Here is the final part of an excerpt from an interview with a good friend of ours who lives with a SCI. 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 - 
Any tips for a physio to engage/motivate someone with SCI in a wheelchair to participate in rehab?

Pete - Yes. Remember every patient will respond differently to a certain approach. Some won’t want to play ball, others will. One thing that’s universal is emotional engagement. No one wants to be treated as a ‘case’, which is the old-fashioned approach. You have to treat people as humanly as possible whilst still following a pragmatic path. Getting off on the right foot with a patient is important.

        What I believe you’ll find is all SCI patients are emotionally wounded in the early stages, and it’s a good idea to acknowledge it. The patients are probably in the midst of the worst experience of their lives, and if you arrive with a checklist and a restless demeanour, you’re less likely to have a pliant client. Making a connection with your patient is the best possible start, and you can do that by making eye-contact with them and asking how they are. Their state of mind in relation to their health probably takes up a huge amount of space in their thoughts, and I think acknowledging their suffering is not only a considerate thing to do, it’s expected, consciously or otherwise.

        I was occasionally looked after by a male nurse on the SIU when I was in rehab; he had tough standards and high expectations. I bumped into him a number of years later when I was back at the hospital and he asked how I’d been. I told him I’d struggled at times, and he said very earnestly, “why wouldn’t you?”. The bastard brought tears to my eyes. Although he hadn’t been so philosophical on our very first encounter when he was a younger man, this empathetic gesture made me feel less isolated, more accepting, and appreciative of how far I’d come, as well as appreciative of his support.

        However, sympathy has a limited value in a world of progress. Once you’ve dealt with the elephant in the room, encourage things evolve along the right timeline. You could go in and act like Jim Carey on amphetamines from the outset, and some people may respond warmly to a physio with a comical demeanour, but I suggest you tread lightly at first and save the energetic approach for when you know what sort of patient you’re dealing with.

        One thing I learnt early on as a patient is that trying to take in the enormity of everything involved is like trying to scale a mountain at a glance. No one looks at Mt. Everest for the first time and says ‘Piece of piss’. Even for the paralysed, the old adage is true: The only way to get anywhere is one step at a time. Progressing in small but persistent steps will probably be good for the patient’s confidence if they’re timid. If they’re a paraplegic, you’ve got more to work with, and you can perhaps go in more towards the deep end. When things are shit for me, I fall back on a reductive perspective. I just focus on one objective at a time: Waking up, get my legs off the edge of the bed, sit upright, let my hypotension recover, etc.

        As far as dealing with patients goes, a valuable mantra to remember is: It doesn’t have to be fun to be fun. Anything you can make a game out of in terms of exercises will lift the mood and help the time pass. ‘Fun’ can quickly become a seemingly unreachable pastime, or a place you’re no longer allowed to be, in the shadow of an SCI. It’s good to oppose that.

        If you’re dealing with a high-level quad who needs to work on their breathing, get them timing their inhalations, recording their breaths with a spirometer, competing with an egg timer - whatever. If it’s someone with more function, blow up a balloon and get them to knock it back and forth with you whilst they’re in bed or in a chair or a standing frame. It’ll be a fitting counterbalance to the elephant of seriousness you acknowledged on first acquaintance.

        One of the tougher challenges for a practitioner might be remaining personable with the patient without taking whatever comes back at you personally. I’ve seen and experienced these relationships becoming acrimonious and it’s not easy to recover from. It’ll be in your best interest to treat upsets with total pragmatism. If they begin ranting in general, treat it like a moment of performance art. If a patient has a go at you verbally, you have to be bulletproof-cool. You’re dealing with people who have been reduced to a raw state, and it’ll benefit you to be forgiving from the outset – Forgiving of yourself as well as forgiving of them. You’re not the cause of their upset.

        Remember that humour is often a good was to defuse a situation. Humans are stubborn and you’re probably not going to change anyone’s behaviour by meeting them head on. But you might get them to drop their defences by making the fuckers laugh.

Here is the fourth part of an exert from an interview with a good friend of ours who lives with a SCI. 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: Can you explain how transitioning into a wheelchair affected you psychologically?

 Pete: There’s a lot to reflect on since I became a wheelchair user. It’s very difficult to have an outside perspective on yourself in real time; it’s only when you look back from a few years down the line that you understand more fully what was happening and why.

        Talking in the broadest terms, spinal cord injuries, whether traumatic or non-traumatic, affect people differently according to their age. A more mature person might have a philosophical view on things, whereas someone in their teenage years might be more emotionally outward. The balance of hormones against experience, perhaps.

        I was eighteen when I got a chair. I’m not sure it’s something anyone ever gets completely used to, simply because it’s never simple and it’s never easy. I also experienced the unusual situation of having a double-dip transition, where I first became a paraplegic, then, latterly, a quadriplegic. The paraplegia I saw coming from way off. The quadriplegic development happened more abruptly because it occurred from the second part of my spinal fusion operation. My reactions to when I first started using a chair, and when I became more quadriplegic, were very different, partly because the ramifications of paraplegia and quadriplegia are worlds apart.

        The preamble to me using a wheelchair can be bracketed between when the symptoms became noticeable, which was 3 months after I turned 16, and when I first sat in a wheelchair about 29 months later. During this period, I underwent 5 major operations and 2 episodes of spinal meningitis. The yo-yoing stress of having the timeline of my deteriorating gait punctuated by surgical intervention and post-op rehabilitation was heavy. I was becoming outcast from the world of the walking, and it was impossible to express my inner turmoil directly. When I settled into using a wheelchair, it was a relief - It was a new dimension in which I could progress. I used to challenge myself to get across the bed, into the armchair, then into another chair, and back. I got a lot of satisfaction from working these new furrows.

       I may not always have been as adventurous as I could’ve been, but I was never intimidated by a physical challenge. What I was shit at was not confronting the other issues like urinary incontinence and my posture. As I mentioned in the seminar, because I took the scenic route to becoming a wheelchair user, I wasn’t assigned to a spinal injuries unit for proper rehab. And even if I was, I would’ve been difficult towards the staff over certain issues. When an able-bodied medical professional gives you a 40 cm catheter and tells you to slide the majority of it up your urethra, the words ‘get fucked’ trip off your tongue of their own free will.

        In school, we’re prepared for puberty, having safe sex, chasing a career. No one prepares you for becoming disabled. The experience is isolating in a way the newly disabled probably aren’t equipped to convey - more so if you’re younger; there’s more to mourn. But as a paraplegic, I had enough to fight back with. I worked out how to go to the toilet, how to get dressed in the chair, how to get up and down curbs. I had a car with hand controls so I could drive. I learned to swim again and some days I would swim for a mile, which took about an hour. I got myself a girlfriend after 18 months of being in a chair, then dumped her to go out with another girl who lived in British Columbia, and a lot of travelling ensued, and yet I was still too much of a coward to catheterise.

        My kyphoscoliosis getting worse wasn’t something I could ignore so easily. It was so pronounced that some nights I got inwardly distressed because I could feel myself choking on my own collar bones. I liaised with my orthopaedic surgeon and he felt it was time to intervene. He gave me the choice to have my spine fixed in the position it was in with a single operation, or to have it straightened in a two-stage op. I took the latter and that’s when my quadriplegia became more pronounced. This happened because the scar tissue and syringomyelia in my spinal canal became displaced during the second op when they straightened and fused my spine.

        Neurologically speaking, I’d gone into the operating theatre as a C7 and come out a C4/5. Specifically, I had good deltoids and biceps (90% left, 100% right), about 10% triceps function, some wrist extension, very little finger extension and almost zero flexion. However, I wasn’t upset. My upper trapezius muscles felt like a huge weight had been lifted from them, which it had (I have a large head), and uncoiling my spine let my muscles settle into where they’re supposed to be. It was like I’d had the best massage in the universe. And whereas newly made quadriplegics find they’ve suddenly lost an awful lot in terms of their ability and their future, I knew that I’d been improved and stabilised somewhat also. When the physios first took me to the bathroom after the final op so I could see myself in the mirror, my body was so atrophied, and my neck was so much more upright that I looked like ET. I’d grown 3 inches in height during that second operation.

        What SCI patients typically don’t realise, though, is how hard life really is until they leave hospital. Returning home is when you begin to understand what you’ve become in comparison to the person you can no longer be. Understandably, perhaps, the avalanche of upset was heavier when I became categorically quadriplegic.

        I don’t think I can cover the full emotional spectrum of how both stages (paraplegia and quadriplegia) affected me. What I will say though, is that becoming a quadriplegic as a young man is a more profound emasculation. Everything that defines us as young men is either severely reduced or completely removed from your sphere of ability. Confidence, energy, the sense of power and capability that we naturally fostered through strength (particularly in our hands), typically doing things like lifting weights, cycling, martial arts, giving a firm handshake, or just standing to meet someone on first introduction. It goes beyond raw power. Not being able to hold a pen, shave, brush your teeth without using two hands, all these things affect your fundamental confidence.

        Aside from strength and creativity, no longer being able to interact physically with someone sexually is another factor. The way in which erectile dysfunction manifests varies according to which level of your spinal-cord is damaged. It’s apparently more common in paraplegics to not be able to get an erection, even with anti-impotency drugs. I had a paraplegic friend in rehab who was immune to Viagra and its oral derivatives. For quadriplegics, the challenge is (according to the consensus) reaching a climax. However, it’s not just the obvious acts of sexual expression, it’s also the simple things like being able to touch and feel with your hands, or basic body language you’d use to flirt – All aspects of physical expression.

        In these respects, there’s a huge amount to take on board in terms of, firstly, who you will no longer be, and secondly, who you are expected to become. Wheelchairs are for the old and infirm. No young man wants to be either of those things. Incontinence issues, having to use the lift instead of the stairs, needing special access routes and ramps - these are all things you wouldn’t expect to worry about until you’d lived a good 85 years of active life. This complex psychology is hidden behind the apparently normal facial features of someone who’s sat in a wheelchair but possibly otherwise young and healthy. The truth is, the newly disabled aren’t simply abbreviated versions of their former selves, they’re fighting for their lives and they can’t express it because the situation is so alien to them, as well as everyone who’s emotionally close to them.

        From my own experience, and what I have learnt from those on the Spinal Injuries Unit at Stanmore (as well as from other wheelchair rugby players), going out in public is difficult in the early stages. I can remember fairly clearly the feeling that everyone was looking at me. However, I also felt a certain edge of desperation and recklessness that forced me to persevere. What happens with more progressive SCI patients is a swing from crippling self-consciousness, to virtual indifference to the opinions of strangers. The amount of time that takes varies. Those who never ventured beyond their comfort zone obviously don’t develop a great deal of self-confidence. Those who have the boldness to explore more of the world and shit themselves in exotic locations inevitably gain more character.

        One thing that is possibly universal is the initial heartbreak which is followed by various forms of anger. This anger has a tendency to sharpen the mind in certain aspects and develops a long-standing neural pathway to that angriness. That is not to say that people remain angry at their misfortune, rather it is to say that they maintain a particular hard edge throughout life (unless, of course, they experience a miraculous recovery). Part of the reason for this hard edge is the underlying effect of anxiety. Not being in control of 85% of your body gives you a lot to be anxious about. Continual harassment by spasm, the pain of stiff joints and tight muscles, and particularly the risk of bodily malfunctions (incontinence being the worst) which is amplified in public. Imagine, if you will, not just living the stigma of being in a wheelchair, but also having the capacity to perform a remarkable, spontaneous impersonation of a human skunk with little warning. I think this is something every SCI patient goes through. On the plus side, the more you go through it, the better you get at managing it and the less you let it degrade you if it does happen. Unfortunately, the process of rectifying a back-end malfunction is always going to be fairly exhausting and costly in terms of time. My main point, though, is that in the early stages of being a wheelchair user, this particular aspect is a hammer blow to the self-confidence. No one tells the school careers officer they want to be a disabled skunk when they grow up.

        Urinary incontinence is another significant factor for some, though it’s always been fairly straightforward for me in terms of management once I bit the bullet and inserted that catheter. It bled each time I catheterised for the first few months; I even made my brother faint on one occasion when he tried to take note of how it was done. Obviously, this is a point of pride for me. Slightly hit-and-miss as a party trick.

        Some SCI patients have leaky bladders and struggle to avoid it. For the majority, urine retention is the main problem, and that can trigger not just autonomic dysreflexia, but also reflux up to the kidneys causing damage long term.

        This general complication alone isn’t a factor that will stop someone going out in public in their wheelchair, it just adds another straw to the haystack of anxiety on the camel’s back. Where will I be able to urinate? Will I be able to get there at the right time? If I don’t, will my head start banging from autonomic dysreflexia? Will I have a stroke from it, or another UTI because I was so desperate to piss that I compromised on hygiene? I’m sure you see my point.

        Problems with pressure wounds complicate things further in terms of spasm; sleep; what you can wear; how you wash et cetera. Everything I’ve just mentioned is just an outline of what goes on in the heads of the newly disabled, and perhaps partially explains why it’s difficult to get someone to leave their comfort zone. Some patients won’t like using a standing frame because it messes with their blood pressure, or because they’re obstinate twats who won’t ask for help a second time. Sooner or later though, a patient has to accept that time marches on, it’s taking everyone with it, and you can either go willingly or noisily.

        The notion that you are alone with your disability becomes a quieter voice over time, but it’s persistent; your own threnodic tinnitus. It resonates with all sorts of other feelings, such as pain, depression, or the heartache of a breakup. No one has the cure, the only therapy is to keep going, to try and outrun the shadow, because if you wallow, you’ll get caught in the eclipse.

        There’s a hidden fortune in the misfortune. An able-bodied man can hide from his obligations. When you’re a wheelchair user, obstacles square up to you; they’re tangible and undeniable, aggressive. If you don’t get out of bed, you’ll get pressure wounds. If you don’t catheterise, you’ll get AD. If you don’t take laxatives and eat the right food and enough water, you’ll get constipated. If you don’t exercise, you’re in for a world of problems. And if you don’t shower, you’ll never get laid.

Here is the third 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: Do you use a standing frame now? if yes why? if no why not?

 Pete: I don’t use one currently, despite the benefits we’ve talked about. I bought an Oswestry frame on eBay for £200 earlier this year and it’s used for other things. I did use it periodically for a few months. Whilst it was nice to be reminded of how tall I am, the major drawback of this standing frame is it takes two people to lift me upright into a standing position because I no longer have the neurology to do it myself. The two people most immediately available at present are my parents because I live on their property. Though they’re capable of pushing me into the standing frame, they can’t do it without making exertion noises because they’re old. One day my father stacked it on the deck and bruised his ribs. A few days later I asked them to help me with the standing frame and my father said he wasn’t up to it because he hadn’t recovered from his fall. I was never happy about having to be helped by my parents with such a physical aspect of what is basically personal care. My father saying ‘no’ was the last straw. That’s the kind of person I am. You only have to say no to me once and I’ll never ask you for the same favour again. It’s not about resentment, it’s about independence. I don’t want to regress, I don’t want to be anyone’s pain-in-the-arse, and my parents won’t be around forever.

        I need a standing routine to reduce my spasms and to help unfold me for the reasons I’ve already explained, but there are two other motivating factors. I suspect that stretching in general, particularly the psoas muscles, can have a positive influence on your energy levels and subsequently your state of mind. There’s an ex-Navy SEAL named David Goggins who wrote a book called ‘Can’t Hurt Me’. David has spoken about experiencing crippling fatigue for no obvious reason, despite being one of the fittest men on Earth. He believes a lot of stress and tension manifests in the psoas, and the way he described his symptoms before he focussed on stretching sounded very much like what I experience in terms of seemingly inexplicable exhaustion. When I stretch routinely, I feel less exhausted.

        The second motivating factor for me to use a standing frame is I’m aiming to try para-cycling because my orthopaedic surgeon told me I was out of my mind to be playing rugby with a 14-level fusion. To compete in cycling as a quadriplegic, you need to use a recumbent handcycle, and to do so you need to be able to lie flat. When I get in my handcycle, if I coil-up like a teenager trying to light his own fart, I’m not going to be very aerodynamic and the other cyclists will laugh at me. So, consequently I’m saving up to buy the dynamic standing fame I talked about earlier. The advantage of this standing frame is the user can get in it and pump themselves up to standing height using an inbuilt crank. Once you’re upright, it’s a fitness machine. The drawback is it costs almost six thousand quid and takes up a bit more space than my current Oswestry frame.

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.

 

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.

Risk, Uncertainty & Benefit – Being Risk Savvy in an Uncertain World

Authors: Catherine Moore & Pete Rumble

Life can be tough.

Just when all your ducks are in a row and the sun is shining on your parade, the rain comes along. This is the risk of undertaking a worthwhile activity. Everything in life carries risk: getting in the car to drive to an appointment, setting up a business, finding love, crossing the road to get to an exercise venue, or falling whilst in an exercise class.

In therapy terms, the risk of harm to a patient is ever present and should be at the forefront of every clinician’s mind (BMJ Best Practice 2020). However, there are times when the risks seem to outweigh the benefits, and this has the potential to stifle your clinical brain to the point of paralysis. I was discussing this with a patient recently, lamenting that I might go and work in Tesco (other supermarkets are available) as that just seemed so much easier, less wounding.

I thought I would share their response with you;

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As Chartered Physiotherapists, we consistently push people to the limit of their abilities because this is where the therapy happens. We push people to the limits of their strength, their endurance, their balance. Anyone who has done this alone in the gym or at home will know that occasionally this doesn’t work out. Occasionally you will push your tissues beyond what they can cope with and strain a muscle, push your balance beyond what you can cope with and topple over. Because we have experience in classes and clinics, we risk-assess the activities patients undertake and we explain to them the benefits, risks, harms and uncertainties of what we intend to do. This duty of candour (HCPC Standards), enshrined in our code of conduct, allows both patient and therapist to make informed choices about what they undertake. However, in spite of all the risk assessments and disclaimers in the world, accidents do still happen, and it worries clinicians.

So, what is the alternative? Stop people moving? You can’t injure yourself if you never move… or can you? Immobility and not exposing the human movement system to physical stress has profound detrimental effects. Astronauts return from space with weaker bones due to a lack of gravitational loading. The human body is engineered for movement – how else would we have obtained food when we were in the wild? Our skin, the largest organ of the body, needs regular pressure relief in order to remain healthy. Skeletal and cardiac muscles need activation to maintain their strength and most joints need movement to prevent them getting stiff (Atlay 2001, Wu, Li, Cao et al 2018). It is possible (and very likely, probable) that the consequences of not moving are more likely to make you fall than if you keep moving (Salgado, Lord, Packer et al 1994; Sherrington and Tiedemann 2015).

If you, the individual, have the capacity to decide on taking the risk to push yourself to new limits of ability, then you have also taken responsibility to retain and use information given therein and communicate any concerns. It could reasonably be asserted that we are doing more harm by not engaging in physical activity than an occasional harm that occurs during exercise.

Take Home message:
We strongly believe the benefits of exercise far outweigh the risks.

I have deleted my application to Tesco (sorry Tesco, I actually would have been a great employee – punctual, reliable and honest). I have recoated myself with Teflon, licked my wounds and readjusted my risk benefit analysis. Right then… everyone on your feet.

References:

Atlay, A. (2001) Systemic and local effects of immobility, Journal of Rheumatology and Medical Rehabilitation 12(4):271 – 276.

BMJ best practice guidance (2020), Weighing up risks and benefits. Available online at https://bestpractice.bmj.com/info/toolkit/practise-ebm/weighing-up-risks-and-benefits/(accessed 19/02/2020)

Health & Care Professions Council : Standards of conduct, performance and ethics
https://www.hcpc-uk.org/standards/standards-of-conduct-performance-and-ethics/
(accessed 19/02/2020)

Salgado, R., Lord, S., Packer, J., and Ehrlich, F. (1994) Factors associated with falling in elderly hospital patients; Gerontology. 40 96), 325-331.

Sherrington, C. and Teidemann, A. (2015) Physiotherapy in the prevention of falls in the older person, Journal of Physiotherapy, 61 (2) 54-60.

Wu, X., li, Z., Cao, J., Wang, Y., Liu, G., Liu, Y., Fangfang, L., Song, B., Jin, J., Liu, Y., Cheng, S. and Wan, X. (2018) The association between major complications of immobility during hospitalisation and quality of life among bedridden patients: A 3 month prospective multi-center study. PLoS ONE 13(10): e0205729 

Feature image credit:: https://jamanetwork.com/journals/jama/article-abstract/2679279


Catherine Moore updated 6th Feb 2020

Physiotherapy has become a very confused profession. When I first qualified over two decades ago, life was very simple. Poor posture caused back pain and reduced core stability contributed. Agreed maybe it was a little too simplistic but lots of patients benefited from this wisdom. However, as the profession ‘grew up’ it wanted to be more accepted in the medical community for having an evidence base, so we went about proving that what we did was effective. We embarked on a journey towards truth that involved applying effectiveness research to everything we did. Because we wanted acceptance, we pursued the gold standard of evidence, the randomised control trial (RCT).  

Funny fact about RCTs; they were designed to show the effectiveness of drugs.  

Drug treatments can be blinded (so you can be given a bottle that might contain a drug or it might just contain a dummy tablet, no way to know hence the term blinding) and drugs can be dosed (the same volume of the drug can be delivered each time). In the Physio world the ‘drug’ is the treatment we offer. In order to decide upon that treatment there is a complex social interaction that goes on between the therapist and patient. An alliance is formed based on what the patient perceives will have benefit and the evidence/ experience brought by the therapist. The problem with this interaction is that it can neither be blinded or dosed.

The good Physio will take the time to explore the finer nuances of the patients’ problem. What aggravates the problem, what eases it, what functional limitations does the patient report. In many ways, patients are very similar but also very different. Take for example two back pain patients (please excuse the extreme stereotypes here). Mrs Jones is a nurse who stands or walks for 12 hours whilst Mr Smith is a brick layer who will bend forward most of the day. They both have back pain but their genetic make-up, body morphology, eating habits, exercise habits and other lifestyle factors mean that their tissues are under extremely different stresses. This brings me to the next issue with RCTs; in an RCT, both patients would be labelled “non-specific low back pain” (NSLBP) and given the same treatment. Currently the majority of low back patients (94-95%), regardless of the differences in stresses, will be labelled low back pain and researched in the same homogenous group.

The other thing the RCT requires is a control group or placebo. Control is really important in drug trials as the control group of the trial can be given a ‘placebo’ which is the dummy drug but patients won’t know they are receiving it. In physiotherapy trials the control is usually no intervention (patient remains on a waiting list) or usual care (GP and meds). Does the patient assigned to the control group then go and sit in a dark room for the whole time the other group are receiving the treatment in the trial? No of course not! They have access to friends, books, the internet, this blog. They will attempt to find answers and may even follow advice, so can they really be classed as a control in this instance? I do not believe so. These confounding variables can influence recovery.

Compare the two groups six months later and guess what? There is no discernible difference between the treatment group and the control. The conclusion is that the intervention is dismissed as ineffective. However, the problem here is that statistics have been used to show the difference between the groups. Statistics will tend to use the mean improvement scores from both groups and compare them against each other. Mean is the average improvement, average means average. Some people will have improved a lot, some people will have had a moderate improvement and some people will have worsened. When we average this out, we get a small or minimal change based on the intervention. What we don’t know is which patient improved and why or indeed which patients got worse and why? Maybe the intervention does work for the right person at the right time but due to the homogeneity of the researched group we can’t answer that question.  

As a consequence of this over-reliance on the RCT, we have therapists who will tell you that the there is no evidence that how you sit makes a difference to your low back pain (it does but don’t tell anyone I told you), there is no evidence one exercise programme is better than another for low back pain (there are better ones but again please don’t tell anyone I told you this), there is no evidence that tape is useful (it is when used at the right time for the right purpose, but if you tell anyone I said that I might have to kill you). Where does this leave us as a profession and where does this leave the patient. If nothing works….do nothing? Sit how you like for as long as you like? Do whatever exercise you like or no exercise? The pain is all in your head and you just need to sort your head out? It has become so confusing.

Therapists have become dependent on the published evidence and have lost sight of the original tenets of the evidence-based triad. It is a balance of the best of the published evidence (I am inclined to argue that the RCT is not the best for Physiotherapy but that is my personal opinion), the evidence the patient brings and the evidence the therapist brings based on their expertise and experience. What the evidence from RCTs tell me is that what they show does not match my daily evidence gained through patient encounters. Does this mean I am wrong and the RCTs are right? My patients tell me otherwise. They tell me they feel better, move more, get back to their functions. Why is this so different to what the published ‘evidence’ says. Could it be the methodology of the research is wrong?

I am undosable

I am unblindable

I do not treat you all the same

I am not wanting to give an ‘average’ treatment

Here at Moore Associates every patient is an individual. We will look at the unique needs of all individuals. If you have to sit for work, then how you sit and how long you sit is important. If you need to walk, how you walk is important. If you must bend a lot, how you bend is important. We assess what will help your low back pain in relation to your genetics, your morphology, your lifestyle habits and tailor your rehab to the stresses your body needs to cope with. We will use tape if we think it is warranted, we will use massage, mobilisations and core stability when it is required to help you move and cope with your day to day activities. We will not give you a generic exercise sheet that will have as much chance of making you worse as helping you improve. We will teach you how to manage YOUR back – its yours so YOU need to manage it.


Jump Rope - A Systems Approach

Owen Moore - Update 2nd Feb 2020
If this was a drug, we would all be on it 3 times a day!
If you can walk, you can jump rope. Train the way you want to perform. Believe in your ability to be better. Take ownership of your fitness - at home, today and forever.
Create a new habit - 3 sets of 3mins 20secs (10mins of jump rope) - as easy as brushing your teeth.

I had the pleasure yesterday of hosting the Buddy Lee Jump Rope System (JRS) to a select few at the UFC Gym, Nottingham, England.
My interest in jumping rope started a few years back when the General Manager of UFC Gym Nottingham, Mr. Rikki Jeffrey helped me achieve double unders in a single morning (despite months of CrossFit training).  When I managed to secure Buddy Lee's attendance, Rikki was the first person I wanted to ask about hosting the seminar. Huge thank you for yesterday AND your help back then sir!
Fast forward now to 2019. I was asked to help plan and deliver a boxing class for Parkinson's Disease patients and I was looking for a jump rope methodology that was progressive, safe and effective for at-risk patients. Amongst the fog of videos, opinions and impossible somersault tricks, I discovered the methodology that has since changed my fitness, health and that of my patients. Imagine making falls and fraility a thing of the past? Can you ask an 80-year old who is osteoporotic to jump rope? Absolutely - if you coach them correctly.
Obesity, ACL injurycardiac rehabilitation, chronic pain syndromes ~ these are all conditions receptive to a functional loading approach that jumping rope allows. We should be prescribing jump ropes NOT drugs; opiods and NSAID's convey more risk than benefit. The time for change is imminent and I intend to champion self-efficacy and fitness with a JRS.
There's the 3 Phase approach (Base, Conditioning & Sports/HIIT), low impact, challenging skillsets and fun cognitive tasks - all this and more from a cost-effective, space-efficient treatment. I am now writing an exercise prescription program for common musculoskeletal conditions with the research to support the JRS.

I have been reviewing the literature about skeletal muscle injuries, tendon adaptions to physical stress and also the emerging clinical utility of jumping rope.
I was very interested to learn that jumping rope (regular & weight ropes) increased sit-up and press-up ability significantly over a 12-week schedule,  as well as reduced body fat and improved grip & throwing function!  
Full researcgh paper (.pdf) ::
https://pdfs.semanticscholar.org/96e7/f38a4864aba2aaa4850b1fb04ae25df36ba6.pdf?_ga=2.5571568.276023919.1579971608-2005536517.1579971608

Bias, Chance or Truth?
In their book Clinical Epidemiology - The Essentials, Fletcher & Fletcher [1] make note of how our clinical observations can be subject to bias and chance; when these have been controlled or minimised, truth should emerge. I learned very early on that the tendency towards bias and chance during the post-graduate education period left me vulnerable to being swayed by people rather than the movement science. Ever since the CSAG review in 1994 [2] I have wondered how useful a medical/disease model for lower back pain [LBP] was to the patients I assessed and treated.
Now let's be clear right from the outset; I am biased. My view of how to treat LBP is an amalgamation of research I have read, applied and found useful. As a physical therapist, I have not been adequately trained in medicine, psychiatry or other allied disciplines to be deemed competent to treat my patients for depression, anxiety, mindfulness etc. etc. It is however, abundantly clear that the way people think and view the world can influence their recovery from musculoskeletal [MSK] pain syndromes. But does the way you think actually change your ability to manage the symptoms in your lower back? I do not believe this paradigm.

A weekend course does NOT constitute a qualification; it represents an awareness/taster of an idea or belief. I suspect that there would be outrage and shock if our military special forces, airline pilots or emergency services were "qualified" after a Saturday/Sunday training session.
Movement Impairments - Cause or Source?
Treatment by physical means, and a focus upon the movement system, is my unique focus [3]. I make no apologies for distancing myself from the shift in physical therapy practice towards telephone calls masquerading as treatment or handing out leaflets and hoping patients figure it out for themselves. Two events in 1998 changed my direction of thought and practice pattern forever ::
* 2 days with Professor Shirley Sahrmann in the Gleeson Lecture Theatre [Mar 1998, Chelsea & Westminster Hospital] & subsequent Mary McMillan lecture [4].
* A secondment to work in the Ergonomics Department at Nottingham City Hospital [1998-1999 with Professor Sue Hignett] & subsequent post-grad study/cert in Occupational Health [5].

So why was this such a shift for me?
Independently of each other, both Prof. Sahrmann & Prof. Hignett pronounced their focus upon the causes of pain problems rather than trying to ameliorate the symptoms or sources of pain. Put bluntly, the body tissue that hurts [::defn ::source:: ligament, muscle, tendon] can be cooked, frozen or electrocuted by a therapist, but what discussion is taking place with the patient about the cause [::defn - cause:: sustained or repetitive movement that is physical stressor]. I have rarely found passive treatments rewarding for either the patient or physiotherapist.

That said, we cannot deny that at the right time [6] in an injury continuum, modalities like taping, acupuncture, manual therapy etc can help people recover. Indeed, my own sporadic injuries [e.g. calf strain 6 days before Army selection] benefitted tremendously from taping [7]. Shame Rocktape couldn't improve my eyesight on the Snellen test otherwise I would have used it on my eyes too!

What I truly believe is that over a lifespan, making people autonomous should be a key goal. You wouldn't dream of having your teeth brushed for you, by the dentist, morning and evening for the rest of your life?

References ::
1. https://www.amazon.co.uk/Clinical-Epidemiology-Essentials-Robert-Fletcher/dp/0781752159/ref=cm_cr_ar...

2. http://bjgp.org/content/bjgp/47/421/501.full.pdf

3. http://www.apta.org/uploadedFiles/APTAorg/Practice_and_Patient_Care/Movement_System/MovementSystemSu...

4. https://watermark.silverchair.com/ptj1208.pdf?token=AQECAHi208BE49Ooan9kkhW_Ercy7Dm3ZL_9Cf3qfKAc485y...

5. http://www.lboro.ac.uk/departments/design-school/staff/sue-hignett/

6. http://bjsm.bmj.com/content/bjsports/46/4/220.full.pdf

7. https://www.researchgate.net/profile/Catherine_Moore11

New site written & published yesterday and the new focus upon upper body strength - (the muscle up [https://youtu.be/rtF51pQB6Wc] has led to a fierce challenge in the gym. Watch this space for more info and instructions as I improve.