Join Us at the Epilepsy Specialist Nursing Section - IEC 2025! - Patty Shafer (USA) & Ludivine Rohrer (France)
Hear about the upcoming International Epilepsy Conference (IEC) 2025 in Lisbon - with global lead Epilepsy Specialist Nurses Patty Shafer and Ludivine Rohrer! They talk about the Epilepsy Nursing Section at the conference and why we should attend! Each share how they address the emotional and behavioural aspects of epilepsy, things like physical exercise, and they chat about the significance of empowering nurses, sharing knowledge, and addressing often embarrassing topics related to epilepsy. Transcription and links to Patty & Ludivine are below! 👇🏻
Reported by Torie Robinson | Edited and produced by Carrot Cruncher Media.
Podcast
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00:00 Patty Osborne Shafer
“I recommend everybody to attend! So, just like I love to go and hear the psychologists, the physicians, the nurses… ‘cause I'm thinking about their issues from my perspective on what I can do, the same applies from them coming to hear what nurses do, because we're all working together as a team.”
00:19 Torie Robinson
Why should you attend the Epilepsy Nursing Section talks at the International Epilepsy Congress? Well - because: there are some fabulous people speaking - including inspiring epilepsy nurses - plus, even a few patients - from around the world. We shall be educating, learning from, and inspiring one another - on how to provide the best care possible for people affected by the epilepsies!
Today we hear from 2 of the most globally influential, lovely epilepsy nurses - Patty and Ludivine - who’ll be leading the pack in Lisbon!
If you haven’t done so already, please do like and comment on this episode, and subscribe to our channel, so that we can get way more people learning facts about the epilepsies!
We have the International Epilepsy Conference coming up in Lisbon in a few weeks. Like, it's really not that long [to go]! And us lot (amongst a few other people) will be working together to talk about epilepsy nursing! So, Ludivine, what will your role be?
01:17 Ludivine Rohrer
In the International Congress, I will be the chair of the half-day Nursing Symposium; which is a symposium for nurses where you will have some nurses talking about promoting education and self-management. So, we'll have some nurses from all over the world.
01:38 Torie Robinson
And what about you, Patty? What's your role in all of this?
01:41 Patty Osborne Shafer
So, we have another session that we're going to be addressing some of the emotional and behavioural aspects of epilepsy. And from the nursing perspective: what is it that we need to know and then how nurses might manage that; whether it's in the community setting in Africa (we have a nurse from Africa talking) or in an Epilepsy Monitoring Unit where some of the unique issues or changes in mood or behaviour come out when you're triggering off seizures, lowering medications…
02:09 Torie Robinson
I mean, [what] I can say from personal experience is that mood, behaviour, seizure activity, and a million other things are so interlinked. So, we can't just look at one thing at one time.
02:21 Patty Osborne Shafer
Oh, absolutely correct! You know, anything our brain can do normally, it can do abnormally when we're having seizures! Or when we're influenced by medicines or other therapies! And some of the more common areas of where seizures arise are the ones involved with mood and behaviour!
02:41 Torie Robinson
Yep!
02:41 Patty Osborne Shafer
So, when you're having seizures, that's gonna be different, or even the way we think and remember things. So, we have Dr. Gus Baker that's gonna be talking about that whole biology of mood and behaviour and how seizures are influenced, but then also how the psychosocial factors or stigma might play into it. And so that'll set the stage for addressing some of the nursing challenges.
03:03 Torie Robinson
So, Ludivine, tell us what are a couple of the things that we're going to be talking about.
03:07 Ludivine Rohrer
In this session, it will be divided into 2 parts. So, in the first part, we will have some people with epilepsy and caregivers who will talk [to] us about their experiences in epilepsy and what are their needs and how nurses can help. So, we will have, by example, a nurse from France who is in charge of a program to enhance the attachment bonds with the child in the first years of life (these children have West Syndrome). Yes, so it's not easy for us to create this attachment.
03:58 Torie Robinson
For the benefit of the child and the parents!
04:01 Ludivine Rohrer
Yes. In the second part, we will talk about safety. We will have a focus on SUDEP (because I think it's very important topic). And we will have a topic on physical exercise…
04:23 Torie Robinson
I think it's cool to talk about physical exercise because much of the time we'll talk about neurological activity and mental health, which of course are crucial. But again, as we were talking about before, Patty, everything's interlinked, right? So, I think physical activity and health is really important too.
04:39 Patty Osborne Shafer
Well, one of the things about the exercise is that so often healthcare professionals might tell the person with epilepsy or family to restrict activities, you know, because you worry about the danger of if they have a seizure. But, you know, when properly done with supervision, safety equipment, whatever, there aren't that many activities that are totally off bounds, but how you should do it might vary. Climbing mountains alone might not be a good idea(!), but physical exercise itself is critical! And there's that role of how can that help not only our brain, but can that help decrease seizures if one's doing better in their overall health, or is there any direct effect? So, we'll hear a touch of that.
05:22 Torie Robinson
Sleep quality affects mood, right, which affects seizures and exercise, sorry, affects sleep, which affects, like, the mood! It's always just one great big thing, isn't it?
05:31 Patty Osborne Shafer
Big circle! If any one part of that circle, you know, is messed up, everything else goes, I think.
05:39 Torie Robinson
So, tell us about the next bit then Patty, what will we be talking about?
05:42 Patty Osborne Shafer
So, one of our goals is to get nurses around the world comfortable in presenting some of their own work. Because there's so much good work being done by nurses but many times it seems like that's invisible. So, we're having these, what we call these “networking sessions” in the exhibit hall where nurses from around the world have been able to submit their ideas and they'll have 10 minutes to present and a 5 minutes of discussion to hear all this unique stuff that's being done around the world. And, in addition to learning what they're doing, it's developing that next generation of nurses to kind of elevate their skills, their leadership to kind of keep this whole nursing network going
06:26 Torie Robinson
And would you recommend for people other than the nurses to attend our talks?
06:32 Patty Osborne Shafer
Oh, I recommend everybody to attend! So, just like I love to go and hear the psychologists, the physicians, the nurses… ‘cause I'm thinking about their issues from my perspective on what I can do; the same applies from them coming to hear what nurses do. Because we're all working together as a team, ideally towards the same end.
06:53 Torie Robinson
The same end being quality of life and however one would achieve that. And I think that you do that the best through multidisciplinary teams, right, and working as one (as cheesy as it sounds).
07:03 Patty Osborne Shafer
And sometimes we might address some of the topics that you don't necessarily hear in just a basic… well, you don't hear in a basic science platform or as all physicians. So, it's a lot of good give and take that you can have.
07:16 Torie Robinson
Could you both give us an example of the type of things you hear about that you don't think patients and families usually bring up with their neurologist?
07:24 Patty Osborne Shafer
Well, embarrassing things is not necessarily, it doesn't have to be embarrassing, but “Can I have sex?”, you know “What do I use for contraception?”, you know, I mean, that's some of the same things. And “What happens if I have a seizure when I'm having sex? My husband doesn't wanna touch me anymore, cause he's afraid of doing that.”.
07:41 Torie Robinson
And, Ludivine, what do you think of what often comes up, especially, I suppose, with people with DEE and intellectual disability; what are embarrassing things that could come up?
07:51 Ludivine Rohrer
Embarrassing things. It's embarrassing - it's about constipation and food and some troubles like that. And physicians don't ask this question.
08:08 Torie Robinson
Mm-hmm.
08:08 Ludivine Rohrer
They ask about the food, but not the... I don't know the word in English!
08:15 Torie Robinson
Not the digestion and how it comes out the other end?
08:17 Ludivine Rohrer
Transit?! No?
08:19 Patty Shafer
Hahaha!
08:21 Torie Robinson
Yes! I like that! The “transit”, yes!
08:24 Ludivine Rohrer
Is it a good one?!
08:26 Patty Osborne Shafer
Yeah, it's perfect!
08:26 Torie Robinson
Yeah, no, I like it!
08:28 Ludivine Rohrer
Ok!
08:28 Torie Robinson
It's not “the” word, is it Patty? But I think it's a cool word to use!
08:30 Ludivine Rohrer
Hahaha! Because we are the specialists of this sort of problems and we can give some advice.
08:40 Patty Osborne Shafer
Well, it's a real common thing ‘cause you think about it is that if your activity is restricted for whatever reason, having seizures socially, you don't go out as much, you end up getting more constipated, you don't really wanna go. Medicine side effects. But, our gut is intimately tied into our brain and there are parts of the brain where seizures are coming from that influence how things move through your GI tract.
09:06 Torie Robinson
And also (I've done an episode on this ages ago), we were talking about digestion and constipation… and how constipation can actually affect absorption rate of medication. Right?! It makes perfect sense when you say that. It's just another reason to think about the corners and things that, you know, and the travel of one's food and yeah!
09:32 Patty Osborne Shafer
I think one of the things that we can do as nurses, is that before we actually try, I don't know, teaching people with epilepsy or families what their issues are, ask them to write down or bring forth what are the top 3 issues that they have, you know?
09:52 Torie Robinson
Mm-hmm.
09:52 Patty Osborne Shafer
And then that's where we might hear about some of these things:
Their GI tract's not moving right
They're worried about sex
They're worried about dying, you know, or;
How do I take care of my kid?
And then that can help us uncover those tough topics.
10:07 Torie Robinson
Yeah, and think another one would be, and you guys I know, hear about this a lot; is the social aspect of when having an epilepsy. How do you talk to the outside world about it? Things like employment, how do you, you know, becoming educated about your own disease is a real big issue, I think, for lots of people, right?
10:24 Patty Osborne Shafer
From my perspective, one of the big things is either:
Not knowing how to talk about it, or;
Being afraid that whoever they're talking to is going to think that they're different, that they're not going to understand the epilepsy;
[They’ll think] they're crazy, they're different and [they will] not want to hang out with them, you know? So, it's that fear of losing friends for fear of what they're going to think and then;
What happens when I have a seizure in public.?
So, those are tough things.
10:50 Torie Robinson
I think epilepsy nurses play a key role in that, in building the confidence of the individual, but also of the family. And I think if you build the confidence of the family too, that hopefully there'll be a little bit less overprotective and be able to balance what you do do and what you don't do better, would you say?
11:08 Ludivine Rohrer
Yes, that's the problem in the education. Sometimes the people with epilepsy is not the one who is more affected by the seizure. Sometimes it's the family and the parents. And you must educate them to a [be]….
11:29 Patty Osborne Shafer
Not be too overprotective?
11:31 Ludivine Rohrer
Yes. Too overprotective, yes.
11:33 Torie Robinson
This isn't all gonna be depressing. It's going to be, I think, an empowering session. We might even have a little bit of a giggle(!). Have you got any sort of, any other things to say about why people should attend?
11:46 Ludivine Rohrer
For me, this conference is a big way to showcase the nurses because the nurses are very important and they are often too discreet, I think. So, to see some nurses talking about their actions and to see how they can help people with epilepsy, I think it's really, really important to go and see that.
12:16 Patty Osborne Shafer
The other thing is that the International Congress gives nurses and all healthcare professionals and parents and people with epilepsy, who are there, a chance to see all the exciting things happening in epilepsy, you know? And so, you see some of the advances are [in research, care, and treatments], you know, new things that you might not hear about [outside of the conference], and you hear about it from all different perspectives. And then you can take that home and think about it. That can influence our practices in so many ways. So, there's so much gonna be going on there.
12:45 Torie Robinson
Thank you to Patty and Ludivine for giving us a snippet of what shall be going on at and why people should attend the Nursing Section talks at the IEC in Lisbon!
Check out more about Patty and Ludivine and their international work on the website t-or-i-e robinson.com (where you can access this podcast, the video, and the transcription of this episode) all in one place. Please do like and comment on this episode, and subscribe to our channel so that we can get way more people, around the world, learning facts about the epilepsies! See you next week!
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Check first episode
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Patricia Osborne Shafer, RN, MN, is a neuro/epilepsy nurse specialist and nurse researcher at the Comprehensive Epilepsy Program at Beth Israel Deaconess Medical Center in Boston and an instructor in the nursing program at Emmanuel College.
Since 1992, she has served as a professional adviser to the Epilepsy Foundation.
She is a member of the editorial advisory board for the Journal of Epilepsy and the external advisor for the Epilepsy Public Health Education and Health Promotion Campaign of the Centers for Disease Control and Prevention.
A person with an epilepsy herself, she also chairs the Epilepsy Foundation's Women and Epilepsy Adviser Committee and the organisation's National Cost of Epilepsy Advisory Committee.
LinkedIn patty-osborne-shafer
PubMed Shafer PO
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