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
- 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?
CoI: multiple
Twitter: @gavinGiovannoni Medium: @gavin_24211
Hi Gavin
Thanks for your very informative rehab progress blogs.
Great that you appreciate the difference between a deteriorating condition and a hopefully once in a life time rehab programme. I totally agree on the ability to be able to pay for what will benefit your condition most . Really really hard for those that cannot afford basic ongoing rehab as needed for a lifetime condition. The amazing work of MS centres comes to mind for that ongoing social and physical stimulus needed for best MS management.
Yes, and even KNOWING where to look, even if you have to pay for enlightened physiotherapy, and ongoing supervision!
Hi Gavin
I agree with your comments wholeheartedly. A positive attitude is very important but so is financial security, being able to afford private physiotherapy and indeed living in accommodation which is either adapted for your requirements or you have the funds to make the necessary adjustments. I have always said to have this condition and also to have to worry about money must be or could be very demoralising.
I also agree with the comments that it is one thing to have deal with a sudden change in circumstances like yourself, however a progressive, relentless condition is very different. You need to maintain a very positive attitude at all times.
Well done ProfG! I’m sure you will be back to normal soon!
But, where is your rose-tinted pair of glasses? This post is uplifting; a score of 2 in the tinted-ometer doesn’t make it justice.
Ah! Following you on Strava now.
Yes you are lucky, a one off accident, taken to an excellent hospital for surgery, you can afford private treatment and buy suitable equipment to help with your rehab.
Many people with MS are not in such a privileged position and there is not a lot available for them right now.
I don’t mean to be dismissive or puncture your optimism. The real world can be very different
As someone with ‘PPMS’, reading this post makes me feel like I ought to be despondent. But I’m not.
I admire your willingness to share so much of your personal life in public.
I’m glad that you are recovering well.
p.s. To be honest, in my opinion, the juxtaposition of your recovery with the challenges of progressive MS seems a little inappropriate to me.
Respectfully disagree that this comparison is inappropriate. “In a dark time, the eye begins to see” – T. Roethke . Prof. G is seeing factors important to recovery/ maximizing life. It feels good to rally behind someone to get better. But we need to figure out how to rally behind those chronically ill, and this is a start.
My failing perhaps, but I find this piece very clumsy.
Thanks for doing such a fantastic job ProfG of staying with us on the Blog and applying your accident and rehab experience to the world of MS.
Regrettably I’m not able to read this post minus my ‘MS glasses’ Consequently the words ‘ I want to get back to normal as quickly as possible’ made me wince. You acknowledge the differences for yourself compared to PwMS. But this is the raw truth: that your positive mindset and motivation is currently focussed on returning to your former state of health and well-being. Hence the validity of the word ‘rehabilitation’ – definition: the action of restoring someone to health or normal life through training after illness / the process of helping a person who has suffered an illness or injury restore lost skills.
Maintaining decades of motivation knowing that there’s no end goal that’s achievable is a different sort of psychology. Personally this is where celebrating the small things and not applying a rigid yardstick is of benefit. As you’re aware with MS there’s no consistency – what you can do one day, you can’t the next! Initially I was trying for rigid consistency and as I would have exercised in the past trying to work upwards from the baseline. These days I’m pleased with myself if I’ve done two or three things that day; even small things like watching tv doing foot eversion moves. Getting to the gym is a big pat on the back!
I’d also add gratitudes to maintaining a positive mindset – you are applying this in appreciating your status as married, with friends, well paid professional position etc, aren’t you.
Having said all this I’ve not been having to maintain this long term as I was only diagnosed 6 years ago and with late onset MS, being over 50. Unlike so many others it’ll not be some 40/50 years of working to stay upbeat and positive. Most significant of all is that my MS has been stable since receiving Alem in 16/17.
Perhaps you should do one of the questionnaires with your list of factors for a good handle on what PwMS utilise and of course allow them to add additional comments to capture anything else.
Great to hear you’re continuing to make good progress!
I can’t help wondering how positive and motivated you would be if instead of improvement you aim was to slow down worsening of symptoms while living with overwhelming fatigue.
Thank you – another interesting blog. All that you say is true. I am 15 years post MS diagnosis, post hip fracture and osteoporosis diagnosis. Over the years I have had NHS MS assessments and rehab sessions but that was for a defined time.
I am in the fortunate position of having access to the fantastic Chilterns MS Centre ( starting falls prevention programme in New Year ) . This facility is available to all on a small
Membership fee and donation basis and I cannot recommend therapy centres highly enough for physical, community and emotional support and rehab.
I am also fortunate to have resources for private physio and personal training which makes a big difference.
I’m not medical and managing a progressive condition is hard enough without planning the rehab programme to support it – this is important for the medical profession to consider.
What is useful and applicable to your practice in neurology is that the accident has enabled you to reflect on the downsides of being ill. (Are there any good aspects? Probably not.) When an heretofore well practitioner is suddenly confronted by sickness or trauma, it is an opportunity to put oneself in the patients’ position. I suppose your medium term aim is to return to normal. Your longer term aim as I see it , is to apply what you’ve gained in knowledge and insight about recovery and about yourself as a practitioner to your practice in future….? In which case when respondents are saying, “Yes, but put yourself in my shoes”, they’re missing the point of what you’re trying to do.
One question though. How the heck did you get your paws on your x-rays so quickly. I just got my MRIs in the post this week and I applied for them in October. I despair, because I wanted to compare my NHS ones with the one I have from when I lived in France. There you hold your own records. When I took it to my annual review the MS nurse was really excited. “We never get to see any MRIs!” Therefore I couldn’t make the comparison because even she didn’t have it. How dumb is that? Who holds the keys to these data? The Securitate?
Prof G,
What are your thoughts as to why so many patients on Ocrevus get worse (balance/walking) after starting treatment? Should treatment be stopped (experimenting with extra infusions to see what happens is a bit risky)? From your experience do these people get better after discontinuing treatment?
Where is you evidence for this?
Hi MouseDoc,
Apologies for the delay in getting back to you (I only saw your response). I did exaggerate when I wrote “so many” patients get worse, but I have spoken to quite a few patients who experience worsening of symptoms. What’s weirder is that they had MS for many years before starting treatment (so they know the pattern of their MS). They experienced some sort of balance issues within 3-4 months after completing their first dosage which is out of the ordinary. I too am one of those… Any idea what could be causing this? I wouldn’t want to get worse…
I have heard of some people not doing well…but this is a problem for every single MS drug maybe the neuros can give thier experience
Thanks MD,
From what you heard, did this mean that people improved after the drug was discontinued? Or was irreversible damage done? Or take your chance and depends on the person (as with all things MS related)?
I dont know I was in Athens when this issue was brought up by a neuro there