Hi, I’m Ben, I’m 49, and I live in Buckhurst Hill, Essex. However, I’m originally from
South London, which is why I support Millwall FC.
I have progressive cerebellar ataxia, although this may be further diagnosed next
year. I have an 8-month wait to see the team at the specialist ataxia centre in
London, as my local neurologist has referred me for genetic and other tests he can’t
do locally.
I’m currently taking a year out of my career to work on a series of detective fiction
novels and explore my photography, something I have been doing since the early
days of Instagram. This was going to be three months, but after I caught covid in
early this year, my health went downhill, and I decided to do things now rather than
later and use the time to do something positive. Hence my ataxia awareness tube
challenge.
I had never heard of Ataxia when I was given a working diagnosis in February 2022
and then a diagnosis in July 2022 after lots of tests. I had been having problems with
my walking, coordination, speech and balance for around ten years, and intentional
tremor episodes for around 20 years. I had seen a neurologist about 15 years ago
who misdiagnosed me with essential tremor, as it’s in my family. Had I known about
Ataxia and its symptoms, it might not have been such a long journey to get
diagnosed. I don’t want anyone else to have to go through this, so I’m doing what I
can to use my love of photography and determination to reach as many people as I
can to make them aware of Ataxia.
I’m raising awareness of Ataxia and the challenges it presents by visiting and
photographing all of London’s 272 Tube Stations. In order to highlight access and
disability issues of travelling on the underground, I’m getting off at each station,
exiting and entering the station to experience the stairs, escalators, ramps and lifts
while I’m on my two sticks for walking and still able to access non-step free stations.
I post a picture of each station on my Instagram @tube.snapper and talk about my
progress on my Twitter @tubesnapper. People can help me raise awareness by
following my Instagram and liking and sharing my posts on their social media. My
Instagram is growing fast. It now has 1250 followers in the last two months as people
are engaging with my challenge and spreading awareness.
I came up with the idea for the tube challenge after I started taking photos on the
tube on my way to the London Library in St James Square, where I do my writing. I
realised that the struggle I was going through getting there and back on two sticks
might be interesting to others. I also realised that I wouldn’t be able to use the
closest station, Piccadilly Circus, for too much longer as I’m struggling most days
with stairs and escalators and will soon be using a wheelchair. I’d seen people race
around The London Underground on YouTube in about 18 hours or so, but all be it,
they did not enter and exit each station. So I thought, I want to do that; it’s going to
be really hard, I might not make it, but I can turn it into a challenge and engage with
people on social media. It’s taken me around two months so far, going out every day,
bar a couple, and I’ve covered 180 of the 272 stations. I had set myself a target of 3
months, which hopefully I will make, but it is becoming more difficult. Some days I
can only manage 1 station, and I have to start to take days to rest. On other days I
can do lots of stations, well, 4 or 5.
I felt really alone when I was first diagnosed. I did not know anyone with ataxia.
Although my partner Richard has been amazing and so have my Mother and Sister. I
made the mistake of not reaching out to people in the Ataxia community for the first
few months. So my top tip would be to engage with the community because since I
have, I don’t feel alone. My other tip would be not to be afraid to ask for help. This
was something as an Ex Bouncer and a Millwall supporter, we’re a tough bunch, did
not come easily to me, and I struggled a lot unnecessarily. Both mentally and
physically. So, ask for help, and please feel free to reach out to me on Instagram or
Twitter.
