You are here: Barbara's Story

Barbara before her injury
Barbara before her injury

Barbara's Story

Even though it's more than 30 years ago, Barbara will never forget the 13th of August. On this day in 1987, Barbara suffered a cervical spinal cord injury at the C4/C5 level, falling from a swing when she was just 11 years old.

With this type of injury, she can move only her shoulders and biceps a little, as well as her torso when in her wheelchair. She can't raise her arms and is dependent on others for all the activities of daily living. Learn more about spinal cord injury here.

Despite her condition, and with the essential support of her family, she has been able to achieve some of her personal goals like a graduation in Anglo-American Literature and a trip to Australia. 

Barbara's 11th birthday a month after injury
Barbara's 11th birthday a month after injury

Living with a spinal cord injury means managing a number of complex health needs, some of which are not so well-known. Because of her limited sensation and movement, Barbara developed a pressure sore 10 years ago which required her to stay in bed the majority of the day to let it heal. Pressure sores not only carry risk of infection, but due to the fragility of scar tissue following healing they can limit quality of life considerably.

To date, Barbara has undergone four surgeries to lessen the effects of the pressure sore, the most recent one on September 2020.

Stop the Pressure Day 2022

Pressure ulcers cost the NHS about £3.8m every day (according to a 2018 report by NHS Improvement) and are among the biggest challenges in clinical settings.

We know pressure ulcers can quickly become a very serious problem for a SCI person.

On Stop the Pressure Day, we are talking about this important topic with the aim to help every person with an SCI have up-to-date knowledge and education on managing their own skin, plus access to the healthcare services that could help them if they were to get a pressure ulcer.

Click the link below to the Spinal Injuries Association website to learn more about prevention and how you can spread awareness

Barbara in bed with the birthday gift from her young nephew
Barbara in bed with the birthday gift from her young nephew

“I really do hope the research could find a way to make us recover the use of our upper limbs at least... just to imagine getting up and dressed by myself, washing myself, eating by myself, holding in my arms my little nephew gives me chills.”

Spending more time in bed makes me long much more for my lost movements and being independent.

Restoring hope, dignity and spontaneity

Spinal Research is focused on accelerating the treatments needed to restore dignity and spontaneity to people like Barbara.

We are currently funding a portfolio of 20 research projects, crucially eight of which are now being trialled in humans. The focus is to restore critical functions such as hand and arm dexterity, improve incontinence and reduce debilitating nerve pain. Our portfolio includes a pilot trial currently taking place in the UK which uses electrical stimulation to reveal and improve functionality. Find out more here.

Improvements in any of these critical functions will have a huge impact on everyday independence for people like Barbara.

Barbara in her wheelchair after 3 weeks in bed
Barbara in her wheelchair after 3 weeks in bed

I hope stories like mine raise awareness of all the severe and permanent consequences of spinal cord injuries, and that can be shared as much as possible!

Barbara's 45th birthday gift: more time in her wheelchair than in bed
Barbara's 45th birthday gift: more time in her wheelchair than in bed

The Cure Girls

Like Lolly, Barbara is a member of the Cure Girls and writes articles for their blog; here she explains what it means to live with tetraplegia.

Read Barbara's First Book

We are thrilled to share that Barbara has published her first book on her experience of living with paralysis.

The book deals with the difficulties of a disability that involves dependence on others for every task, and the importance of taking steps towards independence.