In 2008 Tracey Okines did her usual no-handed cartwheel at the gym, however this time she landed on her head but got up and carried on about her day. Unknown to Tracey she had burst a blood clot in her neck and several days later she had a fit, followed by a stroke and was left in a coma for four weeks.
When Tracey woke from her coma, she discovered that she had had a tracheotomy and was paralysed. It took some time before it was realised that Tracey had Locked In Syndrome: A condition in which a person is aware but cannot move or communicate verbally due to complete paralysis of nearly all voluntary muscles in the body except for vertical eye movements and blinking. Tracey was just 27 and had a young daughter.
Over the next nine years Tracey was moved between a few care homes, underwent various medical treatments and had to make profound adjustments to being unable to move or speak. Tracey had to find new ways of relating to her young daughter, her parents and to her friends and it was her dad who discovered a letter board that Tracey could use to communicate by spelling out what she wanted to say using her eyes and the letter board.
Tracey, who was given just two years to live at the time of her accident, met with top neurological scientist Professor Barbara Wilson and then finally came to Chaseley in 2017 and describes the move as the “best decision I ever made, I am happiest here and I can see the light at the end of the tunnel”. John, Tracey’s dad told us just how grateful he is for the care Tracey receives because he can finally be “Tracey’s dad again and not her carer”.
Since being at Chaseley, Tracey has reached some great achievements, she no longer has her food via a liquid feed, she now enjoys eating her meals, which are chopped into very small pieces. She has become much more independent through regular use of the equipment in our Activate Gym as part of her physiotherapy rehabilitation pathway and maintains good and strong head movement to help manoeuvre her own specialist wheelchair that uses the headrest to steer. Tracey is still very much a young lady who has a real lust for living life and this, alongside her sheer determination and motivation has helped Tracey’s diagnosis move from that of Full Locked In Syndrome to Partial Locked In Syndrome.
In May 2020 Tracey published her first book I’m glad you didn’t die mummy’, which shares her journey and her experiences of her life since 2008. The book was typed by other people, including a Chaseley volunteer, but the words are Tracey’s and it is very much Tracey’s story, which is one of courage and persistence. It is a moving and inspirational story that will also provide an insight for those who work with, and care for, people with severe disabilities.Click here to purchase a copy of Tracey's book via Amazon
Tracey’s ultimate aim when she came to Chaseley was to be able to progress through a rehabilitative pathway of treatment and therapies to enable her to move into her own home and at the end of February 2021 Tracey’s goal has been achieved. After nearly four years of living at Chaseley, Tracey has left to live in her own adapted home, with 24hr care support.
The entire Chaseley team were so excited for Tracey and whilst evetryone will miss her greatly, we are all incredibly happy that she has made this great step forward. We are certain we will all see Tracey again soon when she can safely visit us and Daniela Dan, Nurse Manager tells us “It has been wonderful to watch and be a part of Tracey’s journey here at Chaseley. She has made brilliant progress with her rehabilitation and this next step in her life is testament to her own determination and the support and care that she has received from the team. We all wish her the very best of luck with the move and we cannot wait to hear all about her next adventure when we see her next. I would also like to say thank you to everyone who has worked with and supported Tracey whilst she has been here, we have all been a part of Tracey’s journey and helped her to reach her goal, well done everyone.”
Tracey may have achieved her ultimate goal of moving into her own home, but that has not stopped her setting new ones, next up Tracey would love to do a skydive! So, watch this space!Click here to watch the Meridian interview with Tracey filmed in October 2020