Transverse Myelitis Awareness Day
Transverse Myelitis, or TM, is a rare neurological condition. It is caused by the swelling of the spinal cord, which damages the nerves and can leave permanent scars or lesions. These lesions interrupt the communication between the nerves and the spinal cord, and the rest of the body, leading to symptoms like loss of sensation and movement.
For TM Awareness day this year we sat down with two individuals who have lived through the illness to better understand what life with TM is like, and how it affects a person even after recovery. Gill, an occupational therapist and moving and handling expert, and Trish, mum of two and formerly a full time carer for her youngest son Lewis, were both kind enough to not only share their experiences but also what it was like to go from carer to cared for.
What is Transverse Myelitis
Transverse Myelitis can happen to anyone, at any time, and with very little warning. This was the case for both Trish and Gill. For Gill, she woke up one morning feeling completely normal, and two hours later she was in an ambulance with paralysis. For Trish the situation was similar. Trish was the full time carer for her youngest son Lewis, who has a number of complex disabilities. After taking the night shift to administer his night time medicines and feeds, she was taking a shower when a creeping numbness started to make it's way up her feet and legs. Like Gill, within a few hours she was in an ambulance on her way to the hospital.
This is a very common symptom of TM. Pain and or tingling / numbness in the legs is common. This often starts in the lower back and then shoots down the legs, though the pain symptoms vary depending on the parts of the spinal cord that is affected. When at hospital Trish started to get some feeling back but it was mostly nerve pain.
Weakness in one's arms or legs, feelings of heaviness or, like Trish and Gill, total paralysis are also common symptoms of TM. It can also cause abnormal sensations like numbness, tingling, cold, or burning. Some people also experience bladder and bowel problems. This may include needing to urinate more frequently, urinary incontinence, difficulty urinating and constipation. When Trish arrived at the hospital she was catheterised to prevent any issues for her.
So what causes it?
There are various causes of TM, though the exact reason that some people develop it remains unclear. Sometimes there may be no cause at all. This was the case for Gill, who was perfectly healthy one day and then in hospital the next.
Some viral, bacterial and fungal infections that can affect the spinal cord have been known to cause transverse myelitis. In most cases the inflammatory disorder appears after recovery from the initial infection. Some of the viruses known to be linked to TM are as follows:
- Herpes virus, including those that cause chicken pox and shingles
- Entoviruses eg poliovirus
- West Nile
- Hepatitis B
- Mumps, measles, rubella
- Lyme disease
Other virus may trigger an auto-immune response without directly infecting the spinal cord. Similarly the list of bacterial infections above is not exhaustive. Very rarely parasites and fungal infections may infect the spinal cord. More commonly however there are a number of inflammatory conditions that appear to be linked to the disorder.
This causes inflammation and myelin loss around the spinal cord and the nerve in your eye that transmits information to your brain.
Conditions such as lupus, and sjogren's syndrome can result in inflammation of the spinal cord and result in lesions.
This leads to inflammation in many areas of the body including the spine.
This is a disorder of the immune system that destroys the myelin sheath surrounding the nerves in one's spine. TM can even be an early sign of MS.
This was the case for Trish. After a second MRI six months after the onset was done, more lesions were found on her spine, and this time in her brain also. After some online searching Trish and her husband wondered if the TM had been brought on by MS. This was initially dismissed by physicians until a new consultant became involved in her case. The new physician decided to run a series of blood tests, resulting in Trish's MS diagnosis.
Both Trish and Gill had MRI's and lumbar punctures which helped with their diagnosis.
Initially upon arriving at hospital, both Gill and Trish received IV steroids to halt the progression of the TM in it's tracks and prevent it from getting worse. These worked initially but the damage was already done.
For both of them this was followed by inpatient rehabilitation. As someone who had been on the other end of this kind of moving and handling career, Gill was now finding herself on the end that all the patients she'd cared for had been. Both in hospital and out of it, moving and handling equipment was crucial to help both women gain more function and independence back. With the help of the parallel bars Trish was able to walk a little, though she is a full time wheelchair user to this day. Similarly, Gill would use the bars and hand rails for support when walking during rehab.
This kind of equipment, and more, would become a large part of both women's lives. It already had been a large part of both of their lives, for Trish as a carer to her son and Gill as a practitioner. With damage to the spinal cord, nothing is simple. Both women use a wheelchair, and whether it was only during rehab for Gill or long term for Trish, they have benefited from specific aids and adaptations to make transferring in and out of said wheelchair easier. In hospital staff used various aids like the SaraSteady and the Return 7500i, or the Rotunda. These sorts of standing aids allow people to help transferring themselves from one seat to another.
Using these sorts of aids was not reserved for hospital. Gill had hand rails installed at home, and had a bath board fitted so that she could sit in the shower, however she is now fully independent, and only uses the hand rails now. Trish has since converted her garage into a ground floor accessible bedroom, complete with a wetroom. She uses her Rotunda or her Etac Turner Pro to transfer from her bed to her chair or commode, as unlike Gill she has not regained the ability to walk, and is a full time wheelchair user. She has carers who come in 4 times a day to help with various duties and day to day activities.
Thanks to adapted cars both women still get out and about to enjoy life. Gill drives a car adapted with hand controls so that she can get herself around and out of her old farm house, and Trish has an Allied Mobility van which is adapted to have space for two wheelchairs (herself and her youngest son), 3 carers and has 3 seats up front for her husband and eldest son.
Both Trish and Gill have both had to adjust to life as the ones being cared for. Though it has been a steep adjustment to make thanks to supportive people in their lives and the right equipment to support them, and Gill has managed to join the ranks of the very rare cases of people who have recovered full independence.
We hope that you have found this article helpful.
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