Full circle: Volunteering for GAIN

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.

Positive Impact

People really appreciate being able to talk to someone who has been through the shock and turmoil that they are collectively experiencing and to see someone who has recovered from a similar position to them, and you can see the encouragement it can give them. It has been very uplifting to have spoken to several patients who at the time were in disbelief about what had hit them and to see the positive impact that this can have. Most of the time this is by phone or email, but I have made a number of hospital visits over the years, however, the challenge here is often logistical as GAIN covers the whole of the UK.

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.

Psychological challenge

Adrian’s family are not that close by so a bit like me at Liverpool it is proving difficult for them to visit as often as they would like whilst managing all the challenges of family life and schooling etc., so I have got to know Adrian pretty well over the months and he should be very proud of the way he has approached the situation he finds himself in (I have to say that as he is much bigger than I am). I am firmly of the view that the GBS journey is as big a psychological challenge as a physical one and having a positive mindset and environment is key to optimal recovery.

Adrian is now getting plenty of physio, OT and other therapies during the week hence I pop in at the weekends as this is when the hospital is much quieter. Christmas and New Year is a particularly difficult period as with all the bank holidays and weekends in between patients can sometimes have a lot of time on their hands at a time which would normally be spent with their families. Adrian’s family was able to spend Christmas day with him which gave him a boost. I am hoping that Adrian will continue to improve sufficiently to relate his story to GAIN as I don’t feel he is that far away from using a computer and he is currently investigating the use of voice activated software.

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.