Living with spinal cord injury

A spinal cord injury can affect your life in so many ways. Activities and routines that used to be straightforward can suddenly seem insurmountable. But we believe with the right knowledge and support, people with a spinal cord injury can still live life to the full.

Here you can read the stories of other people who are living with spinal cord injury talking about their experiences and how they adapted to their new situation.

Accessing Services

Jackie had a spinal stroke in 2012. As she had an incomplete injury and was still able to walk, she was discharged from her local hospital and never had the opportunity to go to a spinal centre. The lack of specialist rehabilitation left Jackie without the knowledge, skills and confidence to live independently. Jackie said, ‘I’m one of those people who slipped through the net.’ She tried to return to work but had to take a leave of absence, because she lacked the knowledge to use a wheelchair and walking caused her extreme pain and fatigue. This left her feeling stuck at home and isolated.

A photo of a wheelchair skills trainer and participant

Jackie at a wheelchair skills session

Jackie eventually discovered Back Up and since attending our City Skills course, her life has transformed. She can now get out and about in her wheelchair, and she soon hopes to go back to work part time. She has even challenged herself by going to public places like shopping centres that she wouldn’t have contemplated visiting in her wheelchair before.

“The doctors were amazed by the difference in me. The course basically gave me my life back. I was so much more confident in myself afterwards.’’

Having a Personal Assistant (PA)

Beth was just about to sit her A levels when she broke her neck in a car accident and had to readjust to life as a wheelchair user. After completing her rehabilitation and returning home, one of the things she struggled with was the fact that she had to have a Personal Assistant (PA) with her for the majority of the time. She had a team of 4 PAs, working in 24 hour rotations. Beth found this tricky as she was limited to certain changeover times.

Beth with her friends and PA on holiday in Brazil

Beth with her friends and PA on holiday in Brazil

‘‘I would sometimes limit what I did to only spending time with friends as I didn’t need a PA with me. I also struggled to find much in common with a couple of my PAs as they were 20 years older than me which made me feel self-consciousness around them.

Beth went on a Back Up Ski Karting course and soon after became a volunteer. This gave her the chance to meet other people with a spinal cord injury and discuss her situation. She realised that she could change her care team to suit her needs and what she wanted to do. The decision made a huge difference to Beth’s quality of life.

‘‘This change has enhanced my independence as I have more flexibility in my life and I am happier and more comfortable with the people who work with me.’’

You can also visit our blog to read about a wider range of experiences from other people with a spinal cord injury.

Contact

If you need advice on any of the issues raised above or any other topics, please contact our outreach and support team on 020 8875 1805.