It’s obvious from my clown-like struggles to walk there’s something wrong. “What’s the problem?” I’m asked, especially by those who knew how much I used to cycle and to go for long country walks.
The root cause is transverse myelitis (“TM”), a somewhat rare neurological disorder caused by inflammation of the spinal cord, which is the bundle of nerves that transmits signals between the brain and all parts of the body. The inflammation was low in my spinal cord so, in my case, only the nerves serving the lower parts of my body are affected.
TM affects me in several ways. I lack useful sensations from my lower body: they are missing (numb) or indistinct depending on where I’m touched, and there are unnusual feelings (paraesthesia); I can only describe these as “tinglings” similar to the pins and needles experienced my most people ocasionally. I also suffer from spasticity: my legs are very stiff (movement requires a lot of effort) and I have poor muscle tone (the muscles are unbalanced).
My ability to balance is poor due to disruption of the subtle signals between my legs and brain. If I’m standing and shut out visual clues by closing my eyes, I immediately feel disorientated and need to hold onto something to avoid falling over
TM and MS
The symptoms and effects of TM are very similar to those of multiple sclerosis (MS). In 2014 – 11 years after the first diagnosis of TM – I underwent several tests, including MRI scans of the spine and brain. These revealed I wasn’t developing MS and, according to the neurology consultant, I have an excellent brain for my age – something I’ve not tired of telling people!
Stairs and stairs are difficult: I need a hand rail to balance and it’s very difficult to lift my feet far.
I always go out with my wheelchair. Although I can walk short distances by pushing it (or with a couple of sticks) I soon need to sit down. On the plus side, my upper body strength is good thanks to the effort of propelling myself in the wheelchair.
We live in an area with several easy, level walks. I always try to walk a short distance, pushing the wheelchair to give me stability, until my legs become tired: the effort is good cardiovascular exercise. Then I sit down for a trundle! You’ll find details of some walks in the Woking area within the “Accessible places” section of this site.
Some people experience partial recovery from TM’s effects but, as there’s been no improvement in my case for a very long time, in my case the disabilities are permanent.
More about TM
If you’d like to know more about TM and how it affects sufferers such as me, you can read and download leaflets and booklets on the Tranvserse Myelitis Society website at www.myelitis.org.uk.
Their leaflet “A Guide for Friends and Families of those affected by TM” (click HERE to read it) is especially good. It helps you understand what it’s like to be affected by TM and describes the less obvious effects of TM which I experience but haven’t described above. I’m not asking for sympathy, but hope you find it interesting in relating to my condition.
Revised December 2011, August 2015 and February 2016