By Ted Reddick
I would never have guessed that my dream holiday to Japan in 2018 would have seen me spend two weeks in the hospital, paralysed from the neck down, from a condition that I had never heard of. Longitudinal extensive transverse myelitis (TM) at C3 to C5. It started with a bit of discomfort in my neck and shoulder but developed rapidly – in under 24 hours – to rob me of virtually everything. I woke up the morning after diagnosis thinking a multitude of thoughts; would I get home, would I drive/cycle/ride a motorcycle again, would I be able to walk/run/play sport, what could I do in the Paralympics? The list was endless.
Physiotherapy started the following day and continued for two weeks while I remained in the Kyoto Red Cross Hospital under the care of two young neurologists. Things progressed rapidly. My sheer grit and determination was fuelled by the words of the principal neurologist that I could recover. Better to hear that than the opposite, so I didn’t give up. After my travel insurance flew me home to the UK, I was left in a local hospital – not the greatest experience of my life – and, from a personal perspective, one that could easily have robbed me of my positivity. Fortunately, we came across a private team of neurological rehabilitation experts, and at great financial cost, I got back on the physiotherapy and recovery trail. I spent many weeks in a care home, undertaking four one-hour sessions every weekday and then on to twice-weekly outpatient therapy. Fortunately, my brain-to-feet communication was quick so I could drive. However, bizarrely, I couldn’t move my legs quickly. I had weeks of specialized upper body therapy and a week of hydrotherapy – all in an attempt to recover the twenty-two pounds of muscle I lost and rebuild my strength.
To cut a very long story short, as a former racing cyclist and, pre-TM, active rider, I eventually climbed back onto a bicycle with great difficulty and have used that as my primary means of exercise since mid-2019. Cycling was initially interspersed with some gym work, but now it’s backed up twice a week, by me standing precariously on a tennis court, waving my racquet at any ball that gets too close! In 2021, I decided to challenge myself to cycle up a mountain, Mont Ventoux in France, to raise awareness of TM and funds to assist others with TM with the cost of their rehabilitation therapies. I experienced a catastrophic shut-down only three miles from the summit, which left me unable to climb off the bike, support my weight, or walk for many hours. I went back to the same spot four days later and finished the ride. I raised over £32,000 and am going back next month (September 2022) to try again with the objective of completing the ride non-stop. It’s not going to be easy and, with increased pain throughout my body, extremely uncomfortable, but I can’t give up! To date, I have spent £3,000 of the funds raised to assist others with transverse myelitis. So far, these funds have been used to assist two women (in the UK) with the costs of additional neurological rehabilitation.Those who have been diagnosed with TM can get involved and receive this support by contacting me through my website. All need to be aware that payments are to cover and/or assist with therapy costs for those who are struggling to cover them – and have a desire to work hard like I did.
To put this all into perspective, I live with pain from the minute I stand up in the morning. Every active muscle group causes my brain to tell me that it’s pretty much on fire. My temperature and touch sensations from the chest down are heavily compromised. I struggle to stand and walk and am always finding new bruises and cuts on my legs and feet! I self-catheterise and am chronically constipated. I fatigue very easily, which is getting worse, and usually sleep most afternoons with a late night to follow. On top of all of this, I have a heavily arthritic left knee made worse by the loss of supportive muscle which needs replacing and recent eye surgery following a smack on the head from a tennis ball that I could not move away from. I know there’s a message in all of this. You can read my full story and learn more about my challenge on my website.
**Note: As of September 5, 2022, Ted completed his ride to the top of Mont Ventoux. He received pledges approaching £10,000 and now has close to £40,000 in total funds to assist those with TM.
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