MSMS: The Many Stories of Multiple Sclerosis
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Welcome to MSMS: The Many Stories of Multiple Sclerosis
Here, you'll hear real stories from real people—Australians and occasionally others from around the world—sharing their experiences of life with Multiple Sclerosis (MS).
The podcast began with Colleen's hope to build greater understanding of Hematopoietic Stem Cell Transplant (HSCT), by spotlighting the stories of Australians living with MS who had undergone this intense and often misunderstood procedure.
What started as a focus on HSCT has since grown to include a range of conversations relevant to Australians living with MS—honest, heartfelt stories that speak to the reality of this progressive disease.
By sharing our experiences, we support one another, reduce the isolation that so often comes with MS, and foster a sense of community—while also raising much-needed awareness.
The first series of MSMS centres on HSCT—the decision-making process, the challenges faced, and the individual outcomes that follow.
In Episode One, you’ll meet your host Colleen and her husband Kel, as they take you on their extraordinary journey to Moscow, Russia. It was there, just 5 years married and desperate to stop the rapid progression of her MS, that Colleen underwent HSCT.
What followed was an ordeal of unexpected challenges—physical, emotional, and logistical. Through it all, Colleen the patient, and Kel her steadfast champion.
Their story has been shared in Australian newspapers, radio and TV—but here, in their own words, Colleen and Kel share even more of their remarkable story, behind the headlines.
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Disclaimer:
This podcast is not intended to replace professional medical advice.
The views expressed in this podcast are those of the host or guest(s).
No story told, view expressed or opinion voiced, written or otherwise shared in any episode of this podcast is to be taken as medical advice, including when related in an episode as a professional opinion or professional advice given.
Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health or medical condition.
Content Warning:
Multiple Sclerosis is an unpredictable condition and the conversations and stories in all episodes of this podcast will contain reference to MS symptoms as well as situations experienced before, during or after HSCT - some of which may be disturbing or upsetting for some. In Australia https://beyondblue.org.au and Lifeline on 13 11 14 or https://www.lifeline.org.au are organisations which provide assistance - do please look after yourself.
MSMS: The Many Stories of Multiple Sclerosis
Motor Neurone Disease - discussion with MND NSW - #Podcasthon episode
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In this special episode we step away from MS in support of another neurological condition - Motor Neurone Disease (MND).
As a part of the international #Podcasthon charitable initiative, Colleen has chosen to support MND by raising awareness of that condition, and speaks with Andrew Collins from MND NSW to learn what MND is, and about the services and care needed to support people impacted.
To learn more or find out what you can do to help, or to donate please visit the MND NSW website https://www.mndnsw.org.au/
Please consider supporting the work of MND New South Wales (or the national body in your country), and do help raise awareness by sharing this episode.
You can join Colleen and other Australians living with MS in this podcast's Facebook group which was originally created to support those interested in HSCT and now exists to facilitate discussion on all issues relevant to MS.
Multiple Sclerosis and HSCT Australia - Facebook group
PS: I'd appreciate your donation to help in maintaining this podcast - if you could buy me a coffee or two please (donate $5, it's not real coffee! thank you!) - Colleen
Buy Colleen a Coffee - thank you!
Disclaimer:
This podcast is not intended to replace professional medical advice.
The views expressed in episodes of this podcast are those of the host or guest(s) and are not intended to replace professional medical advice.
No story told, view expressed or opinion voiced, written or otherwise shared in any episode of this podcast is to be taken as medical advice, including when related in an episode as a professional opinion or professional advice given.
Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health or medical condition.
Content Warning:
Multiple Sclerosis is an unpredictable condition and the conversations and stories in all episodes of this podcast will contain reference to MS symptoms as well as situatio...
Hello and welcome to MSMS Many Stories of Multiple Sclerosis Podcast. I'm Colleen Daniels, your host, and today we're actually taking part in Podcast hon. Podcasthon is an international initiative whereby podcasters dedicate an episode to a cause that they care about. And today, our podcast is going to be talking about motor neurone disease MND. And I'll be speaking with, in just a second, with Andrew Collins. Andrew is the support service manager with MND New South Wales, and he's waiting to speak with us. Hello, Andrew.
Speaker 2Hello, Colleen, how are you?
Speaker 1I'm really well, thank you.
Speaker 2Great.
Speaker 1All right, so I guess we'll just get started because I don't think a lot of people really know what MND is. So could you briefly give us an idea of what motor neurone disease is?
Speaker 2Sure. Well, motor neurone disease is actually a term for a group of diseases that affect the motor neurons. So the motor neurons are the nerves through our spinal cord through to the rest of the body and control our movement. So MND motor neuron disease is an umbrella term for a number of diseases. Have an effect on people's movement and the muscles wasting away as well, in their arms and their legs, things like speech, people's ability to swallow, and eventually people's ability to breathe.
Speaker 1So it's affecting the whole body.
Speaker 2It's what we call an uncommon disease, it's not a rare disease, but it is uncommon. We think around 2,750 people every year are to be living with motor nerone disease in Australia.
Current Treatments And Research
Speaker 1In Australia. So are there medications that can help?
Speaker 2There are a couple of medications. People are put on Riluzole. Um we're finding it it adds six to nineteen months to people's survival rate for their length of life. There's a number of drugs that are recently on to the market, so we're still seeing what effect they're having. So there are medications that are coming through, motor neurone disease, looking at you know, medications that can assist and support the ongoing progression of the disease.
Speaker 1So as the support service manager, what type of supports do you see as most needed, or most often?
Speaker 2So we have advisors that go out into people's homes, um, make sure they've got information about the disease, about symptoms, make sure they're connected. Helping them connect to and or help them if they're under 65 connect to the NDIS. We also provide things like you know, wheelchairs, communication devices, beds, um, armchairs, all sorts of things that we then loan out. And we also provide education to to allied health professionals um to make sure that they're aware of motor neurone disease and what it looks like.
Speaker 1Right, and that is so important that complete sort of understanding of what people with motor neurone disease are dealing with, I would imagine.
Speaker 2Yeah, Colleen, that's probably some of the some of the feedback that we really get. People living with motor neurone disease can sometimes struggle to find professionals with really good understanding of motor neurone disease.
Lived Experience And Finding Help
Speaker 1I I can speak to the work that you do do because I have personal experience in my family, um, my younger brother. And it's the first place that I went to was MND, New South Wales. And I can say that the help I was given was just so good. There was, I think there was a program that I did where you could go and learn about motor neurone disease. I remember doing that, it was online, and it was just so good for my family to have somewhere that they could reach out to. Like we need organisations like MND New South Wales, you know. We need that support. I mean, of course it's dreadful for the person who's affected, they need it but for the families too. It's really unknown. And what do we do and how can we help? And knowing that there is support there. So I can, you know, hats off for the work that you do. I know it's it's really worthwhile and people do appreciate.
Speaker 2Motor Neurone Disease New South Wales are there, we're we do provide equipment and um support, we're also about making sure that people have that information and the information they need and the connections to the health system. And we also have a care program that we just ask the carers to come together for a support group as well, just to make sure that their well-being is looked after. Yeah. In terms of helping individuals with motor neurone disease, I you know it is about just going and listening and talking to the people with motor neurone disease, and practical assistance.
Ways To Raise Awareness And Funds
Speaker 1Um, if people want to help or to learn more, people that are listening, I'll include some links in the show notes for anyone that would like to learn more or to support the organization's But particularly for providing support, do you can you speak to what people might be able to do to help?
Speaker 2In terms of I think one of the one of the broader things that we can do is um help raise awareness of motor neurone di sease. Um it's an uncommon disease, and the first time people hear about motor neurone disease is when they themselves or a loved one um is diagnosed. So raising some awareness around motor neurone disease, and we offer a a number of ways that people can help us raise awareness of motor neurone disease. We hold walks throughout New South Wales and and the ACT. And we do also provide support to people in um the Northern Territory , remotely. We're doing a walk in Darwin this year as well. Um, so that's an opportunity where people can not only get out and and have a good walk and and help raise awareness within the community around motor neurone disease, but it can also raise some money to help us you know purchase more equipment, run more support groups, all those sorts of things.
Speaker 1Right, because it all costs money, doesn't it? Every part of it.
Funding Reality And Community Events
Speaker 2It does. We do get some income through the NDIS uh through some of the work that we do, through coordination of coordination of support for people under the age of 65 and some of the equipment that we lend out to people under the NDIS. So we do get that, we got uh small grants from um New South Wales government, but over half the amount of money that we need to operate still comes through um our fundraising efforts, through donations. Um wonderful people providing us donations, um, or remembering us in their wills through bequests and wills, through activities like our walks that we operate, but also other people go out and do activities and things people that have especially impacted by motor neuron disease, very kindly go out and do some activities. Um, you know, I think people have dinners and all sorts of activities. I know there was lawn um mower races in the past there have been activities that have helped to support us. Um we're really appreciative of people and we wouldn't be able to operate without the the assistance of our great supporters.
Care Now While Research Advances
Speaker 1Yeah, you know, I think that's where the awareness raising comes into it. That understanding has to be there to know the necessity for the funding. There's an awful lot that's needed because just for an individual, for one individual, it's their whole body that deteriorates. And so people need help with every function of their body. I mean, I know you know.
Speaker 2that's right. The more awareness we get, I think awareness I think number one for the individuals that are living with, the challenges they have in their life, the more people know about it the better impact that we can have. Yes. Lots of ways that we would love awareness and I'm I know myself and whole team are very grateful for you, Colleen, for having me on. Um to help get our word out a little bit more. I think the more awareness made of motor neurone disease, the better, and the more that we're talking about it.
Speaker 1Totally with you there. I I think we it's just so needed.
SpeakerIt's a terrible condition to my own personal experience when my brother was diagnosed.
Speaker 1I just didn't know enough. So to get to the point where when someone hears about MND, they'll know what that means. So it's quite a learning, you know. And I I think it's quite big I can't think of the biggest word, but the biggest necessity I think it is. Is research and to slow it down significantly, that would be marvellous. So we need the money for the research. But while people are living with the condition, we need to help them live with it as well.
Gratitude And A Call To Support
Speaker 2And that's a that's a really key point for us, Colleen, as well. There's um, you know, there's been some recent announcements from the Australian government in relation to research M N D, and we applaud that. We think that's great. Our focus is in the care now for those that um have been diagnosed. Um so obviously we would love, I always say I would love to be out of a job Colleen. I would love, I would love for a cure to happen and or a treatment. Um so we we hope the research continues and we and we will remain forever hopeful that a cure can be found and can be found soon. In the meantime, we're here to to provide support for people that have that are diagnosed the disease and support their families as well. And we don't want to lose that focus.
Speaker 1Right. And all the carers, everyone around it, you know. Um so thank you. I'll say thank you for the work that you do. And for your time today. Well, I guess we have to let you go back to your work. I know you've got lots to do. So I really appreciate everything today, all the information that you've given. but people, please, everyone listening, I thank you too for listening to this special podcast episode where we've taken a bit of a step away from our usual MS conversations to learn about motor neurone disease. That's another neurological condition and one that urgently needs greater awareness and more research towards stopping it or at least slowing it down. We do share stories to remind one another that no one's alone. And that spirit I think extends far beyond just one condition. So I ask that you please, if you're listening, please consider supporting the work of MND New South Wales or your national body, wherever in the world you are, and do help raise awareness by sharing this episode. This has been MSMS, and I will say again thank you very much to Andrew for sharing all that information with us today and giving us your time.