This special episode is all about people living with neurological disorders.
We hear from 3 patient groups from a global, European and national perspective and discuss where the challenges faced are the same and where they differ. As well as exploring how the OneNeurology Initiative could help address these challenges.
We’ll also hear directly from three people living with different disorders: dystonia, restless legs syndrome and peripheral neuropathy.
For more information visit www.oneneurology.net
This special episode is all about people living with neurological disorders.
We hear from 3 patient groups from a global, European and national perspective and discuss where the challenges faced are the same and where they differ. As well as exploring how the OneNeurology Initiative could help address these challenges.
We’ll also hear directly from three people living with different disorders: dystonia, restless legs syndrome and peripheral neuropathy.
For more information visit www.oneneurology.net
Welcome to the one voice for neurology podcast, a series of seven podcasts exploring why it's time to make neurology a priority, how that can be achieved with a global and uniform response and what that could mean for the future of neurology, and those living with a neurological disorder. I'm Sam Pauly, and you're listening to episode three, entitled living with a neurological disorder. Thank you for joining us on this special series of podcasts through seven daily episodes, we're exploring the new one neurology initiative. In our last episode, we examined why the time to act for neurology is now. And if you missed that episode or our first episode, then do make sure to catch up through the website oneneurology.net, of course, at the center of any discussion about neurology, are the people living with neurological disorders and throughout the series, we're hearing from people directly touched by a disorder, but today this is our main focus and we hope you'll join in the discussions too on Twitter. You can find us at, at one neurology underscore, with the hashtag one neurology. Today, we'll be hearing personal accounts from three people, living with different disorders, dystonia restless leg syndrome, and peripheral neuropathy. And joining us to discuss why brain disorders are so much more than can be seen. And the commonalities between them. I'm delighted to welcome. Our three guests. Georgina Carr is chief executive of the neurological Alliance, a coalition of over 80 organizations working together to transform outcomes for the millions of people in England with a neurological condition. Russell Patten is director general of the European Parkinson's Disease Association or EPDA as the only European Parkinson's umbrella organization. They provide information and resources to all Parkinson's stakeholders with a vision to enable all people with Parkinson's to live a full life while supporting the search for a cure. And finally, here to give us a more global perspective. Francesca Sophia. Francesca is president e lect a t the International Bureau of Epilepsy or IBE. She's also a carer to her daughter, Beatrice, who is 1 1 years old and was diagnosed with epilepsy as a baby. A very warm welcome to you al l. And thank you for joining us.
STING - Prof Claudio Bassetti :Hi, I'm Claudio Bassetti, Professor of Neurology from Bern, Switzerland, and President of the European Academy of Neurology and you're listening to the One Voice for Neurology podcast.
Sam Pauly:Georgina Russell Francesca. Welcome Georgina. Let me come to you first. What challenges do you hear your members talking about in daily lives?
Georgina Carr :Understandably, the biggest challenge at the moment is around the disruptions, treatment care and support that COVID-19 has brought to violence. Um, in practical terms that's meant the, uh, neurosurgery has been delayed. It has meant that treatments that can slow the progression of a neurological condition have been delayed. And also there's been an awful lot of people who are isolating for the past nearly a year now, which is really taking its toll on their mental health. But more broadly, I think from now it's about redoubling our efforts to try and get services at least back to the pre pandemic levels. And that's going to take a Herculean effort to be honest with you from, from across the sector.
Sam Pauly:So Russell, um, I imagine quite a few of the COVID 19, um, issues are quite similar for your members as well. Uh, would you agree with that? And also what about sort of in daily life when we don't have COVID-19 what would you say? The daily challenges people face?
Russell Patten:Yeah, I would totally echo what Georgina has said. Yeah. I could almost can't add anything to it. I think, um, isolation, which is also something that's impacting, you know, PWPs people with Parkinson's, especially in COVID times, has increased. And I think generally, like I think so many neurological disorders, you know, access to treatment is a huge problem. You know, we, we have patients who contact us, asking us how come I can't get this drug in this country when it's available, literally next door. I think the other aspect is the HCPs on the whole don't know enough about PD specifically. So to find a neurologist who specialists in PD is not that obvious. And lastly is of course there's that thing that people think PD is for old people. Unfortunately, um, it's targeting the young and there are statistics out there that perhaps 10% of Parky's, people Parkinson's, are under the age of 50
Sam Pauly:Francesca. Do those challenges sound familiar to you as well, particularly internationally.
Francesca Sofia :They, they do, uh, though, you know, um, uh, epilepsy and the challenges that it poses to the life. People, uh, are mainly, depending on the part of the ward in low and middle income countries, the majority of people with epilepsy do not have access to medications. So, um, the treatment gap is a big, big challenge in those countries. There are two other major challenges in our lives. And one is, unpredictability of seizures that, you know, it's kind of condemning people to live in a cage of fear every day. And the second one is caused by penalizing legislation and sometimes violations of human rights.
Sam Pauly:And what would you all say in just a couple of words? And I know it's, it's difficult to, impossible to cover really in a couple of w ords, but what impacts do these challenges have on the wider society, family life, maybe Francesca, you could talk as a c are about what impact that has on y ou a s family l ife.
Francesca Sofia :You know, I have been living with epilepsy, uh, since, uh, nine years. And as you said in the beginning, uh, my daughter, uh, has, uh, got a diagnosis when she was nine months old. So, um, and after all these years living with epilepsy, I can tell you that epilepsy is horrible. It is always there, although you don't see that, it can catch you wherever you are with no notice, it's totally unpredictable. Epilepsy has no cure. The brain of my daughter will never be fixed. Epilepsy is a deadly disease. Apart from the seizure related accidents, there is a sudden death, SUDEP, that can happen during sleep. I learned about it from the web as many other parents do epilepsy is neglected on so many levels. The school systems are not prepared to deal with students with epilepsy. And it goes without saying that this struggles will only worsen during adulthood, when people with epilepsy will face discrimination in the workplace and isolation from social life.
Sam Pauly:and Russell, Francesca touched a little bit on working life. What impact does having a neurological disorder in your experience Parkinson's disease have on the working life?
Russell Patten:It's huge because as I just said, it's no longer old people who get Parkinson's it's, it's the young. Francesca's point earlier, you know, the legislators, the decision makers out there don't even realize that the burden that that's creating because of the fantastic carer system that neurological disease patients have. So I think it's, it's, it's huge. And there are huge cases of discrimination because the patients with Parkinson's can't operate in the same way. And I think is where opening up Pandora's box. And you almost get the feeling that the system doesn't really want to look at neurological diseases, because they know when they do, they're going to open up Pandora's box, they will realize the huge burden, but if they do and they start to collaborate, then we can reduce the cost to society.
Sam Pauly:Well, maybe let's move on to that Georgina I can see you nodding, as an umbrella organization and as Russell was alluding to,working together, how can these help with those challenges?
Georgina Carr :I think Francesca and Russell p ut it so eloquently. I guess, one of the common challenges for a lot of conditions, it's largely invisible as well. So the symptoms that can have the most profound impact on your day-to-day life, uh, may not be obvious to others. Indeed, there might be, you might feel that they're embarrassing as well. Then you might not want to disclose those things to your employer or to those closest to you either. And that that can present huge challenges. I think essentially more in common, to be honest with you then than kind of divides us, um, across neurology indeed, across kind of long-term conditions, more broadly, not least of all in, in trying to campaign for change and, you know, getting that attention and investment in, uh, in, in services that is so desperately needed.
Sam Pauly:We'll talk just a little bit more in just a moment. But first, during this episode, and during the series, we're hearing personal accounts from three people living with different disorders in our first one, Jean-Philippe Plancon has recorded a diary for us about living with peripheral neuropathy.
AUDIO DIARY - Jean-Philippe Plancon :My name is Jean-Philippe Plancon. I am 51 years old and I live in France in the South of Brittany. I'm a teacher I'm married and the father of a wonderful young woman. In 1999. When the n eurologist said to me, you are suffering from a peripheral neuropathy I was 30 years old. And I didn't realize a t that moment, my life was deeply and o nce and for all changing. The neuropathy is gradually, gradually destroying a part of my peripheral nervous system with an adverse impact of my physical abilities, my professional and personal life, including s equel effective issues in order to reduce my muscle weakness, fatigue, pain, and sensory m otor troubles. I have to undergo regular hospitalizations several times a year to receive infusions. Since 20 years, I have had to rethink my whole life differently. I've changed my job to adapt to my new condition. T hen I created 15 years ago, the p atient association in France. Today, my life alternates between periods of loss of physical autonomy during which simple gestures such as wal king, s having, closings the buttons on the shirt, or even cooking are difficult on the one hand and on the other hand moments during which the symptoms of the disease are brought under control with the help of treatments. Whether they affect the central or peripheral nervous systems, neurological diseases are like a large family members of this fam i ly sha re in common an affection of the nervous system. Even though the symptoms may manifest themselves differently. Because each of our lives and those, of our loved ones is disrupted by the disease. One neurology is a great initiative to bring the United voice of neurological diseases, patients to policy makers and all European citizens. The points for improvement for the future must focus on access to a re l iable diagnosis as early as possible throughout Europe, bett er acc ess to treatment where it exists and pulling apart all hea lth systems in the European union. Finally, it is essential to give priority, to research into useful treatments for the majority of neurological diseases. I'm thinking for example of the fight against neuropathic pain. I hope that thes e new init iatives wil l be the first in a lo n g series because patients need more to be done for them, because no one is safe from being effe cted one day. Thank you
Sam Pauly:Jean-Philippe Plancon there talking about his experience of living with peripheral neuropathy. Now I'm joined by Francesca Sofia, Russell Patten and Georgina Carr and w e've been talking about the challenges that people living with neurological disorders face. Now, I just want to talk to you a little bit about if you feel there's a difference of challenges If we're talking international European or national Francesca, you touched on the challenges internationally earlier in a few words, what would t he sort of challenges be? And of course, globally, there must be many different challenges.
Georgina Carr :The magnitude of the challenges we face changes and also the, the kind of challenges. In low and middle income country is the biggest challenge is about, you know, getting access to treatments, but also about stigma because you know, people with epilepsy in Africa, the se ar e incredibly stigmatized. Uh, w h i le if I look at my own personal view and perspective of, u h, o f a person liv ing in Italy and in Europe, the challenges I face are completely different, u h, c h allenges related to provision of, you know, better, u h, s e rvices and assistance, and even, you know, to the right to see research progressing and the nee d to have public funders investing and promoting research on epilepsy.
Sam Pauly:Thank you, Francesca and Russell, would you say there are differences across Europe that you see?
Russell Patten:Yes, I was going to say, no, they're only opportunities. Um, but no, of course there are challenges, but I think the opportunity is starting to awaken because if we look at neurological diseases, really the breakthrough was last year with the WHO/ WHA starting to recognize i t. And that's at the international level and y ou'd think, gosh, h ow'd they get t o t hat, that level? Can't they get it at a national level or regional level. And the opportunity is use that international group to put pressure on the European group who are part of the WHO package to put pressure on Brussels.
STING - Joke Jaarsma :Hi, I'm Joke Jaarsma, President of the European Federation of Neurological Associations and you are listening to the One Voice for Neurology Podcast.
Sam Pauly:Shortly. We'll be hearing from another audio diary of someone living with a neurological disorder. But just before that, I wanted to ask you all about the OneNeurology approach. Do you feel that this one neurology could address the challenges then and be of benefit? Georgina, let me start with you.
Georgina Carr :It's easy for me. Yes.[laughs]I'm the chief executive of a neurological body. So I'd certainly think there's more that we ought to be doing together. And quite frankly, uh, and if I'm thinking about, you know, what's going to grab the attention of people like Boris Johnson and so on, we have to be working neurologically. Um, we have to have the numbers behind us.
Russell Patten:Absolutely. Um, of course, you know, I defend people with Parkinson's, but I think being part of a bigger, broader family and the numbers count, and I think we have to accept that we've got a long way to educate, but yes, to answer, the One is absolutely key.
Sam Pauly:Francesca. Would you agree?
Francesca Sofia :I totally agree with Georgina and Russell a nd the value I see is, in building up o ne identity for neurological conditions. So h aving one identity wi ll h elp pass us to really be more effective in collaborating and working together. And this is the secret. I think as far as history shows it, for really facing the crisis and the challenges ahead.
Sam Pauly:So we'll come back to this discussion in just a moment, but just before that, Adam Kalinowsky is president of Dystonia Europe, and he's recorded this for us. Let's have a listen.
Adam Kalinowski :My name is Adam. I have been suffering from a rare neurological movement disorder called dystonia since I was 21. And now I'm 36 for many patients with dystonia it's takes several years to get t hat diagnosis and access t o treatment. Dystonia manifests with involuntary muscle contractions that c ause uncontrolled movements. There are many types of dystonia. In my case, my muscles are constantly trying to twist my head to the left. It affects almost every aspect of my life in the morning. After the first minute, my head is starting to shake. I need to quickly brush my teeth and shave before it starts. I u se the first minute of the morning before my brain w ake-ups and start twisting my head more and more. Practicing yoga reduces the pain caused by my abnormal posture, I prefer to do this when nobody's watching. With Dystonia, it's hard to stay st ill w ith your spine, perfectly straight. There is no cure for my disorder. There are treatments, but they ar e, don't always work. In my country. As in most European countries, there are no rehabilitation programs for my disease. Psychological care is al so not a s t andard. I have to deal with that myself. At breakfast, I always eat fast. I don't like using forks when your head is constantly moving. It is easier eating with your hands. After breakfast, study, I was fired from my job, uh, f or being too long on a si ck leave and had to think about a new career I could do despite dystonia. I study graphic design in the morning. When I still have energy by constantly fighting my muscles my energy levels drop quickly. And my pain increases throughout the day. In the afternoon it's very hard to do anything. During the first years of my illness, I avoided people. I had a complex because I looked different. I did not attend to par ti es, which I was invited to. Uh, I did not go to restaurants or cinema s. Isolat ion only made things worse. It took many years for me to start to change my mindset and ignore people' s strang e looks. In the evening, I use the rest of my energy to work as a patient advocate. After several years o f voluntary work for patient organizations, I am now t he president of Dystonia Europe. Patient organizations play a very important role in improving the quality of life for people with rare diseases. Only by working together, we can make our voice heard. The one neurology initiative means to me, that neurological disorders sharing the same problems like stigma, long diagnosis, time, difficult, access to right specialists and treatments, acting as one, w e can raise awareness, influence decision-makers and bring a real improvement in the quality of life of people suffering from neurological diseases
Sam Pauly:Adam Kalinowski that talking about his experience of living with dystonia. Y ou're listening to the one voice for neurology podcast. And today we're talking about living with neurological disorders. We'd love to hear your thoughts. So do make sure to join the discussion with us on Twitter. You'll find us at@oneneurology underscore. Now today's podcast, we're talking with Georgina Carr fro m the Neurological Alliance, Russe ll Patt en of the European Parkinson's Disease Association and Francesca Sofia from the International Bureau for Epilepsy. Russe ll, let me start with you now, because actually we ha ve not touched upon pain. How much of a challenge is management of pain for your members? Most PWPs have pain of some sort at some time or al l the time. And unfortunately, so often their sort of medical support will ofte n say, well, perhaps it's just, you k now, old age, they feel it, but you can't see it. So it's a huge issue. Earlier on, we started talking about the one neurology initiative, how joined up, and maybe Francesca, you could talk about this from your international perspective, how joined up is neurology at the moment?
Francesca Sofia :I don't think it is much, uh, you know, joined up. What I think, if I can just dream or provide a glimpse at the future that I see is that, t hat we should follow the example of the rare disease community. There are 7,000 different rare di sease c onditions recognized so far. And there are many neurological conditions in this group of course. This community has been able to give itself one single identity, despite the enormous diversity and heterogeneity. And in just a matter of a few decades, they have gone from a state of total neglect to, uh, you know, being in the focus of policymakers, regulators, biotech companies, big pharma. I think we shou ld fol low this example. Uh, I s ee this as an example to follow and I think we are on a g ood way.
Sam Pauly:Russell earlier you spoke about the one neurology initiative and the challenges as an opportunity. Um, what impact do you think a one approach could have on society?
Russell Patten:The key is to, to get neurological diseases really recognized as a huge burden on society. So I think we have to be, to Francesca's word disruptive, whether we do what the rare disease did, um, or what Alzheimer's did. And I just take that as an example, because I won't name him, but a French President took Alzheimer's as a key issue across Europe and, and that really put it on the political radar screen. So I think t hat the one neurology needs to be disruptive to go about it, but there is huge buy-in from all d isease s pecific organizations to go down that road.
Sam Pauly:Great. Well, we'll, we'll speak with you all a little more about, uh, the medical profession and people's relationships with that. And a little bit more about the initiative in just a moment, but first for our final audio diary, we're going to have from Daragh Bogan from EARLS, uh, he tells us about living with restless leg syndrome.
Daragh Bogan :Hello, my name is Daragh Bogan. I am 48 years of age. I live in Galway in the West of Ireland. Uh, I work for a government department and I live with a neurological disorder called restless leg syndrome, or RLS. RLS is a difficult condition to describe because it affects people in different ways. So each person that living with this has a different lived experience. For me, RLS arrives each evening at approximately half seven and starts e ffecting my limbs. So I get t hese sensations of insects moving inside of me, of electric jolts that make my limbs jump randomly. And the only way I can stop it is by getting up and moving. And that runs right into the evening. So when I go to bed in the evening, it's exactly the same. I go to bed a nd very often I'll have to get up, move around, go back to bed again and get up, move around. So it means on average, I'd probably get between four and four and a half hours sleep each night. And I think that's true for most people living with RLS. I don't remember a time when I didn't have R LS. Initially my parents probably just thought I was fidgeting, tapping feet, perhaps being a little disruptive, but by the time I got to college, the symptoms were a lot worse and I h ad to seek medical advice. And if we j ump forward, perhaps 17 or 18 years, that's when I was actually diagnosed a nd in the intervening period I'd seen maybe eight to 10 doctors, none of whom were able to tell me what was wrong. I was booked in for MRI scans. Again, nothing i s showing as to what was wrong. And it was only when I searched on the internet and brought my findings to a doctor and said, I think I have this, that I was formally diagnosed with RLS. At the time awareness for RL S was very low. And there has been a lot of movement in that. There's an awful lot more awareness of the condition today, but unfortunately there's still no cure for RLS. There's simply lifestyle adaptations. The re's so me medications that can help to varying degrees. Um, bu t it does actually affect every facet of life. So a car journey, going on a plane, going to the cinema, these are all things that are real challenges for people with RLS. Because as soon as we relax our limbs start playing tricks on us. And of course there's a st i gma that goes with many of neur ological dis orders and RLS is no exception. I've been ridiculed at work for it. Um, I h ave been ridiculed by friends for it. Pe ople don't understand what it's like and they don't know what it's like to live with it. In summary, I would say RLS means you are tired all of the time and the OneNeurology initiative is so important because it's going to give a voice to tens of millions of people across Europe, who live with neurological disorders, who often feel forgotten who feel they have no voice, including people living with RLS.
Sam Pauly:Daragh Bogan there talking about his experience of living with restless leg syndrome To finish today. I'd like to look at the relationship people living with disorders have with the medical profession and the medical profession's response, as well as a final thought on the initiative itself. Now we just heard from Daragh Bogan and he said it took a hugely long time for him to get diagnosed. Georgina, let me come to you first. Is this something typical? And how would you say people living with neurological disorders feel their relationship is with the medical profession?
Georgina Carr :I'd say delays diagnosis is all too common, to be honest with you. Um, and that is true across neurological conditions. Um, that might be because there's low awareness of certain neurological conditions amongst primary care physicians, for example, it might be that some of the symptoms that might indicate a condition such as cognition, fatigue, aren't terribly clear to the person or indeed to their healthcare professional.
Sam Pauly:Russell do you see differences across the countries within Europe?
Russell Patten:Oh gosh. Yeah. Don't get me going there. Yes, huge. I mean, I think the relationship between patients with HCPs because of money is fantastic in certain parts of Europe, Scandinavian countries, and not as good in other parts of Europe. So money is the key. I think the other aspect I really want to sort of support Georgina, not only is delayed diagnosis, but in PD, there's also misdiagnosis. So often people go to their GP and they say, I've got a frozen shoulder and they think that's it. But actually that could be at the start of PD. I think the other aspect is, and I said it earlier on is I think there are not enough specialists who understand PD in particular. Now I'm, I'm defending PD specifically, but to the point of having to go to your GP a number of times before you are even referred to a neurologist, or then that whole issue of how the diagnosis is, is conveyed to that patient, how it's explained. To be honest, many HCPs, I know I'm not going to be liked for this, but are very poor communicators. In a way, we've got to educate HCPs to say, you know, get the communication, right, you will go a long way to have a happier patient who then becomes more open, because we know many people with PD li e about their conditions. They say, yea h, e verything's fine.
Sam Pauly:We are coming to the end of this episode, but before you all go, I'd just like to ask you all a little bit. I mean, we've had these audio diaries, people sound so resilient. What gives individuals hope and resilience and what are your hopes for the future of the initiative? And the future
Russell Patten:Hope comes in many shapes and forms. I think new treatments, of course, the hope that they will be cured one day. And somebody said, you know, I'm 28. I believe that in my lifetime I will be cured. And I think generally, um, better understanding and management of the treatment. And the last point is that decision-makers, politicians and ourselves, not only put the patient at the center, but also the carer, because so often the carer is the one who's actually talking to the HCP or even the neurologist. So I think the carers are the silent, unknown, but they're the ones who I think are absolutely key.
Sam Pauly:Georgina, let me, let me ask, you that as well.
Georgina Carr :To be honest with you. People with neurological conditions have given me an awful lot of hope that you know, the resilience that they've shown and the passion that they've shown to drive change is just so humbling to me. And, uh, really does make me feel like we can change things. Um, to be honest.
Sam Pauly:and Francesca, just a final word from you, does the one neurology initiative bring you some hope?
Francesca Sofia :It does definitely. Uh, it brings actually a lot of hope, because it provides me with the ground to really exploit the potential that I see in my daughter, despite her condition and in everybody else, uh, living with a neurological condition. I believe t hat there is still a lot of potential to live a happy life for my daughter and everybody else. And I think that through the one neurology i nitiative, we can really create the critical mass to harness that potential.
Sam Pauly:Well a great note to finish on, that is all the time we have for today's episode. So I'd like to thank all of our guests for sharing their experiences and for their insightful views. Now don't forget. We'd love you to join the conversation on Twitter and share your voice or even better share a video. You'll find us at, at oneneurology underscore using the hashtag one neurology. Now do join us again for our next episode. Number four, when we'll be zooming in on treatment, talking about solutions that currently exist, the value they can offer and looking ahead at some innovative new solutions, I do hope you'll join us then, bye-bye Thank you for listening to the One Voice for Neurology Podcast, produced on behalf of the European Federation of Neurological Associations and the European Academy of Neurology, the umbrella organizations, representing patient organizations and neurologists in Europe with active contribution from the European Brain Council produced and hosted by Sam Pauly.