Barts-MS rose-tinted-odometer: ★★★★★
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.