Bernie's Story
Bernie had a stroke in 2020. He and his wife have found in LEGS a long term, sustainable solution and a lifeline of support and friendship.
My stroke journey began at the end of February 2020 when I got up early one Saturday morning to go for a haircut (I like to be at the barber’s before they open at 8am) and felt strangely numb in my left arm and couldn’t do up my shoelaces. When I got to the barber’s it was still shut and I waited about half an hour in vain for someone to arrive before giving up and walking home again, having a strange conversation with the owner of my paper shop on the way.
Only when I got home did I discover my timing was out by two hours – it was still only 7.00am so I had been there at 6am, no 8am! When my wife Fatima got up and I told her what had happened and how I was feeling (my arm was still numb) we decided I should go to the local hospital urgent care centre where, after a couple of quick checks, they redirected me to the nearest A&E department .
A lengthy wait ensued before I was given a chest x-ray, a CT scan and told by the doctors I was probably suffering from what they called “global amnesia” but I should also attend the TIA clinic the following week. More cursory checks took place with the same diagnosis but also a referral for an MRI scan that actually took place in mid March. We then had the onset of national lockdown and I was consigned to working from home for the last two months before I was scheduled to retire as HR Director of a retail property firm at the end of April.
On a Friday in mid April a letter arrived from the hospital that should have gone to my GP (but hadn’t until I took them a copy) saying I had indeed suffered a stroke and needed to be on medication urgently. Before I could get a prescription for the meds the very next morning (another Saturday) I suffered similar symptoms (arguably worse with face dropping and speech slurring) so Fatima, my wife, called 999. The paramedics quickly assessed me as having had a more serious stroke and I was rushed to The National Neurology Hospital in Queen Square London, with Fatima not allowed to accompany me because of Covid. I spent five days in hospital – no visitors – then discharged also due to Covid fears so consigned to home care with my wife, who has been brilliant throughout. The biggest step forward was when The National invited me to join a programme called N-ROL (National rehabilitation online), sponsored by Emilia Clark’s ‘Same You’ charity.
N-ROL was a mixed programme of both cognitive and physical exercise sessions conducted entirely on Zoom that kept me going for about three months through the summer. Initially I could also get some private therapy (principally physio) though my former employer’s BUPA scheme. But it then went into administration resulting in the loss of my retirement settlement and my BUPA membership was cancelled. So when N-ROL ended in September as funding had run out I was staring into the abyss, having to self-fund further physio and neuro-psychology from my savings. Fortunately the lead fitness guru for N-ROL referred myself and other members of his group onto LEGS. This has proved to be a lifeline, not just for the physical exercise classes – I do one or two a week - but also the weekly ‘Neuro Café’ social group. Social interaction is so important for stroke survivors and the Neuro Café has meant regular meetings on zoom for about a dozen participants to supplement a a ‘self-help’ gathering of former N-ROL members which I host, also weekly on Zoom
Most recently, the LEGS team organised an in person get together at a Kensington café which was fantastic for finally meeting face to face members of the LEGS team and others I’d got to know through the Neuro Café. As I said, social interaction is absolutely vital in aiding/supporting stroke recovery alongside the support of a truly caring partner which I have been lucky to enjoy from my wife Fatima, who now has her own story as she has interacted with fellow partners and carers. They have also lived through the impact of stroke which is undoubtedly devastating for everyone affected by it but made bearable by wonderful carers and superb charities and programmes like LEGS, N-ROL and Same You. I have been relatively lucky in that my overall mobility was not as badly affected by the stroke as some but continuing to develop physical capability and fitness is nevertheless very important and the tailored programmes LEGS offers are a great aid and encouragement to achieving this.
During a recent session in the Neuro Café, the discussion was about taking up new interests and knitting or crochet was mentioned. My philosophy in life, especially during these later years, has been to say that if one door shuts another should open. So many doors had been shutting in my life (long distance walking, tennis, skiing) and knitting was one of them. Even hearing the word knitting that evening made me choke with sadness as I gave up knitting when I was diagnosed with my Parkinsonism 2 1/2 years ago and realised I’ve never said goodbye to it properly. The only door I’d opened was dabbing idly on my iPad at Word games, but I longed once more to feel the purposeful pull of the yarn through my fingers and to know that I was making something for someone who would love and appreciate it.
I resolved to re-introduce knitting to my life. This took quite a bit of organisation I can assure you as another thing I seem to have lost is the ability to sequence and organise myself. I had to search out the needles, find a pattern and find some yarn before making a little hat for the newborn son of one of my ex-pupils. It was a great struggle to get it completed as I kept dropping stitches and finding loops of stray wool or even holes appearing out of nowhere! However, I did finish it, wrapped it up and sent it over to the new dad who was absolutely delighted and sent me a photo of his small son wearing it.
Since retirement, knitting had become a central part of my life. My current project would accompany me everywhere and I would whip it out on trains, airports and whenever there was any sort of lull. It was such a pleasure to knit things for my grown-up children and also for grandchildren, and then I discovered the pleasure of sock knitting, and that was something all the family loved as they are all long-distance walkers and particularly enjoyed wearing a pair of granny knitted socks. But the biggest thing I’d been involved in started from spying a tweet in the autumn of 2013 from the producer of a film about a Lincolnshire family in World War I. She was looking for knitters and I thought goodness me this has got my name on it as have done much research World War I and also love knitting. What followed was one of the most absorbing and interesting projects I’d had the privilege and pleasure to be involved with.
Here is a link to the project: https://youtu.be/FAI35q5giJE.
The final event was an exhibition at The National Archive at Kew:
https://centenarystitches.wordpress.com/2016/01/05/centenary-stitches-exhibition-kew/