Barts-MS rose-tinted-odometer: ★★
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’.
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
- Social support
- Family, friend and colleagues
- Social media apps, e.g. Strava
- Goal-orientated rewards
- Gamify or make addictive
- Make it fun and enjoyable
Crowdfunding: Are you a supporter of Prof G’s ‘Bed-to-5km Challenge’ in support of MS research?