The work of clinical trial teams, drug developers and other professionals in and around the pharmaceutical field can be enhanced if they hold a better understanding of the patients they are working to help. Pharma giant Novartis recently launched its More to uS campaign with photos by MS patient Hannah Laycock), designed to build awareness of what life with multiple sclerosis (MS) is like, and to celebrate the achievements of people living with MS each day.
Outsourcing-Pharma (OSP) recently spoke with two MS patients about their diagnosis, living with MS in the COVID-19 age, and how they don’t let the disease get in the way of their life’s passions.
Mark Webb, rugby player
OSP: Having trained with a group for the Chicago Half Marathon, I know some amazing athletes, but you might beat them all—could you please tell me about some of the sports/endurance events you enjoy?
MW: Once upon a time I was quite a dedicated rugby player, I’d worked in ski resorts, and while undiagnosed but definitely with MS, I completed three triathlons. Always stumbling on my left foot during the running section.
Fast forward to my 2007 diagnosis and for a while I went into a shell, bBut once I had got the ‘hang’ of MS, I became a thrill-seeker, often tying it into fundraising campaigns.
I’ve flopped out of a plane three times, sailed in a tall ship, been seated ski-ing, and completed a ‘Tough Mudder’. Basically a sack of potatoes being manhandled round the course by 12 amazing friends and volunteers!
But the constant in my life now is wheelchair rugby. There is no way that in my 50s I’d have been playing a contact sport without MS!
OSP: How has the whole COVID-19 lockdown impacted your activity—what sports and workout stuff have you been able to keep up with, and which events have been slowed or put on hold?
MW: Wheelchair rugby is an indoor contact sport so a little while from returning sadly. A whole season of tournaments lost! I’ve missed physio at my local MS Centre too...
We happen to have a large patio, so have tried to stay ‘wheelchair rugby fit.’ And whenever I’m watching telly I use stretch bands.
OSP: Tell me a little bit about the Virathlon virtual event—how did you come up with the idea, activities involved, and how the fundraising for Shift.ms figures in.
MW: I fundraise most years. I realized early on that the Tough Mudder I had penciled in wasn’t happening, so a combination of needing to stay fit, missing wheelchair rugby, and wanting to fundraise, led to my ‘Virathlon’. No idea where that name popped into my head!
My original plan was to wheelchair roll 10km, walk (shuffle) 1km, and bicep curl 10 tonnes - I still have one decent arm. But though I’m not officially shielding, I’m incredibly cautious, so the Virathlon goes on! I have more than doubled my milestones, and so far raised over £4000.
Shift.ms is an amazing upbeat ‘place’ for MSers, and being an online social network it came into its own during the pandemic. I know most charities have struggled with fundraising during the pandemic, so I not only talked up Shift.ms, I always made a point of highlighting the plight of all charities...
OSP: How else has the pandemic affected your life?
MW: I am used to a relatively sheltered life due to fatigue, with the occasional trip out for rugby, family outings or work. So I have coped, boosting my chats on social media and with the Shift.ms community to stay social, and am a fully signed up member of the Zoom generation! I miss hugs most.
OSP: What are you most looking forward to doing once the shutdown restrictions are lifted?
MW: Hugs and dining out, and wheelchair rugby, especially seeing my Bournemouth Lions teammates.
OSP: What else would you like to add?
I’ve been so pleased to be a part of the #MoretouS campaign (www.livinglikeyou.co.uk). I enjoy life so much and want to be as far from ‘pity’ as possible. Life is good, just a little different.
Shana Pezaro, avid gardener
OSP: Please tell me about your gardening—how long have you been pursuing your passion?
SP: I started gardening when I was six years old, when we moved from London to our new house in the country. When we were looking around the new house, I went straight to a little corner plot at the end of the garden and said, “When we move here, this will be my bit of the garden, won’t it, mummy?”and that was it. I've gardened ever since!
OSP: What kinds of flowers (and other plants) do you like to plant?
SP: Well, it changes over the seasons, but I always go for bright intense colors, because MS has affected my eyesight and I can only see bright saturated hue. So in the spring I plant things like daffodils, crocuses, hyacinths, iris and tulips in reds and yellows and blues and white.
Then in late spring there are geraniums, azaleas and rhododendrons plus I put in bedding plants like petunias, lilies, fuscias and begonias. In the summer the sunflowers, crocosmia and dahlias come out. Then in late autumn and winter I have lots of winter flowering cyclamen and winter flowering pansies. So there's colour all year round.
OSP: What’s your typical gardening session like?
SP: My typical gardening session is very messy! I basically garden by moving plants and pots of soil around on my lap and in my scooter basket. There's just mud everywhere - in my hair, over my clothes.
Then at the end I clear it all up, and often one of the neighbors, or my friends will help me sweep up and get it all tidied. Then I leave the Hoover just inside the door, so that as soon as I get inside I can hoover myself and my wheelchair to try and prevent some mud being spread around the house.
But in the winter, I garden in my flat. I have a wet room and the kitchen has a wet room floor, so I just bring pots in and make a huge mess. Gardening is exhausting so I generally only do an hour or two at a time then go and have a sleep for an hour and restock my energy. Then go out and get back on with it.
It's taken a huge amount of adaptation in the way and the style that I garden. I've totally changed from having a garden and flower beds to putting everything in pots and baskets. I garden in displays and use trolleys for height so I can reach the back, and I put foliage at the back the flowers that need deadheading at the front. So it's a completely different way of gardening, but I can do it and it brings me loads of Joy.
OSP: What are some of the ways in which the pandemic has impacted your life—please feel free to talk about things specific to MS, or anything else.
SP: I was in the shielding group for four and a half months, and it was really difficult. It was mentally tough not being able to physically see friends and neighbors. It was really difficult at the start in weeks before I finally got hold PPE for my PAs, my career.
I had to really restrict how much my PAs could physically help me with personal care and food preparation. I didn’t get dressed properly for weeks, I only showered once a week and I ate a lot of ready meals and convenience food rather than fresh, healthy food.
I also had episodes of high anxiety which I haven't really experienced before. My heart would start racing and I’d feel lightheaded and panicky.
It’s still really hard not being able to go to the Sussex MS Centre for exercise classes, and not being able to socialize with my friends in the same way.
OSP: In specific, how has the pandemic caused you to shift your gardening routine?
SP: I don’t actually have a garden, so when I moved here a couple years ago, l chatted to my housing association about doing displays around the communal carpark. The carpark is overlooked by two blocks of flats, an office block and it’s a cut through/shortcut to the high-street.
Because I was in the shielding group, I’d go outside into the carpark at the crack of dawn, literally at 5am when no one was around, and do the gardening. Gardening got me through lockdown. It was really important for my mental health because it forced me to actually go out of the front door, see the outside world and get some air.
And I’d get messages from my neighbors saying how much it meant to them during lock-down to be able to look out the window and see flowers and colors and life. So it felt like it was important, and that I was contributing to the community in my own little way to help make life a little bit bearable during lock-down.
But the whole gardening experience changed - on a basic level I couldn’t go to garden centres. So I was relying on ordering plants online and getting deliveries of basically whatever they had in stock. Then sometimes I put a call out on Facebook to my friends and plants would just turn up outside my door.
Normally I plan displays and my gardening, but it was completely different this year. I had to go with whatever turned up! It’s been it's been an interesting challenge.
OSP: What are you most looking forward to doing once the shutdown restrictions are lifted?
SP: I can't really imagine what life would be like once this is over, but the two things I'm really looking forward to is going back to exercise classes at the Sussex MS centre and going back to the community choir. We've been having fabulous virtual weekly choir rehearsals via Facebook online but it's not really the same.
OSP: What else would you like to add?
SP: It’s funny, because they did the photography for this campaign in January when we had no idea of what was about to happen with COVID-19. Then gardening which had always been massively important to me, became my lifeline to the outside world.
Gardening was my sanity and my refuge though lockdown. And I really knew how important it was, not just to me, but to my whole little community that they could look out of the window and see flowers and color and life in the car park.
