Fours Years On
To say it has been a rollercoaster of events would be an understatement. With twists and turns coming so often, I have finally found a bit of stability and haven’t had a hospital admission in quite some time. However, the everyday battle against Superficial Siderosis symptoms continues, some days are easier than others, but when it’s a bad day, it can be an awfully bad day. On the plus side, I’ve found many ways to cope; keeping active and occupied takes my mind off the symptoms until they get so bad that I can’t ignore them.
Currently, I find fatigueOverview The brain plays a crucial role in regulating sleep ... one of the biggest issues. I could be having the best day, and then suddenly, a wave of tiredness hits me. It can become quite frustrating when I’m in the middle of doing something and have to stop and have a rest or sleep to regenerate my energy. However, I do find that sticking to a routine is key to getting through the day. My alarm clock with a vibrating pad under the pillow is a tremendous asset to keeping everything in sync. For someone with hearing lossOverview In approximately 95% of superficial siderosis patie..., it’s a must-have.
When I think about it all in hindsight, I do consider myself extremely lucky. Over the last few years, I’ve had so many neurosurgical operations on top of dealing with Superficial Siderosis but managed to squeeze in other aspects to move my health forward.
Day of Teaching
On January 18th, 2018, I attended a lecture with my neurologist to talk about Superficial Siderosis with trainee doctors. As my doctor said to me beforehand, it was an interesting day that he wanted me to describe my symptoms and medical chronology to see if any of the student doctors could guess my neurological condition. None of the trainee doctors in the room had any idea’s other than my doctor’s registrar who kept his hand down. However, a doctor who was on the video call from Plymouth University pinged up on the screen and got it in one, Superficial Siderosis. I then went on to describe how it has affected my life and the struggles I went, though to get a diagnosis.
Wales Online Article
In May 2018, after a few months of hospital admissions, I wrote to Health Correspondent, Mark Smith of Wales Online who kindly put this article together about my Superficial Siderosis journey. Hopefully, it reached a few people who were unaware of the condition.
Awareness Events
Breaking the Sound of Silence
On June 8th2018, I organised an awareness event for U.K.superficial siderosis charity, The Silent Bleed. The event took place at my friend Nick’s Pub, we had a few bands on, and I did a speech on superficial siderosis. Jason Roberts, CEO of The Silent Bleed, also attended and spoke with the audience. It raised over £400 for superficial siderosis research.
Quiz Night
Superficial Siderosis Awareness Event
I arranged a quiz and awareness event for May 1st, 2020. We were due to have a live acoustic band, a superficial siderosis speech, then a quiz with some questions about the condition thrown in for bonus points. Unfortunately, the event didn’t occur due to covid-19 restrictions coming into place, and we’ve still been unable to move forward with it. Hopefully, once things get a bit better, we will carry out the event or one of similar nature depending on the climate.
Blog Writing
Due to the current environment and the fact we cannot hold in-person awareness-raising events, I’ve been writing blogs in particular for the SSRA. I’ve also written blogs for Rare Disease U.K and Rare Disease Day.org. It’s challenging to keep the momentum going at the moment with the pandemic, but we must look at all options to raise awareness. In the future, I’m planning to do some video blogs. I’ve already arranged at set up where I can start filming, so now it’s about getting down to business.
Neuro Physio
My mobility has suffered due to superficial siderosis, and it was getting me down not being able to walk or get about. I was using a wheelchair to get about (which I still use for long distances), but since attending neuro-physiotherapy, I’ve managed to improve and can stay on my feet a bit longer. The biggest issue is that when my head gets dizzy, I need to sit down or rest; hence why I keep the wheelchair nearby. The virtual treadmill at the rehab centre has been incredible in helping me to get going and has been an enormous boost to my confidence and mental health.
British Sign Language
Now that I’m totally deaf due to superficial siderosis, I’ve taken it upon myself to learn British Sign Language (BSL). It’s been quite challenging to have lessons via Zoom because of the pandemic, but it’s a great asset for communicating with my family. However, I find it hard sometimes, when I have a headacheOverview It is challenging to pinpoint the exact cause of su...; for example, it can be quite disabling and limit my movement for using sign language. As hard as it is though, I believe it was an excellent choice to learn, and it’s also giving me something to do and keeping my mind active.
Welsh Government Cross Party Neurology Meeting
In January 2020, I met with my local Government Minister to discuss my experiences with superficial siderosis. He told me about the Welsh Government Cross Party Neurological Alliance. Following this, I made some enquiries and contacted the group’s chair, who kindly invited me to take part in the next meeting.
On December 9th, 2020, the meeting took place and had politicians, doctors, and charity representatives in attendance. My mum attended with me to help me communicate due to my deafness, enabling me to put my experiences forward of being diagnosed with and living with a rare neurological disease. It was a remarkably interesting meeting, and the core subject was about neurorehabilitation. I explained (through my mum) how much attending rehab has boosted my mental and physical wellbeing. Some of the meeting attendees also used my story to bolster their arguments about follow up neurological care. It was great to see that a long-term plan is being put into place for neurology patients, as I found it particularly hard to get all the help needed in different aspects of the condition, i.e., physiotherapy. It also gave me a chance to explain superficial siderosis to the group, which, due to its rarity, many attendees had never heard of the condition.
Keeping My Own Health Records
One thing I like to do and feel I’ve greatly benefited from is to keep logs of all my medical records. It gives me a greater understanding of what is going on and the chance to question things if I am unsure. I keep logs of my blood results so I can compare them when I change medication or dosages. It gives me a good insight into my overall condition and helps me prepare for my future care and appointments. It’s good to know about your condition when it’s so rare, especially as it’s just as rare to the doctors.
Rhys, thank you for your story, I find it comforting to hear from someone else with this unusual condition . The vibrating pad is just what is coming for me, since I can’t hear my alarm clock. My husband says he can hear it in the other room, so he comes to wake me. I haven’t lost my hearing completely yet, but it’s a slow process. As far as routine is concerned , you are correct, it’s very important . Since I also have Arachnoiditis , pain was my hardest hurdle , now that it’s under control, dealing with all the other symptoms is more manageable !!!