My stroke story – I have aphasia 

Dictated by Muhammed Joel Fraser  


It was a regular Thursday morning. I went to town with my wife for breakfast after the  school run, and the phone shop to get phone contracts for our daughters. I felt eager  to do this, in case they require one in an emergency. I also planned that one day  Amirah could walk to school by herself. 


In the evening, my wife Janine was getting ready for a night shift, so I was eager to  finish my DIY of the kitchenette. I went to sleep without any symptoms. Janine text  me from work ‘goodnight, see you tomorrow’ and I text back ‘Insha’Allah’ meaning (If  God wills) in Arabic. Little did I know that would be the last time I am able to text,  read fluently or speak properly. 


Coincidentally, six days before my stroke I was at a friend's house with Janine and  my daughters. We were discussing tragedies and I was saying how I would hate to  have locked in syndrome! Now I am experiencing it through brocas aphasia. Brocas  Aphasia is non-fluent, in which the output of spontaneous speech is markedly  diminished and there is a loss of normal grammatical structure. I also told my  secretary Janet several times around a month before my stroke, that I feel like  something big is about to happen, but I didn't know what. Perhaps these were signs  from God for what I was about to experience! 


On Friday morning on September 9th 2022, I woke up for work. I cancelled my alarm,  as I was feeling very tired. I was trying to get to the shower, but didn't realise my  hand wasn't working, and tried to grab onto the towel rail, which I ripped off the wall  trying to steady myself. The next thing I remember, I was on the floor of our en suite  bathroom and couldn't get up. I somehow managed to clamber to the bed. At the time I didn't know it, but my eldest daughter Amirah had seen me and thought I was  playing ‘zombies’ with her, as I sometimes do joke around with the kids. When my  youngest daughter Nazrah saw me lying on the floor, and not responding, she  screamed for Grandma, who ran up the stairs and then ran to get her mobile phone,  so she could phone the ambulance. By the time my mother in law, Daisy came back  to the bedroom, I was sitting on the bed. She quickly told me to lie down, as she was  worried I would fall and have a head injury. I was able to lie down, but I was unaware  of all of this. Daisy told the ambulance to “Please come quickly, he's a nurse who is  late for work”, and that I am either having a heart attack or a stroke, because she  noticed I wasn't moving my right arm and arching my neck as though I couldn't  breathe. I couldn’t speak, but only move my eyes around. Daisy also called my  brother Audley to come quickly, to go into the ambulance with me, whilst she stayed  at home with my daughters. The crew brought me downstairs on a seat from the top  floor of our townhouse to the ambulance. I do not remember going into the  ambulance but I have been told I got up and climbed inside myself. I arrived at the  hospital, where I had emergency surgery: partial thrombolysis (a ‘clot busting’  medicine) and a thrombectomy (mechanical clot retrieval) but evidently have no  recollection of this.  


Janine came home from her night shift. As she was approaching near home she  began to get calls from Audley and Janet; Joel's secretary. When she reached home, she saw a bag left outside the front door and thought my car had broken down, which  is why she was getting a call from my secretary, to find out why I am late for work,  but it was an emergency bag from the ambulance. As she pulled up outside our home, Daisy opened the door and said “Have you spoken to Audley?” Janine said  “No”, Daisy said “Oh you haven't heard then? Joel collapsed and has gone to  hospital with Audley in the ambulance”. Janine was worried, but had no idea it could  be a stroke.


Daisy walked our daughters to school, whilst Janine waited for her to go with her to  the ED. Janine waited in the ED for a few hours before she was told I had had a  stroke! She was in shock, crying and scared of the outcome, and began phoning  family, work and close friends to inform them of the shocking news! I didn't realise I  was in a very bad state and that Janine would have to make a very difficult decision  to save my life with potential brain damage, or to let me go. My consultant explained  to Janine the outcomes if I were to require a decompressive hemicraniectomy (to  treat elevated intracranial pressure), I could be severely disabled. He gave her a  patient decision aid. Janine knew my wishes, that I would not want to survive as a  mentally impaired person who is unable to live independently. Fortunately, I didn’t  require this surgery. I commenced medications: Clopidrogrel (to prevent further blood  clots) and Atorvastatin (to lower my cholesterol). 


After my operation, I remember I needed the toilet, and tried to get out of bed to go.  But because I couldn’t speak, the staff didn’t know what I was doing. Janine and my  mother; Melva were there and tried to keep me on the bed as they didn't want me to fall over, straight after coming round from recovery. I recognised my mum, but I didn't  know who Janine was at the time. A health care assistant (HCA), held a urinal bottle  out for me to use but I didn't see it, and I was determined to get up for the toilet, and  not use a bottle in the bed, being a nurse myself. They thought I was confused,  agitated and in urinary retention, so sedated me to have a catheter inserted which I  was trying to prevent. Having no speech is a scary ordeal, because your needs are  not heard or met and there is miscommunication. 


About 4 days later after a lot of sleeping, I woke up. I hadn’t realised how much time  had passed, it felt like a minute. I recognised my friend Mins and my wife Janine. The  speech and language therapist was asking if I was in pain, to which I nodded ‘No’. 

She tested me on some words to check my understanding, such as “Point to the  ceiling, point to the floor, point to the window, point to the door”. Which I was able to  carry out and daily routines, e.g. “brush your teeth”, which I could action. Although I knew everything in my head, I couldn't bring it out in speech. I couldn't say my name  or family member names. My daughters enjoyed getting involved, and made me  flash cards with simple words and pictures for ‘toilet’, ‘shower’, ‘hungry’, ‘thirsty’, etc. I  could use these to show what I wanted. I was worried about not being able to say “I  need the toilet”, and my wife practised saying “I-need-the-toilet” slowly, with me. I  was dyslexic before the stroke, so you can imagine what difficulties I now face. It's  hard work practising my ABC. I spoke perfect English with a good telephone  manner,but now it's all gone. 


I don't remember this, but Janine tells me I had to have a swallow test to see if I  could manage drinking water yet, to begin with I dribbled and coughed a lot so  couldn't. My daughters came to visit me, Nazrah had a kiwi in her hand and I am told  I went to grab it. She said "No Daddy, you’re not allowed yet!". But I couldn't eat yet  as I didn't pass the swallow test. When I felt thirsty and hungry, the call bell was  useless because I couldn’t speak. I don't recall it, but Janine, Audley and my mother  would feed me pureed food to begin with, which developed to mashed food and  finally normal food. I was worried about getting pain and not being able to tell  anyone. Thankfully I didn't get any pain. I was worried about my diet and receiving  halal food, which the staff kept getting confused with in the beginning and Janine had  to tell them. She also put a halal sign above my bed. One of the domestic staff, kept  asking me so many questions. He didn't read my sign on the door that I was non  verbal, and to use yes and no questions. He made me a black tea with sugar instead  of a white coffee that I wanted, and he advised me to put the cup on the table. But I  would tidy up my table and leave my cup on the windowsill. He didn't like this as he  had to walk a bit further, but I did it and continued to do it anyway! His boss was so worried about me, as she witnessed his behaviour. So she took over, and told him  he was not right. The nurses and the HCA’s never had time to spend with me. I was  only seen at drug rounds and observation monitoring twice a day. They didn't change  my bed. Janine and I changed it, when she came to visit daily. I would ask for a  blanket as I feel the cold, but they didn't understand me. They would give me a very  quick wash without speaking to me and not clean me properly, so I was glad when I  was able to get up and shower myself. 


My consultant removed the blood clot from my brain. The CT scan of my head  showed an occlusion to my carotid artery which caused the clot. But he didn't  mention that I have brocas aphasia. I researched this myself months later. He told  me I would get back to work and drive eventually, but there was no time frame. My  hand is disabled and I need to learn to communicate again. This is such a hard thing  to accomplish. I thought brocas aphasia is hard, but it feels harder than a child  learning to read for the first time, because of memory and pronunciation. The brain  cells have gone and need pathways rebuilt. My mother was told that I would be  paralysed on my right side. But thankfully it has resolved. Initially I worried about  Janine returning to work, and was going to set up an alarm pendant system, to alert  the services in an emergency. But my confidence has grown since, as I can now say  my name, address and postcode. 


4 weeks later, I moved to a rehabilitation centre, Snowdon unit at the Western  Community Hospital because F8 at Southampton Hospital was closed due to a covid  outbreak. I found Snowdon was better equipped for my needs, as I received more  speech and language therapy, physiotherapy, and occupational therapy here. Janine  was so strong for me and our daughters and had to finish our mortgage completion,  inform the NMC (as my revalidation for nursing was due), cancel my car insurance, apply for my personal independence payment and apply for a secondary school  application for our daughter. She was tearful and under a lot of stress but survived.  Janine was allowed to visit me all day, everyday which I was ecstatic about. I spent 2  weeks at Snowdon. I had a few tears on the unit, and the HCA was remarkable and  comforted me. The cleaners showed compassion and said that I would get over my  stroke one way or another. I couldn't speak but I showed them my gratitude with gifts  when I left. 2022, I had to demonstrate I could walk to th Before I was discharged on October 25 the shop and verbalise ‘I want some bread’. I didn’t do so well. I said “bread, bread,  bread” to the shop assistant, but I couldn’t ask “Where is the bread please”? or say  “Thank you” which felt awkward. Janine came for my discharge meeting and my medications were dispensed. When I got in the car to go home, it felt like a dream  and still feels like a dream to this day. Janine agrees it feels like a dream as it is  surreal and hard to come to terms with. It continues to be challenging every day. 


I communicate with my daughters through praise and encouragement and tell them  off occasionally to get my point across. It is difficult as my voice and manner has changed following stroke so they and I sometimes get tearful, and need explaining to. I need to explain to them when I am having a joke as they cannot tell anymore, and it  feels lonely. Instead of texting I sometimes use pictures, e.g. bitmoji. I use videos  because it's easier to describe my feelings. I think that I sound stupid because my  speech confuses people, its slow and I can't read simple words like 'I', 'the', 'and' and  get ‘he’ and ‘she’, ‘him’ and ‘her’ confused. I don't feel like I can buy something in the  shop or go to a café, because I cant ask for things, as I sometimes don't know what it  is. I can describe it sometimes but may forget the word. I feel my friends have  deserted and deleted me, as they cannot communicate with me as well as they  could. A few of them have kept in touch. My work colleagues are the best, being nurses they are more understanding to what I am going through. A very nice old  school friend has helped me a lot, by visiting me and spending time with me when I  didn't ask him to. So I am grateful to him. 


My wife produced lots of sentence sheets that I practise with her daily, including a  poem and story books. My ‘constant therapy’ app helps with my speech. I watch  therapy exercises online and I practise them for my right hand, as it is weak and has lost its grip to function with daily tasks. I have a Neofect glove that I purchased from  Baffin Technology online. It is a high-tech rehab device that measures movements of  the forearm, wrist, and digits with accelerometer and bending sensors. It involves  playing games by using my hand and wrist. I find it a game changer and noticed  improvement within the first two weeks. I am able to cut fruit and hold a glass, which I  was very excited about. 


Unfortunately 4 weeks after discharge I developed a prolonged urine infection  (pseudomonas) lasting 6 weeks. The symptoms were so bad that I asked Janine to  call an ambulance and 111. I had jaw ache, toothache, back ache, stomach ache,  head ache, and was shivery with night sweats. I felt nobody took me seriously, because I can't speak for myself. The advanced nurse practitioner from my GP  surgery came to do routine bloods and a urine sample. The sample came back with  infection and I waited 2 days for the antibiotics to be dispensed. For 4 days, I was  asleep most of the time and I was confused. I cancelled some of my community  rehab sessions, which put back my recovery with my speech and my hand. My hand  became stiff. Before my urine infection I was recovering well, after my urine infection  it was like taking 2 steps forward, 4 steps backwards. It was disheartening to have  come so far, as I am still struggling to this day with self confidence and anxiety. I  cannot go to shops, restaurants or cafes, but I was making good progress with this  before my urine infection. A month later, I had a CT and cystoscopy to investigate my bladder. I felt nobody believed that I usually show blood in my urine, every time it is  dipped. My previous notes say so, but it was not checked. So I had to have a repeat  cystosopy and it was normal. However I ended up with a urine infection due to the  scope agitation. Luckily it was a mild one! 


I returned to the General hospital for a repeat MRI to check my carotid artery was not  blocked. I was very nervous about having an MRI. I had to put a head and neck  brace on and felt very claustrophobic. But I couldn't tell anyone, because I couldn't  remember the word for it. I felt like a prisoner in my own body. Worries and hardships  I kept to myself, because I didn't have the language to express my feelings. I wasn't  depressed but I felt down in the dumps. My wife and daughters helped me through it.  I manage to have fun with my daughters when I can, through joking, laughter and  play. I have started neuropsychology sessions to build on my confidence, and reduce  and alleviate my anxieties, through cognitive behavioural therapy. I have only had  one session so I hope it works. I will try anything! The stroke caused my right foot to  disconnect with my brain at times, so sometimes it will drag. Particular when I am  tired, like getting up for the loo in the middle of the night. The stroke affected my  facial palsy, the dribbling is reducing with muscle and lip exercises to strengthen it. I  have had a few speech therapists and I will continue with this, to decrease my  aphasia in time. My week is busy, it consists of speech and language therapy and  physiotherapy daily. I go to a communication group, to meet other stroke survivors run by the ‘Stroke Association’. Some of them are worse off than me, and some of  them are more advanced than me, with their speech. Language is a horrible thing to  loose, but I have a second chance in life. It’s as though I’m trapped behind a glass  screen, feelings of anguish and frustration. Not being able to speak or text anyone,  I’ve lost my independence. A huge hurdle in my life. I continue to struggle today, but  have hope that my aphasia will get better and I will reach my best potential. I feel sad  at times for this huge life change. I can't even drive, or take the bus, because I cant remember destinations. I can't count or add money, I read books but my voice is  child like, with slow speech. I cannot go to my friends house for a curry or to a  restaurant with my wife and daughters. I cannot talk to strangers or go on a picnic,  cinema or bowling. I feel trapped in my own body and hope this will disappear one  day. This all feels like a dream and like it's not right. My world is turned upside down.  I was healthy and fit. I am young. I have a normal heart and cholesterol levels. I feel  ‘Why me? This happens to old people not young people’. 


I rely on Janine. She is my voice, my carer and my advocate. She orders and collects  my medications, as I have no clue how to do it. NHS staff and companies will call my  phone, and refuse to speak to Janine without my consent. Even though she tells  them I have aphasia and speech difficulties. Janine runs my healthcare. I feel  vulnerable all the time and don't want Janine to do a night shift again. She is my  safety net. People that see me, wouldn't realise that I've had a stroke. People think  I'm dumb. I wear a lanyard to alert people that I’ve had a stroke, explaining aphasia.  This makes me feel a bit more protected. I have lost my identity and want to rebuild  myself.  


I have dictated this story to Janine, the best way i can with my aphasia, which she  has put together for me. My stroke gives me a sense of hell and harmony, love and  hate, as I am relieved that God has given me the chance for a new beginning. It has  made me reflect upon my life, because of my near death experience. I reflect on  friendships - you know who your true friends are at a time like this. 


I wouldn’t wish this on anyone!