The Dr Louise Newson Podcast - 282 - Motor neurone disease and perimenopause: Nicola's story

Episode Date: November 12, 2024

This week, Dr Louise is joined by Nicola McFarlane, who was diagnosed with motor neurone disease (MND) in 2023. Nicola shares the story of her MND diagnosis, as well as the barriers she faced in accessing treatment for perimenopause symptoms – including low mood, anxiety and recurrent UTIs – to improve her quality of life. Nicola talks about how health professionals often put her perimenopause symptoms (which pre-dated her MND diagnosis) down to her MND, and why she is sharing her own experiences to help other women living with MND and facing hormonal changes. For more information on Newson Health, click here.

Hello, I'm Dr Louise Newsom. I'm a GP and menopause specialist and I'm also the founder of the Newsom Health Menopause and Wellbeing Centre here in Stratford-Pon-Avon. I'm also the founder of the free balance app. Each week on my podcast, join me and my special guests where we discuss all things perimenopause and menopause. We talk about the latest research,

bust myths on menopause symptoms and treatments, and often share moving and always inspirational personal stories. This podcast is brought to you by the Newsome Health Group, which has clinics across the UK dedicated to providing individualised perimenopause and menopause care for all women. Today on my podcast I'm going to introduce to you a very inspirational person called Nicola, who I met a few months ago, and she has metanourine disease, and she's also got hormonal deficient.

please, so she takes HRT for that. And she's got a really interesting story. And the more I think about hormones being biologically active throughout a body, the more I'm really concerned about our brains and our nervous system, because that's been ignored for so long. So I'm hoping in the next half hour we can really tease out and unpick some of the reasons why our hormones are so important for all of our nervous system and brains, but especially when you think, about people that have neurodegenerative disorders as well. So welcome, Nicola, to the podcast. Thanks ever so much for joining me.

I'm in a different location today, so some of you might have seen I've got with some of my daughter's artwork behind me. So before we logged on, we were talking about art because you've gone from being a sports person to now thinking about painting, haven't you? That's true. I think MND is all about adaptation and focusing what you can do. I can't ride horses anymore or go for a run. So, yeah, I've been getting into my artwork, trying anyway.

A bit rubbish at the moment, but I'm sticking with it. But everybody has to start somewhere. Exactly. So before we start too much, M&D, three letters, motor neurone disease, people often don't know what it is. And even actually doctors can be quite confused because they're different types. It's not the same prognosis.

Everyone's different as well. So do you mind just explaining what motorneurine diseases and how it can affect people? Yeah, the way I explain it, my friends, is your muscles and brains have to communicate and because my motor neurons are dying, my muscles and brains can't talk to each other anymore. So your muscles eventually, if they're not being used, they atrophy, they give up. So with motor neuron disease, it affects everyone totally differently.

And a different rates of progression. It's my hands and arms and slightly my speech that's affected at the moment. But my body will become weaker and weaker over time. And, you know, your diaphragm is also a muscle so your breathing can be affected. It's a terminal prognosis. It always progresses. And the average life expectancy when you're diagnosed is between two and five years. So obviously a horrendous diagnosis for anyone to be given

and there are no effective treatments at this time. So when were you diagnosed? May last year, so May 20, 23, so just over a year ago. And how was the diagnosis made? Did you have symptoms for a while or what happened? Yeah, I was very, I mean, I use the term lucky loosely. I was diagnosed very quickly and that's not always the case. case with the majority of people. I had a horse. I was often outdoors and cold. And when my hands

got cold, they seized up and didn't work very well. I also would notice around about November the year before that I had a tiny, tiny lisp. But to be honest, I didn't put those symptoms together. And I also had muscle twitches, which is something called vesiculations. It's the muscle kind of calling out the brain going, where are you? So I was quite fortunate. I was referred quite quickly to a neurologist. And if I'm honest, I'd googled it and I'd seen motor neuron disease. But obviously I desperately hoped that I wouldn't have that disease. 90% of cases are what's called sporadic. So that means they don't know what causes it and there's no family history. Now, I, when I was in the process of being diagnosed, I had three months previously, I think, had my first appointment with your clinic. And I had

been aware for the previous two years that I wasn't quite right. I mean, I'd say from the age of 40, I hadn't been quite right. So I knew that I was having problems with perimenopause. But then I was diagnosed with MND and I kind of thought, perimenopause, that's the least. And I was diagnosed. And I was least of my worries, but after the dust settled and I came to terms with my diagnosis, I realized I could still be alive for another five, ten years and I would like quality of life. Thank you very much. So I restarted my appointments with the clinic and I'm happy to say at the moment I believe my hormones are balanced and I am better for it. That's really interesting, isn't it? So did you have time when you had been diagnosed with MND, but you weren't taking hormones? Yeah, so I think I'd been on,

I was taking the gel, just like one pump for about three months when I was diagnosed. And yeah, I mean, I carried on, but obviously I was, you know, not mentally in a great state. And I kind of, like I say, I just thought menopause is least of my worries. But I remember having a conversation with my lovely pharmacist one day. And she said, Nicola, your perimenopause is impacting your life more now than the MND. And that's not to make light of MND, but I was very early stages when I was diagnosed. But I would say I'm 48, but from the age of 40, I've had just crippling anxiety. low mood, recurrent UTIs, and nobody, no GP ever said to me, this could be perimenopause.

They, I would say between the ages of 40 and 44, I was on five different antidepressants that didn't work. And the stress of starting a new antidepressant, withdrawing, changing was horrendous. I'd stopped drinking, I'd stopped caffeine, and I was running 10K, 5K, three times a week. I was meditating, I did a yoga teacher training course. I was doing all the right things, and I knew that I wasn't right. And then I would say since having MND, even though it's life-changing and it's so difficult, my anxiety levels are better now than they were in my early 40s, because of HRT.

Gosh, and that's really, it's so interesting because in medicine, you can have so many different diagnoses and you can have more than one thing going on, of course we can. But somehow when it comes to perimenopause or menopause, it's either you have treatment or you don't and there's nothing in between. And then the whole narrative gets lost quite a lot. And we see a lot of women in the clinic who have other disorders and diseases, but they're almost like trivialised the perimenopause and menopause

or think, well, it's just something that's going to happen and we don't need to worry about that because we've got this other condition going on. But actually, like I said at the beginning, the impact of our hormones, eustodal, progester, and testosterone in our brain and our central nervous system, but also our peripheral nervous system, is really important. And we know the commonest symptoms, certainly in the perimenopause,

our brain fog memory problems, but also anxiety, low mood. And it can be quite catastrophic anxiety. People can really ruminate and worry and worry about small things, like worry about whether I'm going to leave the house in time to catch my train to go to work. But then suddenly if you have a diagnosis like you had of MND, it could be so awful because you've got this anxiety anyway.

And as you know, no one knows what your prognosis life-examity is really going to be. Yeah. There are so many other things that can affect us anyway, you know, day-to-day, we could get run over crossing the road. Yeah. So it's living for the moment and being the best version of yourself every day. But also thinking about these hormones, they're neurotransmitters.

So they affect the level of other neurotransmitters in our brain. But also, when you think about the peripheral nervous system, So every time we move a muscle, as you say, our brain has to tell us that there's these signals that go down to every single muscle and coordinate the movement. Now we've got these synapses, these connections between each muscle fibre and the signals go between. But those signals are helped with having hormones. But the way the nerve fibres conduct, it's a bit like electricity, isn't it? A way that they conduct those messages, again, is helped by hormones. the myelin sheath, which conducts everything really fast, so if you put your hand on a hot flame,

hopefully your brain will tell you very quickly it's hot, the myelin sheath gets billed by progesterine, estrogen and testosterone as well, which so many people don't realize. And so it's crucially important that your central nervous system and your peripheral nervous system is as good as it can be with everything else going on with the motor neurone disease. And so even if you had no other symptoms related to your perimenopause, I would still say that there are more benefits of taking hormones, all three hormones, for your peripheral nervous system and your central nervous system as well. Yeah, I couldn't agree more.

And I think all the research that I did myself onto perimenopause, and it actually brought me and a lot of my school friends back, closer together because we were all having these similar struggles and I remember when I was diagnosed with MND I spoke to a GP and they said yes as you have a mood disorder you will definitely struggle with this diagnosis I didn't have a mood disorder I was going through hormonal changes and I needed help and support and I find it frustrating that I've had to go private for that help that there doesn't seem to be joined up approaches and an interest in women's health and as you say I want quality of life I have a lot to deal with with my health and if I can

improve other areas of my life have more mood stability have more motivation have more periods of calm, then of course I'm going to take that. But I do feel like the medical community in some regards just rope me off. Oh, she's got MND. So why bother? Yeah, which is absolutely wrong. You know, one of the first things really that I learned in medicine was to not be judgmental and to do the best for every single patient, of course. But we shouldn't be just labelling people and putting them in a box because everybody who's perimenopause is different.

Everybody who's got motor neurone disease is different. But also you're such a positive person. You don't want to be defined by your condition either. You know, you want to be defined as the person that you are. Yeah. It just so happened to have motor neurone disease. But the other thing is we know that our hormones used to our progesterone, testosterone,

help build our muscles and our bones as well. And so if you've got a condition that is impairing the way your muscles work, which you've already said motor neurone disease does have a negative effect, anything that's going to help you build muscle strength, keep your bones strong. The last thing you want to do is tumble and fall and have an osteoprotic hip fracture. That would be catastrophic for anyone with motor neurone disease or not have the strength when your muscles are becoming less strong anyway, but you don't want anything else that's going to make them weaker. And we know that perimenopause and menopause or women are at risk of osteosarcophenia, which basically means the bones and the muscles get weaker. And as we get older, they do as well. So, you know, we know keeping active is really important, and you know that too.

But we know that our hormones have a very beneficial effect. And so that's very important when we're thinking about your immediate health as well as your future health, isn't it? Yeah, absolutely. And even the UTIs, I mean, I have suffered so badly in my 40s from UTIs. And I actually had a male GP tell me that even if I was really busy, I had to be very careful to wipe myself properly. And I was having to get antibiotics all the time. Rightly or wrongly, I was lying to pharmacists and saying I hadn't had a UTI, you know, previously, because I so desperately needed the antibiotics.

Nobody ever mentioned perimenopause. The first appointment I had with the Newsom Clinic, the doctor told me that UTIs are very common symptom of perimenopause and that when my hormones were balanced, they would stop. And they did. And again, when you are disabled and you have the difficulties with MND, I think any woman that's had a UTI in cystitis, knows it's agony.

Absolutely. And Cisteritis is very, very common. I was recently lecturing to predominantly female audience and asked, is there anyone in the audience that hasn't had a newly tract infection rather than saying who has, but they knew there'd be a real show of hands. And literally there were three people in the audience that hadn't. And most of us that have had them, it's not just a bitter discomfort and going slightly more often.

It can be awful. I mean, I have sat on the toilet before crying. Yeah. thinking, I just can't. It's horrendous. It's absolutely awful. But we also know that, you know, 30% of sepsis is due to Eurosepsis. So due to you and retracted infections. So especially with older people, it's far more common. And it's so easy to treat. And also, you know, the way the bladder works is determined by our nerves as well. So if our nerves aren't working as well, our bladder might not empty as well. Our pelvic floor muscles might not work so well. we might have more urinary incontinence as well. The last thing you want when you've, well, any woman, but certainly if you've got motor neuroses as well and if your mobility's not as good,

you don't want to be dribbling urine. You don't want to be coughing, sneezing. I mean, there's so much as well with any urinary symptoms that are so easy to be treated as well with hormones. Yeah, absolutely. And, you know, as I say to my friends, the two things that I'm passionate about is sort of advocacy for MND,

but also anything to do with men's. menopause. And, you know, I'll admit when I was in my sort of late 20s, early 30s, I was very ambitious, very dynamic in my career. And I would look at these older women and think, you know, what's going on and pull yourself together. And I didn't even know until I was sort of mid-40s that there was such a thing as perimenopause. And I certainly didn't know about the impact that it could have on me. And I just strongly feel women should be talking more about it or 51% of the population.

It should be an open discussion at work and there should be actually support and understanding because I would say it's turned, I mean, obviously the M&Ds turn my life upside down, but I look back at the time and the opportunities I lost because I was struggling so much. with my mood, with anxiety, with motivation. And you just feel like you're going mad a lot of the time.

It's very difficult. And I also very strongly feel that every doctor from every specialty should know about perimenopause, menopause, and be confident in prescribing hormones as well. I did a really amazing neurology job in 1995 a long time ago. And then when I was part of becoming a member of the Royal College of Physician, I did a neurology course and we spent hours

literally hours trying to make these amazing diagnoses so like as you say that fasciculation muscle twitch is spending a long time looking at people's arms and their legs getting almost excited when you see it because you know the diagnosis what I was never thinking about

was hormones or even what that person's feeling because so much in medicine is about making the diagnosis and getting the treatment without thinking well what does that diagnosis to that patient. How are they going to change? Like for you going from horse riding to painting and drawing. But also, there were so many women in my neurology job, I saw a lot of women who came in for steroid treatment because they had multiple sclerosis. Never once did I ask them about their periods. Never once did I think, do they have any other symptoms? And any anxiety was

because they've got a diagnosis of MS. That was what I was told. So often they were given antidepressants because, of course, they're going to anxious because. they've got MS. Same with motor neurone disease. You know it's a life limiting condition, so all these poor people are going to be anxious. It's okay, but they don't all need to be given antidepressants. We should be thinking, are there any other reasons why they could be anxious? What else is going on? What about their hormones? And I feel the same with men, actually. How many men with motor neurone disease are also low in testosterone? Yeah. But we don't know. And I've never once met yet a neurologist who prescribes

hormone replacement parapheal testosterone and I don't quite understand why because they're a lot safer than steroids or the biologic agent. Yeah and actually I was talking to neurologists about the journey I'd had and trying to get on HRT and I said it's my understanding that hormones

are really important for brain health and this neurologist said they're one of the most important things. And I thought well if that's the case why is there no joined-up approach for my health. And, you know, like you say, people say to me, well, of course you're anxious. Of course you have low mood. You have M&D. But I had it long before,

and it was worse. And the analogy I use is it's like grief. Grief is very painful. It's very overwhelming. It can be very confusing and it's very difficult. But you are not in it all the time. It comes in waves. And I would say life with this diagnosis is the same. But way before I had M&D, I was stuck in just this anxious state from the moment I woke up until I went for a run at lunchtime. It was the only thing that eased it. And it just leads to burnout. And the more I learned, the more I learned that estrogen can control your cortisol. levels, that the way I felt in my life the week before my period, I would be so depressed. And then I'd get my period and I would feel better. And as I got older, it just got worse to the point

where I just felt like that all the time. And it's very scary. I spoke to somebody two days ago in my clinic who has had very, very dark thoughts. And it was horrible to do the consultation, mainly because it was online and I couldn't even give her a box of tissues when she was crying. But she'd become so scared of her thoughts and she absolutely didn't want to continue as she was, but she didn't want to harm herself. But it was horrendous and she couldn't see any other reason why she was like this. But her periods were still regular so she was told it couldn't be her hormones. But of course her hormones can still change and have this impact on her brain.

And it's horrible because when you're told different things, you don't know where else to go. And then you can almost convince yourself that there's something else going on or that it's your personality or that you can't cope with life, which isn't right. You're clearly one of the strongest people I think I've met psychologically. Well, you are, but you wouldn't have thought that I didn't meet you when you were full of anxiety, but you wouldn't have been that same person, would you at all? No, I felt like a complete failure. And I felt like I was going mad and I felt like I should be enjoying my life. People say life begins at 40. And I just felt very isolated and yeah, I didn't know where to turn, to be honest.

And it was my friend Emily who we just got talking one day and she told me about what she'd been going through and she told me about your clinic. and how it changed her life. And that's when my journey with it started. And she sent me lots of your podcasts and other podcasts. And I just knew that the way I was feeling was not all down to the MND. And especially now on testosterone, I have way less anxiety. If I find myself starting to spiral, I can address it. I can go actually live in the moment, don't think too far ahead, I can rationalise it.

I can cope. I couldn't cope before. It was mass overwhelm. And I hear that so much and I've experienced it myself this overwhelmingness. Not that that's probably really a word. That it's very hard to rationalise. And most of us are busy. I'm very busy.

But here and now I'm talking to you. So it doesn't matter what I'm cooking to supper or so I'm going to be late for the next meeting or whatever. It doesn't matter because I'm here and somehow hormones give you this ability to rationalise and also compartmentalize so that you can deal with one thing at a time without catastrophizing about the future. And that is something that I hear a lot in women that they just have this constant worry and this constant sort of chatter really in their brain, this noise. Yeah. That then makes it very difficult to do things that perhaps would have been so easy in the past. And especially when you think about work or, you know, running a home or looking after various relatives, of course things are going to be so much more difficult.

And then it will affect your mental health more because you think you're not coping as well as you did before. Yeah, exactly. And I think, like you said before, it's by perception and people just go, you've got M&D, your life must be terrible. You know, the thing that people say to me the most is I wouldn't get out of bed if I was you. And I said, well, I could be here another 10 years. And in that time, there might be some treatment. It would be a very long time to lie in bed. But, you know, I want quality of life. I want to have the tools I need to help me cope as well as I can. Because when you're dead, you're dead forever. If this is the last five or 10 years of my life, I would like to try and enjoy it. But the way that I was before, before, the HRT, I just couldn't. I mean, I remember my boyfriend saying to me a few years ago, do you want to go out for a coffee? And I thought I was going to have a panic attack at the thought. Now, I traveled to Thailand on my own in my 20s. I lived in the Greek islands. You know,

I went with a lonely planet and a couple of hundred pounds. I turned into this person that was terrified at the thought of going for a coffee. Yeah. You know, and all my female friends, the women I talked at work, the friends I've made through M&D, they've had similar problems and they think, where have I gone? Where's my identity? Who am I now? Yeah, and that is so common, this whole, who have I become?

And I remember years ago when I started my clinic, somebody said to me, I don't like who I've become. Yeah. And I thought, oh, I wonder what she's meaning, but I totally get it. that whole joyless, death for life has gone. Absolutely. You know you've turned into someone that you never wanted to be, but you can't go back, you can't control it.

And again, it just shows this power of hormones in our brain. And as you said at the beginning, motor neurone disease affects the peripheral nervous system. It affects the nerves that control the muscles, but it doesn't affect the central nervous system. So it shouldn't affect your personality or memory, anything else at all. So again, it's another reason I think to be thinking what else is going on.

If someone with metanourine disease has some mental health issues and psychological issues, then it's unlikely to be due to the MND, isn't it? Well, yeah, and I think my anxiety was so bad that when I was diagnosed, I said, could the MND have caused this, the anxiety? And they said no. And like I say, I kind of shelved my sort of, quest to get HRT because I couldn't get it through my GP. They wouldn't prescribe it. So, you know, it did take me a long time, but I absolutely wouldn't be without it now. And I'm so vocal,

especially M&D, it does absolutely affect young people and young women. But there's loads of women with it that are in middle age. Yeah. So, yeah, I always try and speak about it any chance I get to make sure that they're getting what they need and deserve. Nobody's sure. should be written off because they have a horrible prognosis. Totally agree. And actually I have spoken to people with most of urine disease who are younger, still having periods, but some of their symptoms get worse before their periods. So their muscle strength gets worse.

Or they might get urinary tract infections and they've been told, oh, that's just the way MND is. All the same with MS. Oh, it's just the way it can change. But if you take that history really carefully and you find that it's just before periods, that's when hormone levels are at their lowest. And so often people with PMS or PMD, we can give a low dose of hormones and top up just before the periods. And then any other symptoms related to another condition like MND or multiple sclerosis

can actually really improve. And also we know that no one's too young to be menopausal, no one's too young to have low testosterone. So I think anybody with a progressive neurological disorder, we should really be on hyper-alert for hormones. because we've known for decades that our hormones and neurosterose, they're produced in our brain, they reduce inflammation, they improve the way our nerve cells all work.

And they also, if we have them, they'll delay any degenerative diseases as well. So the sooner people are on them, the faster, and they're so safe. You know, I spoke to a lady the other day, and I said, look, if it doesn't help, you don't have to continue with the hormones. Yeah. But we can try it in. see because it's so hard to get a proper blood test because what is in your bloodstream is not the same as what's in your brain and the your need for testosterone is going to be different for my

need and if your brain is working in a different way because of your motor neurone disease who knows no one's done research maybe you need a higher dose or a different dose we just don't know but because we don't know it doesn't mean we can't try something and see if it helps and that's what sometimes happens in medicine people say we don't have the evidence therefore we can't do it. We don't have evidence in lots of things we do, but we can still try and see if it does make a difference. Well, exactly, and it's safe. And I just think there's so much misinformation out there. And a lot of women I know they're too scared to try it. And you think it is such a shame that women for years have been told that this can cause cancer and other

mistruths, really. And what I struggle with is if neurologists, know the importance of hormones on the brain and the neurological system, then why isn't there this joined-up approach? Why aren't these conversations happening with women and, like you say, men that might have lowered testosterone? I wish I could answer. I really do. And one day, hopefully things will change.

But I'm so grateful for your time today and your honesty, because I know it's going to help so many people just listening to this podcast. I really do. I hope so. And hopefully people who have listening, who know people with M&D or have MND, hopefully it will allow them to think differently maybe as well about hormones. So before we finish, I'm going to ask for three take-home tips. But three tips are people who have any neurological condition.

What three things do you think you should be doing to help thinking about hormones and your future health? So in terms of like taking hormones or just making a diet, notice yourself if you're not being listened to. I would say don't give up. Trust yourself. You know your body and your brain better than anyone. Don't allow yourself to be gaslit. Don't allow any doctor to put a label on you like they did me with my mood disorder. So believe in yourself, trust yourself. And maybe most importantly have hope. Just because you're going through a hard time now and your mental health maybe isn't good

and you feel hopeless, you will come through this. But don't give up. And if it means changing doctor, just keep on going. Yeah, I think it's so important. And talking to others, knowing that there are solutions

and ways that you can feel better and also just improve how you're feeling because like you say, every day is important. We can't be investing from what we're doing in the future without thinking about the present time. wasn't guaranteed for anyone and it is so important just to live each day, one day at time, the future, who knows what it will bring. But again, it's very difficult when you're

suffering anxiety because you have every worry in the world. But just know that help is out there and there's, I've met so many amazing women through work in my community just by starting those conversations and mentioning menopause, which leaves me vulnerable and it is a real with the conversations and the connections I've had and we help each other. Fantastic. So thank you so much for your time. Great. Thank you. No, thank you. I really appreciate it. Thanks, Louise. You can find out more about Newsome Health Group by visiting www.newsonhealth.com.

And you can download the free balance app on the App Store or Google Play.