This is my story so far.
It all started Saturday 16 June 2018. I awoke with a slight weakness in my left hand. I did not think too much about it as for about 10 days or so previous I’d had a stinker of a cold and assumed the weakness was related. The weakness had got gradually worse throughout the day. At about 6pm my wife and I took our dog to the beach for a run so all was well.
The ambulance arrived and with the assistance of the crew I managed to walk to their vehicle. They took me directly to A&E.
Various doctors asked questions and carried out tests throughout the day. At about 6pm two doctors asked to see me walk, with their assistance I managed a few steps, my feet and legs felt clumsy. I thought I was walking like a thunderbirds puppet. Little did I know this would be my last walk for some time.
That night I had two lumber puncture tests. I hate needles at the best of times. Monday 18th June, I woke up and was barely able to move. By lunchtime I was paralysed and unable to move arms and legs at all. I was terrified. More tests and lots of baffled looks from the doctors.
I think it was the Tuesday when I was told it was GBS. I had never heard of it before but at least I had a name for what was wrong with me.
Later that day or possibly Wednesday, time seemed a bit insignificant really, they started me on IVIg. This lasted for five days. None of my doctors or nurses had experienced GBS before so could not tell me much.
Sometime in the next few days I saw a specialist who was able to give me a more detailed explanation of what was wrong with me. Apparently, it was the cold I’d had that lead to GBS. I could barely take it in and even now cannot really believe what has happened.
The consultant told me I was to be transferred to a specialist neurological unit In Liverpool once a bed was available. About two weeks after first coming into hospital I was transferred to the Walton in Liverpool.
Unfortunately, my wife does not drive so was unable to get from our home in N Wales to Liverpool to visit me but hey I was in a specialist unit so my recovery would be quicker or so I thought.
Back to Bangor
I was told that as soon as a bed becomes available, I would be moved again, this time to a rehabilitation unit. On 20th July I was moved to Penrhos Stanly in Holyhead. It was a bit of a trek for my wife but at least here I was to get proper rehab care.
Movement was slowly returning to my arms and hands and was improving every week. Despite getting stronger and getting regular physio sessions, daily visits from my wife and visits from friends, the nursing staff noticed my mood was dropping, hey I was still terrified and would cry myself to sleep most nights not knowing if I would ever walk again. After some discussion it was decided that with the right care plan in place I could return home. A provisional date of 2nd October was set.
Thankfully the care plan was in place, I was to have 4 carers 4 times a day as I was still unable to take care of personal hygiene or dress myself. I was however by now able to feed myself for the first time since Mid-June.
Home at last
The second obstacle was the care staff. We have thick carpets in the lounge which now houses my hospital bed and a hoist. The care staff claimed they struggled to move the hoist. It was agreed that rather than a portable hoist a gantry hoist would be installed.
The next obstacle was transport to hospital for my physio appointments. I was to have 12 sessions at a hospital in Caernarfon but due to unavailability of transport only received about half of these.
I have now been home for ten weeks and am now so much stronger. I still have carers for dressing and washing etc. I have an electric wheelchair which was funded by GAIN. I have just started a new course of physio for my upper limbs and I’m getting once a week physio for my legs at home.
Light at the end of the tunnel
My advice for anyone who suddenly finds themselves in this position is do not give up. It is a long and slow process, but you will recover.