Rehab update: taking back control

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Barts-MS rose-tinted-odometer: ★★★★★

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.  

CoI: multiple

Twitter: @gavinGiovannoni                                              Medium: @gavin_24211

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

29 comments

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  • Good luck with the parkrun and the new lifestyle. I know quite a few pwMS cut back on their work responsibilities to allow themselves more time to do all the exercise and ‘good living’ that is necessary. Not always possible but good if you can manage it.

  • Professor-Doctor G,
    You are a health care professional blessed with a brilliant mind; a very nice person; a kind and giving man, who cares deeply for your patients; your blog has helped me care, in your fashion, for my hundreds of MS patients here in Southeastern Pennsylvania. I always wish you the best, steady, measured recovery.
    PS: I also do not know what I would do without the also brilliant Professor-Doctor David Baker ( I love his sense of humor to brighten my day )- and additionally the occasional additions by your associates )
    With warmth, appreciation and respect,
    Clifford Reed MD

  • “I have therefore decided to reconfigure my academic work-life… to focus primarily on preventive neurology, in particular, MS prevention.”

    MS prevention sounds like a tunnel without an end (or a cop out). We all know how to prevent MS – an ebv vaccination programme (I’m guessing vaccinating children before they are exposed to the risk of IM). Then there are the off shoots such as tackling obesity, stopping people smoking, getting people to cut down on alcohol, getting people to exercise more etc (but if any of these were really that influential, MD1 would have got MS years ago). We’ve seen hundreds of public health programmes to tackle these issues – some successful and some not.

    MS prevention (preventative neurology) will keep you going (academically) for the next 20 years. I wonder if it’s an optimum use of your talents? Your theory that MS starts in the brain and that the peripheral immune system response (leading to focal inflammation) is not the real MS is a real game changer. Smouldering MS as the real MS needs to be tackled to stop relentless progression. Who will take forward the work needed to address smouldering MS? No doubt the theory will be resurrected in 20 years time by a young MS researcher trying to make a mark. Too late the current readers of this blog.

    The Barts MS Blog has been an excellent source of information on drug trials and hypotheses on what MS is / does, but I fear is coming to an end. The mice doctors can’t be too far from retirement and I’m not too interested in MS Prevention as I’ve all ready got it!

    I wish you well in your rehabilitation. I think the move away from clinical work is a mistake and a massive loss to patients and those with MS who are interested in those who challenge established dogma about what MS is and how it should be treated. I think you got tantalisingly close to coming up with an approach to tackling the real MS / progressive MS – close but no cigar.

    • I have MS. My sister has MS. My father had MS.

      As someone with two children, and who has been able to find no information at all about how best to protect them from their (presumed) risk, the Prof’s decision doesn’t seem like a “cop-out” to me.

      The only way to discover whether a tunnel has an end is to walk (or run😏) down it. I’m very grateful to anybody who does so.

        • I don’t think it’s common to have such a cluster among first degree relatives, but my Neuros never gave me the impression they were astonished by it either. ¯\_(ツ)_/¯

      • I have MS and my aunt died of MS in her late 40s. I have two children. At this point in time I’d prefer the best brains to be focused on getting treatments which stop MS in its tracks – stop inflammation, protect nerves, encourage some repair (poly-pill approach). This would help people with MS today. Of course MS prevention is important, but it’s way out on the horizon. There are many diseases which can’t yet be prevented but there are treatments which limit the impact of these diseases so patients can live near normal lives. We are not at this point for people with MS. Losing Prof G to focus on prevention is a big loss to people living with MS today.

        • I view Prof G as an expert but he is not the only one, he just happens to have a social media presence where others we don’t hear about don’t. And lets not forget everyone else behind the scenes at Barts and every other facility working in the field here and around the world.
          He is doing what suits him and only he is qualified to know what that is.

  • A very wise decision indeed. Good luck with rebalancing your own work/life/wellbeing mix. Your posts, the ones I have seen since discovering this blog, have been a great read. All the best. David

  • I’ve got to agree with Sid here (bar a few comments). We appreciate all your efforts Prof, of course we do and we would all concentrate on our recovery in your position. However, who is going to collect the baton on your smouldering / progressive MS crusade? The drive for vaccines for this, that and the other will presumably explode post covid. On the other hand, those with established disease will be left like a captain-less ship.

  • If MS prevention leads to EBV treatment that also proves to be a genuine treatment for PPMS at last, then I have no reason to complain. It might, as I understand it.

    As someone who has had pretty much nothing but ‘smouldering MS’, to whom ‘relapse’ remains largely a mysterious concept, EBV research is the only thing capable of rocking my boat now.

    All the best.

  • Well, you’re currently one step ahead of me! I’ve picked up an injury (my osteo thinks knee bursitis) that has put my marathon training on hold. That race isn’t happening until next year now so I have time to heal and get stronger before my next race in October. I would normally train for ten hours or more per week. This has been cut down to a couple of hours of yoga and Pilates per week plus stretches several times a day. I was upset for a week but now I’ve found other things to do with my time – all those home maintenance jobs I’d been putting off, reading books, and volunteering at a vaccination centre. I can get away with the 2km cycle there pain-free though I know I wouldn’t be able to walk or run there and back. I’ll save my TED talk on bicycles as mobility aids for another time.

    I’m currently completing my Coach in Running Fitness qualification which involves training an athlete for an 8 week training cycle. I’m going to train my athlete for a faster parkrun when parkrun resumes in June. Are you following the couch to 5k programme? That would get you ready in time and allow for repeating a week or three if necessary. I know you know this but I also think you can’t hear it enough times: don’t push through pain.

  • Like those of us with MS you have to put your own health and well being first after the awful event of last year.

    What I can’t deny however is the fear of loss that accompanies any posts from yourself or MD that intimates the loss of the Blog or daily posts and replies. Consequently, I can’t help but agree to some extent to the responses from Sid and Beth.

    NDG provided a post a couple of days ago on the capacity for social media sites to help prevent depression in PwMS and I replied to say I don’t access any SM sites, but that I would feel negative without access to this site.

    Bart’s Blog is an anti-depressant, helps alleviate anxiety, engenders hope that smouldering MS or improved treatments will be forthcoming. It engenders healthier lifestyles etc too, and from C Reed’s reply it positively influences the way in which clinicians engage in their work with PwMS

    When I completed the Govt questionnaire on women health I described this Blog as a life saver/life changer and strongly advocated that every chronic condition the NHS deals with should have just such a site.

    This is where you metaphorically prevent MS – prevent it from rapidly destroying people and facilitating the best people can be mentally and physically.

    As you and MD plan your next twenty years into retirement, please don’t leave us bereft during this time period and if possible have your potential replacements in reserve.

    THANK YOU SO MUCH FOR ALL YOU DO ON BEHALF OF ALL OF US WHO ONLY KNOW YOU VIA THIS SITE.

    BTW – hope the rehab is heading back in the right direction.

  • You amaze me Professor Gavin! I recently had an appt w/my MS neuro here in my Southern New England State & we had a great conversation about your blog when I brought up how I follow it and what I learn. I mentioned knowing what I medically went through with a major surgery complication & still go through on top of other health issues & progressive MS, and that I am in awe of you seeing your recovery, what you do for the MS community, etc. My Dr said he knows/has met you & complimented how brilliant you are & he as well reiterated how amazed he is at your recovery. You are a special person & revered by many. You are definitely needed here in the MS community so whatever you need to do to be able to focus on yourself, please do it. Let the other’s (🐀,🐀🐀) take up on this blog and keep it rolling, I’m sure they will keep us updated on your studies, health, accomplishments & setbacks. It took me a long time to come to the conclusion that having way too many responsibilities made it impossible to get anything accomplished. My mind could be compared at one time to that tv show called hoarders (darn MS brain)… Once I started letting go & realizing I couldn’t do it anymore, my mind was in a much better place and was able to actually focus more effectively so that I could actually achieve something and complete stuff. I am personally sending you a world of thanks for everything you do. 🌟

  • Hi,

    I am a person with advanced MS but I am is driven as you are. If you were my consultant and I had had the same accident you would have insisted that I take at least 6 months off from work. You were determined to prove to others and yourself that this accident was was only a glitch. A friend of mine heard what had happened to you and said it would take you several months to get back into action.

    Please, just listen to your body and take it easy.

  • I agree with Sid !
    Unsurprising however that after such an accident, and your workload, that you have made a necessary decision to look after yourself in a more life enhancing way.
    As for your abandoned patients…please ensure that our care is transferred to a Clinician who shares your philosophy, and sensitive communication skills.

  • A tough but very wise decision. Prof G, thankyou for all your breakthroughs, optimism and very hard work. Your compassion, honesty and your vision have changed people’s lives. Now it’s time to change your own life. You have provided a beacon of hope and given us all a lot of food for thought. Massive thankyou and I wish you a full recovery.

  • Sounds like a brave move. With a mind like yours you need time to think. We MS like ours, we need you to have time to think too! Between exercise, yoga, meditation, growing veggies, etc it’s surprising how much of the day can be spent doing the things needed to stay or get well. Getting that balance right is the best investment possible. Too many meetings, too much sitting, too much screen time – all endemic in our culture. Well done for stepping forward to something smarter.

  • Shares in the main airlines have plummeted by over 20% on this news on the upside Prof G’s Carbon footprint will be much reduced.

  • I am so glad to see you have made this decision for yourself. I think you will find that you are more effective in the initiatives that you stay involved in, instead of always scratching the surface. I know I reacted to my diagnosis by trying to be superwoman and this did not add value to work or my personal life.

    Your thinking about MS was ground breaking for me as I went on Lemtrada within 3 months of Dx.

    Your ground breaking thoughts are what makes the difference for us MS’ers!

  • The mere mention of the words “take/ing back control” immediately brings me out in hives and a fond nostalgia for all things European. The reason eludes me……………………………………………………….

  • I think the tool used to calculate the “Barts-MS rose-tinted-odometer” might be broken, lol. Five stars ?!?

    Glad Prof. G is reevaluating his priorities, as someone who rarely thinks of themselves first, I can relate. Maybe the five stars was how he felt writing this, however, I am saddened by the news of less Prof. G, so I propose we meet in the middle and give it 2.5 stars 😉

  • I’m late in writing to thank you for everything you have done for pwMS, Prof G. Taking this decision probably cost you some sleepless nights, but you do need to look after yourself, if you are to be able to stay fulfilled after such a life changing accident. It has to be about you. ‘About you’ will enable you to be as effective as you were pre-collision days, but in a different way. Reflecting on what you have achieved as well as where you now find yourself is clearly valuable. I hope your continuing recovery will enable you to achieve what your revised plans are. Thank you for being such a dedicated and inspirational HCP. Be kind to your self and your veggies will be the fresher for it. Post a video of your first park run. I’m semi-shielding until tomorrow then I’ll do a jog for you. When I am given the go ahead to return to my favourite environment, I’ll do another swim for you too.

By Prof G

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