The need for ‘MS Trust in us’ is so compelling

Nigel Bartram, diagnosed with primary progressive MS (PPMS) in 2009, tells us why despite living in France, he is supporting the 'MS Trust...in us' campaign.

I’m Nigel Bartram and was diagnosed with Primary Progressive MS, 11 years ago. I’d been experiencing symptoms for 6 years previously, from when I was 50 (a very unwelcome present to mark my half century!). I’m all but electric scooter bound, only being able to walk short distances around the house, with a frame and then only backwards. As I’ll explain in a second, thanks to Covid, I can’t lift my feet sufficiently to ‘walk’ frontwards. I self-catheterise and have 6-monthly Botox injections to combat urinary incontinence and have many of the other common symptoms which go with MS. Happily, at this stage I’m still autonomous in terms of driving (with hand controls) eating, washing and dressing, except when stricken by a UTI.

I have practiced Mindfulness for a good few years and find it indispensable for warding off stress, any feelings of hopelessness and thinking about what the future may hold.

I work hard at online cognitive training exercises, developed by neuroscientists and psychologists to fight brain atrophy (the authors rightly say exercising the brain is every bit as important as physical exercise). For the latter I’m fortunate enough to have a Thira exercise bike at home.   

Although, as I’ll explain in a moment,  Covid has definitely snagged my life, I thank my lucky stars I’m much better placed than many. First and foremost I have my devoted wife, just as well given we live in France and the nearest family are some 7 hours away. Although physically fit, she is classified as vulnerable in terms of Covid, due to a health condition. Like the UK, supermarket deliveries were like gold dust for the first months. Fortunately, when my wife ventures out to the shops in the early morning pensioner and disabled priority slots, she encounters orderly queues, with many sporting masks from very early on. What went pear shaped with Covid was my thrice weekly hospital based physio sessions. I spent 6 weeks in intensive care in Summer 2019 (for a non-MS affliction) and the following 4 months in bed at home. Before that I could walk 20 metres (forwards!) inside and outdoors with the aid of canes and a FES stimulator. The physio programme was to rebuild the wasted muscles as I could no longer stand. The restoration of my walking ability was at around 80% when the clinic closed. I’m very risk averse, lest I end up back in intensive care, especially as several studies show now us with advanced MS fare badly when it comes to Covid. So, although the physio service has reopened, I’ve given it a wide berth, preferring to put up with shuffling along backwards, indoors only, till the air Covid clears, as it were. Fear of Covid also stopped me going for my scheduled 6 month Botox bladder blasting as the hospital was a major Covid, Paris treatment centre. But after months and many a night-time accident and a UTI infection and when hospital  occupancy rates had fallen, I felt the misery/risk balance argued for resuming the treatment.                   

In all fairness, Lockdown did have some positives, notably the super vibrant Spring, birdsong like I’ve never heard before; the positive effects were made all the richer by Mindfulness. We are so fortunate in having a lovely garden and a forest 30 metres away. I really feel for those without easy access to the beauty and wonders of nature.

It may seem a bit strange that I’m supporting the 'MS Trust in us campaign', given I don’t live in the UK. But knowing what the complete absence in France of anything like MS Nurses and Advanced MS Champions (and indeed the MS Trust,) means for me, I’m the strongest possible advocate. Here, aside from consulting a neurologist (the current waiting time for mine is 6 months,) the only other specialist MS help on offer is 1 nurse who covers a population of some 6 million and she can only be contacted by email! When I read accounts of how MS Nurses and Advanced MS Champions have done so much to improve the lives of MS'ers, it’s a no brainer to want many, many more of those with MS who are in need to get what they sorely require. Given that I plan to spend a lot more time in the UK and possibly move back, the selfish side of me wants to be able to benefit!