Mike Sumner personal story
Summary
Mike is 38 and originally from Grimsby. Mike appeared on series 17 of the TV show, First Dates. Despite having good chemistry on their date, filmed in early 2020, Mike and Zoe decided to remain friends. In November 2020, a few months after the show was filmed, Mike was diagnosed with MND. Zoe was a good friend to Mike throughout the pandemic and Mike’s diagnosis,
and in September 2021 they became an item. In 2022, they moved in together in Sheffield.
First Dates – TV show
I’d been single for seven years when I applied to be on First Dates. I’d had three relationships in the past and I’d got to that stage where I’d been single for so long that I’d almost switched off that part of my brain and just accepted it would be that way for the foreseeable. I’ve always watched First Dates and I noticed in the credits one episode that they’d started recruiting for people to go on it, so I just got my laptop out, found a few photos to put in my application and filled in some amusing anecdotes. I thought, “well, I’ve had a go”, pressed submit and thought nothing else of it. I genuinely didn’t think for one minute I’d actually get on the show.
I’m also diagnosed with Asperger’s Syndrome so dates and events stick in my mind quite vividly,
which can be annoying to some people but I find it helpful. It was about three days after my birthday in January 2020, I got a phone call out of the blue. I remember the plumber had just been to service the boiler, I answered the phone and they said that they were from First Dates and immediately I was scrabbling around thinking what the significance of that was and then I remembered I’d sent an application about two months earlier. I talked to them for about an hour to build a picture up of me, they went through questions about my likes and dislikes and things like that. They said if they were interested in me, they’d arrange a screen test by Zoom - which they did. It could have fizzled out if they hadn’t wanted me on the show but at every stage I seemed to either make somebody laugh or be entertaining somehow and it was only early February when I was down in London filming the first part of the show - it’s quite a fast turnaround really.
I didn’t expect to find love on the show at all, I’m nothing if not a realist and, having watched the
show from the start, I realised that the percentage of people who go on to have successful
relationships is tiny compared to those that either don’t get on or just become friends. The
researcher asked me what my motive was for going on the show and I said purely because you only live once and I’d like to just have the experience of seeing a TV show from behind the curtain, anything else would have just been additional. When I walked into the restaurant towards Fred Sirieix, he already knew my name which was a bit weird to start with. At that moment I noticed all the cameras they have around - I think it’s several dozen - but eventually it faded once they sat me down at the bar. I got so distracted by the fact that it just looked like a normal restaurant that I almost forgot.
Zoe, Mike’s date
It’s difficult to say what my first impression of Zoe was because the thing that gets me is a person’s personality. If I click with somebody, it’s much more of a deep connection than a physical thing. So,when she walked in I just wondered if we could have some fun and have a laugh. I try not to form an opinion based on the first few seconds of meeting someone, because a lot of the time it’s wrong. I did a supercar driving experience recently and I’m sure that if anybody had seen me walk towards the cars with a walking stick, their initial impression would have been that I shouldn’t be allowed anywhere near a car. It turns out I was one of the quickest ones driving round the track, so, I try and think about that sort of thing and not allow initial preconceptions to pollute my thinking. I just thought as long as we could have a laugh and have a good time and share some stories then it would be good. The show edited a clip where Zoe downed a pint in front of me and I responded with “f***ing hell.”
They film the date over about two hours and then edit down what they want for the content, but it’s all completely impromptu because none of us are actors - I think if anybody gave me a script it would become absolutely apparent! The editing made it look like Zoe just sat down and downed the pint immediately, but they didn’t show her asking me whether I would like to see a party trick first. I thought she was going to get a handkerchief and fold it to look like a chicken or something like that, so I said yes and I didn’t realise that the next thing I’d be looking at was the bottom of her glass getting emptier and emptier and thinking ‘wow, when she gets to the bottom of that I’ve got to say something really profound or it’s going to fall flat’ so I was sort of watching the thing go down like a sand timer and trying to think what to say when she puts this glass down on the table and that’s why I gave the reaction I gave. I couldn’t think of anything else that would convey how unexpected and impressive that was.
When we went to film the bit where you sit side by side and say whether you’d like to see each
other again, that was completely unrehearsed. Neither of us knew what the other person was going to say and I think there was a moment where Zoe said that for a first ever date it couldn’t have gone any better and a little smile just creeps across my face because I was quite touched by that. We knew at that stage we’d got on well enough that we’d stay in touch and we exchanged phone numbers in the corridor after we’d filmed that, but we decided to just be friends. We started texting and it was always the intention to stay in touch but none of us knew then what was going to happen in March 2020.
Only about three weeks after we’d filmed, the world effectively stopped spinning, thanks to covid, so our friendship then took on a new importance. We kept each other’s spirits up through lockdown and had phone chats with each other and played little games over text and came up with playlists just to keep each other sane. I think in a lot of ways that brought us closer together, though,ironically, we were miles apart. She helped me through it in a lot of ways and I’d like to think that I helped to do the same for her.
Diagnosis
To anybody else, it’s just an episode of First Dates, but I’ll always know that about an hour before I was filmed walking towards the restaurant doors, I’d noticed a strange feeling in my left leg - it’s
given the show a weird complexion for me. It wasn’t anything pronounced, it wasn’t visible, I just
didn’t feel like I had the precision and control that I’d had a day before. I just thought maybe I’d
strained it and that I’d worry about it when I wasn’t filming a show for national television! I was
walking down Deansgate in Manchester, I could take you to the exact spot now where I just noticed something was up. I stopped for a second and I was very aware as I walked towards the entrance of the restaurant, so I tried to walk as nonchalantly as I could to hide it. Looking at the footage now, it’s very weird because I know what I was going through at that moment and nobody else does. It will always be a bit difficult to watch because it didn’t just go away overnight, it then led to something much more serious. That was kind of day zero, where the whole thing began, and it’s progressed from there. I left it for a month or two because the NHS was in chaos and I didn’t think that a little limp was worth fighting the crowds for. Everyone had been told to stay at home so just stayed at home and didn’t walk more than I had to. I did a bit of exercise but I took it easy.
It was probably about two months later when I went to the GP and they diagnosed me with a
dropped foot. I’d explained that MND was a concern of mine because my grandmother died of it in the early 1990s and, even though I was only six or seven, I can still remember what it did and what it was like, so I was no stranger to what it could be. I mentioned that to the GP and she said she couldn’t rule it out but it could be other things as well. So, I didn’t really have my concerns dealt with, I still had that going on, and then it took a few more weeks and a couple of MRI scans and I was eventually referred to the Royal Hallamshire Hospital in Sheffield. From there it was a fairly brisk process. They were all really great and they diagnosed me on 11 November 2020, Armistice Day.
Mike’s MND
I like to think of myself as being quite fortunate. I saw how my grandma deteriorated, and it might have been because of her age or because it affects everybody differently, but I remember her speech went very early on, and then her mobility and a lot of other things fell like dominoes in quite quick succession. Whereas, a year after being diagnosed (at time of podcast recording), it’s just my balance and walking that have been affected for me. I’ve become progressively more unsteady on my feet - I could walk a short distance and I limped a bit, I then had to get a stick, but then that became worrying because I could still fall over with that, so now I use a walker with wheels on it for any longer distances. I’ve not noticed any change in my swallowing, eating, speech or anything like that. So, if it only ends up being the mobility for the foreseeable future then, in a weird sort of way, I think I’m quite fortunate because there are people out there so much worse off and if I can keep doing what I’m doing and getting by like this then that’s not the worst thing ever.
Telling people about MND
I went to the hospital not thinking I was going to get a diagnosis. I’d had some tests done a few days before and I thought I was just going to get the results and it would be like an ongoing diagnostic process. I went on my own all the way to Sheffield in a taxi, which in hindsight was foolish. I remember sitting in the back of the taxi on the way back just with my phone messaging people and my phone lit up. I was sending these messages to close friends and family and they were all so shocked. I spent the whole hour and 20-minute taxi journey not really able to put my phone down because there were people asking questions like ‘are you okay?’, ‘what does this mean?’, ‘can I do anything?’. It was a bit of a blizzard that I hadn’t really thought of in advance, and then there was the fact that I still had to get my own head around it, let alone everybody else, so I don’t think I truly came to terms with it until a month or so later.
I made a particular effort to ring Zoe the following day. I’d messaged a lot of people on WhatsApp and things like that but because we’d become so close, I thought the absolute least I could do for her was tell her verbally so she can try and digest it and ask me questions. It’s not the sort of thing I thought I could do on a phone screen. She’s quite a pragmatic person. She doesn’t let emotions get the better of her. She gave quite a stoic answer, but I could tell in her voice that she was slightly shaken by what I’d just told her.
Relationship with Zoe
From the first lockdown for the following 15 months we didn’t see each other. There were tears and there were lockdowns, we were banished from this and that and it was so restrictive. I was grateful for modern technology allowing us to be on the phone and WhatsApp for messages and pictures and things like that - that kept us a bit sane. From June 2021, once things initially opened up, we didn’t waste any time. Zoe came over to Grimsby for a day out and I showed her around my hometown and then I went to hers in Sheffield for dinner. We just tried to cram in what we could have done over six months. There was a period in June/July 2021 where we were meeting up like every other weekend, pretty much doing something different, so it became quite full-on, considering we hadn’t seen each other for such a long time. It was like from the famine to the feast. Zoe and I were just friends when she came to Grimsby for a day trip, but then we went to a comedy night at the start of July 2021 in Manchester. I invited her because we were close and got on well and it seemed like she had the same sense of humour as me. To this day I still don’t know what did it, but there was something about that weekend. Something just hit me, I started to see her in a different way and I started to notice all the little qualities that she had that I hadn’t before and spending time with her started to really affect me emotionally. I realised that I was in trouble because it was apparent to me that I was falling for her quite hard and I was concerned that she might not be interested, which worried me at the back of my mind.
My feelings got stronger and stronger and I went up to Yorkshire to visit her aunt and uncle and
grandma. We had a really nice weekend together, it was fun and that just made my feelings build
even more because it felt so right. I was round at her flat on 11 September 2021 and I just came out with it and explained everything to her, thinking that even getting rebuffed would be better than having to just constantly drive round with a head full of feelings that I couldn’t do anything with. To my surprise, she told me that she’d felt the same way for some time.
I genuinely thought I was just going to put my feelings out there and be shot down. I was absolutely staggered when she said to me that she’d been thinking that we should have a relationship as well.
Part of the reason why she hadn’t said anything sooner was that she knew I’d got something else
going on that I was trying to deal with. The reason it took from July to September before she told me she had feelings for me was because she was working out whether she could handle being with me. I like to think it’s a credit to the chemistry that we’ve got and the way that we get on that we are where we are because if there was any doubt in her mind I’m sure she wouldn’t have revealed what she was feeling to me.
After realising that we want to spend as much time together as possible, Zoe and I now live in
Sheffield together. We’re living in Zoe’s rented flat at the moment, but we’re going through the
process of buying a bigger flat in Sheffield. Looking for places to live has been a trial because rented accommodation that ticks all our boxes was generally reserved for students only, and because I’m in receipt of Personal Independence Payment (PIP), landlords wouldn’t take us on as tenants. It was becoming such hard work, it ended up being simpler to get a mortgage and buy somewhere.
Intimacy
Zoe and I had conversations about being intimate before we got into anything like that, to
understand each other. I’m quite stubborn so I was never of the opinion that anything should be
avoided just on principle, and so we’ve now worked through that, and we’ve found a way because
there’s more than one way to go about something. We’ve had some fun trying things out where
we’ve realised that they might not work, but something else does. I’m not as strong or as able or as agile as I would have been five years ago, but I’m still here. My attitude is that there’s no point in crying about it and being miserable about the things I can’t do, I prefer to rejoice about the things I can do, which there are still plenty of. I genuinely am thankful for the way our relationship has turned out because we get on so well, we’ve got such a natural understanding of each other, the chemistry’s great, we have all these smutty jokes with each other which is brilliant. On the day I explained my feelings to Zoe, I said to her ‘I’ve never met anybody who’s more perfect for me than you’ and that is still the case now.
I can’t ever say that I’m not glad I did the show because it gave me Zoe, so I’ll always be grateful that I pressed submit that day on the laptop.
Work
I was on course to become a driving instructor, but I put that on ice once I was diagnosed. As much as I’m still able to drive perfectly fine at the moment and I hope that continues for the foreseeable, I couldn’t rationalise it in my mind that I could teach other people to drive when I knew that I would be heading downhill at some point. Not only that, time has taken on a new significance for me, it’s more precious to me now so, do I want to sit in a car for two hours teaching a 17 year old to reverse park? Not really. I’d much rather be in a nice restaurant with Zoe having a nice time.
Travelling
In November 2021, we went away to Lincoln and we had a great time. It was fabulous. A few weeks before that we were in the Cotswolds. It feels like I’m cramming about 10 years into two, but I’ve had to reassess my goals. I don’t really have any work-related goals now. It wouldn’t be safe for me to work anywhere as I can fall over at any moment, I don’t even have to trip over, my balance can just switch off and I fall.
Making the most of life
I’ve really just made life about doing things like this and, where I get the opportunity, trying to do
any good that I can. I’m involved in several clinical trials with the hospital. I’m doing a drug trial and I'm trying to make something positive out of my situation now.
If somebody asked me a couple of years ago could I do some of the things I’m doing now, I wouldn’t have had a clue. A lot of the way I am is down to stubbornness - I say that all the time to people in the medical profession, who I see quite a lot now. I’ve never liked the idea of being beaten by something and I’ve never liked the idea of giving in. It’s a case of whether I just give in and accept a substandard way of life, or do I keep fighting it until it becomes obvious that I can’t do something.
That’s the way I’ve chosen to go which is why I’m still driving around, I’m still walking about, I just
have to do it in a different way. I don’t feel as though I’ve sacrificed any quality of life so far and that seems like a way for me to balance it. There are some dark days and it is difficult sometimes but in no small part Zoe has got me through some really difficult stuff. That brings a lot of light into the darkness.
Kindness of friends, family and strangers
Right from when I was diagnosed, I’ve been blown away by how great family and friends have been. There are people who I wouldn’t have expected to hear from but I have. When I’m out with friends now, they’re all aware that there’s this extra risk that I could fall over and they’re all on it
immediately. The NHS staff have all been fabulous and it’s been really, really humbling to be treated so well. A couple of weekends ago I went to see ‘Back to the Future, the Musical’ at the Adelphi in London and genuinely I was terrified about the idea of going because it was an old theatre. I knew there would be really steep steps and all that kind of thing, but the staff there couldn’t have been nicer. They were absolutely superb, they carried my walking frame up for me, held onto me, and they popped up at half time to check if I was okay. They genuinely couldn’t have been nicer and it opened my eyes in a way, I didn’t realise how accommodating and lovely people could be until I was in this situation. Some of the everyday kindness that I encounter is just truly humbling.
Paul Green
Life before MND.
I first became aware of the MND Association after my wife was diagnosed in 2016. Prior to this we were living in Chester and my wife Joy was a nurse working in outpatients at the Countess of Chester hospital. I was working with a company in Sheffield, and I had a flat there, which meant I could travel back to Chester at weekends. Originally we were from Doncaster, so we’d sometimes use the flat to visit family. We’d go walking often as we lived near to North Wales and Chester, so we had many stunning walks on our doorstep. Joy had a good circle of friends in Chester, and they would go out and holiday with each other once a year. She enjoyed cooking for friends and family (her crumble was my favourite). We both share a love of travelling especially for significant anniversaries as we picked special places to go to. One anniversary which will always stay with me is our 25th when we went to Las Vegas and the Grand Canyon.
Joy was also very close to her brother and sister as well as our children and grandchildren. We were lucky enough to have had four children – three girls and one boy. The girls Felicity, Lindsay and Claire live in Doncaster and our son, Andrew, lives in South Korea. We also shared six grandchildren – two girls and four boys. Sophie, Daniel, Luke, Zak, Connor and Lacy. We enjoyed spending time with our grandchildren making memories. One memory Sophie has and will always stay with her is “Grandma Joy dressing up in a wig as Hannah Montana and dancing on just dance with me”. We shared many fond memories with our children with the holidays we took them on which we were lucky enough to capture which means our children have photo albums to look back on. Felicity will always remember towards the end when her mum said to her “I have had an amazing life and some amazing holidays”.
This was life until Saturday 7th February 2016 when we were at the flat in Sheffield for the weekend as we’d been out with our old neighbour in Doncaster. Sunday morning Joy woke up and said she wasn’t feeling well, and then she collapsed in the bathroom with a seizure, something I had never seen before. I called the ambulance, and they were there within minutes – I was still on the phone with the 999 responder when they arrived! They took us to the Northern General Hospital where they did some tests and found Joy had a brain tumour. It was benign but it was big which meant it had to come out. They operated on Joy in March. It was a very long day, and she went into theatre at 8.30am and didn’t come out until 7.00pm. It was very successful, and they were happy with how
it had gone. She came home the following Thursday well on her way to being on the mend. We
stayed in Sheffield, and she didn’t go back to work as because she had experienced a seizure they wanted her to make a full recovery, so we spent some time travelling back to Chester and to
Doncaster visiting our family.
Diagnosis.
Joy started to notice that her left foot was starting to droop, at first she thought it was when she was tired, but we had to notify the surgeon who monitored things and eventually they sent us for some tests, and in October we got called in for the diagnosis. We were just getting through effectively as up until Joy’s diagnosis, I hadn’t heard of MND. I went to see Andrew in South Korea as it was news I didn’t want to break over the phone. I told him I was over for work, but I think he really knew something was up. Whilst I was flying, they had a booklet on the MND Association’s website about carers and I read as much as I could at the time during the flight.
At the time we were at the flat and it was upstairs, Joy was struggling to cope with the stairs, so we made the decision to move into her sisters bungalow in Doncaster. Her sister was still living there so they got to spend some time together. For Joy it was a very rapid decline and she passed away 3rd February 2017, so we only had four months from diagnosis to the end.
Honouring Joy’s memory.
We didn’t have much to do with the Association during Joy’s MND journey as it all happened so
quickly. After she passed away I did eventually go back to work. They were brilliant and supported me throughout the whole thing. Through the operation, and then the MND diagnosis they didn’t push me to go back quickly and gave me a phased return to work. I imagined I’d go back and enjoy it again, but I went back and didn’t enjoy it anymore. Then one day, I read an article in Thumb Print about Association Visitors, and I thought “Ooh, maybe this will help after I’ve lost Joy.” I knew I wasn’t ready at that point, so I saved the article until I was ready.
Joy passed in February and her birthday was in April. Our oldest granddaughter, Sophie asked if she could do a charity walk on Joy’s birthday to raise money for MND, so that was how we started our fundraising journey. Sophie organised it all, she got her siblings to join in and her friends joined the walk as well. They had buckets with them and collected donations on the way. We set up just giving pages to raise as much money and awareness as we possibly could. Everyone did their research to honour Joy’s name. This is how we came to set up a tribute page in Joy’s memory. Any money we raise goes to her page and it gives us all a way of looking at what we’ve done since Joy passed away.
There was a fun run in the country park in Rotherham (2017) and I met with the Area Support
Coordinator at the time. I said to her I’d seen this thing about AV’s, and she advised there was
usually a wait time for about 18 months post-bereavement. She told me “Get in touch, and we’ll go from there.” I decided to plan so I could start doing visits before I retired from work, giving me an overlap so I wasn’t retiring and suddenly stopping and doing nothing, but I wanted something
meaningful to do at the same time.
My other cunning plan was to incorporate my love of taking photos. At the end, Joy gave me a list of things I had to do after she was gone. One point she was very strict on was that I had to get out and meet people. I didn’t know how I was going to do that as I’m not keen on pubs. Eventually I decided to get myself a motor home and join the motor caravan club as in the evenings you sit together and have a chat about common interests. I started going on rallies and photographing things, sitting and chatting in the evenings, enjoying a glass of wine (medicinal purposes of course!) I am doing something new and what Joy wanted, meeting people. I took the van on a recent holiday to Portugal as you can see pictured.
Becoming an AV.
I retired in 2019 and had started my AV role supporting people with the support of the ASC at the
time, Jane. People in that position try to match you with somebody they think is appropriate – so
you get a good interaction. The first person I was given, was a man in Doncaster in a village where I grew up so an area I knew. He had a relatively fast descent with his MND, and I think I started with him in January, and he passed in September. His wife told me I was welcome to come to the funeral and I thought “Should I go?” as I was worried it would bring back memories as it was being held at the same place as Joy’s. I’m glad I decided to go as I heard more about his life story, and it was very sweet towards the end they thanked me for supporting them through their journey. You don’t realise when you’re doing it that you have that impact on people, which made me realise how important it was and what we do. It inspired me to keep pushing on. I originally said I only wanted to support one person but after the funeral I started to increase the amount of people I was supporting.
Then we had the pandemic. I didn’t like supporting people over the phone because you couldn’t
interact with people in the same way. You can’t see them and be with them. If you’re with someone you can tell if they are okay or not but on the phone you can’t tell because you can’t really see. We got through it but I was very pleased to get out and visit again as it’s much nicer to visit than do a phone call.
I’ve made many good connections. Currently I’ve got a number of people on my book. Some that are post-loss and some going through the journey still. I was supporting a family through the pandemic, the dad had MND. I never got to see him alive as I was supporting over the phone, but I still see and speak to his daughters, one of whom who has genetic MND. She’s currently on treatment for the SOD-1 gene. To hear from the daughter in London has been really positive. The family actually did a Jamaican cookout fundraiser for MND. I was there for that which was lovely. It’s still so nice to see the people and visit them and the feedback I’ve had has been that they feel supported. I’m glad I’ve made a difference in their journey even if I’m only someone for them to talk to.
Learning and growing.
The kids think I’m bonkers but for me it gives life a purpose because it feels really important to do
this and it feels like I’m helping people with what Joy had and what we went through. I think it’s
easier to have the empathy when you’ve been there.
There are so many lessons I’m learning. Towards the end, we spoke about putting Joy into a hospice for some respite whilst they balanced the medication. It never happened but there is a spiritual centre there manned by two priests, one Catholic and one Methodist. The Methodist priest was a really lovely lady who came and visited. She had a chat with Joy and Joy actually asked her if she would do the service at the crematorium. She did offer to speak to me as well, but I wasn’t ready to talk. I kept her number and afterwards I got in touch and Meg became my regular visitor and joint bereavement councillor.
Around September time, having done the walk with Sophie I decided it was probably time I did some fundraising myself. I thought “I know, I’ll abseil.” I decided to abseil in the Peak District to raise some money. On the day, we went up and the guy said, “Do as you’re told, you’ll be scared but don’t worry, you’ll be fine.” I went first, I leaned back over the edge to walk down, and I got to the bottom and realised I wasn’t scared, and I wasn’t elated either. It wasn’t until then I released how emotionally numb I was. I spoke to Meg, and she put me in touch with the Catholic priest who told me about mindfulness. He was the most unusual Catholic priest as we never spoke about religion at all! He did teach me how to do effective meditation and I still maintain that practise to this day. Every morning I do 15 minutes meditation before I start my day. Something I never used to do. It helps me to stay balanced and gives me perspective. I was a big believer in God but having seen MND, I’m finding it hard to believe anymore.
Hopes for the future.
Every person I see with MND is different. Each journey is so different, so it makes me feel like a nonscientist that when they discover more about it they will discover lots more variants. People are so different how they deteriorate, how they start, and where they finish. It’s weird to watch and realise how many variations must be out there.
In my working life I worked in project management. Part of that requires a level of problem solving. When you try to identify a root cause of something it can be very complicated. My hope is before they put me in a box if they can just find one root cause. Once they’ve found one, it will snowball. In Sheffield they have a memorial every two years for people who have died from MND. A lady who is involved in MND research spoke and she seemed very positive they can model MND in the lab which will help increase the speed of understanding. I just hope they can find a cause and a cure or treatment for it soon.