A Mixed Bag
Like most years, 2023 has been full of up and downs. Awareness raising is going strong, and superficial siderosis is getting more recognition; although it’s nowhere near enough. There are people still fighting to get the care they deserve and having to educate their doctors through their lived experience. The superficial siderosis community continues to share their journeys amongst each other online, and it proves how much we still don’t understand about this rare life altering condition. I’ve also made some personal achievements, that I hope will show other superficial siderosis patients that there can be ways move forward. Sadly, it’s not the case for everyone, but we need to collectively try and make an impact for both ourselves, and the community.
A Glimmer of Hope
After completely losing my hearing by the end of 2018, I was referred for a cochlear implant to see if it would help. Thankfully, after 5 cancelations I had the operation, and two months later the implant was switched on. To my biggest surprise I could recognise speech instantly. I hadn’t got my hopes up because it’s pretty much hit or miss with superficial siderosis which can damage the hearing nerves. I’m not even sure if my local neurologist knew it was possible for a cochlear implant to help in superficial siderosis. When I told him I was having the operation his response spoke volumes, ‘will it work with the nerve damage?’ he said. I’m so glad I took the leap, and my neurologist was astounded when I saw him last month and could hear everything he was saying.
Sadly in February we lost our beloved Marybeth, or MB as she was known. Whenever we had an online Teams meeting, Marybeth would always have us smiling. She was the life and soul of the meetings, and we all felt a close connection to her. Whether it be chatting about her grandkids, or something we had in common; there was never a dull moment with MB. As the saying goes ‘first one on last one off’, but with MB it was last one on last one off, I struggle to count the times I had to help her logging into MS Teams but will never forget the long chats we had after the meetings, which went on for hours! We talked about music, and bands such as Wheatus who are from her native Northport. Such a huge loss to everyone in the superficial siderosis community. We’ll certainly miss her catchphrases ‘Who knew?’ and ‘Oh boy!’. Fly High MB.
Neurological Alliance Petition Hand In
The #BackThe1in6 campaign (which derives from 1 in 6 people in the U.K. having a neurological condition) continued into the next stage of handing in the My Neuro Survey results to the department of Health and Social Care of NHS England. It was a big milestone as the Neurological Alliance continues to push for better neurological care in the United Kingdom. On the superficial siderosis front it once again proved fruitful as I had the opportunity to connect with Brain Tumour Research. Brain Tumours and the operations to remove them have been known to cause superficial siderosis, as was the case with me, so raising awareness of this is vital to reducing risk factors for future brain tumour patients who undergo posterior fossa craniectomies.
Reintroducing The Wheel
When you lose the ability to do something you enjoyed, it’s nice to be able to replace it with something that you can do. That’s exactly what I found in cycling on a recumbent trike. My balance is so varied, and I sold by bicycle a few years after it hit me that it would not be something I could do again, however it never occurred to me that I would get the chance to try a recumbent trike. I’ve been a patient at Morrello Clinic (a neurological physiotherapy rehabilitation centre) for 3 years, and took part in their paraTRYathlon, which re-introduced me to cycling, but now with 3 wheels.
I’ve since engaged with Pedal Power (an all-inclusive cycling charity) and regularly attend their base in Cardiff where I can cycle using a recumbent trike. It’s not only great for strengthening the legs, but feels so good to get outside and cycling along the river Taff. The team at Pedal Power are so helpful and friendly. I can’t bend very well, so always need a bit of help getting on and off the trike. The trikes even have toe clips to stop my shaky feet coming off the pedals, which may not seem like much to most people, but is a must when you have clonus (involuntary and rhythmic muscle contractions) in your lower limbs.
Remembering Brett Butler
Every so often I’d get a message from Brett, asking how I was doing. Brett, a farmer from Australia was quiet in the superficial siderosis online chat groups, but always made the effort to private message and ask how things were going. I was introduced to Brett by Fiona, who is extremely grateful to him and his wife for helping her obtain deferiprone (Ferriprox). Hearing of Brett’s passing was a shock, but also a gentle reminder of some of the amazing people I have connected with worldwide. Brett you are greatly missed!
The Neurological Alliance AGM
This was the first real test for my cochlear implant, and once again a great opportunity for superficial siderosis as I had the chance to put questions to Dr Niran Nirmalananthan, the NHS England National Neurology Director. I was asked to chair a panel on NHS England Transformation for Neurology, which was based around NHS England’s incoming policy of localised integrated care. The main concern of localised care in superficial siderosis (as highlighted by members of the online support groups) is access to specialist services and expertise. After all, superficial siderosis is rare, and there are few experts who are knowledgeable in the condition. This is something that could further the postcode lottery for superficial siderosis patients, which is what I highlighted with Niran.
A Big Thank You
Last but definitely not least; from all of us at the SSRA, we want to say a huge thank you to Rori Daniel for everything she does for the superficial siderosis community. I don’t think it’s possible to put it into words how much she means to us. Rori is always at the forefront of everything, pushing for awareness and research, writing reams of protocol for the planning of a deferiprone trial. Alongside everything Rori does, she cares for her husband Gary who is suffering with superficial siderosis. Rori is truly a selfless person. Thank you so much Rori!
Happy new year to everyone, wishing you all the very best.