David Stonehouse shares his story of Guillain-Barre syndrome from diagnosis to recovery – “He tapped my knees with his hammer, but they were totally dead – he would have got more response from a tree trunk. I had various tests carried out, the last one being a lumbar puncture which confirmed that I had Guillain-Barre syndrome, and within one day I was paralysed from the neck down.”
I have just arrived home from driving to my daughter’s home in the Midlands with my wife Dee. We have been abroad twice of late and my life is slowly returning to some form of normality. This is my story, and is especially for people like myself, who take a little longer to recover from Guillain-Barre syndrome.
We went on holiday for a second time to Goa, India. It was the 26th January 2015, my birthday. We had lunch at a beach shack cafe, where we had eaten before, the previous year. The food was ok, I had the kingfish. Later that day I started to feel unwell and that evening I was violently ill with sickness and diarrhoea. I didn’t recover, so after three days we had the doctor out who checked me over and gave me vitamin tablets.
After a few more days I was having problems with my eyesight with slight double vision, also difficulty with swallowing. I lost my appetite and the weight fell off me. I felt very weak I hadn’t the strength to climb the few steps out of the swimming pool. We were flying home on 13th February, and the evening before we flew home, we had dinner at the hotel garden restaurant. I hadn’t the strength in my hands to eat my tea and i couldn’t fasten my belt. I was really struggling to do the smallest task and on leaving the restaurant my legs had turned to jelly and I collapsed on the stairs. Two security staff had to carry me over to the reception area.
I was taken to hospital where I had an ECG, and I was eventually treated for dehydration. The next day was Saturday and the doctor was going to discharge me. I told him that I couldn’t walk as i had no strength in my legs. He said show me and I did. He then tapped my knees with his hammer, but they were totally dead – he would have got more response from the tree trunk. I had various tests carried out, the last one being a lumbar puncture which confirmed that I had acute Guillain-Barre syndrome, and within one day I was paralysed from the neck down. Luckily it did not affect my breathing. I underwent the treatment to stop the paralysis spreading any further and I knew that I was facing the biggest fight of my life. I spent a further twenty days in hospital. The doctors and nurses were great – they really looked after me well.
On 4th March, two doctors accompanied me on my flight back home to Manchester from Goa via Germany. I was stretchered for the whole journey. I spent two weeks in Scarborough hospital and a further five weeks in Bridlington hospital. I eventually got back home on 29th April. My wife is a retired nurse and looked after me 24/7. She had to feed me, toilet and wash me – what a mess I was in! It took me a long time to accept that I was quadruple disabled.
Because I was expected to make a full recovery, we had to fund the full cost of the ramp put in place to the front door for the wheelchair.
My wife made contact with the charity Dial A Ride and we used their buses to go to Scarborough and surrounding area. They were brilliant for people like me in a wheelchair. While at home a community physio came to me twice a week. She later told me the first time she saw me she assessed my ability at 5%. She told me she would be coming to the house for approximately three years and her target was to get me walking and to be able to go up and down the stairs.
I was very fortunate to be in contact with a lady called Ann who had recovered from GBS some 15 years ago. She was brilliant, giving me encouragement and hope, and lifting me out of the black holes I would slip into.
In September 2015, eight months after this all started, I had an appointment with the neuro consultant at York Hospital. I was feeling good with the small amount of recovery I had got back in my arms and legs, only to be told there was a possibility I would never walk again. I was devastated by these few words and my world collapsed around me, but I wasn’t giving up and on 4th January the next year I stood up from my bed for the very first time.
My body felt so heavy I honestly thought I would never be able to walk again, but in May 2016, I took my first few wobbly steps in a gutter frame. I progressed very slowly to a walking frame, and later that year I was given the opportunity to go to the hospital gym. This felt like real progress – I was so excited!
But I had a problem with sit to stand – to enable me to use the gym I had to be able to stand up from my wheelchair. I couldn’t do that, so we compromised, and the physio took the wheelchair arm and side off and I was good enough to go once a week – another brick wall knocked down!
My hands were beginning to claw, and the occupational therapist came to measure my hands for splints. She asked me what I hoped to achieve, and I replied that I wanted to walk out of house and drive my car. She replied, “How will you ever drive a car again with hands like that?” Wow, who needs people like her! And guess what, I’m still waiting for the splints – never did get them.
I was advised by my physio to go to the gym at Plaxton Court, Scarborough, to build up my strength and stamina. Gill is the instructor there who specialises in people with disabilities, but I forgot to tell her at the induction that I was unable to stand from my wheelchair. It wasn’t an issue however, and after a few weeks I was able to achieve this.
I’ve been going two years now and the wheelchair’s gone. I’m able to walk with a stick and use a crutch. I’m able to walk with a stick and use a crutch. I’m able to use most of the equipment at the gym. But above all, me and my wife Dee, who stood by me through thick and thin, have got our lives back. Ray, a very good friend of ours, gave me the opportunity to see if I could drive his car, I drove around a large car park quite well. DVLA sent me for a medical, and now I’m back driving again. Absolutely fantastic.
Last year, 2018, saw the most improvement. I’m able to climb the stairs and do most things around the house. I’ve achieved what I wanted to achieve. the ramp’s gone and the wheelchair’s gone. I walked down the house steps and drive my car. My physio discharged me on 10th September 2018. She and I achieved what she wanted to achieve, and she told me it’s down to me now. But you know what? it’s always been down t me. So, my story is for the GBS people like myself, who take a little longer. keep positive. Keep smiling. Without the support and help from the physio team the gym staff, etc. and Ann who’s always been there to give me encouragement, I wouldn’t be where I am today.