Welcome to Living Well with MS Coffee Break #31, where we are pleased to welcome Nigel Bartram as our guest! Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you’ll join Geoff Allix for an intimate chat with a different member of our global community. Our guests will share their personal stories and talk about their challenges and victories, large and small. We hope you find common cause and a source of inspiration from th...
Welcome to Living Well with MS Coffee Break #31, where we are pleased to welcome Nigel Bartram as our guest!
Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you’ll join Geoff Allix for an intimate chat with a different member of our global community. Our guests will share their personal stories and talk about their challenges and victories, large and small. We hope you find common cause and a source of inspiration from the stories of these very special people. As always, your comments and suggestions are always welcome by emailing podcast@overcomingms.org.
Nigel is a special member of our community – a retired marketing professional who has fused his writing talents and penchant for humor to share his experiences with MS from a very unusual and humorous perspective. We’ll dive more into that shortly, plus we have a very special surprise for you, so stay tuned. We hope you enjoy this episode’s conversation with Nigel, coming to you straight from Paris, France.
Nigel’s Bio (in his own words):
I was born in London but moved around the UK as a child. After a 1st degree in History and then an MBA, my career landed mostly in marketing in the financial sector. In my last job in the UK, as Sales & Marketing Director of a retail stockbroker, following spectacular growth from start-up, I helped lead the company through a heavily oversubscribed IPO onto the London Stock Exchange.
Aged 43 I upped sticks to follow Caroline, my wife, in what was planned to be a temporary career move for her to France, along with our two young children, and my rubbish French. I became a house husband, looking after the kids, improving my ‘null’ French, and helping build a house in our Paris suburb (with stunning views towards the city. Temporary morphed into permanent. A joyful adventure, imbibing the beauty of our surrounds and French gastronomy became altogether more serious. Settling in France permanently meant I had to find a job. I retrained as a teacher of English, set up a language school, and taught part-time as a university Associate Professor.
All that was a breeze compared to a body which inexplicably started to go haywire. Overnight, out of nowhere, I lost 90% of the hearing in one ear (which happily came back of its own accord, more or less). In my long-gone student holidays, I worked as a tree surgeon, so heights held no fear for me. So how come I found myself sick with panic driving very slowly along the magnificent Gorge du Verdun with Caroline and the kids on board in 2003? I was petrified by the sheer drop into the ravine, something I’d have relished the challenge of scaling up in yesteryear. I suffered in silence of course.
I wasn’t diagnosed with MS for another six years, time enough for my ‘flappy foot’ and drunken sailor swagger to become my trademark walk. Bit by bit, bucket loads of other symptoms intruded into my daily life. Time enough also for MS to land me in plenty of challenging situations, some of which, even though they may have been difficult at the time, were clearly comic book stuff.
The idea of the book crystalised a few years later when I was on an OMS retreat. To my great surprise and delight, I realised that MS hadn’t robbed any of us MS suffers of our senses of humour. Indeed, it had given us a rich new vein of experiences to mine and chortle over, so important when up to half of people with MS experience depression at some point.
The deal was sealed when the retreat facilitators, Dr Keryn Taylor and Dr Craig Hassed, a world-renowned expert on mindfulness, warmly embraced the idea of such a book for the morale boost it would bring to people with MS, and those close to them, by presenting an altogether lighter side of the condition. Off I went to write down a few of my own stories and harvest those of other people with MS. What a job the latter proved to be!
Questions:
- Nigel, welcome to Living Well with MS Coffee Break. We’re so pleased to have you on our program. The purpose of this series is to better get to know some of the diverse members of our community from around the world, and today you’re in the hot seat. Can you tell us a little about your day-to-day life?
- When were you diagnosed with MS? Can you provide some context on that? When were you diagnosed and how did you initially deal with it?
- At which point did you come across the OMS program? How was that experience for you? Why did you decide to start following it?
- You mention in one of the 3 key things to know about you, which can be found in the show notes, that OMS may have saved your life. That’s powerful. Can you speak a bit about that?
- Let’s shift gears a little bit and talk about a very exciting project you’ve just completed and are about to launch. You’ve written a book called ‘MS A Funny Thing’, which is an illustrated collection of humorous essays you’ve written through the years about your experience with MS. Can you tell us a bit about it?
- How has humor helped you deal with the challenges of MS?
- Another special thing about this book is that you’ve dedicated all the proceeds to several nominated MS charities. What compelled you to model the project this way?
- This book is illustrated, and I understand there is an interesting backstory to how you came to collaborate with the illustrator. Can you share a little about that?
- Since we have whet everyone’s appetite about this book, we have a very special treat for you. Nigel is going to read one of his essays from the book! This is very exciting, Nigel. It’s the first author reading on this podcast. Please take it away and perhaps share its title and a little context on the piece you’re going to read for the next few minutes.
- Wow, that was fantastic. Thanks so much, Nigel. How can people get their hands on your book?
- Before we ask Nigel one final question, I want to remind our listeners that May is Mindfulness and Meditation month at OMS. To mark that, tune into a special webinar on May 17, featuring a live meditation session with Phil Startin. If you’re listening to this episode after May 17, don’t worry, you can view a replay of this or any of our webinars at any time. Details on registering for this free webinar, as well as a link to replays of past webinars, can be found in our show notes. And check out the OMS social channels for daily mindfulness tips that you can incorporate into your day.
- Nigel, thank you so much for being on Living Well with MS Coffee Break and allowing our community to get to know one of its own a little better. One last question before you go, and it’s a bit of a tradition in that we ask it of all our Coffee Break guests. If you tap into your experience with MS generally and OMS specifically for a nugget of wisdom that would help people ease into and better adopt the OMS program, what would that advice be?
Praise for Nigel’s Book:
“There are three things I'd like to say about Nigel's book. First, in medicine, we now understand that laughter is good medicine. This book is decidedly good for you! Second, all proceeds go to worthy MS charities. Win-win! Third… now what was that third thing? I need to take Nigel's sage advice and stop nominating how many points I am about to make, don't I?”
Professor George Jelinek MD, Honorary Professor, Melbourne School of Population and Global Health and Founder of Overcoming Multiple Sclerosis
Three Interesting Facts About Nigel (in his own words):
- I’m physically pretty handicapped, with an EDSS of 7, but still live a fulfilled life. I haven’t given up hope of getting some lost physical function back and am working hard to do that and making some early progress.
- I’m certain but can’t prove that the OMS regime saved my life, getting me through a flirtation with the grim reaper three years ago.
- Until fairly recently, we who’ve continued deteriorate physically despite following the programme religiously, have been a real OMS Cinderella, as though somehow, we're an aberration and should be ignored. This view is shared by quite a lot of my OMS friends who have similarly failed to experience any recovery. We nonetheless continue to adhere to the programme believing it to be a force for good even if it doesn't do what it says on the tin for us.
Nigel’s Links:
- Nigel’s book MS A Funny Thing (well sometimes) is available on Amazon
- Check out the blogs Nigel has written on the Overcoming MS website
- Check out Nigel’s website, where you can get a taste of his writings
- Register here for the OMS meditation webinar with live meditation session, taking place on May 17; if you’ve missed the live webinar, catch the replay here
Coming up on our next episode:
On the next episode of Living Well with MS, premiering May 25, 2022, meet Arlene Faulk, Tai Chi instructor, storyteller, and author of the new book, Walking on Pins and Needles: A Memoir of Chronic Resilience in the Face of Multiple Sclerosis. Learn how Arlene deploys the ancient practice of Tai Chi to help manage chronic pain associated with MS.
Don’t miss out:
Subscribe to this podcast and never miss an episode. You can catch any episode of Living Well with MS here or on your favorite podcast listening app. For your convenience, a full episode transcript is also available on all platforms within 72 hours of each episode’s premiere. If you like our program, don’t be shy and leave a review on Apple Podcasts or wherever you tune into the show. And feel free to share your comments and suggestions for future guests and episode topics by emailing podcast@overcomingms.org.
S4E51c Transcript
Coffee Break #31 with Nigel Bartram
Geoff Allix (00:01):
Welcome to Living Well with MS Coffee Break, a part of the Living Well with MS podcast family from Overcoming MS, the world's leading multiple sclerosis healthy lifestyle charity, celebrating its 10th year of serving the MS community. I'm your host, Geoff Allix. Today, you'll meet someone living with MS from our diverse and global Overcoming MS community. Our Coffee Break series invites you into the lives of each guest. They share their personal MS journeys and speak openly about their challenges and victories, large and small. We hope you find some common cause and a source of inspiration from the stories of these very special people. You can check out our show notes for more information and useful links. You can find these on our website at www.overcomingms.org/podcast.
If you enjoy the show, please spread the word about us on your social media channels or leave a review wherever you tune in to our podcast. Finally, don't forget to subscribe to Living Well with MS on your favorite podcast platform so you never miss an episode. So get your favorite beverage ready, and let's meet today's guest on Living Well with MS Coffee Break.
Welcome to Living Well with MS Coffee Break #31, where we're pleased to welcome Nigel Bartram as our guest. Our Coffee Break series is your chance to get to know members of our diverse OMS community. In each episode, you'll join me for an intimate chat with a different member of our global community. Our guests will share their personal stories and talk about their challenges and victories, large and small. We hope you find common cause and a source of inspiration from the stories of these very special people. As always, your comments and suggestions are welcome by emailing podcast@overcomingms.org. That's podcast@overcomingms.org.
Nigel is a special member of our community, a retired marketing professional who has fused his writing talents and penchant for humor to share his experiences with MS from a very unusual and humorous perspective. We'll dive more into that shortly; plus, we have a very special surprise for you, so stay tuned. We hope you enjoy this episode's conversation with Nigel, coming to you straight from Paris, France.
So Nigel, welcome to Living Well with MS Coffee Break. We're very pleased to have you on the program, and the purpose of this series is to get to know a bit better the diverse members of our community from around the world, and today you're joining us from Paris, France. So could you tell us a little bit about your day-to-day life?
Nigel Bartram (02:27):
Yeah, thanks very much for having me. It's a great pleasure. First of all, a little correction. It's not your fault, but we actually don't live in the center of Paris, or actually in Paris itself, but in a very leafy suburb, with a forest on one side and the river Seine, you can see the barges going past from our bed in the morning, we're about 20 kilometers outside the center of Paris.
Geoff Allix (02:51):
That actually makes it sound more idyllic than living in Paris now.
Nigel Bartram (02:55):
Well, it is. And I think in common with what's happened in the UK and many countries post-COVID, people are beating a path out of big towns and cities to go to places where there are spaces which during confinement, as they called it here, are a bit more pleasurable than being cooped up in a rabbit hutch, which is many people's place in Paris.
But yeah, so my everyday life, it's I think largely unexciting. I'm fairly handicapped, so I don't get around very much, but I spend quite a lot of time writing on my computer and doing blogs for OMS and for other MS charities, and it's one of the reasons I had time to create the book. One of the great delights of living here is the gastronomy, which is a reason why we stayed and not went back. So lots of delicious meals, all conforming to the OMS guidelines, or as we called it on my retreat, legal food. And incidentally it's easier, I think, in the UK to eat out than it is here. People, with the exception where they get to know you very well, look incomprehensibly at you when you say, "Well, I can't have this, I can't have that, can't have that," and the rest of it. So they give you a plate of mushy green beans or something quite often. I exaggerate, but anyway.
Geoff Allix (04:34):
No, I've been to France a number of times since following OMS diet, and I would say it's one of the more challenging places I've been to. We did eat a fair amount of pizza, because anywhere that does freshly made pizza, it's fine. Have pizza without cheese. But yes-
Nigel Bartram (04:56):
I think that one of the saving graces actually is fish, because the French eat far, far more fish and seafood than in places in the UK. So even in a brasserie, you'll find fish on the menu, and they'll deign to not fry it or whatever, then you're okay.
Geoff Allix (05:19):
And so when were you diagnosed with MS, and could you tell us a bit about that diagnosis and how that went?
Nigel Bartram (05:23):
Yeah, I was diagnosed in 2009, but the first symptoms started appearing in 2003. And the reason for the delay was, I guess, twofold in the diagnosis. Firstly, that my GP, while I wouldn't expect him to have been able to diagnose MS, really ignored things that were happening to me, and just sent me for more and more physio, which of course did nothing at all. At the time, one of the big symptoms was what I call the floppy foot, drop foot. And so that was one cause of the delay. The other was that courtesy of SNCF, the French train company, I had a big accident so I was laid up for over a year and ended up suing the rail company. So that totally disrupted life, including getting on the trail of whatever it was that was causing the problem.
So I was diagnosed in 2009, as I said. Immediately after diagnosis, I had to go back to the UK for a week and left my wife, and the neurologist sent the results through. And in French, MS or multiple sclerosis is called sclérose en plaques, SEP they call it, for MS. And my wife is really, really bilingual, but you can only ever be totally bilingual, or you can only be bilingual to the extent you've lived in the two languages through the same life experiences. So of course, she's never had any cause to know what SEP or MS in French was, so she immediately Googled and was appalled to find out what it was that was wrong with me.
And I think it's a fairly common phenomenon that it's often tougher for the partner, for the wife or for whoever it is that's the bystander in this, than it is for the person themselves. Because I mean, we're helpless to some degree, although if you haven't got primary progressive MS then there are meds now available. They just haven't the faintest clue. And for me, it was actually a welcome relief, because I'd had this bag full of things happening over the preceding six years and I now had an explanation for it. That wasn't good news, obviously, but at least I had some rationale to explain what had been happening to me.
Geoff Allix (08:12):
That's true. And for me personally it was like, I haven't got a tumor in my brain, or something. You start thinking, "What else could it be? It's something going on neurologically." And so it could have been worse, there is that.
Nigel Bartram (08:28):
Yeah. Well, I think your imagination is better than mine. I didn't even think... What on Earth is causing the incontinence, whatever's causing my foot to drop and me trip up everywhere.
Geoff Allix (08:43):
And when did you come across OMS, and how did that go?
Nigel Bartram (08:49):
Yes, I came across OMS courtesy of... I don't know if you know the magazine New Pathways.
Geoff Allix (08:54):
Mm-hmm.
Nigel Bartram (08:57):
I can't remember how this happened, but anyway, I was in contact with the editor of New Pathways, and he told me about an event which was taking place in Brighton, where [inaudible 00:09:11] and Craig Hassed was there as well and was giving a conference in the Amex center there. So I went along, that was in 2014, and I absolutely bought what I was hearing.
And I was nowhere near on the OMS program, but I found over the course of the preceding years that I probably did the shopping most of all, more than my wife. And I found I'd gone off red meat almost totally. And so the family are complaining, "Why are you giving us all this chicken?" None of them liked fish, so I didn't stick my neck out that far, but the things my body was telling me that it no longer wanted. So actually the food side of it really didn't give me a big, big problem, because I was mentally and physiologically unconsciously heading that way in any case. So that's how I came across OMS, and then the following year I was lucky enough to go on a retreat, a weeklong retreat in Ammerdown. So that's my OMS story.
Geoff Allix (10:25):
And you mentioned in one of the three things to know about you in the show notes that OMS may have saved your life. So that's quite a powerful statement, so could you tell us about that?
Nigel Bartram (10:43):
Well, a powerful statement made by a non-medic, non-scientist. You have to take it with the caveat. Yeah, it was coming up on three years ago, I was admitted into A&E; well, twice actually, so they bundled me out the door at two o'clock in the morning the first time. And it turned out to be pancreatitis, which is probably caused by a gallstone escaping the gallbladder. I got septicemia, and I got a couple of other things. So I was six weeks in intensive care. And it's my honest belief, but I say it's an untestable thing to say, but that my body wouldn't have been strong to withstand all that.
The surgeon who subsequently took out my gallbladder to avoid any repetition with gall stones, he said... Because I was questioning whether, because it was the first time anything like this ever happened, whether it was necessary. And he said, "Well, about 50% of people who get pancreatitis like you die. So you're lucky to have escaped that. And then you had septicemia on top of it." And so that's my belief that it was some inner strength that really got me through it. It was very challenging to keep to the diet, to keep to the food regime in hospital, with hospital food. [inaudible 00:12:30].
Geoff Allix (12:30):
Yes. I've had some infusions, and I found that staying in hospitals can be somewhat problematic, but yeah. Thankfully not for as long as you, so I could manage it for a few days, things being brought-
Nigel Bartram (12:45):
They allowed my wife to come in with meals stuck in the fridge for a couple of days’ worth. So a mixture of starvation and brought in meals got me through it.
Geoff Allix (12:59):
So you've touched on your book, so if we could change a little bit and talk about this, so it's a hugely exciting project you just completed, about to launch. And the book is called MS A Funny Thing, which is an illustrated collection of humorous essays that you've written through the years about your experience with MS. So could you tell us a bit about the book?
Nigel Bartram (13:20):
Yeah. Sorry, just to slightly correct what you said. Well, first of all, the full title is MS A Funny Thing (well sometimes!), not always. And secondly, that I mean, I've got two or three stories in there, but I didn't want a book about my experiences. I want a book about lots of people with MS experience, and therefore it's a collection of the stories and a couple of poems by people that I've garnered over the years. So yeah, it's an illustrated book, each story or poem is illustrated by a funny drawing or painting done by professional artists.
The genesis actually came about on the OMS retreat because I was really surprised, agreeably so, by the real positivity that I found amongst my fellow retreatees. I don't know what I was really expecting, but plenty of laughter, lots of bonhomie, and so on and so forth. And so I thought, well, this is good. People with a sentence of MS don't necessarily throw away their humorous side at all. And the two facilitators, one's Dr. Craig Hassed, the mindfulness guru, and Dr. Keren Taylor, who's a consultant psychiatrist and works under the OMS umbrella. I bounced the idea off them of a book exactly as it's turned out and asked them what they thought. And they thought it was a very, very good idea. So I floated it to the group, who all liked it as well. So I was then able to tap a few members in the group for stories. And that was really the start of it.
Geoff Allix (15:29):
And has humor helped you deal with some of the challenges of MS?
Nigel Bartram (15:35):
I guess so. I never really thought about it in those terms, because looking for the funny side of things, and not in a desperate search, but through difficulty, often in retrospect, you do find something to laugh about, something that wouldn't have happened to somebody else if they'd been able bodied or not been in that particular situation because of the MS symptoms causing that. And through the book, being able to talk to other people about their experiences and helping them write up in some cases their experiences, and they're genuinely funny.
Geoff Allix (16:26):
And another special thing about the book is that you've dedicated all the proceeds to several nominated MS charities. So what compelled you to make that decision? Why did you decide to model the project this way?
Nigel Bartram (16:42):
Because I don't need the money. We don't need the money, particularly. I thought that... Choosing the charities, that they have given me a lot. So it's a way of paying that back, hopefully with dividends. So it was pretty much a no brainer to do it for those two reasons.
Geoff Allix (17:10):
And I've heard that there's an interesting backstory with how you came to work with the illustrator for the book, so could you tell us a little bit about that?
Nigel Bartram (17:22):
Yes. The idea for having illustrations came from a friend in London, and at the time one of her brothers was doing an art course, and I said, "Yeah, it's a great idea, but where do I find somebody to do the illustrations?" And as I said, her brother was doing an art course at the time, so she said, "Well, I'll get my brother to post something on the notice board," which he did, and there were a couple of responses, one of which turned out to be the person that did probably about the first 12, 15 illustrations, was an Italian student studying in London at the time.
And who she termed her favorite auntie; it wasn't actually an aunt, a blood relation, but her favorite family friend; had MS and quite severely disabled. And so it obviously chimed with her as a cause. But I think what also within that struck a chord was that despite I did have a Zoom with her so-called auntie one occasion, who was in a wheelchair, unable to use a mouse so using eye movement to control the cursor, but was nonetheless chirpy. And I think that that probably resonated a lot with the illustrator. And so for a pittance, she did the illustrations, and exercised a lot of patience in dealing with somebody who is completely unartistic, and on a good day can do a half sensible brief and on a bad day nobody can understand what I'm thinking about.
Geoff Allix (19:12):
And since we've whet everyone's appetite about the book, we have a special treat for our listeners, and Nigel's going to read one of his essays from the book. So it's the first author reading we've had on the podcast, so please take it away. And could you share the title and a little context on the piece that you're going to read for the next few minutes?
Nigel Bartram (19:34):
Yeah. Well, this isn't one of my stories, because I wouldn't lay claim to having the best stories in the book at all. This is one I selected it because it's quite punchy and not too long. So I thought I didn't want to send your listeners off to sleep, but if I did, with a smile on their face perhaps. But anyway, so the title of this, it's by somebody called Ian Daly, and the title is MS, Walking Sticks, Waterboarding, and Much More.
Multiple sclerosis is an insidious disease. The changes that it brings about can seriously affect your life, without you immediately realizing. For me, the first and possibly hardest change to come to terms with was needing assistance to be able to get around. For context, I was a reasonably fit 50-year-old man who would walk approximately five miles a day. I loved to walk. I've always tried to preserve some sense of humor when dealing with MS and its sackful of issues. I probably laugh at things that I shouldn't, say things that cause friends to look at me, and I suspect silently tut. Consultants and nurses roll their eyes, but I usually get a laugh, and that's what matters. It's my chronic illness, and I'll take whatever pleasure I can from it.
Anyhow, jump ahead a couple of years, and I'd started to find walking difficult and falls were becoming more frequent. My legs had stiffened up; controlling them was becoming ever more wearisome. The usual test, two consultants plus an MRI, and I'm awarded a title of MAM with PPMS, middle aged man with primary progressive MS. Hooray! I remain disappointed that there isn't a badge, some form of certificate, and media recognition. With legs that were always tired, I elected to use a stick to help keep mobile and hopefully more stable. Rather than burden the NHS in innumerable physiotherapist and occupational therapists, who I suspected have better things to do, I ordered an adjustable stick through the internet. It arrived and it was reasonably successful in enabling me to walk short distances.
Accepting I was now MAM with PPMS who needed a stick was slightly harder to come to terms with. I needed to shake off this pride thing. It seems this is a common experience and is the subject of many "do whatever you need to do to get by and stay strong" articles over the internet. Due to a rapidly wasting left leg, I soon became MAM with PPMS who needs two sticks. Isn't life grand? Walking short distances was now possible, although my mean-minded MS probably reasoned that I was getting around too well with my two sticks; with cushioned hand grips, no less; elected to introduce severe vertigo for good measure. So I now find I'm walking with two sticks across the deck of a ship during high seas wearing roller skates. Superb.
Incidentally, I was once visiting a doctor with my two sticks and severe vertigo for a series of blood tests. I was discussing weight gain with the nurse, and the fact it's hard to exercise when you have two sticks, weak legs, and vertigo, as you do when someone is sucking bucket loads of blood out of your arm. "Have you tried a treadmill?" says the nurse. Fortunately, she finished extracting blood and was concentrating on filling buckets and applying the useless cotton wool bandage to each of my shoulders, so didn't see my wide-eyed stare, and although I do say myself, magnificent eye roll, combined with my mutter of "Jesus" under my breath. Some people have very little idea of how lucky they are not to go home without having been hit by an office chair.
So MAM with PPMS who needs two sticks now has a further issue: stairs. I've come to detest stairs. They have the ability to hurt my knee in a uniquely painful manner. I attempt to minimize this by using my arms on the banisters to take some of my weight. This only really works on the way down. On the way up, it's a matter of hauling myself along while trying to lessen the weight on my leg and the searing pain in my knee joint which it causes. I can't use my sticks, as I need to hold onto something. Remember the vertigo? I suppose I could try a treadmill. "You need a stair lift." "What is it I now need?" "A stair lift." So MAM with PPMS who needs two sticks becomes MAM with PPMS who needs two sticks and a stair lift. Excellent. To be fair, I rate the stair lift as one of the best inventions of mankind. Okay, there's the wheel, the car, sliced bread, gin, and the internet, but really, I can now get up and down stairs.
It does however come with a few tiny issues. Issue one. The stair lifts are generally designed for the elderly and even more infirm than I; their operation reflects this. Incidentally, I have nothing against the elderly. Some of my oldest friends are elderly, and I hope to survive to join their ranks one day, PPMS permitting. Anyway, I press a button and go upstairs. Pause to count grains of sand. Nothing happens for what I'm told is five seconds. It seems infinitely longer. Nothing apart from a very loud screech from the unit, no doubt to warn any other parking elderly person in the vicinity that something's about to happen and that they should dive for cover. The screech is loud enough to hurt my ears. Dogs run down our road to get away from the sound, whilst bats, no doubt attracted by the high frequency, try to get in the window. Being of a practical nature, I've removed the cover, voided the warranty, and unceremoniously jammed an ear plug into the speaker. It dulled the screech a bit, but I can still hear it, as I suspect all the dogs in the neighborhood can.
Issue two. After a five second delay and the eardrums have perforated, we're moving. As far as I can detect, there are three speeds: very slow, slow, and a bit slow, like my walking these days. When the engineer came to fit and program the unit, I was watching it as it made its leisurely way up and down the stairs, configuring the motor all the climb and corners. "Can you make it go a bit quicker?" "No. Sorry. That's it." I'm in no position to argue. Without it I'm confined to one floor. Admittedly, it'd be one of my choosing.
Third issue. Speaking to the company which makes the stair lift. Again, don't get me wrong, I know they have a specific demographic they target for sale, and that's grand. What they do not appear to acknowledge is that everyone who needs a stair lift is stone deaf and has a man with a red flag to walk in front of their car. Indeed, I have the hearing of a bat, and until recently owned an extremely large and very fast motorcycle. That was another casualty of the MS progression. Anyway, I digress. An example will be the call to let me know when the engineer was arriving to install the lift. "Hello? Is that Mr. Daly?" The lady speaking clearly and louder than I would generally have expected. "It is," I find myself shouting a little, as if trying to join in. "Mr. Daly, we're arranging for our engineer, Adam," not his real name, "to attend tomorrow. Would you prefer AM or a PM visit?" "AM, please." "Great. Would 11 o'clock be a good time? That should give you plenty of times to get washed and dressed and have your breakfast." "Er, okay. That'll be fine."
I'm not used to this level of interest or consideration. Like most people, I normally have to endure the "We're unable to give you a time. AM or PM is best I can do." Appointment fixed; I wonder if I have time to nip out to get the engineer a gift. Nothing extravagant, you understand, just a token. "When Adam arrives, he'll show you his identification badge. If you're not completely happy, please give us a ring to confirm his ID is genuine. He won't mind waiting." "If I'm not happy, I'll bounce Adam down the drive." "I beg your pardon?" "Nothing. 11 o'clock tomorrow then. Yep." You see, everyone must be elderly if they have a stair lift. I've done the thing where you ask for a note that you put on your account, you know the sort of thing, "Please do not treat Ian as an elderly gentleman. He's not elderly, neither is he a gentleman." This makes not a blind bit of difference. It is extremely annoying, until there's a problem or you need something.
About a year ago, I was cruising up to the first floor, coffee in one hand, motorcycle helmet on in order to deaden the sound, and my finger on the requisite button. I arrived upstairs, where I spent some time playing with the internet and drinking coffee. On attempting my return journey, nothing. The whole thing was dead as a dodo. So I telephoned the company to advise them of my dilemma. "I'm trapped outside." I thought I'd go straight for the dramatic introduction, as it would raise a level of medium to high panic.
An entirely reasonable and professional sounding lady began slowly to talk me through a list of resolutions that must have previously worked. Not today though. "Are you able to get downstairs, Ian?" "Of course," my sarcasm nerve had now kicked in, "that's why we spent four and a half grand on a stair lift." "I beg your pardon?" "Nothing. Just thinking out loud. Not really, I'm pretty stuck here." "Okay. Then there's something we can try." The fix turned out to be opening the footrest and then slamming it closed. "As hard as you can." "Really?" "Yes, really." This I did. Everything lit up like a Christmas tree and the warning bleep felt compelled to join in. All sorted. Well, almost. Adam, not his real name, turned up the next day to replace the main circuit board, and at a prearranged time.
After a lot of inane rambling, my message here is if there's something, anything, which can make your life a little easier, then for the love of God, go for it. Walking stick, crutches, stair lift, car adaptations, grab rails, false limbs, parachutes; they're all there to enable you to, or at least some semblance of you. Use them. Walk or shuffle to the park. Point at pigeons with your stick. Make sarcastic comments to call center staff. The possibilities are endless. Life with MS is hard enough.
I was showering the other morning and dropped the soap, such a trivial thing for a non-MAM with PPMS. It's only a small shower cubicle, so I bent double to pick up the soap, slipped, and became wedged in the corner, and to all intents and purposes upside down. It was like being waterboarded. If it wasn't for the grab rail, I'd probably have drowned. How my partner and I laughed. Ian Daly, a middle-aged man with PPMS, who needs two sticks and a stair lift, and a non-slip mat in the shower, and grab rails in the said shower, plus a grab rail to [inaudible 00:32:39] and a stool for the shower.
Geoff Allix (32:43):
Thank you very much for that. That was fantastic. So now that you've whet our appetite with that, how can people get hold of the book?
Nigel Bartram (32:54):
Right, it'll be sold on Amazon in print form and also as an eBook. It's due come out on the 30th of May, which is World MS Day. I believe we chose the date in order hopefully to get a higher profile for it. So it'll be coming out shortly after, I think this podcast is released, won't it?
Geoff Allix (33:23):
Yeah. Yeah. This is coming out May. So you mentioned at the end of May is World MS Day, and also I want to remind our listeners that May is Mindfulness and Meditation Month at OMS. And to mark that, you can tune into a special webinar on May the 17th featuring a live meditation session with Phil Startin. And if you're listening to this episode after May 17th, don't worry, you can view a replay of this or any webinars at any time. And details of registering for the free webinar as well as a link to replays of past webinars can be found in the show notes for this episode. And check out the OMS social channels for daily mindfulness tips that you can incorporate into your day. So Nigel, thank you so much for being our guest on Living Well with MS Coffee Break.
Nigel Bartram (33:23):
Could I just interrupt you a second?
Geoff Allix (33:23):
Yep, sorry.
Nigel Bartram (34:16):
Your plug was instantly longer than mine.
Geoff Allix (34:16):
I know.
Nigel Bartram (34:19):
I must just add that just if you go onto Amazon and Google, put the search MS A Funny Thing, there won't be anything like it, so you don't need to remember the full title of the book.
Geoff Allix (34:35):
And we will have links in the show notes as well actually, so you'd be able to get to the book no problem.
Nigel Bartram (34:35):
Okay. Fantastic.
Geoff Allix (34:41):
So one final thing that we normally ask our guests, which is a bit of a tradition that we have, which is that if you tap into your experience with MS generally and OMS specifically for a nugget of wisdom that could help people, particularly new people, adopt the OMS program, what would that advice be?
Nigel Bartram (35:04):
One particular aspect or just one thing-
Geoff Allix (35:06):
No, just anything that you think could help people who are maybe newly diagnosed or maybe new to the OMS program.
Nigel Bartram (35:16):
I think I'd say two things, if I may.
Geoff Allix (35:18):
Yeah.
Nigel Bartram (35:19):
One is that although some people may find the diet difficult to come to terms with, there are so many great recipes that you can get through OMS. You won't be depriving yourself of an enjoyable gastronomy at all. And it is so utterly healthy that whether you had MS or not, it's such a good thing to do. The second thing I would say, and obviously I don't mean to plug your plug, but mindfulness is a real, real blessing because there are tough times. And being able to, I was going to use the word retreat, perhaps that's not the best verb to use; but anyway, to find a place to go to when you're in difficulty which you can emerge from tranquil and at ease with the world, having cured nothing other than maybe anxiety or stress, which is important in its own right, I'd highly recommend that.
Geoff Allix (36:29):
With that, thank you very much for joining us, Nigel Bartram.
Nigel Bartram (36:34):
A great, great pleasure. And do buy the book. And it comes complete with a testimonial from George Jelinek. Can I just read out what he says?
Geoff Allix (36:43):
Absolutely. Yeah.
Nigel Bartram (36:45):
Because he's got a bit of a teaser in there. "There are three things I like to say about Nigel's book. First, in medicine, we now understand that laughter is good medicine. This book is decidedly good for you. Secondly, all proceeds go to worthy MS charities. Win-win. Third, now, what was it, that third thing? I need to take Nigel's sage advice and stop nominating how many points I'm about to make, don't I?" In order to unpack and understand that last comment of George's, you'll need to buy the book and read the preface.
Geoff Allix (37:27):
Okay. With that, thank you very much. And I would encourage everyone, search out the book on Amazon. Actually, I should say that you can do this thing called Smile at Amazon and you can nominate a charity. So not only does the money go to charity from the book, but actually everything that you buy from Amazon, you can nominate a charity, and OMS is one of the charities you can nominate, and a small amount of any shopping at Amazon would actually go to charity.
Nigel Bartram (37:55):
So it's a win-win-win-win.
Geoff Allix (37:55):
Thank you for listening to this episode of Living Well with MS Coffee Break. Please check out this episode's show notes at www.overcomingms.org/podcast. You'll find all sorts of useful links and bonus information there. Do you have questions about this episode, or do you or someone you know want to be featured in a future Coffee Break episode? Then email us at podcast@overcomingms.org. We'd love to hear from you. You can also subscribe to the show on your favorite podcast platform so you never miss an episode. Living Well with MS Coffee Break is kindly supported by a grant from the Happy Charitable Trust. If you'd like to support the Overcoming MS charity and help keep our podcast advertising free, you can donate online at www.overcomingms.org/donate.
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The Living Well with MS family of podcasts is for private, non-commercial use, and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional. Our guests are carefully selected, but all opinions they express are solely their own and do not necessarily reflect the views or opinions of the Overcoming MS charity, its affiliates, or staff.
