Clare

I was a normal 54 year old working mum. A bit overweight but with no underlying health conditions.

I got the Astra Zeneca on 14/4/21 and had the usual flu like symptoms, but mine didn’t go – they worsened and by 2/5/21 I was admitted to RAH Paisley with a spreading paralysis.

They decided it was neurological and they don’t have a neurology dept so liaised with QEUH. It was 3 weeks before I saw a neurologist and by then I was fully paralysed to chest level. I had very little movement in my arms and was experiencing facial drooping, hearing impairment and trouble breathing and swallowing.I was transferred to QEUH Glasgow on 29/5/21 and the neurologist there thought at that time that I had vaccine induced Guillone Barre Syndrome but this diagnosis changed to Acute Disseminated Encephalomyelitis complicated by Transverse Myelitis which is basically massive inflammation in the brain and spinal cord.

I received numerous treatments starting with steroids and immunoglobulin then plasma transfusions and eventually Retuximab seemed to help. On 19/7/21 I started to move the big toe on my left foot – this was the first time I had consciously been able to move. I had slight improvements after this and was eventually moved to PDRU (physically disabled rehabilitation unit) now known as the Neurological Rehabilitation Unit on 30/9/21. I was being transferred by hoist at this time but with twice daily physio I learned to transfer using a zimmer and to walk a few steps. I was discharged on 10/12/21.

I was medically retired from my work as a civil servant in May ‘22.

I have done physio on a daily basis and can now stand and walk short distances with my zimmer. I have weekly visits from my physio and am attempting to use crutches. I’m pretty sure I’m as good as I’m going to be but we haven’t quite given up yet. My muscles seem strong but with the nerve damage I just seem to run out of steam.

I have a weakness in my hands as well and struggle to write I think that might actually be what got me medical retirement as I find it impossible to make written notes when on the phone and thiscauses problems with eating. I sometimes need my husband (now carer) to cut my food.
I can’t shower or do anything independently. I did receive the vaccine damage payment but the reality is it doesn’t clear your mortgage and modify a house for wheelchair use.