Interview with Pete Rumble who has a C4 incomplete spinal cord injury (SCI)

Here is an exert from an interview with a good friend of ours who lives with a SCI. Each week we will post the answer he gave to a question posed regarding manging his SCI. The first few focus on the use of a standing frame which can be a useful adjunct to therapy for some people.

Interviewer: What are your experiences with different types of standing frames?

Pete: I’ve only really used three. The very first was the wooden Oswestry type when I was nineteen, and that was about ten months after I’d started using a wheelchair. This was when I was much more paraplegic than quadriplegic; I could drive to the hospital, get to the physio department, pull myself upright in the frame using just my upper body, and fasten the restraining belt without help. Zero-maintenance from the physios - I was the perfect patient. Well, maybe not quite. I don’t think I was capable of appreciating the long-term benefits of having a standing routine, and my lifestyle eventually led me to break away from regular physiotherapy sessions. After 12 months or so I stopped attending because of various distractions. It wasn’t until I had my spine fused in October 2003, about 18 months later, that I was reintroduced to standing.

        Because of the extensive surgery and my total lack of knowledge about being a spinal injuries patient, we went back to standing basics. Post-op, when my spine was stable enough for me to start doing physiotherapy beyond my hospital bed, they eased me back into standing using a tilt table. This is partly because of my diminished fitness at the time and subsequent low blood pressure when I was upright, but it was also partly because of the speculated bone density loss from not having stood in so long. After perhaps two weeks of sessions on the tilt table progressively building up towards me being vertical, they got me back into the Oswestry standing frame.

        When I was discharged from the hospital, I went back to my parents’ place in Swansea 200 miles away and I didn’t have a standing frame there. Inevitably, I fell out of maintaining a standing routine. Although I could have organised getting hold of my own standing frame through the council, or attended physiotherapy sessions at the hospital, transitioning from being a paraplegic to a quadriplegic because of the neurological disruption (caused by having my spine straightened) was so impactful that things requiring extra effort often fell by the wayside. The next time I stood was about four years later when I started training with a personal trainer who specialised in working with spinal injuries patients. The standing frame he had was an EasyStand Glider, which is a dynamic standing frame that mimics the basic movement of walking if you drive two large levers with your arms. It’s very hard work, but compulsive and rewarding.

        When I went to Uni, I let my standing routine slip again because I simply didn’t have the time or the energy. It was only when I became a part-time postgrad and my spasms started to feel like an unreasonable burden that I made the effort to start standing again. Volker would get me standing in one of the frames at Linden Lodge for about an hour once a week. We didn’t even have the frame configured so I was standing fully straight, and yet it was mentally and physically demanding because my hip flexors were so tight; I had to fight to keep myself upright. That’s partly a reflection on how taut Volker kept my lower limbs for the purpose of stretching. However, I didn’t feel that standing for an hour a week was making much of a difference when it came to reducing my spasms and muscle tightness. If I had taken the trouble to lie prone a few times a week, it may have helped, but I was in postgrad halls of residence and it was difficult to lie on my front because of the way the bed was orientated. You need more room to roll when your legs are out of control, and my gloomy state-of-mind at that point in my life kept my motivation in the shade.