I have designed this page to give people an insight into my life, and to enable them to gain a real understanding of how someone like me, with Locked In Syndrome, lives a life, and how I cope with both the daily and the long-term challenges I face and will face. This page may not have every detail of the past 10 years, but my book will include everything in detail.
I have been working on the development of the site for nearly a year and six months ago I started to set up a charity to provide support for others with Locked In Syndrome. The Locked In Trust is now a registered charity and the website for this will be released shortly.
Read on to discover more about me, my life and the charity I have founded.
On 31st October 2011, at the age of 16, I was a fit and active teenager. I was at home with my family in West Alvington near Kingsbridge, Devon. I was a pupil at the Kingsbridge Community College and also enjoyed earning some extra cash with a part time job in a local pizza takeaway. I adored football and was enjoying my first season in the men's team at Loddiswell AFC. Tragically for me and my family I was struck down, completely out of the blue, by a massive stroke which left me with a condition known as "Locked in Syndrome".
Locked in syndrome is a condition in which I have normal cognitive brain function but cannot move or communicate verbally due to paralysis of nearly all voluntary muscles in the body, except for eye movements and blinking. So, I can process speech and language and have totally unaffected thought processes but I am unable to move. Whilst on life support I was unable to eat, drink, or move my jaw. I lost most of my senses. Even my eyes were paralysed.
On 6th December 2011, I was transferred to the Royal Hospital for Rheumatic Diseases in Bath. I had a tracheostomy inserted into my neck where they pumped oxygen into me, a PEG tube for food supplements and a general catheter for urine. After some time I regained the ability to breathe natural oxygen. One night my tracheostomy tube accidentally came out and the hole in my neck healed up overnight so the nurses couldn't put it back in the morning. I started to regain the ability to taste and smell. I sent my Step-father, Jezz, out to get me a load of different things from the shops to test. Fortunately, I could smell all these different things that he had brought back. As for taste, I didn't know because I couldn't physically eat anything at first. The only thing I was allowed to consume orally was a teaspoon of ice chips because they would melt if they went into my lungs. Then my eye control returned. I had realised this when having my teeth brushed one night. I had full eye movement - I could look up at the ceiling and found my eyes were able to look at wider angles than before. I retrained my neck to support my head too. Everyday, with the physiotherapists, I would practice holding my head up unaided. On day 1 I started doing it for 10 seconds. Then the next day 30 seconds. On day 7, 10mins. By day 20, I was up to an hour. Over a relatively short period of time I could sit up. I did start to manage eating while at the hospital. However, my swallow reflex was still not as strong as it should have been. So, following a video fluoroscopy (x-ray) of me swallowing, it was decided that, to be safe, I shouldn’t eat just yet.
Video fluoroscopy, X-ray for fluid going down into lungs. (tasted revolting!)
16th October 2012, I came back to a Plymouth care home, Waters Park, where I learnt to eat and drink again. The biggest burden of my life was my suprapubic catheter. A tube attatched through my pubic area that funnelled out my urine. It was so frustrating, especially when I was moving around more, it would pull, twist and turn. It was bloody hideous! It felt like it was a part of my anatomy. If someone pulled it, it would feel like someone was pulling a limb. Mind you, it was much better than the original sort I had back along. They're bloody painful! Here is a video of me filmed at this time by my cousin Jack Rowley for his school project. https://www.youtube.com/watch?v=8FZylhk94w. On 27th July 2013, I went to London to see Les Misérables. During the interval, I noticed they were selling those little tubs of Haagen-Dazs ice cream. I thought "you know what, I’m going to have one”. Jezz reluctantly gave it to me. Later that night, I went to a restaurant with my parents. I picked what they were having so I could just taste different bits. I remember trying some prawns, lasagne and especially the curry. Having curry after not eating for around two years made it taste even spicier! On the drive back from London I had a McFlurry, after becoming confident that the whole weekend had been okay. It was from this point that I declared to myself that I would never go back to ice chips!!
Ice chips (YUM!)
10th March 2015, An amazing couple called Neil and Amanda Tregarthen came to see me in Waters park, Plymouth and immediately committed to helping me get back into the community. They got me a big beautiful house in Kingsbridge which allowed me to have my own tenancy, supporting my independence. A wonderful lady called Simone Lloyd managed the house conversion with generous help from a number of Kingsbridge businesses and a grant from the local council. They also set up a Trust for me so I could get a whole host of thing's that helped and supported me, for example the FES bike what stimulates my muscles to pedal independently, my iGaze, which is a computer enabled so that I can control the cursor with my eyes (how I control this website), Private hospital appointments, but of course, over time, the funds started to decline and thus the trustee's had to be tougher over what requests they could accept. NeiI and Amanda had heard my story through Geoffrey Lloyd, who was a member at the football club I had just joined prior to my stroke. I have been here in my own home now for 5 years.
My house being adapted by the community
A fundraiser at Plymouth Life Centre
Plymouth HQ in Exeter
The Brook Inn
Hope for Howard' event in Kingsbridge
Loddiswell AFC wearing their new 'Hope for Howard' sponsored kits
Community of Kingsbridge providing me with a great van.
I travelled to Ireland in 2016 for my 21st birthday. This holiday was amazing but my biggest memory of going to Ireland was rushing to hospital because my catheter was tugged so much that it felt like it was coming out. A few months later in 2016 my suprapubic was removed! I was so delighted! No more crap happening like it being pulled or crystallization in the tube ever again! Pissing out of my penis again was bliss! No more more tubes, hallelujah! In 2017 I went on a skiing outing and in August 2018 I went up to Brighton to celebrate my friend from school's wedding. More information about these adventures will be in my book. It encouraged me to start looking at different ways to carve out a career for myself. I was able to take advantage of new technologies and equipment that would enable me to look to the future with hope.
Becky and Georgina's Wedding in Brighton
Happy 21st Birthday to me! Dublin, Ireland
Skiing in the Snowdome, Tamworth
Skiing in the Snowdome, Tamworth
In January 2019 I made the choice to switch care providers because I wanted to find a care provider that'd help me manage my own care package and make my own decisions. Unfortunately during this transition the financial providers of my support saw this as an opportunity to reduce my Individual Support Fund. This made making trips out and holidays unaffordable in spite of them being essential for my mental well-being. I don't know why? I haven't changed, my needs hadn't changed. I was fuming. Somehow now, I had to support these things myself! No more trips for this guy, well unless I use my money, my disability benefits! I felt like I was being banned from the world! Something had to happen! I don't even want to imagine what life would be like if I didn't have the amazing support from the community of Kingsbridge and the Trust!
Soon after I was lying in bed thinking, 'I need to do something quick! My trust monies going down, my support isn't right, what am I going to do!? I'm in better health now than I have been for some considerable time and want a good environment to raise a family, so something has got to happen now!' Suddenly a fantastic idea popped into my head... I need to increase people's awareness of the challenges that people like me, suffering with Locked in Syndrome, face on a daily basis. It made me think about the lack of support that there is out there. So at least if I die, I would know that I had done something positive for other people who may have similar dreams....and then, the Locked-In-Trust was born.
I kept thinking when I felt upset and alone how other people handled it because always in the back of my mind I knew I had it better than others like me all over the world. Which led me to start the Locked-in Trust - To help people with locked-in syndrome live their best possible life!
For the time being, we can offer:
1. Providing greater access to life, for example providing holidays and outings. Our long term aim is to allow anyone with Locked-in syndrome to live a life like anyone else would.
2. Providing specialist equipment for muscle gain and fitness.
3. Providing updates on the latest equipment provided by the NHS to people with Locked in syndrome.
4. Verbal support - We provide information and advice to support people with Locked In Syndrome, their family members, carers and relevant professionals.
The charity aims to enable people with locked in syndrome to live their best possible lives. This will be achieved by providing a supply of the most up to date assistive technology, providing greater access to life and communication equipment. In addition, the charity aims to source and develop appropriate holiday packages, enabling individuals and their support teams to have a well-deserved respite period and valuable change of scenery. I believes that people with locked-in syndrome should have access to the equipment and support they need to enable them to live a full life without any financial worries, including getting out and about regularly and having trips away. There are currently between 300 and 500 people in the United Kingdom with locked-in syndrome. Whilst this number may seem small, it is important to remember that each one of these people is part of a family unit, whether they are a parent, child, father, mother, brother, sister or cousin each and every one of them needs more support than they are currently getting. By purchasing and providing a range of up to date technology and communication equipment, the Locked-In Trust will assist these individuals to remain an effective and fully communicative part of that family. My long-term goal for the charity is to be able to support people with locked-in syndrome to live life in the same way as people without the condition. Whilst he realises this may not be easily achieved in his lifetime, he will give his all to accomplish as much as he possibly can to make everything possible for the next locked-in generation.
As well as helping people like me, I feel that my stories will help people recognise that they are not alone, that we can all relate to others thoughts and feelings, share our experiences and give each other strength and support. Beneath the shell of "Locked in Syndrome" are people screaming out to be heard and listened too. It's time for people to hear what life is like for all disabled people, let alone Locked in.
I'd like to thank EVERYONE who's helped me along the way and I will go into much greater depth in my book. I haven't forgotten you. As there is so much more than this I'd like to share with everyone, When ultimately my book is published it will be called "Hope, Love, Glory" wording which I have tattoo'd in Elvish on my arm. I initially wanted to release my book a few years after my stroke, but figured people would like to hear my full life story when I came to writing it. For the time being 'Hope, Love, Glory' is for my eyes only, as my story has just begun!
On the 25th of March 2021 I began my managerial career by starting
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