Beyond Diagnosis: Ashlee and Sava, a couple's story

Ashlee and Sava's story is one of partners navigating MS together, bringing us what medical textbooks can't – how the disease mixes with parenting challenges, career changes, and future planning.

Listeners will hear of this young family's compounded 'complex needs' and learn that rather than dwelling on circumstances, Sava and Ashlee instead share a unique strength – sometimes through shared humour, sometimes through dividing responsibilities based on changing abilities.

What makes this conversation unique is hearing both voices – Sava describing his physical decline despite "stable" MRIs, and Ashlee ultimately speaking of her own neurological condition, and evolution into what she calls "a bit of a manager," juggling medical appointments and government supports.

Sava's decision to pursue HSCT treatment in Mexico adds another layer to this episode - and we wish him all the very best success!

If you can support Sava's journey to Mexico for HSCT please do so through his GoFundMe page 

Transcript

Meeting Ashley and Sava

Speaker 1 0:01

You're listening to MSMS the Many Stories of Multiple Sclerosis podcast. All about real stories surrounding life with MS, sharing many individual experiences and insights. I am Colleen Daniels, your host, and in today's episode I'll be speaking with Ashley and her partner, sava, from Melbourne. Ashley and her partner, sava from Melbourne. Sava has MS and that's a perspective of a carer and a partner that we rarely have the opportunity to hear about. So let's say hello and welcome to Ashley and Sava. Hi, Colleen.

Speaker 2 0:38

How are you? Hi, Ashley and Sava, Good thanks.

Speaker 1 0:39

How are you, hi, ashley and Salva how are you, I'm really good. Thank you, Salva. Okay, so now can you tell us about? Do you have family?

Speaker 2 0:54

I don't really know anything about you guys, so can you please fill me in? Yeah, so we share a little boy. His name is Luca, so he has a bit of a Greek name, like his dad or my family tend to call him Luca the Aussies. He's four years old and he is a bit of a handful. I want to say that's a very polite way of putting it, wouldn't you say Sava? Yeah, he's giving me a look right now, like yeah, right, that's what.

Speaker 2 1:22

Yeah, but it's yeah, he is being tested, sort of towards the middle of the year for neurodivergent disorders like autism, adhd, oppositional defiance disorder, sort of you name it all of that. Okay, and we have two furballs, two fluffy dogs.

Sava's MS Diagnosis Story

Speaker 1 1:43

Yes. So, ashley, you're a busy lady. I am, yeah, so busy running around after children and pets, all right, so you do have a little family there, and so you're a busy couple. Zava, you have MS.

Speaker 3 1:59

Yes, that's correct.

Speaker 1 2:00

Can I ask you well, can you tell us about your MS? When were you diagnosed?

Speaker 3 2:07

So I got diagnosed in 2019, I think.

Speaker 2 2:12

Late year, late 2019.

Speaker 3 2:14

So I'm a construction worker, so I did form work and I had an accident at work where? So my job was to strip the formwork and send it up to the guys on top so they can continue building. And I had an accident at work where a timber came down and struck me on the head, oh dear. And then work sent me off for scans to make sure everything was okay, and that's when they cleared me. And about a week or two later I get a phone call from the doctor you need to come back to get another scan done. And that's when they confirmed DMS.

Speaker 1 2:55

Right, partially, yeah, partially, and before that you had no idea of something being a bit unusual.

Speaker 3 3:07

Thinking about it now. There was signs of it but, I didn't know it was MS and I had signs of it, like things happened, like drop leg, for example, was one that, but it never happened constantly, so I never pursued it. I was like, oh, I'm just tired, or whatever. And yeah, that's the reason why.

Speaker 1 3:30

Yeah.

Speaker 3 3:31

The accident's sort of a little bit of a blessing in disguise.

Speaker 1 3:37

Yeah.

Speaker 2 3:39

I think with MS it's very, you know, everyone presents differently and the symptoms that Sava was showing, which were lack of balance, and his family and I would often laugh and say, oh you and your big feet. You've got no idea how big your feet are. You're constantly tripping over your feet. We would make jokes about it. Yeah, you know, just fatigue. We would put it down to him working so hard. You know, construction is obviously not easy physically on the body. And then having a baby, adding a baby Well, we already had the baby.

Speaker 2 4:13

Yeah, by the time we but yeah, just you know a lot of things. Cognitive abilities, I noticed, were slightly declining and I just thought, if you're able to pick up a book and read, you're going to sort of lose that, that vocabulary. And so there were just these things that just weren't making sense and weren't anything to go to a doctor about no, so they seem quite minor things, just sort of something that could happen to anybody.

Speaker 1 4:40

they're tired or doing physical work especially. Exactly. Okay, so that brought the MS to your attention. Yes, so the accident itself did that create issues for you, or was it a hospital stay?

Speaker 3 4:57

No, I wouldn't have got tested. I think I had a CT scan. Right, right and the hospital cleared it like yeah, you're all good to go, and I think I was back at work the next day, wow. And then I got a phone call from my GP and they actually asked me like to come in for something. I'm like I don't know what you guys are talking about. So I just missed the first phone call.

Treatment Journey with Ocrevus

Speaker 3 5:24

And it wasn't until about a couple of weeks later where I actually had to go into the doctor and the doctor's like what are you doing here? I'm like, oh, this is what I need. He's like we tried to call you a week ago. You need to go back and do a test. I'm like what are you talking about? So then I went and did the CT scan again, then I did MRIs, lumbar puncture, all the tests that they need for MS.

Speaker 1 5:48

Yeah.

Speaker 3 5:49

Yeah, I went back and got the results from my GP, he was like, yeah, it's confirmed.

Speaker 1 5:53

So from there, I imagine, you got referred to a neurologist. Is that what happened? Yeah, so I went to the Austin here in Melbourne Neurology Department.

Speaker 3 6:05

Okay yeah, so when I went, they go. The only drug for you is Ocrevus. That's the only thing we've found to work for primary progressive MS.

Speaker 1 6:17

It's not a 100%. So straight away they've said that you were primary progressive.

Speaker 2 6:21

He did have those symptoms for years, and it was just. I think back now and I wish I had known. But we knew nothing about MS. What did we know about MS? We knew that there was an MS read-a-thon.

Speaker 3 6:34

Yeah, that's what we knew.

Speaker 2 6:35

That's all that we knew. We had no idea what MS was, and it's still like that today unfortunately that's a big diagnosis and they started you on the Ocrevus.

Speaker 3 6:47

Yeah, so it was half a dose. So what you get in your six-month infusion of Ocrevus? It was half that for the first one.

Speaker 2 6:56

That went well, didn't it? Yeah, that went really well. The first, I would say, infusion.

Speaker 3 7:02

And then, two weeks after that, was the other half of it. So you got your full Ocrevus dose, but the first one I split into two parts to see how the body reacts to it.

Speaker 1 7:14

Okay Now, ashley, I heard you say that went well that first dose. So how do you come to that conclusion that it went well? What was it about it?

Speaker 2 7:23

Yeah, so Sava now gets allergic reactions at about halfway through. I've always had the allergic reactions. Yeah, the first time. No, yeah, I did, it was very minor, but they get sort of worse. His throat constricts, tongue liquid swelling a rash.

Speaker 1 7:41

Okay, yeah, so this is to the ocrevis. Sorry, I haven't heard this before from anyone. Yeah, so this is to the ocrevis. Sorry, I haven't heard this before from anyone. Yeah, so ocrevis is causing that reaction, and that's every time. So are you still on ocrevis?

Speaker 3 7:54

Yeah, I'm still on ocrevis, because that's the only thing the neuros say is going to do something, but the neuros have always said like somewhat, lesions are not changing. That's a good thing I'm not getting new lesions or nothing.

Speaker 3 8:09

It hasn't progressed Right. That's a good thing. What they have said to me is they've done this with other patients before and because the lesions are already there, the MRI can't get to the minute of it and get down and see exactly what's going on. So that's why they say ocrevis is the best thing we have. But it's not 100%, because the MRI scan can't pick up the monute in the lesion.

Speaker 1 8:40

But what they can see seems to be stable. It's not. The progression seems to be on hold.

Speaker 3 8:47

Until the patient comes in. And the patient tells them listen, I'm getting worse. They just think you're the same.

Speaker 2 8:54

Oh, and they do their tests. Yeah, yeah, they're very odd. I mean, originally I thought that was one of the strangest tests I had ever seen. I'm like, why are you getting him to touch his nose and touch his feet? And I kind of felt like we were in an episode of Play School. Yes, yeah. But, that's also obviously how they do it. You know, make their assessments and then sort of get that EDSS score yeah.

Speaker 1 9:22

So how long has it since you've been on Ocrevus, then, how long have you been on it? 2019. Oh, from 2019. So you're still on it and you're still stable as far as the MRIs.

Speaker 3 9:37

As far as the MRIs, it shows no new lesions, no nothing.

Speaker 1 9:41

Okay, but.

Speaker 3 9:42

I'm not stable.

Speaker 1 9:43

You're not when you say you've gotten worse. In what way?

Speaker 3 9:47

I never used to walk with a walking stick. Now I walk with a walking stick. Balance is shot. I have no balance. Fatigue is heightened. So they say on their MRI that there's no new lesions. But patients always come in and complain that their body is changing.

Speaker 1 10:07

So the lesions aren't a reflection of what you're feeling. No, Ashley, what do you see? You're Sava's partner and I imagine you want to help. So what do you do when Sava is experiencing different episodes?

Speaker 2 10:25

He's, I want to say he's. So comparing it to, let's say, relapsing remitting, he doesn't have.

Ashley's Role as Caregiver and Partner

Speaker 2 10:34

He doesn't go through different stages, so we don't have stages where he has flare-ups. It tends to be daily. So we had a baby in 2021. Sava worked up until the end of 2023 in construction and that's when we noticed a real issue with his leg, so they call it drop leg. He was still able to function and to walk, but it just wasn't safe for him to continue. We then proceeded with the disability support pension, which we were very lucky we did not have any issues getting it and I think that was because we went in very prepared with all of the notes from the neurologist therapists that he had been seeing through the hospital. But what we've noticed, I think especially over the last year and more so over the past four, five months, and I think it may very much have to do with the weather we've we started summer early in 2024 Sava's leg drop he can he just drags his right leg, it's.

Speaker 2 11:44

It doesn't work. It's sort of like a dead leg. Uh, his balance is off. We I've noticed, as at the end of last year, probably December, he has lots of falls. He's coming into the house and falling over, I think the most recent one was he was holding a carton of 24 eggs and all of them completely broke as he fell over.

Speaker 2 12:08

There was a bit of blood. He was fine, covered in egg. Another one was he fell sort of near our blind, which we've now got to entirely repair. That sort of broke down the bottom. So far we, or he, has been lucky that there's been no broken bones. But yeah, we're now at the stage where we are seeing falls and we're also now at the stage where we are heavily involved with the OT when it comes to assistance in the house. He now has a shower chair, we're looking at a walker, we're also looking at mobility scooters, a bed and this is sort of long, long term. But obviously know very much with the hopes of HSCT, if you know, we do have a high chance of it working for him. Spoken with Clinica Ruiz, we've spoken with the doctors there and also with his professor in Melbourne he's very well known who has come back and, you know, done testing and said Sava has, you know, a very high chance of a high success rate, I should say. So we're hoping he might not need this yeah, but it's very difficult.

Speaker 2 13:23

It's lots of um driving, so sarva used to be. I don't know. Men tend to always be the drivers in the family they love to do the long drives, and now that's me and I would prefer that. He has his optic nerve quite severely affected, more so in one eye, and I which which I, was that sub his tips, it always been his right side of the body.

Speaker 3 13:49

I just be my dominant side.

Speaker 2 13:51

It's now more weaker side yeah, so yeah, we're just, yeah, just a lot of deterioration. So it just means that I have to do. I kind of feel like a bit of a manager no, yeah, I'm managing ngis. I'm conversing with them, planning meetings and reviews, and then I'm also doing that for my little one as well.

Speaker 2 14:14

Oh, I see, I see doctor's appointments, all of that, and I'm sure any carer can relate to that. At the moment, sarva still can cook. Yeah, um, and he does. He's very careful with how he cooks, very, because we do have a small kitchen which does come in handy. So it means less manoeuvring, less walking. He does enjoy cooking and, let's face it, I'm not the best cook. He's a great cook. He's fantastic, always has been. So I tend to do sort of you know everything else but that, because it's obviously a hazard for him to do anything else.

Speaker 2 14:55

So it's lots of laying on the couch under the air conditioning at the moment.

Considering HSCT Treatment

Speaker 1 15:01

So there's the heat as an issue as well. Yeah, yeah, yeah, right. Can I just go back, though, because you've talked about HSCT. So you've gotten to the point of considering HSCT, the hematopoietic. I can't say it. I sometimes I say it. Okay, I can't say it either, colleen hematopoietic stem cell transplant. Anyway, it's a bone marrow transplant and they've renamed it to HSCT, but anyway it is a bone marrow transplant. So you're considering that and let's, let's sort of dig into that a little bit. What brought you to that point? Because I think people don't. Well, we know that not everybody wants to or would even consider. It takes a lot of thinking about just finding out what you want to know, what you need to know. But what brings you to that point? What has brung Salva to the point of saying I want to do this? Was there a moment?

Speaker 2 16:04

Salva, yeah, he's always known he wanted to do it.

Speaker 1 16:08

Right.

Speaker 2 16:09

He knew pretty much from. I want to say he was, like I said, late 2019. He was diagnosed, I want to say Novembermber, december right um as of early 2020, he had said to me I I want to do um hsct. Back then we didn't know it was hsct specifically. We knew that it was, you know, a stem cell transplant that involved chemotherapy.

Speaker 1 16:35

Right.

Speaker 2 16:36

Now, saba didn't do a lot of research. Do you remember telling me? Do you want to tell Colleen what you told me and why I said no?

Speaker 3 16:47

Because I went and saw a neuro-ophthalmologist and I asked him about the question what do you believe in HSCT? But now I'm thinking about it. He basically told me anything I thought of was no good HSCT. They pretty much kill you, then they inject you with your stem cells and hopefully your stem cells take over, which over research and all that we've figured out. That's not the way they do it.

Speaker 2 17:17

Anecdotal research. They keep using the word anecdotal.

Speaker 1 17:21

Right, yes.

Speaker 3 17:22

So it like because of my eye, and that I asked oh, what about glasses, or glasses? It was pretty much no, you're going blind. Oh, we don't know when, but you're going to go blind, yeah. So I was sort of like, all right, maybe I'll ease off on it, yeah, but then the symptoms started getting worse. I started feeling worse and I'm like no, I'm gonna go do it and then I had a friend of mine. He had a connection with someone in malaysia to do stem cell treatment, but it wasn't HSCT.

Speaker 2 17:56

No right. It's very different, yeah.

Speaker 3 17:59

It was a different type and I remember putting it up on the page. I believe it's your page.

Speaker 1 18:05

Oh, okay, it was your colleague. Yeah, oh, my fault.

Speaker 3 18:08

That told me no, and a lot of other people commented on that post and were like no, you need the chemo, you need to go to Mexico or Russia to get HCP.

Speaker 1 18:17

Yeah, there's a lot of those scam things. They use the word stem cell, they use very clever words or they sound clever, they're just big words. They're very good at marketing and they make it sound very authentic. So we have to be careful. And if they don't talk about chemotherapy, if there's no chemotherapy, it's not HSCT, it's not the actual bone marrow transplant.

Speaker 2 18:43

No, and it's not targeting the very specific cells, which I believe are the lymphocytes and possibly penning T cells.

Speaker 1 18:52

I don't know For myself. I know they're involved, but I don't know how or anything, so I'm not very good with that stuff.

Speaker 2 19:02

We had a very good explanation from your hematologist, who basically was really able to dumb it down to us. I need that the ability of the military and how your body or your blood, your bone marrow is like a military. Can you explain how he explained it?

Speaker 3 19:22

So your white blood cells are structured like the military. You have your army, your navy, your air force and each blood cell-locked army. They attack one specific thing. So if it's an infection in the body, the army goes out. If it's something else, the Navy will go out and attack that.

Speaker 3 19:42

Oh, okay, and lupus sites are the memory, are the memory ones and for some reason in the body something's caused them to go loopy and attack the body and it goes pretty much. What we're going to do is we're going to go in and nuke the body with chemo so he used the terminology nuking. So we want to kill it all before we re-inject the baby once, so they're not being influenced by the adult stem cells that are already in there and attacking your body. So, that's pretty much, yeah, it's a great analogy Really.

Speaker 2 20:19

yeah, very enlightening.

Speaker 1 20:21

That does make sense, like the different armies, and they attack different things, so you need to get rid of the bad stuff that's attacking us really.

Speaker 3 20:30

Yeah, he did say the bone marrow will become a casualty of it, okay, but with the baby stem cells being reintroduced into the body, they will work to fix that bone marrow, to repair it, to repair it.

Speaker 2 20:46

Okay, it's not a massive issue, but I must say, colleen, I'm going to be honest with you I was 100% against HSCT. It was just not even up for debate. I thought he was going to come home in a body bag.

Speaker 1 21:00

Why did you think that way?

Speaker 2 21:01

I was very much misinformed, right, and then it was your comment. It was actually your comment. So I and that's when I went and researched months and months and I was like okay, I'm on board and I got sick to death. And I got really angry at his neurologist when he used the word anecdotal and I said it's not anecdotal. This has been going on for 40, 50 years now. You're telling me that there is no data or you know, sorry, statistics to back this up. It it's not, it is absolutely not that anymore. And his hematologist basically said no, you, you are right, it's not anecdotal anymore.

Speaker 2 21:46

and and I don't know why they keep saying that, I think a lot of neurologists and this is not all neurologists- a lot of them choose to only want to treat ms with what they know, whereas hematologists are dealing with life and death every day and they are very much well versed in hsct. You know stem cell transplants specifically how it works, why it works, although they are conducting trials for relapsing remitting ms, which is fantastic yeah, but what about those with you know secondary or primary?

Speaker 1 22:22

they have, at least they have.

Speaker 2 22:23

You're right, they have done an awful lot of studies you know, doctors often work closely alongside each other from different specialties, but yes, I think in this particular instance, neurologists need to be a little bit more open-minded and work with haematologists to better understand the benefits of HSCT.

Speaker 1 22:43

It is happening, you know, slowly. In other countries Too slow for me Polly Too slow for me, it is slow. I think you will probably agree. It's not the answer. It's not the absolute cure. There is no. There's still no cure. People hate you saying that. I think you will probably agree. It's not the answer. It's not the absolute cure. There is no, there's still no cure. People hate you saying that. I think it's a fact. There is no cure as yet, but there's certainly things that can be done.

Speaker 1 23:07

Yes, Even the disease-modifying therapies. There is proof, you know there is proof. And even just to myself, I I mean, I was diagnosed in 1998 and I know people that were on different disease modifying therapies back then that is doing quite well today. They're actually doing quite well. So you know, like, there you are, Sabi, you're on Ocrevus. I think that's good. You've got to do that because there has been a lot of study behind that as well. But of course, having decided HSCT you know I've had HSCT as well, but my experience was different to what yours will be, to what Joe down the road would be. You know, anybody Like I can have. I might be on Ocrevus but I might be saying it's terrible, I don't like it, but you're on it and you're feeling fine.

Speaker 1 23:57

I was feeling fine I believe the drug stopped working, so you're feeling differently now to what you were.

Speaker 3 24:06

I'm feeling a lot different to what I was.

Speaker 1 24:09

Right.

Speaker 3 24:09

When I first got diagnosed with it and everything I believe personally. The drug has stopped working.

Speaker 1 24:17

Right.

Living with Multiple Disabilities

Speaker 3 24:17

That's why I've gone down the HSCT route. The drug has stopped working Right and that's why I've gone down the HSCT route. But I believe also there are other factors that have come into play. Okay yep To stopping the drug from working.

Speaker 1 24:29

Okay.

Speaker 3 24:29

Hopefully HSCT can eliminate that out of the system. Yeah, look, at the end of the day, it doesn't matter, as long as you've given it a shot. That's what I believe anyway, instead of sitting back and wondering, oh, if I did it 10 years ago, would I have been better today? Well, I'm going to play the anthem in a couple months' time, when I do have it, and that's when the work actually starts. The work semi-starts now, but the work starts as soon as you've had it.

Speaker 3 25:01

And we've got to get back into that mindset of all right, I've done something. Now I've got to work my butt off for it to work and do what it needs to do.

Speaker 2 25:10

I think sort of adding to that, if you know, like you know, the neurologists were absolutely dead set against it. It's not going to work, it's a waste of your time. It's a waste of your time, it's a waste of your money, and I've sat with that belief for years. But now, looking at it, and having conversations with the doctors over in Mexico, having conversations with other patients with MS, having conversations with hematologists, and understanding that it's what they're really telling us, is I really want to use a, really you know a very strong word, but I won't use it.

Speaker 2 25:49

You know it's very much incorrect, it's very much ill-informed and they have no right to sit here and tell Sava that it's not going to work for him when there have been numerous people, so many thousands of people, with primary, progressive in secondary um MS.

Speaker 2 26:08

It's it's worked for them and whether that be completely stopping it in its tracks, which is probably the what. What we're going in for. We're going in with the hope that it's going to stop it in its tracks. Symptom reversal and although we've been told by clinical reviews by his hematologist that there's a very high chance based on all the testing that sarver has gone through, including his edss, that it's very likely that we would see symptom reversal, we're not expecting that. We would like that but we're not expecting that.

Speaker 2 26:39

We just do not want him to end up in a wheelchair. That would completely change, completely change our lives. And for Sava, you know, as a parent, um, he, he can't go out and kick a ball with our son, he can't. You know, there's a lot of things he can't do with him at the the moment. He can do swimming with him. That's the only thing he can do, because swimming is.

Speaker 2 27:01

You know, it's quite easy on his legs. It's actually really good for him. He can't teach him how to ride a bike. There's so many things that our little one is missing out on due to this disease. For anybody any doctor to tell a patient absolutely no, it's not right. It should be. It's your choice. Go and do your research.

Speaker 1 27:21

Yeah, well, of course I agree that it should be our choice, as long as we know what we're doing. And it seems to me like you've done a lot of research and you do understand. You know what the procedure is and it does involve chemotherapy, and you know that there are side effects to chemotherapy and particularly with this type of chemotherapy the bone marrow transplant you will be very vulnerable afterwards.

Speaker 3 27:45

I've seen a first-hand calling.

Speaker 1 27:47

Yeah, okay, as long as you know you're taking a risk and that you can accept that that's what you're doing. You've already said, basically, you've given it a shot, you know and you kind of have to, because if you don't then you won't know. That's kind of what you're thinking, saba. Is that right? Like you have to give it a shot?

Speaker 3 28:09

That you've got to give it a shot. But I also see it as when life gives you lemons, you make lemonade.

Speaker 1 28:15

Well, yes.

Speaker 3 28:16

It's a way of teaching the young fella. You might not get what you want, but do the best with what you've got.

Speaker 1 28:22

That's a good thing, and I know you're not doing it lightly at all.

Speaker 2 28:26

Sava. Sava Colleen actually is very much, and I think there would be a handful of the patients who have witnessed chemotherapy with their loved ones. So Sava lost his mother when he was she was 12, I believe. Yeah, 12, 12 years old, from leukemia. Oh that's sad she actually died of graft versus host, so she went through both. Was it chemo and radiation?

Speaker 3 28:52

Yeah, and bone marrow, but the body ended up rejecting.

Speaker 2 28:56

Yeah, the bone, yeah, so that's graft versus host. So Sava is very much aware of the effects of chemo, how it can affect you, you know, long term, short term, sort of immediately. And he's, he's ready. He's ready to take that step, even though he watched his mom sort of go down here and then lose her hair and and all of that stuff sarv's bald anyway. So he's like that, doesn't?

Speaker 2 29:19

that's such a minor thing he shaves his head all the time. But, yeah, he's very much aware of the complications that can arise from from chemotherapy, and you know how sick you get from it and right he's made that decision, having witnessed and watched his mother go through that.

Speaker 1 29:38

He's very well informed yeah, yeah, very well informed on what can happen and has personal experience of seeing it so well. That's very sad. It's really something that you're doing, and with full understanding, but without any grandiose expectations either. You know that it's a chance that you're taking. It's a risk, it's a chance, and the main thing that they do say, to my knowledge, is that it will stop the progression. That seems to be more of the likelihood than anything that most people are happy to say 100% should stop your progression of the disease. So you know you might stay where you are now, which means that you won't deteriorate further.

Speaker 2 30:27

That's what we're going and hoping for and as. I said before, if there are any symptom reversals, we'll take that as an absolute bonus For us. The bonus you know in itself is to be able to go over there and to have HSCT done and hopefully stop the disease from progressing purely in respect to, not his lesions but purely in respect to the symptoms that he's receiving.

Speaker 2 31:01

So you know we don't want to see the other leg, sort of you know, start losing its mobility or the left side of his body lose his mobility. So we have low expectations going in. We don't want to get our hopes up.

Speaker 1 31:15

Well, I think that's a very good starting point, and I wish you every success with your HSCT. Now tell us when you are doing it, when it sounds like you've got it all tied up.

Speaker 3 31:29

Yeah, so I'll leave end of May. I'll leave for Puebla, right Yep, and treatment starts 2nd of June.

Speaker 1 31:40

Okay.

Speaker 3 31:41

So it's already been booked in and everything, but I'm a big believer that when I come back, we need a fight to bring HSC to Australia to help not just people with MS but a lot of other people.

Speaker 2 31:58

I think it's raising awareness and I think you touched on it earlier, colleen in regards to people with disabilities and their community around them, so carers, their family, and then you have the outsiders, those who are not affected by disability, those who really have no knowledge, and they're incredibly lucky, incredibly lucky, lucky to not be touched by disability. And this is where I want to sort of talk about discrimination. Discrimination comes into it, sure, quite heavily. Yeah, people with disabilities are discriminated against. Quite often, people with disabilities have a higher chance of being abused, and I'm actually studying this right, yeah, yeah oh yeah okay, yeah, a little bit.

Speaker 2 32:45

Yesterday we were talking about, you know, the, the likelihood of abuse, um, that people with disabilities experience, and then how, how do we go about? You know, raising awareness and but yeah, I think the main thing is, you know HSCT. It is there, it is an option. It is not an option for everybody.

Speaker 1 33:04

No, that's right.

Speaker 2 33:05

It's very important, very important, because that EDSS plays a very significant part and I think Mexico allow people up to 7 or 7.5, whereas Zava is currently a 4 or a 4.5. Right, so you know he's quite low compared to many others and that's another sort of you know factor as to why it's not, you know, used here in Australia and why they're very much behind. Yeah, just for a minute. In that regard regard lots of facts that the world we need to start learning and we need to start being more aware of that, and how can we better protect people with disabilities? And I think that's through information and through the general public being informed exactly, and I think, yeah, we do have a world ms day.

Family Life and Supporting Their Child

Speaker 1 33:57

It's something that's occurred to me. We should use that day to not just raise money for research and that which which is needed, but just spread the word. Spread the word, because if people don't know about what ms is, what it does, how are they ever going to find a cure? You know, and like nobody's going to care enough to try, and then, when you think about, there's so many other diseases that need help as well. So it's and, and this is the one that we know, the one that we know and, of course, it's important to us and then you've also got.

Speaker 2 34:31

For example, try not to make this about me, but I have epilepsy, and people tend to think that you know, I fit on the floor. You know, my head comes crashing down and I fit on the floor. No, no, I don't. There is like ms, there are many facets and so there you go yeah, of epilepsy, where it is on your brain, just like you know the lesions where they are your body and how they affect your your movements and how many you have, and so we need to care about, about epilepsy, and we didn't even talk about that before.

Speaker 1 35:05

In your family you not only have ms, but you've got yourself with epilepsy, so that's a difficult condition to manage as well. Of course, is that neurological? Which is that called a neurological condition? Yeah, definitely it is.

Speaker 2 35:18

I was fascinated because when Saba was diagnosed it was definitely neurological and I had spoken to my then neurologist about it and then he referred my partner to Professor Richard McNamara, which I'm sure many listeners would know of in Victoria. Yes, and he was referred, you know, he seems like I think he's really good. So it came in handy having my neuro say yep, you know, we kind of deal a little bit in MS here, but I'm more the epilepsy area.

Speaker 1 35:50

Right.

Speaker 2 35:51

But it makes it a little bit difficult because if I go down here looking after the family, saba can't do it and then you know we're having to rely on my mum who is the closest? And that takes a lot out of her to do that, and it's, you know, saba's parents. They leave roughly two hours away and, although they would leave at the drop of a hat. It's a burden. It's hard to ask.

Speaker 1 36:15

And you'd probably need specific knowledge. You'd probably need people that have some knowledge around what to do if you're having an episode.

Speaker 2 36:24

For me mine's really easy to manage. I'm very grateful. I'm not one of the lucky ones, but there are times where you know Sava's really good, he knows how to manage and go through it. My mum, she's pretty good and you know they know when to call an ambulance and for me it's very. It's actually it's nothing, it's, it's a walk in the park. I mean no disrespect to anybody with epilepsy no, but I am comparing that to ms yeah, your particular brand of epilepsy, right.

Speaker 1 36:56

so yours is milder than others perhaps, so there's different degrees of that as well.

Speaker 2 37:02

by the sound of it, yeah, like they would be with any disability. When I say complex needs, I actually truly mean our family has a lot of complex needs.

Speaker 1 37:13

Yeah, she said, your son as well. Yeah, is that right.

Speaker 2 37:16

Complex needs comorbidity. How would you say Siva, it just is us, it just is.

Speaker 1 37:21

Do you know what I?

Speaker 2 37:21

mean Like it's not even acceptance, it's not even acceptance.

Speaker 1 37:25

It's just, you deal with it.

Speaker 2 37:26

Yeah, it's like, oh yeah, this is how it is and we laugh about it. We joke about it.

Speaker 1 37:31

Yeah, yeah, whatever. Yeah, you've got to suck it up, really, and you've got to do the best for the little one. That's right, and that probably changes a lot of things. Once you have a child, then you have to make everything okay for them.

Speaker 2 37:47

Then you're just not concerned. You're like okay, this is happening to me. It's scary. I don't like it. My child has this. My child has that I'm having surgery.

Speaker 1 37:59

So you're shielding your child all the time, absolutely, it's like no, it's okay. It's okay, we'll deal with it.

Speaker 2 38:04

You just go be a kid, yes you know, ensure your kid is able to be a child.

Speaker 1 38:10

That's what it's about, isn't it?

Speaker 2 38:12

Absolutely Okay.

Episode Conclusion

Speaker 1 38:14

Wow. Well, I think we've got everything in, but my goodness for epilepsy. We didn't mention that to start, but we got there, so thank you so much, Ashley. I think we might leave it there, no worries. That's today's episode of MSMS the many stories of multiple sclerosis. I want to give a heartfelt thank you to Ashley and Sava for sharing their journey with us and listeners. Please remember, every experience of living with or close to MS is unique, but we are all traveling this path together. If this episode spoke to you in some way, please share it, subscribe if you want to hear more stories of life with MS. And until next time, take care, We'll keep connecting, one story at a time. Thank you.