Voiceover:
Welcome to The Raw Nerve. The official podcast of MS Australia. A conversation space for all things multiple sclerosis. Join us for news and views on the latest research, treatments and advocacy efforts, as well as candid and informative interviews with our community, those living with MS and their families and carers, together with leading clinicians, researchers, and advocates.
Jeremy Henderson:
Welcome. I’m Jeremy Henderson, one of the hosts of The Raw Nerve Podcast. This week, we’re taking you to Canberra, where earlier, Neurological Alliance Australia, of which MS Australia is a proud founding member, held a summit to call attention to the needs of millions of Australians living with neurological conditions.
Neurological conditions are on the rise in Australia and globally, and yet, despite being recognised as one of this country’s top disease burdens, neurological conditions remain under-recognised and underfunded. Now, you can find out more about the summit and a new campaign Count Us In, in the links in the show notes below.
Now, lived experience was front and center at the summit, with a panel session with people with lived experience of neurological conditions one of the highlights. I’ll now pass you to summit facilitator Virginia Haussegger, to introduce the panel.
Virginia Haussegger:
We have some wonderful speakers here, who we’ve asked to come along and briefly speak today, only four or five minutes each, but to briefly speak about their own lived experience living with a neuro condition. And I’ve also asked them to consider if there was one thing, one big thing or important thing that they could change or improve, what would that be? So, we’ll go through one by one. And I’m going to start with Shelly Parer. Shelly lives with multiple sclerosis, and Shelly will be our first speaker.
Shelly Parer:
Good morning, everyone, and thank you so much for being here today and taking an interest in neurological conditions. As Virginia said, I live with relapsing remitting multiple sclerosis, and I didn’t know I had MS until three years ago when I had my first attack. It left me pretty much bedbound for six months. It was a life-changing diagnosis. I’d been working full-time. I’m a mum of two tweens. I had guardianship of my nephew and co-full-time carer for my father-in-law. So, life was very full and very, very busy.
As I said, I had to give up work for six months. My symptoms were intense and incredible muscular, cognitive fatigue, full body tingling, strange sensations, and it was a really, really frightening time when you get a diagnosis like that, because you don’t know what the future is going to hold. You don’t know if these symptoms that you’ve got are forever. They are intermittent. So, some days you’ll feel great. The next day, you can barely move. So, it’s been quite a journey these last three years.
So, just very quickly, MS is a unpredictable disease of the central nervous system. It attacks the central nervous system, which is your optic nerves, your brain, your spinal cord. I’ve got lesions in my brain, brainstem and spinal cord. Every single person with MS is different. It really depends on where those lesions are. The central nervous system, think of it like a freeway and MS lesions like potholes or landslides. Depending on where they form and where they are in your system determines what your symptoms are. And that’s why every single person with MS is different. No one experiences MS like I do, myself. And likewise, everyone is so uniquely different and so is their treatment plan.
So, how does it impact me? It took me three years to work … Back to working 20 hours a week. And at the moment, that’s my cap. I can’t work any more than that. That’s what the balance is for me. I’m very lucky that I live in Canberra, so I’ve had very good access to healthcare providers here. Not everyone with MS is so lucky, particularly if they’re living regionally. It’s a massive time and financial commitment to access healthcare and it’s also really expensive, even for someone who lives in a capital city. So, I’m really grateful that we have Medicare, but that only covers such a fraction of the ongoing costs that you have when you live with a chronic condition.
With MS, as, I think, with any neurological condition, the earlier you get diagnosis and treatment, the better. And the earlier that you can get support from allied health, the better your long-term outcome. When Virginia, you asked what’s the one thing I’d like to see? There’s probably several. I’ll just break them up. So, with the NDIS and NDIA, at the moment, the disability scale doesn’t really factor in neurological conditions. MS can be a physical or a neurological disability. And at the moment, the scale seems really only to factor in the physical disability side. How do we factor in cognitive fatigue? How do we factor in physical fatigue? And how do we support those people with very debilitating symptoms that currently aren’t being supported through the NDIS because they’re not recognised?
Second is research. There’s so much fantastic research going on at the moment and I’m pleased to know that there’s more support going on. MS is not meant to be hereditary. There’s no one in my family that has MS, but it does impact women more than men. Three-quarters of people living with MS are women. And of course, I’m concerned about my two young daughters. And we know that an EB vaccine will go a long way to stopping people from getting MS. And people with MS, research into myelin repair is something that we’re looking forward to. So, that’s getting the roadwork fixed on that highway. So, reversing some of the damage that’s been done by the lesions in the systems.
Virginia Haussegger:
I’ve already just learnt a whole lot that I certainly didn’t know, but I mean, to learn that three-quarters of sufferers of MS are women, that was complete news to me.
As I said, we’ll come to questions. I’m going to move on now to Craig Gillespie. Craig lives with Parkinson’s disease. So, Craig, again, briefly take us into your world, what living with this condition is like for you and what would be the one big thing you’d like to see change?
Craig Gillespie:
Thanks, Virginia. As you said, I’m Craig. I am an environmental scientist. I’m a husband, and I’m a father to two young children, 13-year-old Delilah, and 8-year-old Fred. And three years ago, I was diagnosed with Parkinson’s at the age of 50. It was devastating news, obviously, and a very difficult thing to tell my family. But up until then, Parkinson’s, for me, was an invisible malaise of enigmatic symptoms that gradually undermined my mental health, my physical health, my relationships, and my livelihood. And that took place over a period of probably close to 10 years before the more recognisable physical symptoms, movement-related symptoms of a tremor and slowness of movement, stiffness presented and eventually led to a diagnosis.
So, that diagnosis actually came as quite a relief, to be honest. There was finally an explanation for all the hardship that we were going through, not just me, but my family as well, as a result. And it also came with an incredibly empowering sense of agency to strive every day for absolutely the best outcomes that a treatment plan could offer. Now, I knew there was something I could do going forward.
And so, I don’t think you can overstate the importance of new research. Some published it as recently as just last week into speeding a diagnosis. Obviously, because with Parkinson’s, it’s a gradual onset and it’s hard to recognise and diagnosis is very difficult and people suffer tremendously before, finally, the answers come. So, for me, that dread and despair gave way to a feeling of, now I can do something about this.
There’s other independent research groups pursuing disease modifying treatments, and perhaps even Parkinson’s is an area where there is some hope that, perhaps, even a cure is just over the horizon. So, research is important to people like me and brings a sense of urgency and hope.
But I want to tell you a bit about managing Parkinson’s for somebody with a recent diagnosis and early onset, like myself. It really is a tough trade-off between participating and being present for my family, making a livelihood and managing and developing, hopefully, a career, maintaining and managing my health.
And here in Australia, we really are the envy of the world with our NDIS and it has absolutely been a game changer for me. But I’m going to give you some examples of why more funding and even dedicated supports and services don’t necessarily result in the best outcomes. I’m a participant and my plan has funding for exercise physiologists, but I can only access them through a dedicated gym studio, which is quite some distance from my home, quite a lot of travel time involved if I’m going to be able to fund that through the NDIS. If the NDIS would fund a local gym which has all the same equipment, there’s nothing special in the gym that I visit apart from the exercise physiologists, then I’d be able to access those outcomes with tied perhaps to a regular one-on-one with an exercise physiologist at any site, far more cost effectively to the NDIS itself, but also, critically, with far less time commitment on my part as a participant.
Similarly, I have funding for a neurological physiotherapist who provides an array of treatments amongst which it’s deep tissue massage, which is important for me to manage pain, manage stiffness and rigidity that comes with Parkinson’s. I can only, once again, access that through the neurological physiotherapist. And some of their specialist expertise is critical to aspects of my treatment. But that massage could be done by a massage therapist who is five minutes from my home, knows my condition, I’ve been seeing for 10 years or more and for the same symptoms. But remedial massage through a massage therapist is not an approved service under the NDIS. It has to be through the neuro-physio, which is twice the price, and three or four times, maybe more, of the time commitment for me to get to those sites, to those appointments.
Assistive technologies is another thing that is funded, but I’m in early stages, specialised cutlery and mobility aids are not what is going to help me maximise my function and optimise my treatments. For me, perhaps, I exercise every day, a subscription to an exercise tracker, maybe a cycling computer which can help me manage the trade-off between investment of time, the health benefits of exercise and risk of an injury. This is assistive technology that’s more akin to or more amenable to an early intervention and preventative NDIS, but those things are not approved.
So, there’s a few examples of where I think the NDIS could … If there’s one thing I could change, I would have a more tailored and flexible NDIS, that will deliver cost-effective and time-efficient treatments that work, to people who, like myself, recent diagnosis, young onset and managing the trade-off between remaining solvent with a livelihood, participating meaningfully in my family life and getting the best health benefits that I can muster.
Virginia Haussegger:
Thank you, Craig. Thank you. Some fantastic insight there and that frustration that of those mismatched appointments, and these are organisational things, these are systemic things. These aren’t hard to solve. But look, thank you so much for sharing that.
We’ll move on to Teresa and Steven Lloyd. Now, Teresa and Steven might be known to many of you. They’ve been fantastic at sharing their story publicly and through the media. They’re parents of two boys, Ethan and Ronin, who live with childhood dementia. Now, over to both of you, what’s it like in your world and what’s the big thing you want to see change?
Teresa Lloyd:
Thanks, Virginia. Good morning, everybody. Thanks for the opportunity to be here today on the panel. And thank you to you guys for your stories as well. As Virginia said, we’re Teresa and Steven Lloyd. Our story is slightly different in that we’re the parents of two boys, Ethan, who’s 10, and Ronin, who’s 8, up on the screen. Both of these boys have Sanfilippo syndrome, and this is a form of childhood dementia. Again, similarly, we’re three years into a diagnosis of a disease that we had never heard of and had no family history and no idea that we were carriers for this condition. I’ll pass over to Steve and let him do some talking as well.
Steve Lloyd:
Okay. Thank you. I guess, in a nutshell there, Virginia, what’s it like? It’s pretty ordinary, to be honest. But to follow on from what Teresa was saying, neither of us had family histories of this and it came out of the blue. So, if I had Sanfilippo syndrome, I wouldn’t be sitting in front of you today because, quite frankly, I would’ve passed away. So, it’s a disease that typically children are diagnosed with early in life, if they’re lucky, or unlucky, depending on how you look at it. In our case, it was about four. And usually, the bell curve is that they’ve passed away in their early teenage years.
So, it’s a form of childhood dementia. It’s exactly the same as what we associate with adult dementia. So, Sanfilippo syndrome sits under a group of diseases called monopolysaccharidosis. I don’t expect too many of you to hear it here, but if you’ve got a pen, write down MPS. It’s probably the quickest and easiest way to look up the internet. And even then, it doesn’t come up as one of the major search engines. I mean, in my case, after about three days of being told Ethan had the disease, I went and looked it up and it’s worst day of my life. So, I wouldn’t wish it on a worst enemy. And as a parent, I guess, with children who have got childhood dementia, it’s literally like being in a prison.
So, for us, it was a bit of a mystery. It was actually through a voluntary $70 urinary test. And at the pathologist, the pathologist said to us, “Well, save yourself some money. It’s not on Medicare. Don’t do it.” Now, if we hadn’t have done that, potentially we would’ve been diagnosing our children later in life, which means that early access to the NDIS and things like that would’ve been off the table.
And just as sadly, we had our second son, Ronin, after we had been diagnosed Ethan. So, again, the stats say that we had about 25% of having a second child with the same life-ending disease. But as we see in so many cases in the Sanfilippo Society, many families have multiple children with the same disease again and again. So, for us, the clock’s ticking. It means that we have to go through that process twice with our boys.
As I mentioned, it’s exactly the same as adult dementia. We’ve probably all had some association, parent, grandparent, 70, 80-year-old next door neighbour. You transpose those conditions and behaviours into my 10-year-old son. Similarly, for the parents out there, the uncles and aunties, if you think about that childhood cherished memory and then realise that that child is either going to lose that memory or has already lost it, that’s Sanfilippo syndrome.
A couple of other things just in our journey, again, it’s a very rare disease. So, battling very similar types of scenarios we’ve heard today, where sitting in front of a metabolic specialist, this is somebody who’s dedicated their life to medicine, and being told that we’re the experts because we have the condition, we have to go away and research the trials or the drugs. We have to go and have a look at what’s playing out in America. Again, from a parent’s point of view, seems to be a little bit of research in places like Women and Children’s Adelaide Hospital at Adelaide University, under Nick Smith over there. But I look on the internet and I see a massive amount of stuff coming out of places like Italy. I don’t think they’re disproportionate in terms of Sanfilippo, but again, I guess, that’s the collective idea today. Wouldn’t it be great to corral some of that political and through empathy might and cure some of these diseases in Australia?
I just wanted to finally say that again, it’s a bit of a wilderness out there. We’ve got these great societies that I’m sure playing out across the room, but for us from a parent’s point of view, Sanfilippo Society and others, they run on a minuscule budget. Very few staff, most of them are volunteers. It’s typically the families doing the fundraising and we’re the ones running cake stalls and sausage sizzles, hoping that some of those dollars can scratch together to fund a scientist somewhere or a PhD student coming through to try and look for a cause. So, certainly, in that regard, if there’s anything else we can do, that would be great.
I think that’s probably it from my side. I’ll quickly pass back to Teresa to say the one thing we’d like. But thanks again, today. I don’t want to end on a bit of a dark note, but I would just say this, it’s not a pick-a-winner. I heard that comment a couple of weeks ago when we talked about this, and sometimes these scenarios play out and it’s sort of like, it’s a pick-a-winner for politicians and things like that. I would say that every life is precious, every death is a tragedy, but in our case, we’re talking about children. So, thank you.
Teresa Lloyd:
So, just to finish off then, the most important thing or the thing that plays in our minds is actually for our families and families right now, I guess, it’s the NDIS pathway and the support and the help and the understanding that we have children with these behaviours that a typical adult dementia patient has, but then being told that we’re parents, and so, it’s our parental responsibility to look after our kids. So, clearing that up.
But then also, for future families, we don’t wish this on anybody. The thing for us, newborn screening blood tests, if Sanfilippo and other conditions like this was included, we would have a diagnosis close after birth and we would have an opening for better opportunities for treatments. For us, in our community, under the age of two, before any real damage is done to the brain, there’s genetic trials, there’s genetic therapy, enzyme replacement therapy, all these different options that we could have tried to help prolong our boys’ life and slow down any of the deterioration.
Virginia Haussegger:
Thank you so much, Teresa and Steve. And again, these suggestions for change and improvement, they’re not big asks, they’re not big asks, and they’re not complicated asks. They really should be quite straightforward. To our last set of speakers, Sarah and Phil Sharp who live(s) with motor neurone disease, take us into your world.
Phil Sharp:
Thanks very much. I just don’t know quite where to start, but I was listening to Craig’s talk and the similarities are amazing. I had sort of thoughts that I had something wrong with me in 2013. Went to the doctors and went to physiotherapists and they did everything that they could think of, but nobody had a clue. I was diagnosed with Parkinson’s at one stage and my doctor said, “No, I’m too old for MS.” So, I think, “Good, that’s gone.” Parkinson’s, I didn’t have. So, that was fine. I was happy with that.
And it took me a couple of years before I got to a neurologist, and there’s no test for MND. There’s no symptoms as such, apart from the fact that you can’t walk and you’re falling over your feet and people say you’re looking drunk and that sort of thing, in the shops. So, the neurologist put electrodes on my legs and I got electric shocks up and down my arms and my feet were flying all over the place. And then he turned around and said, “Well, you’ve either got Parkinson’s or MND.” And I thought, “Do I have a third choice?” But I didn’t. And he finally came up with MND and that was at Christmas in 2019, the day before we were going down for a big family reunion at Gerroa Beach, which was interrupted by bushfires as well.
But he then said, I had two years left. I thought, “Okay.” Untreatable, incurable and terminal. They’re the three things you’ve got to worry about with it. I don’t know how many people here know much about MND, but not a lot of people do. And it was pretty soon after I was diagnosed, I couldn’t walk anymore and the doctor came out and said, “Oh, you’re going to have all sorts of horrible things happen. You’re not going to be able to breathe, you can’t eat, you can’t do this, you can’t do that. And you can’t breathe and then you die.” And I thought, “Well, that’s a great outcome.”
And we sort of just took it as it went. And Sarah and I went down the coast anyway and had a good time, although I didn’t get much down on the beach, because I was on walking crutches, and if you ever tried walking on a beach with crutches, it doesn’t work. So, we just carried on normally, didn’t we? And thought, “Well, we’ll just see what happens.” No, Sarah didn’t carry on normally, unfortunately, Sarah took it worse than I did. Because I thought to the point where, not much I can do about it. I’m stuck with it.
But we made the best of it. And then, I lost my legs. Although, I can do all sorts of things with my legs, I can do all sorts of things with my arm, but I can’t walk and I’ve got no fine motor skills on my arms anymore. I can’t write. I can’t sign my name. And I can’t walk. So, I don’t know how long I’ve got to go because they initially said two years and now the latest was 10.
I’ll pass over to Sarah because she’s got a lot more to say about it than I do. There’s only one thing I’ve got to say. I have one more thing. There’s 50 shades of MND, and MND doesn’t age discriminate. I mean, Stephen Hawking got it in his 20s. I got it in my 70s. And we’ve got other people in the association who got it in their 30s and 40s. So, you don’t know, and anyone can get it. There’s no idea of how you get it in the first place. It’s not communicable or transmittable. But anyway, I’ll pass over to Sarah. So, thanks very much.
Sarah Sharp:
I’m not going to dwell on some of the personal issues with living with it, because I think everyone has expressed here how difficult it is and being a full-time carer, how it affects your own life. I stopped working. I was working part-time as a consultant, which I loved, so I had to stop that. I do get a carer’s allowance of about $140 a fortnight.
But our biggest issue is that, going back to Phil’s point about it not discriminating with age, is that we’re not on NDIS. We can’t be on NDIS purely because Phil was over 65 when he was diagnosed. On average, people with MS get about $200,000 a year, or up to that sort of amount, to look after them. That covers the care that you need at home. It covers the equipment that you need, and it covers the specialist treatment, as you say, like physiotherapy and that sort of thing.
At the moment, after we take out expenses from the provider, which is 32% of our monthly or yearly, if you like, amount that we get from government through My Aged Care, we have $40,000 to live on. Sorry, to care for Phil. This just covers six hours of personal care a week and two hours of, we’re very lucky, home physiotherapy care. Phil couldn’t do without that physiotherapy.
At some stage, Phil will get to the point where, as he said, he can’t eat, he can’t breathe, he can’t talk. His mind will be perfectly clear, except that we did find out that some of the really heavy drugs that he was on, which we’ve now cut back on … We, I talk about we all the time, because it is we. Were actually making him cognitively very dull. It really affected him enormously.
I did some calculations this last weekend. If we increase our hours to 25 hours a week care … I’m 70. At some stage or other, something’s going to happen to me as well. If my back goes, if I break a leg, or if I get cancer, hopefully none of those are on the line, but they may be, just 25 hours a week with the $40,000 a week. Sorry, a year. Let’s start that again. It’s going to cost us $105,000 to get care for 25 hours a week and two hours physio a week. $105,000. We’ve got $40,000 in the kitty that we get each year. That means that we are going to be personally paying out $72,000 a year, ourselves. That leaves us with an income of $20,000 a year to live on. We’re down to the poverty line.
We cannot get NDIS because Phil is over 65. We understand that there is some consideration of that, because I think that is illegal discrimination. ——So, this is what we’re fighting. And this is really what we’re fighting because we’ve got a … MND Association provide quite a lot of equipment. We’ve got this chair, it’s old, it’s ratty, it’s the wrong size. A new chair, if it was properly fitted to Phil, it would be about 40 to $50,000. We’ve just paid out $55,000 out of our own pocket for a modified vehicle, second hand. For a vehicle that costs about $30,000, $30,000 for modification.
So, these are the sorts of expenses that we deal with and we just absolutely do not know how to do it. Phil would say, is it a good thing that he’s been told he’s going to live longer? Is it a bad thing? It’s not good economically, I can tell you. It’s a good thing from having Phil around. How do you live?
Virginia Haussegger:
Sarah, thank you, and Phil. I wish we could stay here and talk to all of you all day. Thank you for that powerful sharing. The thing that strikes me in hearing all your stories is how much fear must be experienced by everyone at some stage and how you manage that. In the middle of the night, that fear and just simply being scared of the future, is a horrible, dreadful thing.
But boy, oh boy, you’re amazing people. And what incredibly, and I know you probably hear this all the time, but incredibly resilient people. But thank you for sharing your stories, each and every one of you has given us something very, very powerful to take away. You have been so generous in sharing your stories, and I hope that you feel the support that you all very much deserve.
Voiceover:
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