, I've got the booklet with me
and I'm going to. I'm not going to read exactly what it's saying, but I'm going to give you an
idea on what it's telling us about the treatment itself. So as it's saying here, it is a disease
modifying treatment, which means it's aiming to slow down the progression and try and, to an extent,
bring MS under control. It's never going to control it to too much of an extent, but it's
aiming to slow things down. Basically, what it's doing is it is.
Trying to stop the B cells, it's targeting your B cells because you've got the B and T now combined.
What they're supposed to do is they're supposed to fight off infection with MS.
What they're actually doing is they're mistakenly attacking your own B cells.
So what they're doing is they're trying to stop the B cells.
What they're actually doing is they're mistakenly attacking your own nervous system and they're
stripping away the myelin, which is the fatty tissue on the nerve. So it's aiming to inhibit
the B cells ever so slightly because the T cells themselves, they don't actually.
Alone, they don't cause much damage. When they're linked with a B cell, they do.
That's where the issue arises. So it's aiming to kind of limit the B cells ability to cause
the damage that they're causing. So again, I'm not reading from this. I'm just getting my facts
right before I relay them. And as it's saying here, it removes the B cells, not all of them,
but it's going to remove some of them, which is going to lessen the impact of them trying to
team up with the T cells and go after that yummy myelin that they think tastes so nice.
Don't taste nice. Come McDonald's, wherever, go anywhere. Get yourself something to eat.
That's not part of my central nervous system. That'd be pretty awesome.
But yeah, one of the things I've got to say, I had to make that joke. It was just rude not to.
One of the things with regards to that by removing the B cells, it does leave
people that are on that particular treatment open to infection
because you've not got your B cells, they're helping your T cells attack infection.
So not only is it helpful in terms of trying to slow the progression of the disease down,
it can also make things a little bit more difficult in terms of other illnesses kicking in.
Again, that's part and parcel of it. You know, you can't win everything. That's just a fact.
You can't win everything. But again, if the treatment is going to help and it's going to stop,
it's going to slow the progression to the point where you're able to live a more comfortable life.
In my opinion, it's worth it. It's worth it. Some don't agree and that's fine.
For me personally, I do. I'm grateful for the fact that I'm on the treatment. I'll be totally honest.
Right, so I'm just going to go through the book here and bits and pieces that come up.
I'm going to mention because again, it is very, very handy to know this kind of information.
It really, really is. As it's saying here is 12 hours before your ocrevus treatment,
not to take blood pressure tablet. That does make sense. I'm not on any blood pressure tablet,
so that's okay. And again, there's other things that they do previous to the treatment.
And before each new treatment is they will check you for certain infections, things like hepatitis,
just to ensure that you are clear of that. Because again, if you have an infection like that,
it can be made a lot worse by having your immune system lowered with the treatment.
So again, that is a real good thing for me personally. I've got my blood tests coming up.
They are, I think it's about 10 days before the treatment is about the optimum time to get the
blood tests done to understand where you are and if it's safe for the treatment to go ahead.
Also, it's important to know that you're not on the treatment. If you're on the treatment,
you're not going to get a fever, a cold, cough, anything like that. Let your team know so that
your treatment can be put back a little bit. Because once again, if you've got those kind of
issues, you don't want to be lowering your immune system when you've already got a problem going on.
It just wouldn't make any sense, would it? Let's be totally honest. Now, it's also given some really
good advice actually about on the day of the infusion. Now for me personally, as bits and
pieces I do, on the day of infusion, take some bits with you. Because one, you're going to want
stuff to eat. That's just a fact. You're going to want drinks because staying hydrated when you're
on that kind of treatment as well is very, very, very important. It's really something necessary.
I'm going to be fair. You need to do it. Entertainment. Because again, for me, if I'm
sat there for six hours, I don't really want to just be sat there looking at a wall. I want
something to do. Now for me, I take my laptop and I'll blog on my website, Mike's MSJourney.com,
about how the treatment's going. Because again, I think it's quite important for people to be able
to read that and understand what is actually going on on the day of treatment, how I'm feeling,
and whatever else. Because again, somebody that's, say, new and said, oh, I've got my first
treatment coming up. If they can read what somebody else is going through on the day of treatment,
that might help them to stay calm. Because again, it is quite a scary thing. Let's be totally
honest. It is quite a scary thing because again, as it says there, you're lowering your immune
system. You're literally lowering your immune system. So you need to understand every aspect of
it. On top of that, play games on the phone. I've got my phone in my hand as well. I'll play games
on my phone. I'm quite lucky because the room that I go into for my treatment, I have others there
who are normally, it's normally Tossabri, which is another MS treatment. And we'll sit and chat.
I've got my MS nurse there. I'll be chatting to the nurse. I'll be chatting to other MSers.
And it's good fun. For something that's such a serious thing to go through, it can actually
be quite good fun. It can be just nice to talk to people that understand what's going on.
And we don't just talk MS. We talk all sorts of stuff. Honestly, it helps. You know,
if we can get each other through it, it's worthwhile. It really is. So again, take some
food with you, take some drinks with you, take some entertainment with you, because you're going to
need it. You really are. I mean, even if you want to get your head down and go to sleep, you can.
I can't imagine you're going to be able to do that all the way through your treatment.
You're going to want to have stuff there that you find fun, you find entertaining.
It's worth doing. It's just worth doing. And I am right in what I'm saying in terms of 15 days
between you have two half bags at the start. I've just looked at that. But again, some of the things
that will happen on the day, you will have your pre medications put through your system, which is
things like antihistamine, which again, should hopefully help. Now, going on the basis of
antihistamine, what I will say in the three or four days after, take antihistamine,
because again, it can be quite handy to give you give your body that ability to sort of fight
back a little bit, because again, even in a couple of days after there is a potential that you can
suffer rashes and bits and pieces like that. So if you're taking antihistamine, it can help.
But yeah, on the day, they will put that through your system anyway.
Then once that's gone through, that's when they'll start putting the actual medication,
the infusion through your system. Once the infusion itself is done, they'll flush your system out.
And give me a second, I'm just just going to check what that is. I'm pretty confident already. No.
Yeah, basically, it's like a saline solution that goes through your system. So again, I wanted to be
certain on that. And again, it's just to flush you through. And after that, they just they monitor
you for a bit just to make sure everything is okay. And then it's discharge, which is the good bit
means you get going. Now, one of the things that I've noticed is that, you know, I've seen a lot of
quite a bit of side effects and that's on a section of my leg where it's coming off of some
ligament, which is saying things like things along this line I've heard from friends or family
intelligent or friends who are highly specific about sar火. It's always one of those things
that ever happens during the day. And so, yeah, I think so. But, yeah, it's the combo that,
you know, goes around for a while telling you what is right for the treatment and it's still
is excess fatigue, tiredness, all that sort of stuff in the days following and
again I've had that whereby I mean I'd be honest with you a couple of days after I
mean I just wanted to sleep solidly that was after my first fall back I just
wanted to sleep so I did. I relaxed I was calm chilled and spent time just doing
what I felt was necessary which very much was R&R because again sometimes you
need to do that you just have to do that and again as it's saying here in the
afters skin reactions, throat irritation and pain, shortness of breath
shortness of breath, flushing which again I did have that after the first
half bag my face was very very red for a day or so it did go it did go things
like fevers I've said that headaches, dizziness, feeling a bit Tom and Dick
sick and fast heartbeat again it's all stuff that is known but should it become
too much of an issue any of that immediately seek medical attention
that's the biggest thing that I can tell you if you're concerned at all always
always always get medical help that's just the way it needs to be I'm going to
be honest that you have to now again for me going on
ocrevas I did find that quite daunting quite daunting and even now I mean I'm
sat here thinking in a month's time just over a month actually just over a month's
time my immune system is going to get said kicked in again well you know if it
means everything slows down MS wise you know what I'll take that I'll take that
it's a bit frightening it's a bit scary but you know what it's necessary it's
necessary treatment is something that's quite big now again I mean this this is
a different section of the show I mean I'll be honest with you I don't tend to
sort of go in to things too much unless I can prove what I'm saying and as I say
I've got the book with me to ensure that what I'm saying is accurate and I'm not
wording it exactly as the book does but the wording is as good as what the book
is saying so I'm just I'm just ensuring that the correct information is being
given because again that's a big thing it's a big thing making sure the
information is correct now I'm going to end the show there today and I will be
back again next week and what I will say I know this show may not have seemed
overly positive do you know what it actually is it really is it's something
that I wanted to talk about you know I wanted to talk about the fact that some
of us MS's on certain social media have come together to try and talk about our
our lives with the condition on top of that I will say some of our American
friends are also doing a show very similar and it is fantastic very very
very good yeah I'll be fair that's the reason we wanted to do ours because then
you've got the two different time zones both having access to like-minded people
that's probably the best way I can put it yeah I'm very proud of what we're
doing very proud of it the next episode of that will be on Wednesday and as I
say he's live and we are getting used to it ourselves but very very positive
reviews come back from it really really positive so by all means nip across to
the social media that has got the same name as what watch does because watches
they sort of as you listen to them I go tick tock and that you know so pop
across pop across come and come and have a listen in see if we can maybe answer
some questions for you or or just help maybe we can put a smile on your face I
don't know we'll try our best and again I wanted to talk about the treatment
aspect because again that's coming up for me now and strangely enough I'm
looking forward to it I hope you all have a good week I thoroughly enjoyed
recording this episode I'm gonna be honest and I will speak to you all again
in a week's time speak soon friends bye bye