Edwina talks about her experience of inflammation of the spinal cord and how the team at QEF have helped her walk again with support.
“I was previously a retired but busy hands on Nana to 4 lovely grandchildren. My daughter has 3 children aged 8, 3 and 2 and my son has a stepdaughter aged 16. Life was never dull and always hectic and good fun. In truth they were my saving grace since my husband died of a brain tumour 9 months prior to my own illness. They were such a huge help in getting my life back on track. It has been a difficult 3 years, as we knew from the outset that my lovely husband would only live for 12-18 months after his diagnosis.
Before retirement I worked for the NHS, initially I trained at St. George’s and subsequently worked for many years as a radiographer and in later years as a phlebotomist at Epsom hospital. So I have plenty of hands on experience of medical matters but no experience of rehabilitation, this was all very new to me.
One Monday morning when I was due to meet my daughter for coffee at our favourite local shop I felt very strange. My leg’s weren’t moving as I thought they should, certainly not going where I thought I was placing them. So I returned to my flat to call her and as I walked through the front door I collapsed, my legs buckled underneath me.
Fortunately she was able to call an ambulance and join me for the trip to our local hospital St Helier. Thus began the weeks of tests and treatment and I was moved to St George’s neurological unit after 2 weeks. Following many MRI scans, CT scans and several lumbar punctures I was finally diagnosed with Transverse Myelitis which is a rare condition caused by inflammation of the spinal cord and usually follows a virus, but I don’t remember having had one. During my 10 week stay in hospital I was treated with steroids and immunoglobulin infusions which brought about some movement in my right leg but the left leg was still completely dead and I had to remain catheterised. Due to the inflammation occurring at the bottom of my thoracic spine I had lost use of everything below the waist whilst my trunk and arms remained active.
Such a long stay in hospital, completely bed bound and with limited physiotherapy, my leg muscles had wasted away. I hadn’t been allowed to stand up or shower and life felt very miserable and restricted to say the least. I understand that my nerves have got to reconnect and the muscles have to be strengthened and be reminded what to do and how to do it and that’s where the all important next stage of treatment would come in.
I was pleased to know that a rehabilitation program may help my recovery and delighted to discover that QEF would accept me for that next stage. They were a charity that I had heard of, seen their shops in my locality and heard very good things about them. My relief was immense once I knew that I would be transferring to their care and they didn’t disappoint.
On my first day at QEF I was greeted with a superb lunch and that long awaited shower, followed by a lengthy assessment by the physios and occupational therapists. I must take this opportunity to say how wonderful the incredible, professional and very expert team of therapists are. I was soon to discover that they work very hard to try all sorts of different exercises and techniques to get your muscles working again and to stand you up on your feet as soon as possible. They do it all with such kindness, encouragement and huge amounts of enthusiasm.
I’ve been at QEF for 6 months now, progress is slow with my condition but there are continued improvements. My initial sessions started with me in a harness and hoist with a walking frame and 3 physios helping me. I progressed to a 4 wheel walker with 2 physios and recently to a small walker and only 1 person helping me, so we are moving in the right direction.
I’ll be going home very soon to a new ground floor flat that I have recently bought. It is wheelchair friendly and my O.T . here has visited the flat with me to assess its suitability and equipment required for me to live independently. I’ll have to have carers to help me with showering and dressing as my legs are still not strong enough to support me for long periods, but hopefully as I grow stronger my need for help will become less. I have never been told that I’ll be able to walk again but we are all working to that goal !!
I shall enlist help from a private physio when I go home in order to keep the momentum going, as there is a long wait for treatment in the community. I really don’t know what my future holds but one thing I am so grateful for is the help and support I have received at QEF by every member of staff that I have encountered.
During my stay I have been lucky enough to have garden visits with my grandchildren. Covid has restricted a lot of visiting but the grounds are lovely and ideal on sunny Sunday mornings when my daughter brings here 3 children to see their Nana. Violet, the 8 year old pushes my wheelchair while Nancy and Wilfred race us on their scooters. My disability doesn’t seem to bother them, they are just pleased that I am still with them and Wilfred is very happy to climb up on my lap for his cuddles. If they are so accepting of my situation then I should be too.
Certainly my husband who had wanted so much to live and watch our grandchildren grow up would be telling me to make the most of my time, be grateful that I am still here and embrace every moment. Most of all he’d tell me to work hard to get better, I owe it to him and our wonderful family to do just that. Certainly all of the many and varied staff here have played their part to get me back on the road to recovery and I thank them all from the bottom of my heart.”