Resilience Through Adversity: A Remarkable Journey

A Life-Changing Accident

In November 2008, when Andrew was out riding with a friend he had an accident. We don’t know for sure what happened, no one witnessed it, but based on his injury the doctors suspected he flipped over the front of the bike, landing on his head. He was extremely lucky that our friend he was riding with is a paramedic and was able to attend to Andrew before the ambulance arrived. Andrew was airlifted to Leeds General Infirmary, he had suffered an Atlano-occipital dislocation. It’s sometimes referred to as “hangman’s injury” because the head becomes detached from the spine. He had to have surgery to fuse his C1 and C2 vertebra. This accident also left him with some nerve damage, he lost his voice and was left with double vision. After some time his voice returned, he had one paralysed vocal cord so it wasn’t back to normal, but he could talk. He spent 2 months in hospital and a month in rehab before he was able to come home. Andrew returned to work just 5 months later.
 
The Onset of New Challenges
 
Andrew had an exceptional recovery from that accident and we were able to return to our "normal" lives. In early 2018 Andrew noticed his legs felt funny. He described it as wooden legs, they felt stiff. He was referred to a neurologist by his ophthalmologist who, following an MRI on his brain, gave us the diagnosis of Superficial Siderosis. Andrew continued to work and live life, he was finding it harder and harder to walk but he pushed on. Over covid times when we were working at home all the time his balance got significantly worse. We took a trip to Australia for Christmas 2022 and needed to hire a wheel chair to get around Melbourne and we trialled a wheelie walker as well. When we got back to Manchester we got a wheelie walker to help Andrew get around outside of the house.
 
The Struggle with Ataxia
 
Ataxia, a neurological symptom causing a lack of coordination, emerged as the primary challenge. Despite this, he managed to remain mobile. However, the lockdowns from 2020 to 2022 saw a rapid decline in his mobility, likely due to reduced physical activity. Walking became increasingly difficult, leading him to avoid daily exercise. By Christmas 2022, during a trip to Australia, family members noticed a significant decline in his condition compared to their last visit in 2019. Mobility aids, including a wheelchair and a walker, became essential tools for his independence.
 
A Traumatic Setback
 
In early 2023 after a couple of falls and small hits to his head we reached the conclusion living in a townhouse was no longer viable and started to plan our move back to Australia, but in April 2023 Andrew had a big fall down the stairs in our townhouse in Manchester. He hit the wooden floor hard and was concussed. He was admitted to hospital. Thankfully he didn’t need surgery but the fall gave Andrew an TBI, Traumatic Brain Injury. The brain injury seems to have exacerbated all the symptoms Andrew was having prior to the fall. He couldn’t walk or talk, he was fully incontinent and was fed via an NG tube. He spent 4 months in a high dependency ward where he started to improve. His physio was helping get him back on his feet. Andrew has always had strong legs from previous years of doing strength training and has been able to stand well since the fall. He was then moved to an intermediate neuro rehab unit where he continued to receive basic physio.
 
A New Chapter of Hope
 
In June 2024 we moved back to Australia after 21 years living in England. It wasn’t an easy task, but with the help of family and friends we got a nurse (family friend) to come over and travel back with us. Toowoomba Base hospital were incredible and arranged the ambulance service to meet us at the airport and bring him direct to the hospital. Andrew had 1 week at the Base before moving to an intermediary ward. He was then given an opportunity for some intensive rehab in the rehabilitation ward there where he spent 8 weeks before moving back to intermediary ward (somewhere to wait to be discharged/social hospital admission). Australia has an incredible disability insurance scheme and we’ve been so fortunate to be put up in some specialist disability accommodation, purpose built for those with a disability, and full time care. Andrew still can’t talk, or do much for himself. He still has a strong stand and we’ve been working with the physio on walking the parallel bars. We remain hopeful for some improvement on the brain injury, but know we will always be fighting against the SS. Neurologists here have told us the same as in the UK, that chelation is experimental so they aren’t willing to try it.

Community, Family and Friendship

Being back in Australia has been the best thing for us both. Being closer to family and having their support means everything and has given me an incredible amount of strength to embark on this new part of our lives. We have a good team of Allied Health Services around us too. People who believe with the right exercise Andrew can get on his feet again. We are hopeful that with these incredible supports in place that he can overcome the secondary brain injury. We know we will always be fighting the SS, but also this community The Silent Bleed is a great support.Knowing we are not alone.