Transverse Myelitis Awareness Day 9th June 2023

Transverse Myelitis Awareness Day takes places on or around 9^th June each year. The aim is to raise awareness about the condition and make a difference to the lives of people affected by TM and related conditions.

Raising awareness helps people better understand and support needs of an individual with TM. Sharing information about a rare condition such as TM helps reduce the feelings of isolation people may have. It also allows health and social care professionals to provide the most appropriate treatment for their clients, and help those clients manage the impact of their condition.

Transverse Myelitis (TM) is a rare condition that occurs when both sides of a single segment of the spinal cord become inflamed, causing damage to the myelin sheath protecting the nerves resulting in scarring or lesions. This impairs the ability of the spinal cord to transmit information through that level, often resulting in symptoms of muscle weakness in the legs, and sometimes arms, partial or complete paralysis, unusual sensations or numbness, bowel and bladder problems, autonomic dysfunction, sexual dysfunction, and loss of control of breathing.

The precise reason for the bilateral inflammation seen in TM is unknown, but it has been associated with a range of viral and bacterial infections, that often become apparent after the inflammation has receded. It has also been associated with autoimmune diseases and cancer TM can occur at any age, but most commonly affects children between the ages of 10 and 19, and adults between the ages of 30 and 39.

As TM occurs at a single level within the spinal cord, the point at which the damage occurs determines the extent and range of symptoms experienced.

Like many neurological conditions leading to autonomic dysfunction, immobility and inactivity, patients with TM are at risk of developing chronic urinary tract infections, chronic pressure sores, chronic pain, spasticity and depression, as well as obesity, diabetes and heart disease.

Physiotherapy can be effective in addressing the physical symptoms of TM, improving function and promoting recovery. Depending on the individual, therapy sessions are likely to include muscle stretching, muscle strengthening, proprioception and balance retraining, facilitated standing, gait re-education and exercise.

At PhysioFunction, we are experienced in providing treatment for individuals with TM and our range of rehabilitation technology can be invaluable in restoring function, managing pain, improving range of motion, strengthening muscles and re-educating walking.

Devices such as the Alter-G anti-gravity treadmill, Functional Electrical Stimulation (FES) assisted cycle, LiteGait body weight support system, MindMotionGo and, in some cases, robotic exoskeletons such as the Rex, FREEWalk and ReWalk can be used to improve muscle function, facilitate weight bearing, redirect attention and/or re-educate movement.

Additionally, our hydrotherapy service is used to provide therapeutic exercise and movement in water. Using the buoyancy and resistive properties of water alongside heat, can aid movement, reduce pain, improve balance, increase strength and promote function in patients with TM.

Lisa Case Study

Lisa is our marketing assistant at Physiofunction and has been working with us for around 7 years now. Here Lisa tells her story.

I enjoy live music and travelling and still do! Travelling takes a lot more planning now and I must be organised! I socialise with my friends and like to go to the theatre.

I was first admitted to hospital in May 1999 when I was 29 years old, with a suspected diagnosis of Multiple Sclerosis. However, after being in hospital for 3 months it was decided my diagnosis was Transverse Myelitis (TM). The conditions both have similarities, but MS is a condition which has different variations, but is eventually going to get worse. Transverse Myelitis is monophasic and will occur once in varying severities. Some people make a full recovery, some partial and some make no recovery.

TM has affected my mobility as I am now paralysed from the waist down and have to use a wheelchair full-time. TM has not just affected my walking, being immobile causes pressure sores, which can only be healed by bed rest along with recurrent UTI’s and painful leg spasms. Being in a wheelchair affects digestion, bones density, cardiovascular health, bladder and bowel management, which initially had a huge impact on my mental health. To help I joined support groups and talked to people who were in the same or a similar position to me. This allowed to accept my condition and the situation I found myself in.

I first met Jon Graham whilst in hospital and he was my primary physiotherapist. Once discharged we kept in touch, and I saw him as a private client from 2009 on a monthly basis where we started with hands on therapy to maintain range of movement and upper body strengthening exercises. To begin with I wasn’t strong enough to stand in a standing frame, so Jon started with the tilt table to allow me to be upright, and as I progressed, I could eventually use the standing frame regularly. He also introduced me to electrical stimulation using a special device that helped restore some of the muscle bulk in my buttock muscles.

My goal was and is to be as independent as possible and keep fit.

In 2016 Jon contacted me as he was working with another client Andy Ibbott training for the Marathon Des Sables and they were fundraising. Would I like a position at Physiofunction to market this challenge? Yes, I would! The rest as they say is history.

Since coming on board as a member of staff I have had access to FES Cycling, Hydrotherapy/Aquatic Physiotherapy, standing frames, MindMotion GO, Galileo Med-35 and two Exoskeletons.

After a problem with my hip, I haven’t been able to use all of the equipment, but I still use the standing frame weekly and plan to go back to Hydrotherapy and practice my swimming soon.

My favourite thing about PhysioFunction is the ‘family’ atmosphere and how helpful everyone is and how PhysioFunction are at the top of their game with rehabilitation equipment and devices to help a person’s rehabilitation experience. I really enjoy seeing our clients progress in their rehabilitation journey and being a part of the marketing team allows me to see this.

Lisa’s advice for someone that has TM, “It is hard to give specific advice as everyone’s experience and symptoms differ. However, general advice would be to remain positive and keep busy if possible. Some doctors or medical professionals are not experienced with TM, so it is a good idea to do as much research yourself as possible and become your own TM expert!

Also join online groups of people who are going through the same things as yourself as they will understand the most and may have answers to some of your questions.

Lastly, make sure to join the Transverse Myelitis Association who hold support group meetings around the country and could signpost you to your local one https://www.myelitis.org.uk/ “.