Post | June 2023 | Volunteer Stories | 4 min read

“When I came to Sue Ryder my depression lifted almost immediately. Interacting with people there was such a big help.”

Written by GoVol Herts

Meet Alex Longmore, resident at Sue Ryder Neurological Care Centre Stagenhoe

When Alex Longmore, 44, joined Surrey Police in 2000, it was a dream come true. However his career was sadly cut short, when he was diagnosed with Multiple Sclerosis (MS) in 2012. Unable to work, Alex was stuck at home and experienced a period of depression. Alex’s Social Worker arranged for him to have a respite stay at Sue Ryder Neurological Care Centre Stagenhoe, and he never looked back. Alex says, “when I came to Sue Ryder my depression lifted almost immediately. Interacting with people there was such a big help.” Since moving into the centre on a permanent basis, Alex has kept himself very busy with the help of the dedicated Sue Ryder team. Staff have accompanied Alex to various live gigs to indulge his passion for rock music, and he recently attended Sue Ryder’s VIP Awards, as a member of the judging panel. Marlene Sanchez, Clinical Educator at Stagenhoe, says “Alex had such a wonderful time at the VIP Awards. He’s still talking about it now. It made such a difference being able to get out, and to feel like a part of the wider Sue Ryder community.”

Alex experienced a long and winding journey to eventually getting his MS diagnosis. He explains, “I was driving along a country lane, and it was like someone had spread Vaseline on my glasses. I could see, but through a fog of blurriness. Why I didn’t stop and call an ambulance there and then I don’t know! When I got to the station, I told the sergeant what had happened. She told me she was signing me off sick, and asked if I wanted a lift home or to the hospital, and I said home. I went to sleep, and when I woke up my eyes were still strange. I phoned NHS direct and they said you need to get to A&E. I thought to myself ‘things just got real!’” He was in hospital for ten days, and had multiple CT and MRI scans, as well as a lumbar puncture, but doctors were unable to work out what was wrong with him. He was told it could be MS or Acute Disseminated Encephalomyelitis (ADEM). Alex says, “I was put on an IV and steroids, and then sent back home. I had a follow up appointment six months later, and the second I walked in they said ‘we really should have sent you to a neurologist!’ Finally I was given a formal MS diagnosis, and prescribed the appropriate medication.”

The severity of Alex’s MS symptoms meant he had to take early retirement in September 2012, and he found the transition to civilian life incredibly difficult. He says “the money had dried up, and I was just sitting at home alone. Once I had taken my son to school, I was just sat on the sofa all day. My depression got worse, and my mental health was not good.” Alex was offered respite at Sue Ryder Stagenhoe after social services weren’t able to work out a way to appropriately adapt his home to his needs. “After I’d been there for a month, social services asked if I’d like to live at Sue Ryder permanently, and I said ‘yes please!’ I spoke to my family, and the next day I was moving in. The first positive straight away was being able to interact with others through activities. Having my own space is amazing; I’ve got my own computer and internet. It allows me to go to places that I just wouldn’t be able to otherwise. My son was also allowed to come and stay with me overnight before Covid hit. But now he’s 17, and too tall for the bed!”

And while being cared for by Sue Ryder, Alex has been able to continue to pursue his passion for music, particularly rock and heavy metal. “Staff came with me to Sonisphere festival in 2014. I got to rock out nicely! We also went to a Hayseed Dixie gig locally. I’ve seen them seven times now! They were awesome as always – the atmosphere was great, and they never fail to make me giggle with their onstage antics. Ed Sheeran used to be their warmup act. My son really wanted to go and see Ed on tour, so I emailed them, and they sorted the tickets! The rock community is really amazing.”

Marlene Sanchez, Clinical Educator at Stagenhoe, supported Alex to attend Sue Ryder’s VIP Awards, after he was invited to be one of the judges. Marlene explains, “we were told Alex had been chosen to be part of the panel for the VIP Awards, and I was asked if I could help him to do the judging. When I got the information through I thought ‘goodness me!’ There were so many nominations, and we had to read each story. I went to see Alex, and we setup a couple of meetings, where we went through them all one by one.”

And all their hard work was rewarded with an invite to the ceremony itself in Derby. “Alex loves going out, so I wanted to check we could attend and support him before telling him. We spoke to his physiotherapy team about him sitting in his chair all day. Our Head Physiotherapist did some special work with him, so he could do some exercises in his wheelchair while he was there.” But all these preparations were worth it, as both Marlene and Alex had a rewarding experience at the event. “We absolutely loved it. It was a really nice trip. The venue was amazing, and they were so welcoming. Alex sat on the end of the row so he could talk to lots of new people. We were sat with the Communications Team, and we were all chatting and telling stories. Seeing Alex chatting, laughing and happy made it all worthwhile for me. But he was so tired out from the day, that on the journey home he put his heavy metal music on full blast and then fell asleep! He woke up right at the end and said ‘well that trip wasn’t too bad was it!’”

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