Interview with Pete Rumble who has a C4 incomplete spinal cord injury (SCI) - part 2

Here is the second part of an exert from an interview with a good friend of ours who lives with a SCI. The first few focus on the use of a standing frame which can be a useful adjunct to therapy for some people. These are his unedited words and Pete pulls no punches, this is based on his experience and opinion. If you are easily offended by the use of strong language best to not continue reading, don't say you haven't been warned...

Interviewer: In your experience/opinion what are the advantages/disadvantages of using the standing frame?

Pete: There are two general areas to think about: Physiological aspects, and practical aspects. Regarding the physiological, medical professionals often mention improving osteoporosis as a primary reason for having a standing routine. Another reason is reducing hypertonia and spasticity. Of all the dozens of SCI veterans I’ve met through rugby and hospital encounters, none of them give a fuck about osteoporosis. Although, I do have a friend who fell out of his chair and broke his leg with alarming ease. He cared about osteoporosis at that point. But apart from him, the wheelchair users that I know of who use a standing frame do it to reduce their spasms, muscle tension and ultimately pain and frustration. My immediate point of reference is my friend Sam, who is a C5 incomplete. He uses his frame every day, and when he goes to bed at night, he can lie flat on his back and sleep for eight hours straight without being kicked awake.

        The unavoidable, major disadvantage of standing is the amount of time it takes, and this can contribute to a psychological resistance in the patient. You ideally need to do 30 minutes of standing every day for it to have a significant effect. As you can probably imagine, being locked in a standing frame for three and a half hours a week is not particularly uplifting (spiritually, at least). You can read as you do it or stare blankly at your smartphone wondering if your last half dozen Facebook posts have made you look like an ‘incel’, but it’s not the same as having the freedom to drift around as you please.

        One of the practical disadvantages of a standing routine is the amount of space the frame takes up. Part of the reason I stopped using a standing frame in university is because I had nowhere to put it in my student accommodation, and as a quadriplegic without a PA doing a full-time degree, I struggled to find the energy to do anything beyond the basic obligations. As a result, my hip flexors are so tight, and my leg spasms so reactive, that I have to sleep in the foetal position, otherwise my legs kick the shit out of me, and when they’re really pissed off, they can be so explosively violent that it’s like being booted by an invisible fuckwit. The longer and straighter my body, the more sensitive to spasm it is because of muscle tension, and the more potential dynamism the spasms have to express themselves. Being in the foetal position means I can keep a tighter grip on things, and a full-blown, spastic kick can only express itself as a nudge. If you were in pain and in need of sleep, you’d choose a nudge over a kick any day. The downside is, when I’m in the foetal position, the compression pain in my ribs from lying on my side eventually begins to interfere with my sleep. This gets worse according to how little exercise or upper body stretching I do. My intercostal muscles are paralysed, which means my ribs are abnormally compressed anyway, and if they don’t get stretched out, the pain gets worse. I’ve also developed a pressure wound on the Helix of my right ear from being limited to lying on my right side. The pain from it is more than enough to wake me up after two or three hours.

        The only other position I can sleep in is on my back, and I still have to keep my knees up because my legs won’t tolerate being straight. In order to lie on my back with my knees up, I need a support cushion on one side to stop my legs flopping over. If my legs do flop over, it exacerbates the pain I get at the bottom of my spinal fusion where my disk has worn out. Pain has taught me I need to keep my spine as straight as possible.

        Pain has a lot to do with perception; it’s harder to cope with pain if you’re sleep deprived, and typically I don’t sleep for longer than 3 hours at a time regardless of my position – This is jointly because of spasm, pain, and limited lung function. I won’t digress to talking about the last two aspects other than mentioning that analgesics and breathing are negatively entwined. Spasm, however, could be reduced by other means, such as orally-taken muscle relaxants, or a Baclofen pump. One of the downsides of orally-taken muscle relaxants is they have a whole-body effect, and though they may reduce leg spasms, they’ll also impede your breathing and give you astonishing lethargy – That’s not what you want as a quadriplegic when your energy levels are probably below par already. It’s putting obstacles in front of obstacles. This relates to the fundamental issue with disability: When the body no longer works in relative harmony, problems come from problems, and it can be exponential.

        Baclofen pumps, alternatively, are plumbed into your spinal canal so they can have a more localised effect. The drawback is, they obviously need to be surgically installed, they need refilling periodically, and the NHS won’t greenlight a patient’s request to have a pump fitted till they’ve tried a full course of various muscle relaxants taken orally. That’s like making a thirsty person drink three pints of piss before you’ll let them have a glass of water. Having the capacity for spasticity (as in, not having your neurology suppressed by the likes of Baclofen) has its benefits. Spasticity, particularly clonus, is good for circulation and possibly bone density. It’s also a very poignant warning sign for when something is wrong. If I’m getting a pressure wound somewhere, my legs will kick, or my abs will contract. If you’re doped-up on Baclofen, you could be sitting on your nail clippers and you wouldn’t know about it till you had autonomic dysreflexia and a wound on your arse which could take months to heal. Another benefit I’ve found with using a standing frame is it can help with lymphatic drainage. Water retention in the feet and lower limbs is an issue for those who sit long-term. Occasionally it’s bad and my feet are like balloons; sometimes the oedema is almost non-existent and my feet are like greyhounds. I’ve come to see it as a barometer for my health: If I have oedema in my feet, it means something needs looking at, such as sleep, exercise, diet, etc., but generally speaking, using the standing frame helps me with water retention. From nineteen years of experience I’d say, if you can combat spasm in a proactive way like stretching or using a standing frame, it’s a healthier long-term solution. And you’ll have feet like greyhounds.