People's Stories

Fred 

Fred had a stroke in 2018 and found his recovery plateaued without a long term exercise programme. LEGS has helped to motivate him and provides a sense of comradely support. 

Ocean

I was a social worker and managed a day centre for older people. I also worked in youth and community work and residential child care, so I value the importance of social relationships.

I retired in August 2017 and had a stroke in March 2018.

 

When I was recovering in my hospital bed, I thought to myself “well I’m still sucking air”! The physios in hospital rehab were great with me and helped me to start walking again. I learnt then that I could make progress. Then I appeared to hit a plateau and my recovery appeared to stagnate but I realised I was finding it easier to do tasks I had previously struggled with. This has remained a pattern during my recovery.

 

On my discharge from hospital I required a wheelchair. Again, the community based physios were great. As I learnt about physiotherapy, I realised the physios didn’t really have time in a 30-minute appointment to teach me how to do the exercises properly and safely. I have since learnt how much concentration is required, especially after a stroke, to remember the finer points of each exercise.

 

I tried to do these exercises, but I struggled at times to do them on my own and I had a number of falls during this time, which were a setback. I slowly learnt not to be too ambitious, and be more cautious in what I was doing. My balance was affected more than I fully appreciated. I found this frustrating because I used to walk and swim 5-6 times a week and I was used to achieving the challenges I set myself. 

I joined a local exercise class run by Chest, Heart and Stroke (a charity providing support for people currently at risk or living with chest, heart and stroke conditions). This group physio and social contact was very good for my physical and mental health. I then got botox treatment in my legs and this really helped my mobility. This dramatic improvement really helped me achieve greater independence and lifted my mood as I could achieve my targets.

As my therapy was ending, my physio suggested I refer myself to LEGS. This was a real game changer for me. During my initial assessment I knew the physio was really clued into my needs. This was very important for me and I felt really confident joining their classes, because to me they knew what they were doing. When I started the classes I became aware the physios were gearing my exercises to my level of need, despite being in a mixed ability group. This was very important because the physios continued to offer reassurance to myself and other participants only to do what we felt comfortable with.

I really enjoy meeting all the people in my LEGS groups. We come from a wide range of cultural and life experience backgrounds and I learn from them different ways of coping post-stroke. I love meeting the different personalities, seeing people come out of themselves and sharing a joke, and our ability to laugh at ourselves.

So, what is so good about LEGS? Well, I think it is the regular exercises we do, the sense of belonging to this group of people who are determined not to let a stroke stop them living their lives, a sense of fun during the sessions. The Neuro Café is an important part of my week now. They are a group of highly motivated people. 

Being in a group physio session is a great incentive/motivator to keep doing the classes. It is hard to do the exercises on your own so the regular appointments help. I also like linking the exercises to daily living functional tasks like polishing and doing the dishes! The teaching input is also very helpful to develop coping mechanisms post stroke and during Covid19 Lockdown

Bernie 

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.

Holding Hands

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.

Fatima

Fatima's husband, Bernie, had a stroke in 2020. She finds the support of LEGS invaluable, not only for the benefits to Bernie's recovery from stroke, but as a means of connection to other carers.

Support Groups

Stroke - I now know that it does not discriminate against race, age or gender. When it strikes, it is an unexpectedly life changing for the survivor and the carer. It turns your way of life upside down.

 

Prior to 18th April 2020, my husband and I were merrily making plans for our future, both looking forward to the next stage of our life – retirement. Although, the Covid 19 pandemic was raging around the world, we were optimistic it would soon sort itself out. As long as, we obeyed the health professional and government guidelines we would be OK, plus August was some time away, we may still be able to have our dream trip. Flights and the accommodations were booked for a big adventure, a 6-week driving holiday through various parts of the USA and eventually ending our trip in Canada to celebrate our 10th wedding anniversary at Tofino on Vancouver Island where we were married. 

 

However, on Saturday morning 18th April 2020, unknown to me as of this day, life was never going to be the same again and a year on there is no sign of my old life. Stroke has changed everything. Robbed us of our dreams. We are now doing a waiting game, allowing time to heal the body and mind and hoping that the person I married may come back to me. 

 

The event of that morning will forever be imprinted in my memory. My loving and highly intelligent husband of almost 10 years came downstairs, looking dazed and very ashen, saying he needed help with his shoelaces. Glancing at his hand, I noticed the left-hand side was floppy by his side and soon after there were other classic symptoms playing out in front of me. Such as, slurred speech, droopy face. I’ve seen the TV adverts and so I knew what I was looking at. I sought emergency help. I was told due to Covid, there might be a delay.

I remember pleading with the person at the other end of the telephone line to come quickly and I remember saying to the operator that the ad on TV recommends quick action when a stroke happens, time was of an essence. The quicker you act, the more of the person is saved. Of course, she knew that.

 

The ambulance came within 15 minutes, but it felt like an age. They carried out their assessment and then the time came for my husband to be taken to the hospital and the biggest shock of my life was yet to come. I was not allowed to accompany him or meet him at the hospital, due to Covid. I was left alone at home, pacing the floor, all alone. It was the darkest time of my life. No one was allowed to come to be with me due to the lockdown. I was left alone, wondering if he was going to make it. I sat looking at the phone, willing it to ring to let me know he was ok. That call didn’t come till the next day about 5.30am. I was told he was stable. What does that mean? I asked the nurse in charge. A doctor will be calling to explain further after their rounds. Again, that call didn’t happen till 10 pm. I spoke to a weary doctor who apologised for the delay in calling me and assured me my husband will be ok. He explained some of the medical interventions he underwent but I didn’t understand the implications of them and what the stroke affect may have left him with. But I do remember clinging to those words that he is ok. I thanked him and ended the call.

 

On day 3, I was asked by the OT to send her photos of the layout of our home as they have to prepare him for discharge due to the risk of catching Covid whilst he is in hospital. They had to assess and make plans of how he will function when he is at home due to his mobility and balance issues. The OT explained that Bernie would need help with personal care i.e. washing, dressing and so on. She also stated the stroke has affected his cognitive function, especially, there were issues with his executive thinking skills and at the time that meant nothing to me.  But as time went on it became very obvious what this entailed. He has difficulty in planning, organising and short-term memory recall. This has huge impact on our day to day life. This made worse by his lack of insight in his disability and thus causes so much frustration and strain in our relationship.

 

The home coming:  I was told to make arrangement to pick my husband and I did this, with the help of our friend. He was brought out to the outside steps on a wheelchair. He looked like my husband but different, very frail and very unsteady on his feet. His speech was muffled but could be understood. The hospital discharge pack had much information about his meds and the procedures he went through as well as a number to the Early Support Team within our local authority. Their role would be to offer practical help and therapy. Yes, that would be fine. But in reality, the local authority support team was understaffed and very afraid of catching Covid. There was no hands-on support or offer of equipment for physiotherapy for the risk of contaminations. They came dressed like astronauts, full PPE. They made their assessment, identified some of his need and came back with computer printout of various facts on how to help him with his speech and exercises. 

 

After, week 4 I was physically and mentally drained. I became very emotional and started crying at a drop of a hat and that was never me. The OT noticed the emotional strain taking hold on me and she assigned us an assistant to do a 20 mins session three times a week. That was fine but not good enough.

 

After six weeks, they announced they were withdrawing their support for we had had our quota and more people in Enfield have had strokes needing their services. I was distraught at the prospect of no professional help. No one to turn to. Even our GP is no longer accessible. When Bernie was discharged from The National, he was sent home with a discharge package, stating the importance of blood pressure monitoring by our GP.  I rang to arrange for this to happen, I was told to buy a monitor and do it myself!

 

Life was bleak during this period and relying on emotional support from family and friends was not possible and I also learnt that some people are generally uncomfortable to be around sick people. The stroke has changed Bernie so much not just physically but mentally and people just can’t deal with this. So, they stay away and continue to do so apart from one set of close friends, man and wife.

 

Two months after the stoke, I was offered a lifeline, but I didn’t recognise it as that then. I was invited to join the NROL Carers’ café. I was initially very reluctant to join the group as I felt it was another thing to add on to my to do list. Never in a million years did I think or believe that it was an opportunity to do something for ‘Fatima’. I remember that first session when I was asked ‘How are you?’ my response was to break down in floods of tears. I couldn’t speak. I was an emotional wreck. I was not used to anyone asking how I was. If received telephone calls at home, it was always to ask how Bernie was getting on, but none ever asked about me. But now the carers café facilitator was asking, and she was taking an interest in me as a person. For the time it was about me rather than my stroke survivor husband. I was at my lowest emotionally and physically and overwhelmed by worries of caring for Bernie after a stroke. 

 

The Carers’ Café was facilitated by the most sensitive and caring professionals and most importantly they provided medical advice  on how to care for ourselves as well as our spouses/ family member  who suffered  brain injury. The forum was a place where I was encouraged to open up to the group about the challenges and, I was among other participants who were living my life, looking after a spouse, mother, or a father. It felt real, valid and game me a sense of belonging. I was part of a group who were going through the same or similar experiences due to our loved ones having had a stroke.

 

When I think back, I really believe that carers café offered me a lifeline and without it I shudder to think what would have happened to me and my husband, especially, in time of Covid.  If it was not for NROL our isolation and anxiety would have been immense. 

 

Caring for a stroke survivor is endless, thankless and bewildering. It is essential to have the right intervention at the right time in order that the stroke survivor recovers to his or her full potential without damaging the carer in this process.

 

When the NROL programme including the Carers Café came to an end at the end of the summer, due to the funding constraints, I agreed with the other participants that we should keep going on our own and with Bernie’s help to show me how Zoom worked, we have continued the Carers Café on a weekly basis and it's still going strong. The group have shown total commitment throughout and, if I may boldly claim, we also became good virtual friends. Some of our partners continue a similar forum with LEGS every week. Like NROL, LEGS recognises the need for continued peer support brought on by the challenges of being or caring for a stroke survivor.