Living with motor neurone disease

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1:11Hello, I'm Rahul Tandon. Welcome to the documentary from the BBC World Service. In BBC OS Conversations, we bring people together to share their experiences. This time, what's it like to live with motor neuron disease? Lewis Moody won 71 England caps during his England rugby career. Part of the 2003 Rugby World Cup winning side, he was nicknamed Mad Dog in honour of his fearless and relentless approach to the game. A few weeks ago, the 47-year-old began to experience muscle weakness during training in the gym. Scans revealed he had motor neurone disease. We process lots of emotions over the last couple of weeks.

1:57And I suppose when you talk about it, it's never me that I feel sad for. It's the sort of sadness around having to tell my mum, you know, as an only child, and the implications that has for her, having to tell the boys. I mean, you know, two brilliant boys. And that was pretty heartbreaking, wasn't it? But, yeah, the future's uncertain at the minute, I suppose, isn't it? So that's why we're just focused on now. Lewis Moody speaking to the BBC earlier this month and his diagnosis has inspired our choice of conversations this week. MND is an incurable condition. Over time, muscles weaken, affecting movement, speech, eating and breathing.

2:43It mostly affects people over 50, but our first guests were all diagnosed in their 30s. During our daily live OS program, we brought together Narayana in India with James and Jillian in the UK. Jillian was only given her diagnosis a few months ago. Just on the day, I think I made a lot of very dark jokes, but it is upsetting. I think everyone at some point has to face aging and mortality. I really didn't expect to be doing it in my early 30s. It's hard to wrap your head around. It's not a common experience. And there's really not a good playbook for it. No. You are a researcher at Oxford University.

3:28How has this changed your life? What can you do? What can't you do, if you don't mind me asking? Well, so far, it has changed my life mostly on a day-to-day level and not really occupationally. I'm a researcher in maths, so I'm very much on the Stephen Hawking, not the Lou Gehrig end of the spectrum in terms of how much this has disrupted. my ability to work. However, day-to-day life, I can still walk, but I'm quite slow and I fall. And so it makes traveling quite difficult and my hands are starting to get weaker. So writing, opening doorknobs, cutting with utensils, that sort of thing. But yeah, mostly the day-to-day living, I still get to keep my professional identity and keep writing papers hopefully.

4:19Well hopefully you can do that for quite some time. James you're a barber I believe aren't you? Yeah yeah so my occupation yeah I was a barber and it's ironic hearing Gillian talk being a researcher at Oxford University that that's where I was actually diagnosed back in in June 2021 so it's brought back some memories actually but yeah I was a a fully qualified barber. I had a complete career change over lockdown and I loved every minute and I wish every day that I could go back to being, you know, what I enjoyed doing as a job. It didn't feel like work and just got so much fulfillment out of it.

4:57But unfortunately, due to my condition, you know, over the years, I feel very fortunate in comparison to many, many others that it is relatively slow in comparison it only affects my arms at the moment so I've got little to no use on my my arms so you can imagine trying to cut someone's hair with weakening limbs and arms and hands becomes very difficult and dangerous so I had to make the hard decision to leave that profession and be I suppose a stay-at-home dad stroke sharing my life on on social media to try and raise some awareness which is uh sort of almost free therapy for me i suppose it's not easy though is it it's not easy no and it's become more and more apparent as my arms have become less and less usable and specifically this year i'm now having to utilize not only my wife but my three children help me get things on like jumpers and now the the colder months are sort of coming through they're helping me put socks on and I'm struggling to eat and I'm struggling to go to the bathroom myself and it's all those things that you have to learn to adapt to I feel fortunate that it is relatively slow so I can adapt slowly in comparison to others that might have a very fast progressing version it is tough but I try and look on the positive things in life and focus on the things that I can do, not what I can't.

6:27Well, we could all learn a lesson from that, I think, James. Narayana, you had the diagnosis 10 years ago, so you've been dealing with this, living with this, longer than Gillian and James. How is your life today? What changes have you seen over the last decade? I would like to say that I am fortunate enough that I have a slow progression. and you know sometimes it is frustrating but on the other hand I am still able to share some moments with my children and my wife who is the main caretaker of myself so she takes care of all the work like as my hands are not usable I cannot walk so she has to beat me dress me, everything she has to do.

7:23But I am fortunate enough that my work has been continuing. My office is very concerned enough to let me work. I am a mechanical engineer, so I used to work in the field, go to different customer places, repair their machines. but once diagnosed I was you know slow progression I could not travel much I could not drive my car so I had to restrict my work but my office had given me opportunity to work at home so that was You know, financially, I was able to cope up. But yes, I miss playing with my children, taking them out, going for movies. All these have been restricted. And my speech affected now.

8:29So it's difficult, you know. We cannot say it's an easy life. But yes, we have to go on. The trouble is there's high variance in the speed of progression and also the onset of progression in different parts of the body. So everybody's experience and loss of function is different. And just trying to live my life the best I can. Yeah, just being very adaptable, trying not to think about the later stages too much. and maybe I'm trying to get my affairs in order. And I have to think to myself sometimes, what have I done in a past life that's made me get this awful disease? And, you know, I was a, previous to being diagnosed, I was a sort of an avid runner.

9:24I used to run, ironically, for the Motor Neuron Disease Association, who helped many people across the country in support and financial support as well. and I sort of think to myself, is it because I ran too much? Did I put too much stress on the body? There isn't really a link to it. Of course you will ask questions and there is an increasing amount of research into this. Hopefully you will get some. Narayana, I want to get some final thoughts from you. You talked there about missing being able to play with your children like you did before. How do you explain that to them? That's a very difficult thing, you know.

10:02See, explaining them to children that why your father is not playing with you is the most difficult thing. You know, when other parents are there going out and, you know, they feel, but they don't express on my face most of the time. Yeah, that is the most, I should say, difficult part in life. Narayana in conversation with James and Gillian. And as James mentioned, there is evidence that elite athletes are disproportionately affected by MND. The disease killed Lewis Moody's fellow rugby players Doddy Weir and Rob Burrow. and a study of Italian footballers suggested the rate of the disease is higher than in the general population.

11:00I'm Rahul Tandon and you're listening to the documentary from the BBC World Service.

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12:46According to the MND Association, motor neuron disease kills a third of people within a year, and more than a half within two years of diagnosis, as swallowing and breathing become more difficult. Some, though, can live longer. The physicist Professor Stephen Hawking lived with MND for more than 50 years. Our next guests have also had a relatively long-term experience of the disease. Ivi's dad died last year in Belgium, 46 years after his diagnosis from a type of the disease known as ALS. And medical doctor 65-year-old Mehboob in Canada has had ALS for five years. He was joined for this conversation by his wife Sophie, and this is how the recording started.

14:06Ha ha ha, that's good. I'm going to start the conversation with Mehboob first. Can you just tell us when were you diagnosed? So I was diagnosed in September of 2020. I had started to fall without a reason and I had a very difficult time getting up and I couldn't understand that in December of 2019 I had a hip surgery for osteoarthritis. I just didn't recover from that surgery, and then the fall started to happen. So I went to see a physiatrist. At the end of the appointment, he said, I'm sorry, I don't know how to say this, but you have motor neurone disorder. And I said, are you saying something like ALS?

14:54And he said, yes, that is probably the most likely. There are other types. So then I had to go back to my office to see my patients, and I just went back in my room. I sat down, my wife came because she sensed that I was a little distressed and she said, what's wrong? And I said, oh no, I just need a cup of tea. And I sat there for a while contemplating the life ahead, being in the profession. I knew I had two patients of my own with ALS in the past. I knew that, you know, this is a short and difficult journey. When he told me that he had ALS and it was very shocking. We have two young children.

15:38My daughter was 23 at that time and my son was only 18. He explained to me what ALS is and that he would be losing function of his legs and his arms and eventually the lifespan average is two to five years. So it was really shocking. I could not believe that such an active man with you know as a family physician and a golfer he played a lot of golf and he will not be able to do all these things so it was a total shock I think we were just walking like zombies just could not believe that you know such a devastating uncurable disease happened to Meboum. I want to bring Evie into the conversation and your father was diagnosed with ALS very early on, wasn't he?

16:24So almost from the time that you were born, he had the disease, didn't he? My father was 18 and my mom was 19 when my father was diagnosed with ALS and they were pregnant from my brother. They continued their life and my mom took care for my dad. And nine years later, so my brother was nine when I was born, I came to the world and my father was, his arms were paralyzed already, so he never actually could hold me. He needed to be sitting down to put me in his arms and those things. So I never knew anything else in my life than ALS. But you would have seen from a very young age that your dad with ALS was different to other fathers, the fact that he couldn't pick you up.

17:12How long did it take you to actually understand that? Well, actually, for me, my dad was always normal. I never saw my dad as a normal person because I never knew anything else. And my father passed away last December. The Belgian newspapers interviewed me about his passing away because he established the Belgian Association. I was also telling to them, you don't need to be able to throw your kid in the air to be a very good father. I had a lot of love of my father and my mother and I had a very supportive brother. So we were just a normal family. So actually my life was pretty normal for me. So Mebub was 60.

17:57I'm younger than Mebub by 10 years. We had to make arrangements for him to retire from his medical practice. I retired early and become his caregiver. He has lost his legs and then he lost his arms. and now he's in a power wheelchair. He's paralyzed from his neck down. We feed him. My children are very supportive. They help me look after him, but he needs all the activities of daily living. And initially it was difficult, but it's become a new norm for us where we look after him and groom him and feed him. I have been blessed with a very strong mental health and I've taken it in stride. It has been obviously a major change for me, but I focus as much as possible in the present.

18:50And I think one thing that really helped me about three years ago, I actually sort of said in my heart that I'll surrender to the universal energy. I'll surrender to the Lord if there is a Lord out there and let that energy make the decision. So I'm at peace with very clear knowledge that at any time this disease will take my life. And I'll just live day by day appreciating each and every moment in my life. So that's how I've been able to cope with it. I did not miss my practice anymore. I didn't miss playing golf. I don't miss driving a car. One thing that sort of took me a little while, maybe about two or three days to come to terms with it, is when I lost the function of mobilizing myself on the wheelchair, which meant to me that now I'm totally dependent on somebody else.

19:47It's a difficult thing when you are a family member giving caregiving. You know, there is a very personal happiness to that and sometimes a little bit of conflict also. Yes, it is not easy. He keeps thinking it is a burden. We don't think it's a burden. It's a pleasure. But as he said, there is conflict because if it's your spouse or a family member, you can lash out. We have to deal with those situations where he's a little impatient. We have hired help sometimes where we have respite hours, where we have a caregiver. And I can see the difference. But that's because it's hired help. And like Evie said, it's become a new norm.

20:25And as a husband, he's still very loving. And as a family, my children, we still enjoy birthdays. We still go out to restaurants and we still try and enjoy regular activities. I really like what you said, Sophie. I think this is something that made my life normal. We always did those things, like you mentioned, go to a restaurant, have some family vacations, have some great parties, birthday parties, everything. I had the luck that my father lived a long time with ALS. So six years ago, my daughter came to the world and he could join that moment. And that was very beautiful because she became a caregiver to him too.

21:11She feed him. She gave him also something to drink when she was on his seat. So it was very nice to see that actually she took over when I was young, that this is something normal for you as a person living with a person with a disease, not only ALS, but in every disease. For us, it's indeed not a burden. It's done with lots of love and just because we want to enjoy the time together. And it's very nice to see how a whole family suddenly makes sure that a person they love is taken care of. That's right. That's very well said, Evie. I always mention to my parents, they took always care of me as a child.

21:57I think it's very normal as a child that if something happens with your parents, you take care of them. And for me, it was from the beginning of my life that I never knew anything else, but them taking care since I was a young child. But if something will happen to my mom in upcoming next years, I will also take care of her because this is just normal. they did it always for you. For me, it's not a burden. Sometimes I had indeed a conflict with my father. Debbie mentioned, like, oh, no, you don't need to do that. I ask enough and it's okay. Take care of your own family. I was like, no, it's not a problem.

22:36I will do that. I will do it right away. So, yeah, but yeah, that's normal, I think. It is normal. We all have conflicts with our parents and children. Mehboob, do you think sometimes for the person suffering, it's harder to watch their families have to change their lives than it is for the people who are doing it. I certainly think so. You know, I'm sure that Sophie, when she was 50 and I was 60 at the time of diagnosis, she had aspirations in life, right? And they have all either been abandoned or been delayed quite a bit. That is very difficult because those are the years when you want to enjoy the hard work you've done all your life.

23:18She is a young woman and, you know, there are many physical needs. There are psychological needs from a spouse. And obviously, I can't give that to her. And that hurts me. But then I also understand that this is life and we have to deal with life the way it presents itself to us. Right. Yeah, I feel bad too that, you know, I didn't have the future or the retirement that I had hoped to have. But I have accepted it as what it is. And we're fortunate. It's five years and he's still with us. We still enjoy normal things. So it's just a new norm for us. When my father was diagnosed and they were 18, 19, my father said to my mother, you don't need to go on with me because you have a whole life in front of you.

24:11So I understand if you don't see this as your future. And my mother said to him, I promise you in good and bad times, we will go through this together and we will get through this together. Sometimes it's like it's not always getting easier, but you get harder in the process and that makes it easier because sometimes people don't understand what you're going through or what your experiences are. make good memories together that that's the most important thing because this is something where we are now looking back through after my dad passed away to all the good memories we had all the the things we did together and that that's very beautiful if you can keep these as memories yes that's right it's just about building memories and living day to day right and we try not to think of the future when he's not here and we try to just not think of those i did initially but now We just look at it every day and we're just happy and we just accept that he's presently with us and we still enjoy good times.

25:19And keep enjoying those times because that's very important. And take as much pictures as you can because afterwards he will look back through it. And it's very beautiful to see. Mebub, you are living your life to the full at the moment by the sounds of it. Do you still feel angry though some days that you have a disease that is not curable? that at some point you know that it is going to kill you? No, I'm not angry at all. I certainly don't know what my journey is for. All I know is that I'm here and I have to live my life in the moment and whatever happens will happen. I can't predict. I cannot worry about it.

26:00I am a very faith-based individual. and so you know I leave it to that universal energy who I call Lord and I just say bless me with whatever time you want when you want to turn the switch off go ahead and turn it off I've done everything I wanted to do in this life I've made arrangements for my family they will have to live their lives when I'm not around. Mahbub and his wife Sophie in Canada in conversation with Evie in Belgium. And you'll be pleased to hear that they did swap contacts after our call. And hopefully they'll meet up, thanks to them and all our guests this week. I'm Rahul Tandon, and you've been listening to the documentary from the BBC World Service.

26:59We focus on the part of the internet that most people don't know about. It's called the dark web. Undercover in the furthest corners of the dark web, US special agents are on a mission to locate and rescue children from abuse. Move in now. Police! From the BBC World Service, World of Secrets, The Darkest Web follows their shocking investigations. Search for World of Secrets wherever you get your BBC podcasts.