How is Prof G doing?

H

Barts-MS rose-tinted-odometer: ★★★★★

#UseItOrLoseIt 

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.

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.

33 comments

  • Bravo Dr G !! Vous êtes un exemple pour moi qui ai la SEP et un cancer, et vos efforts de réhabilitation sont un bel encouragement. Merci pour vos nouvelles fraîches.

  • So happy to hear report on your Stellar Progress. It going to be awhile. You’re farther ahead than many who have had similar injuries. I always told patients it took a day to heal a millimeter of nerves. So neck to finger is
    800 mm. That’s a long time. You can’t make that happen any faster. I believe it is the Body’s way of making you lay down to heal. Get lots of rest! I’ve been using Apollo neuroscience device and Oura ring to help heal nerves, balance My Neuro system, assess my sleep, activity parameters. Best Wishes!

  • Excellent news ProfG!! I’m really really happy for you! And I’m sure you’ll do even better since you’re an advocate of “use it or lose it”.

  • Re. ‘However, sitting on a saddle is very uncomfortable with a fractured pelvis, albeit it a healing pelvis. ‘

    How about using one of those pedal exercisers, for the cardio exercise? around £15, from mobility shops and online shops. You can sit on a sofa or standard chair and pedal, probably more comfortable .

  • Really pleased to read about your progress. Do bear in mind that having, for example, balance issues is mentally and physically tiring as well – never being able to take walking for granted without thinking about each step is exhausting – this will reflect in your rehab and day to day life. Well done on your positivity and thank you for your reports.

  • I love that you don’t just say ‘ I’m fine thanks’ but give a hugely detailed and empathetic response which I’m sure will help so many people .
    This accident will make you an even better neurologist, doctor, consultant, and I’m sure husband (and father , forgive me I don’t know if you have any) it has certainly made you an even more valuable blogger .
    With many thanks and congratulations on your recovery so far , long may you continue.

    Sláinte chugat !

  • I was really happy to see that on Strava! You are making such a good recovery , it’s making me feel almost lazy.

    It’s now well over a year since I fell (slipped on a slippery thing while out trail running, can’t blame the MS) and probably fractured my pelvis. I didn’t get an x ray as I knew the treatment was the same whether it was fractured or not (and I didn’t want anyone to tell me not to run my next ultra). That happened in November 2019, and I think it was June 2020 before I could run with ease again. Since then I’ve been trying to get my fitness back without the usual measures of parkruns and races to tell me how I’m doing. My Garmin says there is still some way to go – and I still have hamstring tendon issues.

    NHS physio absolutely saved me many years ago. I have hypermobile joints and following a work-related overuse injury was finally set on the path to recovery and given the tools I needed. That’s when I took up running, actually. But now I pay for all sorts of private help in getting back to where I was – an osteopath, PT, running coach. I want to qualify for London Marathon which seems a crazy goal when I don’t even know if my qualification race will go ahead. But I’m training as if it is. The worst that can happen is improved fitness. Well actually there are lots of worst things that can happen, like getting hit by a car (that actually happened on yesterday’s run – I’m fine though) or getting Covid or having a relapse… but you get my point.

  • Hello ProfG,

    I’m really pleased that your recovery continues as well as being very impressed with your progress. How many people do a 10K walk every week?

    Your problems with balance resonate. Putting a coat on, heel toe walking and getting dressed standing up are dim and distant memories for me. Your comments on fatigue and concentration are the reasons why I had to take medical retirement.

    Rehab, like advanced MS, is a time consuming activity, so many things to do each day and everything takes so much longer. This requires perseverance and knowing that there is an endpoint when this will no longer be necessary. The bugger with MS is stopping rehab/physiotherapy is a backwards step and the problems get worse.

    Keep up the work on restoring your body. Yup it is a job

  • PS do you have any podcast recommendations?
    I always listen to the Guilty Feminist and I quite like Feel Better Live More, but I’m always looking for things to listen to on long runs.

    • I subscribe to the Audm App, which covers a large number of high-quality journalists. I also subscribe to Sam Harris and I use the BBC Sounds App. I also have several Audible books on the go at the moment. I think podcasts are so much better than video. Most of us are Zoomed or Screened out!

  • Good to hear, keep pushing forwards mate and you will get there.

    Don’t give up because our brains are relying on your brain and knowledge (as-well as other neuros & researchers) so keep up the good work haha.

  • Thank you for the update, Prof G. Your description of rehab reminded me of my own experience when a disabling MS relapse starts to resolve: there’s a wave of euphoria because it IS resolving, then over time some despondency when it becomes clear that the best efforts of time and rehab are maybe not going to set everything right. I hope very much that time and rehab do set everything right for you after your dreadful accident. You’ve giving yourself the best chance, so bravo and good luck.

  • Well done Prof G. Never giving up is what will get you back to (almost) normal. But I think you know that some function in some parts of your body will not return to 100%. That will not hold you back because you’re determined. Just as well for we pwMS. Wet the MS community, owe you and the BartsMS team so much. Being a driven doctor means you’re driven patient and that means optimising your recovery. Just don’t overdo it or I will have to continue freezing off the Cornish coast to stop you pushing it.

  • Thanks for once again providing us all with such an open, candid, and detailed account of how you’re doing since your accident. It’s good to hear that overall you’re making good progress!

    I do feel kinda guilty ProfG because I’ve been pleased at the fact your post shows you’ve still greater comprehension of how individuals are impacted by MS and thereby expanded empathy for PwMS due to your injuries and subsequent rehab. Have found myself thinking ‘Hells bells you wouldn’t wish this on him or any other HCPs!’

    It’s the extent to which some of what you say is so very pertinent to MS. For example: ‘Although I am doing balance exercises, my recovery in this domain seems to have plateaued.’ It is living in the plateaued world or of course the deteriorating world that is so irritating, undermining, distressing or frightening.

    You can confirm to your colleague that there’s not the guarantee of you giving up on your rehab exercises. Not everyone does give up, even if the motivation is to try and stay still as opposed to improve. Every day for five years since my diagnosis I make sure of having done at least three things a day. I’m convinced of not being the only PwMS who lives this way!

    You also say: ‘I literally spend 3 or more hours a day on my physical rehabilitation,’ When I experience my sense of loss days due to not being employed or lacking a sense of being meaningfully occupied, I remind myself just how much time and effort is involved in self care/maintenance – as you emphasis: it’s so time-consuming and uses up what energy you have! The rewards are in seeng improvement in your case, I sincerely hope! For those of us with MS I sincerely hope it’s in achieving a lower rate of deterioration.

    I also thought that I’d like to think in months to come you might utilise your experience in talking to groups of HCPs who work in neurology, to provide them with greater insight than is feasible via training and professional practice.

    Very best wishes moving forward.

    • Colleagues and friends have commented on the amount of time I spend on self care. It really is a full time job in itself!

  • Hi Prof and thanks for the post – no lesson missed from your experience and sharing it will help others. It’s the time frame which is often so useful to map out expectations. Your glass is half full and slowly filling.

  • You may find regular meditation helpful with your cognitive rehabilitation, allowing your mind to become reacquainted with a flow state.

    • Yes, I agree, time spent in a mediation calm state allows me to get more time with Flow, as you call it. I also more purposefully choose where to spend my more scarcely available flow. But If I squander it some days, I have learned to be forgiving. Self Compassion, rest, and calm state of mind, will gift you with greater physical capacity and cognitive reserve. So glad to hear of all your progress and thank you for sharing a glimpse of how life continues during rehabilitation. It is A peek for others who have never experienced such a physically and emotionally challenging task. Sending much good thoughts your way.

  • I am very glad that you continue to do well.

    I find, with my progressive MS, that the secret is a healthy mix of fighting on, not giving in, and knowing when to take it easy. It’s sometimes a fine balance. Mastery of the middle way is an art, not a science.

    All the best.

  • Thanks for the update! I was thinking about the fact that there were no more updates just a few days ago. Your good recovery is a great news! My former kung fu shifu used to say that neck muscles are the worst and most painful to train. When one falls on the back the sudden use of neck muscles to prevent the head from hitting the ground can cause quite a pain that goes on for days… and this is not even close to an accident with a motorcyclist!
    Being a person that works on knowledge I feel close to you as I remember when I had my last relapse: all of a sudden I was not able to think clearly, I couldn’t do my job easily and this was very stressful. I could not find answers to questions I usually answer in seconds. Luckily brain fog had gone and didn’t came back.
    I wish all your pains and troubles go away quickly!
    PS when you walk with prof K do you end up talking about work and MS or you can keep the talk off of it for the whole walk? I wouldn’t be able to do so 🙂

    • Just had a thought re the saddle: could you switch it out for a different one? Or use a padded cover?
      When I bought a bike in June I started with a secondhand bike. It was on the 10k ride back home from collecting it that I realised I wasn’t quite over my pelvic injury. By the time I was home I had decided to buy the gorgeous new bike I had test ridden the day before. I haven’t had any issues riding this bike.

  • Throwing this out there in case you are game: I´m wondering how you are processing the impact of the accident in terms of how you view yourself on the “do” vs “be” scale. With MS I had to alter my self-narrative of who I was when I could no longer do all the former activities- physical and cognitive. I am wondering how you are finding the grace to accept what is and who you are at this point in your healing journey. Of course I hope that you recover completely but your reality right now is not at 100%.

  • We care about you as we know how much you care for your patients. Our shared past, along with the many years under your supervision and concern, has amplified the trust and devotion that I (and am sure many others) have for you.
    You have a empathic, quick and brilliant mind, and massive determination. Give yourself time to heal. Be kind to yourself. Your recovery will be as close to full as possible. I know it…..

  • This is inspiring and very real. Pleased to hear your progress and wishing you all the best with your onward recovery.

  • Re: adherence to therapy: : surely there is nothing more boring on this earth than physio exercises!! We know we’ve got to do them, but sometimes, just sometimes, you need a break. One day off (say monthly) giving permission to your body and your mind to switch off, to forget harsh realities, twenty-four hours where you set your own agenda – can be beneficial. I’ve never had to follow such a drastic regime as described here, but where I’ve been monitored by a neuro physio over a few months and had a succession of exercise plans (and just when you get to grips with one, it’s changed to something harder!) a ‘day release’ has helped me comply. Just as with a normal holiday, I emerge revitalised, motivated and better able to push on. Very best wishes,

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