Who are we?
We are husband and wife, Adam and Irrum, with Amelie, aged 2, who is the most amazing little helper imaginable!
In August 2014, hours after Irrum had delivered Amelie, an epidural haematoma compressed Irrum’s spinal cord, leading to paralysis from the waist down. The diagnosis was complete paralysis (ASIA A) at T12. The outlook was grim, with very few people making any sort of noticeable or useful recovery from this starting point.
Undeterred by the naysayers, we carved out our own path. We started gathering information about rehabilitation centres, equipment, exercise regimes, scientific breakthroughs and inspirational stories. Our research helped us to formulate a plan, and Irrum tried many different types of therapy, from simple home-brewed exercises through to more elaborate techniques based on cutting-edge technology. After many hours of hard work and dedication, Irrum’s T12 injury has been reclassified to ASIA C. She can now do assisted walking (using a walker and with a therapist helping to extend knees) over about 10 metres. This is still far away from where we dare dream, but it is considerable progress from having no movement from the waist down.
Aims of the blog
When we were catapulted into the realm of spinal cord injury, we were constantly frustrated by how difficult it was to source information. Now, with a boatload of experience and knowledge under our belts, we feel in a position to help other people on a similar journey to ours. In this blog we will attempt the following:
1) To provide honest reviews of equipment used in spinal cord injury rehabilitation. Fortunately, Irrum has had access to a wide array of gizmos and gadgets, and we hope our experience can allow you to decide which ones may best serve your rehabilitation goals.
2) To share stories from other people with spinal cord injuries who have made strides in their recovery, from small functional returns to some form of walking ability. In our opinion, reading such stories can have a tremendous galvanising effect.
3) To keep abreast of discoveries in spinal cord injury research and to evaluate these findings critically. Although neither of us hail from a medical background, Adam and Irrum each have over 15 years of experience in scientific fields (Adam has a PhD in Computer Science and Irrum is a clinical scientist), so we have a fair grasp of understanding scientific material.
The costs associated with a spinal cord injury are sky-high. For example, a typical one-hour physiotherapy session costs around £60, and realistically you need at least 6 hours per week to make progress. Specialised equipment can cost anything between £3000 to £15000. We are grateful for any donations to propel Irrum to recovery: