Medical Series S1E2: Breaking the Silence with Dr. Jill McGarry: Mental Health Support for Chronic Sleep Disorders

In this episode of Narcolepsy Navigators, hosts Kerly and Sakhara, both living with narcolepsy type one, are joined by Dr. Jill McGarry, a clinical psychologist with 28 years of NHS experience. They delve into the importance of holistic health and mental health for managing narcolepsy. Dr. McGarry discusses strategies like energy level management, routines anchored by consistent wake times, and mindfulness. The conversation highlights the profound effects of psychological support, the importance of timing and sleep hygiene, and the benefits of a balanced diet. The episode underscores the need for a multidisciplinary approach in supporting individuals with narcolepsy and the potential benefits of community support.

Transcript

Dr Jill MC Garry
[00:00:00] Kerly: [00:00:00] Welcome to the brand new Medical series on the Narcolepsy Navigators Podcast, where real stories meet expert insight in this special series where diving deeper into the medical side of Narcolepsy. Not just the condition itself, but the often overlooked comorbidities that many of us face from sleep apnea and heart disease to high blood pressure, and even dementia.
[00:00:20] Kerly: We'll be unpacking how these conditions interact with narcolepsy and what it means for our daily lives. We'll be sitting down with leaving x. Where it's the odds, the questions that matter. How can we prepare for these challenges before they catch us off guard? What tools and treatments can help us manage them effectively?
[00:00:37] Kerly: And most importantly, what can we do to slow down the progression and protect our long-term health? Whether you're a newly diagnosed, a long-term warrior, or supporting someone you love, this series is here to empower you with knowledge, clarity, and practical advice for the journey ahead. So grab a cup of tea, settle in, and let's explore the full pitch of narcolepsy together.
Welcome to Narcolepsy Navigators
[00:00:56] Kerly: Hello, welcome to Narcolepsy Navigators. I'm Kerly your host. I have [00:01:00] narcolepsy, type one, and
[00:01:01] sakhara: I'm Sakhara your co-host and I have narcolepsy type one .
Introduction to Dr. Jill McGarry
[00:01:04] Kerly: Today we are here with Dr. Jill McGarry and welcome to the medical series. Today the topic is Holistic health and Mental Health.
[00:01:12] Dr. Jill: Thank you very much,
[00:01:13] sakhara: yes, we are happy to have you.
[00:01:15] Dr. Jill: I am a clinical person and I have got a doctorate, so it's not a research PhD, but I'm a clinical psychologist. So when you might speak to medical people to get medication, , you would speak to me to get psychological support or understanding, around the condition, as well as the medication.
[00:01:34] sakhara: That's good to know.
[00:01:35] Dr. Jill: Yeah,
[00:01:35] sakhara: So here is a little about Dr. Jill McGarry. Dr. Jill McGarry, clinical psychologist with 28 years NHS experience, specializes in psychological support and sleep help with advanced training from Oxford University and Sleep Unlimited. Jill runs a thriving private. Sleep Clinic, which [00:02:00] is annually incorporated in the autism and A DGD show.
Understanding Narcolepsy and Mental Health
[00:02:07] sakhara: We're gonna start with narcolepsy and mental health. it's such an important topic because when we think about narcolepsy, mental health is not something that comes to mind, and a lot of people who. Are learning about narcolepsy or don't know about it. They say, oh, you're probably just sleepy. Or, if they find out that, your mental health is also affected along with narcolepsy, they're like what does you being anxious or depressed have to do with your sleep disorder? I'm very glad we're having this discussion today . My first question is, what are some common. Psychological changes that you've seen that people with narcolepsy face, and how do you think counseling can help address them?
[00:02:49] Dr. Jill: I worked with a lady who had narcolepsy. Well, I worked with quite a few people, but one of the ladies at the Manchester Sleep Clinic she was put on medication for orexin, but she was also still [00:03:00] struggling. And that's not uncommon. And so she was referred to me for some psychological support. And we looked at her energy levels because we all work in 90 minutes energy level. At the start we're at high energy, and then 45 minutes later we're at low energy, and then we go high energy again. Everybody's on 90 minutes. Some people are a little bit longer, some people are a little bit shorter. And she began to be very aware of what her. Cycle looked like. And she could feel when she was feeling like in low energy, a bit like me, before I was coming on the podcast, I felt like my energy had dropped because I was doing a very boring task. So I went outside, got some sunshine, did a little walk in the garden. So I've got some activity in. I can do that to increase my energy levels. But for people with narcolepsy, sometimes that doesn't work. Sometimes you can push through things and give yourself some energy, but other times you can't. So being aware of where your energy levels are can be really important. Because for this lady, she was able to emphasize doing the [00:04:00] important tasks at a high energy level and not at her low energy level to make sure the important things got done that day. And that's a very different way of operating from what most people do. If I think about me today, I've done some tasks for two hours, three hours and I've moved from one to the next without even thinking about my energy levels or what was the important task that I must get done today?
[00:04:22] Dr. Jill: It was there in my head, but I didn't have to prioritize it in quite the same way and clock watch when I was doing it. For her, knowing when her high energy levels were and making sure she used those timings to the best was really important and made a difference to how she was able to function and get the stuff done that was essential for her to develop her own business. So hopefully that explains one of the people I worked with, and another lady that I worked with, she found it really hard to be self-aware and to work with her narcolepsy. 
Mindfulness and Narcolepsy
[00:04:59] Dr. Jill: So the first thing we did was we did some mindfulness. I dunno if [00:05:00] you've heard of mindfulness.
[00:05:01] sakhara: Yes. 
[00:05:01] Kerly: Yes. 
[00:05:02] Dr. Jill: Yeah, so mindfulness is all about being present in the moment, not being in the past and analyzing the past or thinking of the future and planning for the future. Our brains are really clever. This frontal lobe is, was what makes us human and better than animals because we can plan and we can sequence, but it's a very big part of our brain and a very strong, powerful part of our brain. So it often likes to analyze the past and plan for the future. It doesn't like staying in the present. Mindfulness helps you stay in the present because what we need to do is make better choices. And if we're always reacting to things that are thrown to us throughout the day rather than choosing how to respond because we're wanting to be present in the moment and making good judgements on how to spend our time, especially when our time is deprived like, it is with narcolepsy then it's hard to do those tasks. Doing mindfulness activities is a bit like going to the gym for the brain to help you be in the [00:06:00] moment to make better choices. You would go to the gym for your muscles to make them work as best possible. I love using, the analogy of looking after your body and the story of two Axman who's taken part in a competition, and there's a wall between them, but they've both got the same piles of wood to chop. And they the bell goes off and they stop chopping and they can hear each other because the wall's not soundproof. And then every now and then one of the axmen can hear the other stopping and he's ha, I'm getting ahead of him. I'm getting more wood chopped. I'm gonna win this competition. And he keeps hearing him stopping every now and then he is what is he on about? Is he not really that bothered about this competition? I definitely wanna win it. I won that trophy. And then at the end of the time. They stopped and they were able to lower the wall so they could see each other's wood and how much had been chopped. And the one that wasn't chopping all the time had chopped more. He'd won by far the competition. And the other guy was so furious.
[00:06:58] Dr. Jill: He said to him, he said, why have you chopped [00:07:00] so much wood? And he said every time I stopped I wasn't just lazy, just sitting around doing nothing. I went away and I moisturized my hands. I went to the loo. I got myself a drink, I got myself a massage. So actually looking after your body and looking after your mind so you can function at your best is really important. And I think that analogy kind of rings through for anybody in any job, doesn't it?
[00:07:26] Kerly: That's amazing because you would never think that if you're taking time out to do extra things, how are you making up that time?
[00:07:33] Dr. Jill: You're gaining productivity . you're not gaining time . but you're using your time more effectively. 
[00:07:39] Kerly: Yeah. So when you come back, 'cause you were rested you work, you do faster. A shorter time. But yeah. I can see why the brain would tell you the opposite. That's very interesting.
[00:07:47] Dr. Jill: For narcolepsy, taking those gaps, taking those naps is important cause your body needs it more and knowing that you'll come back stronger rather than weaker. 
[00:07:56] Kerly: I'm gonna try the 90 minute rule. I've never heard of it, but [00:08:00] I can see how this would be very useful because even if it's just three days of just sitting around and writing down. How your day's going and when you felt tired and when you didn't feel tired and see where the pattern lies. And I think finding the pattern means that you're not guessing. 'cause right now you're almost guessing, like you're hoping that, like even say with the interviews, I'm hoping that I put the interviews at the right time. That before I have the interview, I have a nap, so I'll be okay. But I don't actually know if that is a very good, productive time. I'm just hoping it'll be okay because I had the nap before, but maybe there is a different time that's actually better and I just haven't realized.
The Importance of Routine
[00:08:36] Dr. Jill: And what would be interesting kerly is if you also think about the same way that women have periods, we have a monthly clock that tells us. What our body's doing and why it's doing it. It has a daily clock. So if you can get yourself into a nice healthy routine of always getting up at the same time of day, then you are helping your body get into that nice 90 minute rhythm. And the more [00:09:00] you keep switching your get up time, the more often your clock's going, oh, 90 minutes is starting at a different time today, as tomorrow. Whereas I think for people with narcolepsy, sometimes they struggle and therefore they keep changing their get up time to start the day, and that is actually compounding, making the narcolepsy worse. So really noticing, like you said, I think it's a great idea kerly of just spending a few days just noticing your cycle of energy, but try and anchor your get up time so that you can begin to see there might be a routine to it. Because if you keep changing, you get uptime, then those timings might shift too much. 
[00:09:38] Kerly: Yeah, that's so true. I always say for instance, with the cats, they have the best internal clock ever. Like even when the clock goes forward or the clock goes backwards or they don't see the time or have a clock, to look at, but they always know when it's damn six o'clock so they can have their food, they bang on, they'll walk in and look at you, sit down in the [00:10:00] kitchen, how do you know this? And when it's wake up time, they know, especially if you've gone past the time that they think was the breakfast time.
[00:10:08] Dr. Jill: And that's because all animals have what we 
[00:10:11] sakhara: call a circadian rhythm. It's a very posh word for meaning, like an internal clock that I spoke about before. So we now know that if humans don't get any sunlight and we put them in a factory in their windows or in a cave their clocks would run on a 25 hour clock, and we need sunlight to reset it to 24 hours. If we were an elephant, I think their clock is 28 hours. So every animal is out of sync. And only gets back to 24 hours by getting daylight. We are no different to any other animals. We need daylight, but we also are running on a 24 hour clock. But because we are clever humans, we think we can have artificial light that gives us as much as sunlight does, but it doesn't work like that. We actually need to get out behind the glass beyond the glass. So if you wear sunglasses or [00:11:00] spectacles or you're in a car with glass or you are in an office with lots of glass, any of that glass stops the goodness of the sunlight getting into your eyes to reset that circadian rhythm every day. Wow. Back to 24 hours. I think it's an important element that we haven't explored for people with narcolepsy to help you get into a better rhythm so that your sleep hygiene.
Sleep Hygiene and Nutrition
[00:11:24] sakhara: Supports your condition of sleep, because I don't know if for either of you, you had any education around what sleep hygiene is and isn't. 
[00:11:33] Kerly: It's interesting you say that. 'cause I was gonna say what you've talked about, I would be happy to go along with, but usually like when doctors are talking about sleep hygiene, they don't make it sound like this. They're just like, oh no, it's not this. 
[00:11:44] sakhara: No, they don't. It's usually oh, you need more rest and you need this, and you, but the way you're talking about, you're going deeper on what we need and it's not just rest like you said, we need to go out and get sunlight. And I've actually tried that. The going [00:12:00] outside, taking my glasses off, not looking directly in the sun. 
[00:12:03] Dr. Jill: I don't want to burn your retina. 
[00:12:05] sakhara: Yeah . i've taken off my glasses and my sunglasses, and just enjoyed the sun for a little bit. So with the 90 minutes and talking about circadian rhythm, would you recommend people with narcolepsy getting up every day at the same time. They set an alarm or they just wake up?
[00:12:23] Dr. Jill: We were very lucky when we didn't have artificial light that we would automatically get up when the sun rose. So we all had an automatic clock that would do that. Today, we don't, we have blackout blinds , alarm clocks, and we have a different time schedule than we would've done when we were living more in line with the planet. So it is really important to set an alarm and always get up at the same time when you can and as often as possible. So for me, my get up time is eight o'clock. Even when I'm on holiday, I try and keep to eight o'clock, get up time because you can still enjoy the day even on holiday, and eight o'clock's not gonna [00:13:00] affect you enjoying the day. There are a couple of times like when I'm flying away to a holiday that I'll have to get up early, but they're the. Infrequent occurrences. We often talk about social jet lag in the fact that some people get up at a completely different time at the weekend to during the week. And what we know is that we call it social jet lag on purpose because it is very much a holiday jet lag If you crossed time zones to go on holiday. So I live in England, if I went to say the Middle East Dubai type area, then I'd be going across, I think it's three or four time zones. And our body finds that really hard. It in fact takes your body two weeks to get used to being in a new time zone. You may feel like you've got into it and you can do it because you've pushed through it, but actually your body systems haven't realigned to that new timescale as quickly as you think. And that happens for animals as well. If we get up at the weekends as if we're living in a different time zone because we get up like one, two [00:14:00] hours later, our bodies are outta sync. And therefore, I think for people with narcolepsy, it makes those conditions far worse because. Having that routine is one of the four areas of sleep hygiene. And we, and I call it one of the four areas because even when you've got a condition, a sleep condition, you should still do it. It's a bit like going to the dentist. You do dental hygiene no matter what. Whatever dental problem you've got, you still do the dental hygiene. You still floss your teeth, you still brush your teeth, even if you need root canal treatment and a brace. And the same for hand hygiene, you still wash your hands. Even when you've got a stomach bug, You don't stop doing the four aspects of sleep hygiene. No matter what sleep condition or health condition you've got, you still need to do them. And one of the four is routine. So I would say, if we can get people with narcolepsy having a nice, healthy routine to their get and anchoring it with their getup time, not their bedtime, [00:15:00] then that can make a big difference to the impact that the narcolepsy can have. Does that make sense?
[00:15:05] Kerly: Yeah, it does and weirdly enough, I think my hygiene, got better when I went on xyrem, because you had to eat a certain time before you could take the medication and then otherwise you wouldn't work. And then you had to go to bed. At the same time every night. So in order for that to sync up, yeah. You had to, learn to do it, to make sure you, at this time, so you had this much time in between so that you could go to bed at 11 and if you ever went out of that, it just messed up the whole like system.
[00:15:34] Dr. Jill: Yeah. So that's really interesting, kerly. So maybe some of the medication effects were also the effects of having a healthy routine.
[00:15:42] sakhara: Yeah, I know. 'cause for me, when I first started taking armodafinil, there was a period where I had insomnia for those three or four days, but it was at nighttime and I think because the medication lasts so long, it's like nine, 10 hours. I would get [00:16:00] ready for bed , I'd have all this energy and I couldn't sleep but they said that was one of the side effects though. Insomnia. 
[00:16:06] Dr. Jill: Yeah, and I mean it does happen with the medication. So there is a nice treatment now called cognitive behavior therapy for insomnia. So if your insomnia had gone on for longer Sakhara, then two or three days. If it had gone on longer than six months, then we might consider using some of those techniques to help you. But luckily it sounded like it only lasted a few days. 
[00:16:29] sakhara: Yeah.
[00:16:30] Dr. Jill: That's good. But sometimes people ask me what the other three aspects are of sleep hygiene. So we talk about setting a routine, it gets up time and sticking to those routines. The second one of the sleep hygiene is eating well. So using coffee to your advantage, coffee is a pick me up. If you need to boost that energy level using caffeine I would call it an adenosine in restrictor. Adenosine is the chemical that makes us feel sleepy [00:17:00] so there are lots of things that are quite complicated to understand in science and sleep. I try and make things as simple as possible. So I describe it a bit like a toilet. 
[00:17:09] Kerly: Okay. 
[00:17:09] Dr. Jill: So getting off to sleep is what we call a two process model. Yeah. So there's two processes to it and there are two processes to a toilet working. You need both. The flush. A flush handle. A flush button. A flush chain. And you also need water to build up in the tank. Yeah. So for a toilet to work, it has two processes and sleep is very like that it needs, so instead of having water pressure, what it needs throughout the day, is adenosine building up in that tank? So that Adine fills in the tank, but that flush button is made of another chemical called melatonin. So melatonin is made from the sunlight in the day. So when I said get out in the morning and get some sunlight and you know it's good for you to get that routine, that will create some more melatonin. So your flush button works people with narcolepsy. Don't [00:18:00] have any problems in creating that melatonin. It's no, there's no relevance for you to get more melatonin by taking medication or food. But what you might want to think about is that tank building up with adenosine, your tank probably fills up with adenosine really quickly because that's what makes you feel tired. Tired and sleepy, is your adenosine tank is filling quite quickly. The more you can stop that tank filling up, the more awake you will feel. Coffee stops that denine molecule getting into the tank. So if you think a bit like the molecule of water, if you've got something else attached to it, it's too big to get into the tank through the pipe. So that's what happens with caffeine. It binds to the adenosine molecule and stops it getting into the tank for a few hours. It depends on the individual. Everybody's sensitive to coffee in different ways, so you can use coffee and other nutrients to support your sleep. You might wanna be thinking about avoiding alcohol because [00:19:00] alcohol affects the quality of your sleep. You might want to be thinking about food that's high in pre and probiotics to help you sleep because that gives you more melatonin. So making sure you eating all the right foods and drinking the right things and making sure you're hydrated earlier on so you get a good night's sleep so you're not getting up to go to the loo.
[00:19:20] Dr. Jill: All of those things add into that situation, but kerly you are right. You know that medication that you talk them said you want you to eat at a certain time is really helpful because that circadian rhythm that was talking about when I said that. Our bodies do different things throughout the day, like they do different things throughout the month.
[00:19:40] Dr. Jill: We know that our heart does different things throughout the day, and our spleen does, and our stomach does. So if you give it food at the right times of the day, then it gets a message. From the body to the brain to say, oh, actually mealtime. So it's either lunch, breakfast, or dinner. Okay. You've given me a nice signal for what my body should be [00:20:00] doing at this time of the day.
[00:20:01] Dr. Jill: And some people say to me, oh, Jill, our bodies don't have clocks like that. And I say They do. And you know they do because we never go for a poo, but we might go for a wee. And that's because our bowel has a clock. And when it's nighttime, it shuts down and it doesn't wanna go for a poo.
[00:20:17] Kerly: Oh, that's interesting. 
[00:20:18] Kerly: Yeah. That is really interesting. After you've slept and then you wake up in the morning, then you wanna go? 
[00:20:23] Dr. Jill: Yeah. Usually takes an hour for your bowel to wake up in the morning. Oh. So you know that to some extent that your body, so sometimes people with narcolepsy don't trust their bodies and trust their sleep.
[00:20:34] Dr. Jill: So now you know that your body doesn't go for a p at night. Now you know your body is doing the circadian rhythm bit. Okay. Yeah. Some parts of your sleep are still functioning well. 
[00:20:44] sakhara: Wow, 
[00:20:45] Dr. Jill: that's interesting. 
[00:20:46] sakhara: Yeah. That is really interesting. I had a question about, you said one, one of the four was coffee and caffeine.
[00:20:54] sakhara: So like other people drink coffee and caffeine keeps them awake. What about the people that. [00:21:00] Caffeine doesn't keep them awake. Is there another suggestion?
[00:21:03] Dr. Jill: There, there is. So yeah, there isn't another, it doesn't have to be coffee. It could be other forms of caffeine you could try. Okay. But there isn't another substance that does the same as caffeine and as in binding to that adenosine.
[00:21:18] Dr. Jill: Everybody's different though, so I'm not very sensitive to coffee so my binding's not very strong. So I can drink coffee at all quite late at night and it not keep me awake. And, but my husband's the opposite. He can't drink coffee after 11 o'clock in the morning ' cause it will stop him from sleeping.
[00:21:35] Dr. Jill: So knowing, all that stuff I was saying before about being self-aware. Being self-aware about. Can you take coffee or not? Can it be in your back? Your toolkit to help you stay awake or not is probably the most important thing. It might be, like I said, there's four parts to sleep, hygiene and coffee and caffeine is one, is only one of, is part of the nutrient part of that for, so there's nutrients, there's routines, there's [00:22:00] light, and there's heat
[00:22:01] Dr. Jill: and coffee is only one of the nutrients you might wanna be making sure you're careful about the alcohol you take. You might wanna be thinking about when you eat to help boost your circadian rhythms. You might wanna be thinking about what food you eat to make sure you get lots of pre and probiotics into your body.
[00:22:19] Dr. Jill: So there are caffeine might not be the solution for you, but there might be other parts of that nutrient. Factor that might be useful to you as an individual. Does that make sense,
[00:22:30] sakhara: yes, definitely. It does make sense. In a, nutrition type of way. Because one of the things I've learned, in this journey is how important nutrition plays with your narcolepsy.
[00:22:43] sakhara: Carbs are a big no-no, but when you have narcolepsy, make sure you eat a lot of fruits and vegetables. you wanna have a balanced diet. 
[00:22:51] Kerly: Yeah. 
[00:22:52] Dr. Jill: How much harder is that with Narcolepsy? Because preparing food is not an easy task, is it? When you don't have much energy. 
[00:22:58] Kerly: Yeah. It takes out so many [00:23:00] spoons.
[00:23:00] Dr. Jill: Yeah so I will often talk about easy, quick wins. So buy hummus and carrots and celery. Yeah. You don't even need a cook hummus. It's in a packet. It's always very healthy, but if you feed it with carrots and celery, you are adding to good nutrients in your body.
[00:23:14] Dr. Jill: Anything that's a quick win, like fruit should be your snack food, instead of reaching for a bag of crisp reach for a banana, it's as quick as to open if not quicker. Or a, or if you want something like, as a treat, rather than buying some sweets or a cookie, maybe buy yourself some lovely exotic fruit, like some strawberries and raspberries or some passion fruit.
[00:23:36] Dr. Jill: They're just as easy to open as those other things. They've just not been labeled as treats these days. And one of the quick wins for cooking is eggs. How long does it cake take to make scrambled eggs? Probably quicker than it is to get to McDonald's.
[00:23:50] Dr. Jill: Quick wins. We need to relearn some habits that that society put in the way, don't they? You don't hear many adverts for how to cook eggs in different [00:24:00] ways, do they? You get more adverts for kfc than you do for that. So we have to reinvent the good things that are naturally out there.
[00:24:09] sakhara: Yeah, in cooking things, I've always, been afraid that I'd have a cataplexy episode and burn, burn food or burn myself 'cause it's happened before. Yeah. But I had a slice of cornbread and then. To counteract the car if I had an apple.
[00:24:24] Dr. Jill: So for me I didn't have any breakfast this morning. I'm an intermittent fast, so I don't eat my first meal of the day till one o'clock. But what I had for my lunch today was yesterday's dinner. We had a barbecue last night 'cause it was lovely weather. So I had like a broccoli salad, a bit like a cold slaw. We had some potato salad, pork and chicken. And then we had some melon cut up already. So that was my lunch, and that took no time at all. Because you're spot on Sakhara you do not wanna be burning yourself 
[00:24:54] sakhara: because you're falling asleep while you're cooking.
[00:24:56] Kerly: Yeah. A hundred percent.
[00:24:58] Kerly: What does holistic [00:25:00] medical support look like for someone with a chronic sleep condition? 
[00:25:04] Dr. Jill: Oh, what a great question. So it can look at different, depending on who's in the team that you're working with. So in the Manchester sleep team that I worked in, the holistic team was made up of the doctor that prescribed the medication, the physiologist that looked at the scores on your night study.
[00:25:22] Dr. Jill: The pharmacist who prescribed the medication. So that's all like the physical health side of things. And then added to that team was myself and the psychologist. We had a dietician in the team and we also had a physiotherapist. So thinking about your exercise that you do to try and help with your energy levels.
[00:25:41] Dr. Jill: But also your general health and thinking about with a dietician what food you can cook and what you can do to make it as accessible as possible in the healthiest form is useful. Sometimes people might have an occupational therapist in the team.
[00:25:55] Dr. Jill: We weren't fortunate to have that, but that can often be really [00:26:00] helpful when you're trying to get into employment, making work accessible for you. We live in a modern world today whereby. Jobs are flexible that not just to support the team the company and support the individual.
[00:26:14] Dr. Jill: So it might be different hours that you work. It might mean that you get certain projects compared to others that you might not be able to work on because of your ability. To be able to stick to things. Specifically might not be as easy. So using an occupational psychologist and health to support that can be really useful.
[00:26:32] Dr. Jill: And an occupational therapist particularly to help you work through what tasks are within your remit and which ones aren't can make a big difference. So that's what I would call about an holistic approach. But within that, of course, from a psychology point of view, I would be talking with the person about their emotional wellbeing.
[00:26:50] Dr. Jill: Talking about how we can build their self-esteem, their confidence, thinking about their identity. 'cause quite often people, when they've first been diagnosed with [00:27:00] narcolepsy and before , they're having a bit of an identity crisis and the whole focus is on their narcolepsy. Whereas actually it's only one part of who you are.
[00:27:08] Dr. Jill: With lots of other strengths and skills and gifts that have been almost dampened down because of this one area that's got blown up in many ways. So often we might work through a. Who the person is. And rebuilding up a fuller identity of the individual. As well as working through any anxiety and depression problems that the individual might be experiencing.
[00:27:33] Dr. Jill: And then again, that psychologist might then work not just with the respiratory doctors and their sleep doctors, but you act, we might even be that connection between the mental health team if your anxiety and depression has got to a level that you need some extra support on top of psychology. So yeah, it could incorporate a whole group of different professions that could be useful.
Challenges in Narcolepsy Treatment
[00:27:56] Dr. Jill: But in the uk I dunno about you kerly, but getting [00:28:00] that support doesn't always happen
[00:28:02] Kerly: i'm fascinated by what you said or that support , I haven't got that over the 24 years. It's almost sad because when I think of all those things you mentioned, it makes such a difference if you had that all in one package when you went.
[00:28:14] Dr. Jill: Yeah. Yeah. And how often do you go to a sleep clinic? kerly.
[00:28:17] Kerly: Once A year. When I wasn't on xyrem once a year and that would be it. And then I would go to the sleep apnea clinic once a year. But since I've been on xyrem, ' cause I have sleep apnea, they're like frightened of the combination at night. The xem making me too relaxed for the sleep apnea and apparently that can be very dangerous. Yeah. So they check on you every six weeks. So that's, that started in 2019. So before then, it was just once a year. Apart from the first two years. I was diagnosed at 18, I was seeing them probably every three months. And, all the students were writing notes and everything that came out of my mouth, they were writing it down. It was like just famous. And then after that, and it just went to once a year. But even when you were seeing the team [00:29:00] for more often, when you first got diagnosed, how many different professionals did you see?
[00:29:05] Kerly: One. 
[00:29:05] Dr. Jill: One. Yeah. Yeah. 
[00:29:06] Kerly: That's it. Just a sleep specialist. And then when I got moved to neurology hospital, then it was just the neurologist and that was it. Yeah. Which is fascinating to me. 'cause like I've had bariatric surgery and in order to do that, you need to see a dietician, you need to see the biotech surgeon, you need to see the psychologist.
[00:29:22] Kerly: You have to be psychological analyzed for that. Yes. 
[00:29:25] Dr. Jill: Yeah. And even for diabetes, it's the case, you would have several people within your team supporting you and you will be seen far more often than once a year.
[00:29:33] sakhara: Before they found that I had narcolepsy. They thought I had sleep apnea. So I was using a cpap And then they found out I. had Upper respiratory distress syndrome. And the way that they described it was that my brain, like it wasn't enough oxygen getting to my brain. So when I'm sleeping, my brain is like waking up 27 times. So I'm [00:30:00] never fully rested. But that also could be the narcolepsy too. At this point, I don't really know,
[00:30:05] Dr. Jill: and that is fascinating, isn't it? Both of you are talking about sleep apnea and narcolepsy, and both of you having. Parts of those two conditions. So yeah, we're a long way off, aren't we Understanding narcolepsy and the other things that might be impacting on it. But yeah, having a good assessment so that people don't miss it. When people have got things like sleep apnea on top of narcolepsy is really important ' cause they do end up going down a rabbit hole otherwise.
The Need for Better Narcolepsy Care
[00:30:29] Kerly: Yeah. And I just think it would be just very good, worldwide for them to put that program together, that like what you had in Manchester, that is what's gonna help people. 'cause they need everything. At the beginning you were talking about the depression. I remember , when I had bariatric surgery and I spoke to the counselor, she was surprised that I wasn't in counseling already. And I said to her, why? And she goes, because narcolepsy is not something that you can just deal with by yourself. You need counseling. She couldn't believe that this was the first time I was seeing a professional counselor in all my life. And then it just made me [00:31:00] think, yeah, why is it that they're not offering this? Yes, you've seen the doctor once a year, but in that middle bit we could have been seeing other professionals that could have helped with other different things.
[00:31:10] Dr. Jill: Yeah.
[00:31:10] Kerly: Because I worry about the situations where people are not able to take medication and so then they're not seeing any doctor whatsoever. But imagine if you weren't on medication and you didn't need to see the neurologist because, or the pharmacist, 'cause they weren't giving you medication, but you could see a counselor and you could see a psychiatrist. And the other things that would help with all this stuff we've been talking about today, about the mental health, about the holistic things that you could be doing on your own to help you. But if that's not there.
[00:31:37] Dr. Jill: I often say, talking is magic. You're creating an environment where people can openly talk share solutions, and concerns. That talking in itself, even if it's not a counselor, can be hugely helpful. But if on top of it you can have somebody that's there for you to hear how difficult it's been for you. Sometimes it's just resonating the important things back to you in a compassionate way,. You [00:32:00] have the solutions within yourself, but you need the time to reflect. Life is so busy that you need a counselor, a therapist, to help you work through what's going on in your head. We're just a long way off, aren't we? I think the whole of the world is far beyond doing an excellent job for people with narcolepsy. They're only at the very basics of offering medication after many years of misdiagnosis. 
[00:32:23] Kerly: Yeah. And that's got to change. So everyone who's listening to this who have the power to make the changes, please get in touch because this is something that we are needed. And the reason why I'm very passionate about sleep health and is because I don't believe now in 2025. That I should be hearing a story of someone. That story sounds similar to mine. That was in 2001. So what have we done in 25 years that they're still having the same experience? It's got to be different. Yeah. When you think of maybe another part of the body heart surgery or other organ surgeries where they were 20 years [00:33:00] ago, where they are now. It's a massive difference. Things that couldn't be cured then it's like a little surgery now. That should be how things are progressing, not just some of them. 
[00:33:10] Dr. Jill: . And even from a sleep perspective what treatments we have now for insomnia and what treatments we have now for sleep apnea have advanced hugely. But , what is there for narcolepsy is not, we've got some new medications, but not a hell of a lot. , I totally agree. I'd love to see more research. I'd love to see the commissioners of services have some of that pressure put upon them to know that they should be doing more. And even if you go to say, a sleep conference, so the British sleep Society has a conference once a year, I think it's usually down in Brighton. How often does the topic of narcolepsy get brought up? How often does it get spoken about? And campaigned about? Would be a useful place similar to yourself.
[00:33:53] Dr. Jill: Shakira in, in America, they'll probably be sleep conferences , that don't have [00:34:00] narcolepsy as part of their range of topics. 
[00:34:02] sakhara: Yeah. I've attended a few sleep conferences and it seems the total opposite, like narcolepsy is the main topic for most of the sleep conferences, but they also talk about, medications and then the last one I went to, Dr. Ann Morse. She talked about sleep hygiene, and narcolepsy, diet and everything. And out of all the speakers that day, hers was the most impactful.
[00:34:30] Kerly: Yeah. She runs a clinic like the one that, that Dr. Jill was talking about. When she came to London and I met her in person 'cause she's on our advisory board. Yeah. She runs a clinic exactly like that. And I was just like, was so jealous when I heard about it. I was like, oh wow, those children are very lucky. She said to me if a child didn't have a right arm and. You said to them , five years later , what's it like for your arm not to work , they'll say nothing to you because they've never known what it is to have two arms, so their body just adjusts and they get on with life. It's not a big [00:35:00] deal because only it's a problem when you have a memory of something else . That's when it becomes an issue.
[00:35:05] Dr. Jill: . It is an issue only having one arm because society's made for two armed people. . So there will always be that issue, a bit like people when they're in a wheelchair. But it is made far worse when people have had the ability and lose it. , It's like you're having your sight and suddenly not having it. It is so much harder because you can imagine what the world will be like if you still had that skill. 
[00:35:26] Kerly: Yeah. My friend , her son has a type of dwarfism and , she's made no adjustments for him, which I find so heartbreaking. 'cause I know if I was his mom, I've made every adjustments available. She says to me, Kerly when he gets older, the world is not made to adjust for him. If she adjusts the house for him, what's gonna happen when he goes out? . He has learned to do so many things. . It's amazing. He just gets on with it. And you wouldn't even realize , he has this disability. He treats it , as if the world was made for him . 
[00:35:56] Dr. Jill: yeah. And that's a great skill. That's a mom that's worked really hard [00:36:00] and didn't just go along with whatever society was saying. She made a decision that she wanted to bring her son up in that particular way. And that mindfulness of making those choices every day about how do you want to live with whatever your skills or whatever your deficits are, is an important element of thriving, not just surviving with a condition.
[00:36:20] sakhara: Yeah. I think that's so important because when you listen to other people's narcolepsy stories and you hear about, the different triumphs that they've accomplished, and how they didn't let the condition, stop them from achieving goals, I think that more people should be like that.
[00:36:38] Dr. Jill: That's a great thing about having your show and about having your groups, is that , you enable people to hear different perspectives. 
[00:36:45] Kerly: I think it's very important and that's why I can't wait to get more stories out from South America, Asia, and Africa, where you grow up and the society that you live in can affect how things are because of [00:37:00] cultural beliefs and systems.
[00:37:02] Dr. Jill: . One of my favorite stories about cultural influence is I went to do some work in Pakistan and I live in a place called Manchester in England. There were probably about three people getting on the plane in wheelchairs. When we got to the other end, though. There were 25 wheelchairs waiting to collect people. I was like, has a disability occurred on the flight? And then coming back? The same happened. About 20 people were in wheelchairs getting on the flight and at the other end there was two getting off. Have there been a miracle over the sea on the way back? And that's because in Pakistan, as you get older, they want to look after their elderly.
[00:37:40] Dr. Jill: They would want people to need them. It's a respectful thing. Look what can happen culture can create a disability. Absolutely. Wow.
[00:37:49] sakhara: . I think the theme goes for, people in, Chinese and Japanese culture when the parents get older, the kids move in or, the parents move in with the [00:38:00] children.
[00:38:00] Dr. Jill: Knowing that's the case, that can help, can't it? Hugely in, what you were saying before, kerly about that young boy not having his life too adjusted. Sometimes your family and society can make things better or make things worse, and you can choose to engage with it or not .
[00:38:15] Kerly: That's so true. 
[00:38:16] sakhara: Why is counseling important for people with narcolepsy and other hypersomnia disorders, even when their physical symptoms are being treated? 
Counseling and Cognitive Behavioral Therapy
[00:38:27] Dr. Jill: Yeah, so we definitely know that treating people psychologically for hypersomnia and narcolepsy can make a big difference because your mindset is really important.
[00:38:38] Dr. Jill: So often we would use a technique called cognitive behavior therapy. So what we would look at is, look at your cognitions and by cognitions. It's the things that you say to yourself, the things that, that influence your behavior about your condition, about the way you are, that might be influencing you. So we can work on those thoughts because. What we think can [00:39:00] influence our behavior a bit like I was saying before about, flying across the the airways to Pakistan, people were thinking, I have to be disabled when I get to the other end for my family to care for me. So those thoughts be it affected their behavior, our thoughts in other ways can affect our behavior. So if, when getting up in the morning you don't have a plan for the day and you're not feeling like you're looking forward to it, it can affect your behavior about whether you get outta bed or not. I'm trying to think of, there's so many different thoughts that can affect your behavior, but they're all cyclical. Your thoughts affect your behavior, which affect your emotions. So you can feel really tired, energized, anxious, depressed. And you can stop that cycle in any one of those three things. So cognitive behavior therapy will use sometimes the thinking to stop the cycle.
[00:39:49] Dr. Jill: We would look at what kind of things are you doing during the day that are pleasurable that can activate you into a more, enjoyable mode of life. A [00:40:00] more achieving focus so that you can build up your confidence. So we might look at both of those areas to be able to support you, but we might also look at the behavior of your sleeping patterns. When do you sleep and how do you sleep to make sure you're getting the right amount of sleep? So it's giving you the best quality. Are you using naps effectively? Aren't you using them? Because if you have a nap that's for longer than 90 minutes or is in between 20 and 90 minutes, it can actually make you feel more tired. So we might be, so looking at your behavior your napping behavior might be something that's important to do. So yeah, there, there's lots of ways that a counselor can help, very specifically with a technique called cognitive behavior therapy. But even the basics of just good listening skills, being there to reflect back to the individual, how they are and where they are in life. Because like I said before, life is so busy. People quite often today don't have time to talk and hear each other, we don't [00:41:00] live like we used to in the Savannah, when we hunted and gathered, we'd have hours wandering. Talking to each other and sitting around the campfire. So we don't have those luxuries anymore. So actually having somebody just to hear you for what you have to say, rather than interjecting with their issues can be, can make a world of a difference. 
[00:41:20] sakhara: Yeah. I just wanna say we have thoroughly enjoyed having you here.
[00:41:24] Kerly: I've learned so many things that we can start putting into practice literally tomorrow.
[00:41:28] sakhara: One last question. What message would you give to someone who is newly diagnosed with narcolepsy and might feel overwhelmed or lost? 
Finding Your Narcolepsy Tribe
[00:41:40] Dr. Jill: Yeah, my first thing will be to say was to don't hold it in. Share that with people. Find the narcolepsy focus groups of yourselves so that you've got somebody else to hear what they experience, to have a wider perspective so you don't feel like you're on your own. 'cause narcolepsy is such a rare condition that [00:42:00] people can feel like it's only them. So sharing your concerns with other people that have a similar condition or the same condition can make a massive difference. And not holding it in because the more we talk about an issue, the more we're likely to come to solutions or reflections that are helpful for the individual. Yeah. My first piece of advice would be to not think that you're on your own and get out there and find the tribe.
Podcast Farewell
[00:42:26] Kerly: Thank you. Thank you, Dr. Jill for coming on Narcolepsy Navigators. 
[00:42:31] Dr. Jill: Thank you very much for inviting me. I've loved chatting with yourselves. 
[00:42:35] Kerly: We like to end the podcast by saying happy, napping everyone. Aw, yes. Happy napping. 
[00:42:40] sakhara: Happy napping. 
[00:42:41] Kerly: Happy napping everyone. 
[00:42:43] Dr. Jill: Happy napping. Thank you. 
[00:42:45] Kerly: Bye-bye. 
[00:42:45] sakhara: Bye bye.
[00:42:47] Kerly: Narcolepsy Navigators is produced by a team of volunteers working for the Naps for Life, CIC, which is a [00:43:00] nonprofit group dedicated to improving the lives of people with sleep disorders through community action. You can help grow our podcast and join our sleep disorder support group by visiting the website www.napsforlife.com.
[00:43:16] Kerly: If you or someone you know. Has a sleep disorder and would like to share your story on narcolepsy navigators. Please email us at narcolepsy navigators@gmail.com. You can also support us by donating at the websites. Happy napping everyone.