In October 2018 I was on holiday in Japan – a three-week ‘holiday of a lifetime’- initially carrying what I thought was a minor trapped nerve injury in the right side of my neck. Within a week of arrival things started to get significantly worse as the discomfort moved to the left side of my neck and then extended to both sides simultaneously. Within the space of one afternoon I became unable to lift my arms above my chest and my legs started to weaken. Deterioration continued throughout the evening and night, leaving me unable to stand the next morning.
As luck would have it, we were due that day to be travelling to Kyoto and our guide took us immediately to the Kyoto Red Cross Hospital. Within 5 hours of entering the hospital I had received both MRI and CT scans as well as x-rays. By the end of the afternoon I was unable to do anything other than lay flat, unable to lift my head, arms and legs.
I was advised that I had “myelopathy” which then had to be explained as neither myself, my partner (Zoe) nor our guide, had heard of the condition.
As more specifics were explained the horror of the situation became very clear. I had a lesion on my cervical spine just below my brain but, significantly, when I asked the neurologist whether I would make a recovery he answered “Yes”; a full recovery? “Yes”; how long…. no answer!
Basically I was advised that my condition was extremely rare but with immediate steroid infusions the condition could be stabilised and thereafter immediate physiotherapy could commence.
I was subjected to a number of tests to eliminate many of the conditions that could cause TM and all tests came back negative.
I spent two weeks in the Japanese Hospital and was eventually repatriated to the UK via my travel insurance company Staysure (who were excellent). Unfortunately my private medical insurers (Vitality) were appalling and I was transferred immediately into my local NHS hospital which unfortunately did not have a neurological department. After two and a half weeks without physiotherapy (save for a few exercises given to me in a booklet) I was able to enter a new private neurological rehabilitation facility run by Hobbs Rehabilitation at the Bramshott Grange care home in Liphook, Hampshire.
Throughout this period my body weight had dropped by around 22lbs and I had suffered considerable muscle atrophy in my quadriceps and upper back muscles. Concentration for anything more than a few seconds was a struggle and my UK neurologist advised that my brain would basically shut me down on a regular basis from hereon.
My stay at Bramshott Grange started on the 20th November 2018 and I finally returned home on my own for the first time on the 19th of December.
I entered Bramshott Grange just about able to walk on crutches. I could not lift my left arm more than around 20 degrees and my right arm was probably just over 90 degrees. During my stay at Bramshott I had 3 or 4 hourly sessions of physiotherapy on every weekday with critical rest in between. My attention span was improving but that’s not something that could be said for bladder and bowel control; balance; pain and nerve sensations or understanding of how this all came about! When I returned home I could raise my right arm above my head and could walk unaided, albeit gingerly. I had some minor strength increases but I would say I was probably around 25% capable compared to where I was pre-TM.
The next few months were focused on improving strength and mobility with a specific objective (set by me) to stop paying for professional treatment once I could raise my left arm above my head. The reason for this? The considerable expense incurred in the treatments since leaving hospital (the very reason why I was determined to do something to help others). Relying on the NHS would have delivered maybe one 40 minute session of physiotherapy every week (at best) and I had to fight my private medical insurers to get a contribution from them as they did not recognise Transverse Myelitis and initially refused to pay anything.
Having survived Christmas on my own at home (albeit with my partner, Zoe’s, dog for company) I started 2019 with my ongoing recovery as priority over everything else in my life. I set a three month target to give absolute focus and committed to a couple of short stays at Bramshott Grange and three sessions a week in their outpatient facility in Liss. I combined this with four weeks at Hobbs’ upper body facility in Bristol (using specialised equipment by Tyromotion) and a week in their hydrotherapy centre near Shepton Mallet in Somerset.
Regular massage sessions in Liss and raquetball with a mate (at the Lee-on-the-Solent Tennis and Squash Club) all made for a busy programme – with an added ‘bonus’ of competing (for Hobbs) at the Inter Spinal Unit Games at Stoke Mandeville Hospital in April (see separate page here).
Progress was slow but measurable. Everything was hard work and, racquetball aside, came with a cost. Commitment therefore had to be 100% and I don’t think my head dropped at any point.
Experiences at the Spinal Unit Games led me to seek out specialised wheelchair tennis coaching and this became another activity for a few weeks – before deciding that my upper body strength was insufficient to move the chair as quickly as I needed to and, due to a lack of potential opponents, I was simply not going to get as much game time as I needed to. Ultimately however I also had an issue competing in a chair when I could walk – maybe a bit of a stupid call, but I considered it better to be hitting a ball standing up than having others continually question what I walked my chair in to the arena and then sat in it!
I scaled down my trips to Hobbs to once a week until the end of June – at which time I had managed to achieve my goal of lifting my left arm above my head.
It was then all down to me…
On my own:
My objective from the summer of 2019 onwards was to recover as much of my former physical self as possible. It was becoming clear that I had no real control over my body’s internal workings and I had already resigned myself to having to pee through self catheterisation and to live with near constant constipation. These problems were manageable (albeit frustrating) with some control of the former aided by one particular drug. That was (and as of October ’21) still the only drug I use, as I refuse to take anything to nullify the main continual reminder of my TM – the searing heat sensation of nerve pain.
I chose cycling as my main focus, backed up with a gym routine planned with one of my Hobbs’ physiotherapists.
I purchased a second hand Wattbike Atom on ebay and started to use it in May 2019. I wasn’t overly enthused for the first few weeks but eventually got into a bit of a routine and my power was consistently around 100 Watts on 1 hour routines.
My very first road ride was a disaster – I was close to tears as the pain and difficulty was enough to cause me to question whether it was even a practical pursuit. I left it for a few more weeks and eventually climbed back on a road bike in July 2019 and worked out a safe route in Norfolk that ensured I avoided main roads (and crossing them). I chose not to ride at home due to traffic concerns and the lack of support if I encountered a problem. Combined with the gym and playing doubles tennis twice a week (badly, due to my inability to run) I slowly saw some improvements in my overall fitness and strength levels.
Everything continued into 2020 and then was compromised heavily by Covid-19. I had to self isolate and therefore lost my cycling rides in Norfolk for 4 months. With the gym shut (and no tennis) I was basically left with the Wattbike and continued using that many times a week until ‘normality’ returned (promptly not using it for 4 months!). My power was around 40% up on 12 months before and the fact that I had adopted a dog for lock-down also helped with daily walking (needless to say he stayed!).
The pain of TM stayed however, with no signs of the active heat sensations easing and the urogenital issues unchanged.
Earlier in the year I had planned to visit the Hobbs’ Rehabilitation unit in Lambourn, Berkshire (at the Injured Jockeys Fund, Oaksey House facility) where they had use of both an anti-gravity running machine and hydro-pool based treadmill. This had to be postponed due to Covid-19 but I managed to secure a two week stay in Sept/October 2020 and this helped me gain some confidence with my balance although the hoped for ability to run again was not forthcoming!
To cut a long story short my activities on the bike, Wattbike, tennis court and gym carried on through the winter and in to 2021. Power slowly crept up and the decision to set up Challenge-TM became an absolute focus from the spring of 2021 onwards.
Today (August 2023):
The Ventoux stories are covered elsewhere, but a number of issues and problems have arisen or simply become exacerbated through recent years:
- A 2 week break from activity (to rest for a cold) during May ’21, seemed to cost me months of progress. This has now been proven on more than one occasion, meaning that ‘motion is lotion’ is absolutely critical in order to maintain at least a level of consistency with my condition.
- A 4 week+ break following the Ventoux climb in 2021 really did set me back months, as my first bike ride back was worryingly slow and very uncomfortable. The second (the following day) was even worse with resultant pain throughout my body causing me to rest for a day. The pain experienced after my first couple of rides did diminish marginally two days later and my time improved significantly despite stronger winds to contest. Still not good though.
- Neuro pain has worsened through time, to levels that are virtually intolerable; all other affected bodily functions remain as they have been.
- Fatigue hits quickly and hard – with little forewarning.
- Playing tennis when you can’t move your legs quickly leads to detached retinas when you can’t get out of the way! This then leads to cataract surgery and opens up a myriad of other related issues (further surgery awaited).
- My already compromised left knee has been condemned by my orthopedic surgeon as the TM related muscle wastage in my legs has exacerbated the onset of acute arthritis. One surgical procedure has been undertaken and replacement surgery is forecast for September ’23 (having been delayed considerably due to strike action in the NHS).
- Life still sucks!
What do I endure on a day to day basis?
The easiest part of the day is literally just before I get out of bed in the morning.
Any muscle group I use tends to cause my brain to generate the sensation of intense heat. The minute my feet hit the ground they start to burn. As the day progresses this burn basically feels like somebody is stripping the skin off my feet – and my toes feel the worst! As I begin to walk around I get the intense heat sensation in my legs and if I’m cycling this results in my upper back feeling as if a sun lamp is permanently switched on directly above it.
The pain is almost unbearable but I’ve come to the conclusion that as it is not actually pain (more a case of my brain simply getting confusing messages) then I should just live with it as a constant reminder that I have the issue. I do not want to take drugs if I can avoid it (although I have to take something to maintain bladder control, which combined with my self catheterising 5 or 6 times a day, helps me lead a relatively normal accident free life!).
Sensations from my chest down are very heavily compromised. A hot bath feels cold whereas cold water generates intense pain. I can’t really feel my legs in the true sense and if I drop something on my foot I can’t really feel it other than other senses telling me so.
I can move my feet very quickly but cannot move my legs quickly, so balancing issues can arise and ‘playing’ tennis (which I do as a doubles player when I can) is interesting to say the least!
When I stand up I do look like I have some serious issues, but these tend to fade away after a couple of minutes and, to the untrained eye, I probably look pretty normal (save for the walking cane, my erratic pace and inability to walk in a straight line!).
That said, if someone wanted to watch me try to mount or dismount a bicycle they would wonder what was going on as I simply cannot lift my leg over the saddle without having to lean against something (or someone) for support Having looked into this we feel it may be muscle fatigue which I cannot feel – something very evident when cycling as I really cannot feel any muscle ache when pedalling.
My balance is not 100% and I can tire very suddenly after what would appear to be minimum effort. A morning in my office (which I can do no more than twice a week) will generally leave me sleeping mid afternoon. Bedtimes tend to be well past midnight (which then has a knock-on effect to the following morning). I was advised by a neurologist that I just simply have to live with whatever my body chooses to do. It’s certainly very clear that that is correct, as any efforts to buck the trend will simply shut me down!