After my life-threatening accident last year I returned to work on the 1st of February against the advice of many people. I thought getting back to work would help with my overall rehabilitation. Yes, in the sense that commuting to work and adapting my exercise programme to fit in with my workday would help my recovery. But no in the sense that my energy levels, both physical and mental, are nowhere near back to normal and hence my productivity or outputs remain low. As a result of my early return to work, I have not been focusing on my rehabilitation as much as I should have been; I have gone from doing 3 hours a day of rehab to maybe 3 hours a week. This is simply not enough for me to get back to normal.
It also became apparent to me that I can’t simply continue with the same-old and therefore something had to give. When I looked at my diary last week I realised I had no white space in it, i.e. big chunks of time for thinking, writing and taking on big projects such as our preventive neurology initiative.
I have therefore decided to reconfigure my academic work-life to re-engage with my physical and mental rehabilitation and to focus primarily on preventive neurology, in particular, MS prevention. So far I have resigned from 14 (and counting) MS-related initiatives I was involved in. My resignation from each is not about the individual initiatives but the gestalt and creating the necessary white space in my life for big projects.
As I will be focusing less on clinical issues and more on basic science and MS prevention I will be writing far fewer blog posts and answering fewer questions. I will keep you posted on how things evolve. The good news is that I have managed to start jogging albeit up-and-down the corridor outside my office. My ambition is to complete a parkrun, which is 5km, before the 21st of June.
I am receiving an increasing number of emails and messages via my social media channels asking me for an update on how I am doing.
I am continuing to improve slowly. I still have pain in my pelvis as a result of the fractures I sustained. However, the pain is manageable and I have stopped all my analgesics except a once-daily dose of an anti-inflammatory that I take before I go for my daily Rehab Walk. The good news is the Prof K and I are walking together on a weekly basis; typically on a Sunday. Last Sunday I almost managed 10km, which is my target for the end of January.
Worryingly I have reduced movement in my right hip; mainly hip flexion and internal and external rotation. I am hoping this is not due to permanent hip damage as a result of the impact, as I am desperate to run again. Yes, I have ambitions of running another marathon. For my cardio workouts, I started using an exercise bike three or four times a week. However, sitting on a saddle is very uncomfortable with a fractured pelvis, albeit it a healing pelvis.
My neck is improving, but I find it difficult to stand or sit for more than about 3-4 hours before needing to rest. The latter is due to my paraspinal muscles being weak after my neck surgery. The paraspinal muscles are the postural muscles that support the spine and work as an integrated column. Because the function of the paraspinal muscle column has been affected I have to rely on using my accessory muscles to support my neck and head. These muscles are only meant to be used intermittently so when they have to work continuously for hours they get tired and very sore. Although I am doing dedicated paraspinal muscles exercises as part of my rehab programme, which is helping, these muscles are not up to the task of supporting my head on their own. I have been told it can take up to a year for the paraspinal muscles to recover and work as a unit. This is why I have had to get a new reclining chair with neck support so that when I return to work I will be able to rest my neck muscles in my office.
The real improvement is that my radicular or nerve pain has gone. This has allowed me to stop all my sedating medication and has allowed me to start thinking clearly again. As a result of the damage I sustained to my C7 and C8 nerve roots in the neck I still have mild to moderate weakness and wasting in my left C7 and C8 innervated muscles. I am told this may improve but is likely to permanent. It is interesting to see how some of my left shoulder muscles, particularly my trapezius muscle, has enlarged to compensate for my weak serratus anterior muscle. My weakest muscle by far is my left triceps muscle, but as I am right-handed I hope this won’t cause too many problems in the future.
My balance is still not back to normal. I can’t really stand on one leg unsupported and have problems heel-toe walking. I am assuming the balance problem is vestibular from the mild head injury I sustained in the accident. Although I am doing balance exercises, my recovery in this domain seems to have plateaued. For those of you have issues with balance I can now understand how irritating it is and how it impacts on your ability to do simple tasks, such as walk in the dark and dressing. Being unsteady on your feet adds time to many tasks and prevents you from multi-tasking; all these small-time deficits add up and simply slow you down.
My energy levels and attention span remain low. I still spend a lot of time on my back listening to podcasts and can only work for a few hours at a stretch. In the past, I would typically read a journal on the tube, the Economist Espresso app feed, skim the online Guardian website and read a few Guardian articles of interest, clear my other daily news and journal feeds and walk 2 km as part of my commute to work. I would typically achieve this all by 8 am, the time I usually get into my office to start work. It now takes me several more hours to achieve the same level of productivity; not to mention the impact on the rest of my day’s work. The loss of my productivity is quite profound, which is why I am going to have to have a graded return to work.
This low level of mental productivity gives me a deep and profound understanding of what it must be like to have MS or have had a major head injury, which clips your cognition and attention span. Thankfully the brain fog I had whilst on gabapentin has lifted. Being a knowledge worker requires you to be able to concentrate for prolonged periods of time. I am very anxious about whether or not I will get back to my normal level of cognitive productivity. I am also finding it difficult to get into the flow, i.e. a state of intense concentration when you are super-productive. I now tend to flit from one low impact task to the next. I really need to get a grip on this.
Despite the negative tone above, I am still very positive. My accident could have been much worse. I am sticking to my rehab programme religiously, but it is very time-consuming. I literally spend 3 or more hours a day on my physical rehabilitation, which is why going back to full-time work is going to be difficult as it would mean clearing time on either side of my workday to do my exercises.
A very close colleague and friend of mine who has worked in a neurorehabilitation unit made the observation that physical therapy and rehabilitation often don’t achieve their outcomes because of poor adherence. The latter is clearly driven by the intensity and duration of the exercises. He even implied that I would also give up on my rehab at some stage. However, I am determined to prove him wrong.
I am not complaining. I am very lucky and privileged to have the resources to pay for the services of a private neurophysiotherapist who has made such a difference to my recovery. I have a newfound appreciation for the added-value therapists bring to the table, both in the acute setting and in the community, in helping patients with physical impairments. It is a great pity the NHS doesn’t invest more in therapy services so that everyone can access what they need. If I had gone the NHS route for community-based rehabilitation I would be having my first zoom or remote appointment about now. When I contacted them they told me there was a 12-week wait for rehab services.
The orthopaedic and neurosurgery teams who have been looking after me are satisfied with the progress I have made, which is also positive.
So, in summary, it is looking good. I am fine and good general health and will be back behind my desk in the near future.
I want to thank you all for your kindness and support over the last few months; it is much appreciated. It is good to know that there are people out there who care about you.
As you know we have had a designer, who is now a design researcher, embedded in our Barts-MS group for over a decade. Her name is Alison Thomson. In my opinion, Alison is worth her weight in gold in terms of the added-value she brings to the table. Alison’s work has been instrumental in many of our research projects and themes. For example, Alison was behind the design and validation of our cardboard 9-hole peg test that was part of our #ThinkHand campaign. Alison extended this to her project designing the Under&Over rehabilitation tool to maintain hand and arm function in people with more advanced MS. Alison is now leading a web-based study to see how effective the Under&Over activity is in maintaining and preserving hand-function in people with advanced MS. This is a very exciting project that is underpinned by the philosophy of ‘use it or lose it’.
Under&Over
After my accident and my thoughts on what needs to be done to improve healthcare design, Alison emailed me to ask the following questions.
“I’m thinking about how we can best support people to stick to the 12-week rehab programme. From what you are going through, what is keeping you motivated to continue with your rehab? Is it external factors like support from family, friends, colleagues etc. or seeing yourself physically improve? Or is it more internal, based on your personality as a self-motivated person? I’m looking for things we could incorporate into our digital programme – maybe not for the study, but for delivering digital programmes in the future.”
I delayed responding to this question because I had to think about it. I am not sure I have one definitive answer and I suspect my answers, or at least their emphasis will change over time.
I think first and foremost is that I have taken a positive position after my accident. I have refused to take a glass-half-empty approach. I am focusing on how lucky I am. Firstly, to be alive, yes to live another day and secondly not to have had a more severe head injury or spinal cord injury. I am not depressed. I now wake up each morning and look forward to living each day; one day at a time. My recovery is a form of mindfulness therapy; a time to reflect on the bigger picture.
I can’t overstate the role my family, friends, colleagues, acquaintances, blog readers etc. have also played. Being valued and appreciated makes such a difference. Never underestimate the role and value that a sense of self-worth plays in motivation. The experience has also taught me how important social capital is. For example, just getting kudos from strangers and friends via my Strava (a sports-related social media application) for my very slow rehab walks helps. So if we could socialise rehabilitation, i.e. use Strava or a similar application, to allow people to share their activities will be highly motivating and help engagement with rehabilitation.
Making rehab competitive is another lever that should be explored. I don’t mean beating each other at the 25-foot timed walk, but setting personal goals that are realistic. I did this by setting myself the ‘crutches-to-500m challenge’, which I subsequently changed to the ‘bed-to-5km challenge’ when I realised the former was too easy. Making this public, by linking this to a fund-raising initiative, which has its own target, is another nudge factor that helps me get-up and exercise every day. The one downside of this is I suspect I have been overdoing it a bit, i.e. trying to walk too far too quickly, which may actually be slowing down the pelvic fracture healing process. However, the feedback you get from measuring your progress shouldn’t be underestimated. Seeing that I am walking faster and further is highly motivating and makes me want to recover quicker.
Self-motivation is important and I am not sure this is any different to other things in life. I have always been intrinsically motivated and love personal challenges. I love reading and discovering new things even if they are not necessarily related to any specific goals or ambitions. Designing and implementing a self-rehabilitation programme has been great. I started by going back to basics and re-learning about all the muscles in the shoulder and hip girdle; their insertion sites, which nerves and nerve roots innervate them and how to exercise each muscle. What I wasn’t sure about was whether I had to exercise my weak muscles to exhaustion (anaerobic exercise) or should I just do slow repetitions (aerobic). Another issue was isometric (a muscle contraction in which the muscle doesn’t change in length) vs. isotonic (muscle changes in length) contractions. I searched and read the rehabilitation literature and there were no clear answers to these questions. What I didn’t get right is how to prepare your body posture to isolate the muscle action to prevent compensatory muscles taking over the action of the weak muscles. Fortunately, a good friend and neurorehabilitation colleague recommended I see a specialist rehabilitation neuro-physiotherapist who has identified the flaws in my DIY programme and has given me a much more targeted exercise programme. This is an example of why experts, in particular deep experts, matter.
I have to admit that I have had to go the private physiotherapy route because the NHS route would have taken too long (10-12 week wait) and I had already achieved all the objectives set by the inpatient therapy team at King’s College Hospital; i.e. being independent in terms of activities of daily living, climbing stairs and walking outdoors unaided. What the inpatient therapy team should have done is to ask me what I wanted to achieve with a bespoke rehab programme? I would have taken their objectives for granted, as the minimal baseline on which to build on. In reality, I want to get back to normal as quickly as possible, i.e. back running and potentially running another marathon. If I do run another marathon I promise to do it to raise money for either the MS Society or the MSIF. I also want to get back to work; i.e. being able to complete a 12 hour day sitting or standing at my desk.
I am also a bit of an exercise junkie. If I don’t exercise I get low and feel that something is missing in my life. My addiction to exercise, in particular, running goes back to my teenage years. Doing my daily rehab exercise programme makes me feel good; self-reward for a job well done. I also enjoy doing it. If you do regular exercise you will know what I am talking about. If on the other hand, you don’t like exercise, which is about 40% of the population, you won’t relate to this aspect of self-motivation.
I think Alison also needs to appreciate that I am coming to my rehab from a very privileged position. I have had trauma, which is a monophasic or one-off insult to my body and hence my injuries will improve spontaneously, provided I have no complications. If I had MS this would not necessarily be the case; particularly if I had advanced or progressive MS. Just having MS, or another chronic progressive disease may impact on motivation. I am highly educated and have medical knowledge. I also have financial resources and was able to purchase home gym equipment and pay for private physiotherapy. Being employed with a good income must count a lot. I am married and don’t live alone. Being lonely will impact on your mood and motivation. What I am getting at is that my personal circumstances make it so much easier for me to optimise my rehab compared to other people who are in very different positions. This is why the social determinants of health are likely to be as important in determining rehab outcomes as they are in determining mortality or other health outcomes.
So in summary, I think the following is a list of factors that are motivating me to stick to my rehab programme:
Positive attitude; not depressed
Education and knowledge
Access to resources
Self-directed objectives
Feedback
Social support
Family, friend and colleagues
Social media apps, e.g. Strava
Competitive
Goal-orientated rewards
Gamify or make addictive
Fund-raising
Make it fun and enjoyable
Crowdfunding: Are you a supporter of Prof G’s ‘Bed-to-5km Challenge’ in support of MS research?
