I had Guillain-Barre Syndrome, the AMAN version, in 2009 and was in 3 hospitals for 4 and a half months in total, followed by 1 and a half years of physiotherapy and off work for 20 months in all.
I became a volunteer for GAIN prior to going back to work and have been talking to patients and families and I have found talking to them something positive that I have been able to do following a disease that has left me with some residual damage which thankfully doesn’t stop me really doing anything, but I am not what I was. Nevertheless, compared to the starting point of complete paralysis from the neck down, I am certainly not complaining about where I am today.
Over the years the charity has changed to adapt to new communication technologies and particularly social media, to the point that the telephone helpline receives fewer calls as people are accessing the info they need via computers and smartphones, and I am pleased to say there is a lot more info out there on GBS than there was even just 10 years ago.
Weird and debilitating disease
However, GBS is such a weird and often very debilitating disease that there is often a need for parents and/or families to talk to someone who has experienced the disease first hand.
After all these years of talking to people the common denominator is that it is simply impossible to comprehend the reality of GBS unless you actually experience it. That, and the fact that every patient’s recovery and progress is different.
I live near to the Robert Jones and Agnes Hunt Spinal Injuries Hospital in Gobowen where I spent my last 3 months in hospital undergoing rehab after spending 8 weeks having excellent treatment ( and every treatment I could and should have had) at the Walton Centre in Liverpool. Sadly, this is not always the case. I went to the RJAH for my rehab as my family were finding it difficult visiting me in Liverpool and the RJAH is on our doorstep. Over the years a few patients have appeared briefly at the RJAH before either being discharged or moved on as by definition it is not a neurological centre and ordinarily GBS patients end up elsewhere.
I have got to know a lot of people at the RJAH in a variety of departments and in October 2018 I got an email from a Physiotherapist friend advising me that they had been treating a patient in Gladstone Ward (where I was treated) who had GBS and he would like to have a chat. So, having advised GAIN, in I went. Gladstone is a big ward so you can imagine my surprise when I was directed to the exact same bed that I was in! I introduced myself to Adrian and it was like stepping back in time, he was pretty much in exactly the same situation as I was in 2009 but unlike me had not been diagnosed correctly in the first place and various complications had impacted his recovery. My wife, Mel, works part time at the hospital and when I saw her that evening, I told her that I reckon I had “seen a ghost” and having visited Adrian on a few occasions she agreed that GBS had affected us both in an uncannily similar manner.
That was 3 months ago, and I have visited Adrian most weekends since. His progress has been excellent in my view (I am not a Doctor but can see there has been a lot of neurological activity, and as the nerves heal from the inside out the extremities are the last to fire up again). Like me, Adrian’s hands are not yet functional again and this is an immense source of frustration for him, as it was for me.
During my visit to the hospital I became aware that the Occupational Therapy Department had used previously authorised pictures they had taken of me in their Departmental brochure showing me in my electric, head controlled wheelchair using a computer by voice and foot controls as my hand and arms were the slowest to recover, so this was great to be able to show Adrian both where I was with my recovery at the time and also some of the options and adaptations that are available.
I have found all my volunteering work for GAIN very rewarding, and this particular journey especially so. Regularly being able to visit someone in a local hospital has been a real advantage and I would encourage anyone who is thinking of volunteering to do so.
Requests for peer support can be infrequent, and volunteers may go months without a referral. There are, however, lots of supplementary ways you can support the charity and people affected by these conditions, including taking leaflets and posters to your local hospital or GP surgery, or by raising funds to help us deliver our services.
If you think you have what it takes to be a volunteer for GAIN, we’d love to hear from you.
Phone us on 01529 469910
Or apply online: https://gaincharity.org.uk/get-involved/volunteer/