Frances was diagnosed with spino-cerebellar ataxia type 3 (SCA3) in 2009 at 49. At that time, she was working at the Royal Hospital for Neuro-Disability; her symptoms were worsening, but she didn’t want to believe anything was wrong. Here, we report Frances’ story about acceptance, the changes she has had to make for her career because of her ataxia, and how she manages her symptoms.
As well as ataxia, Frances has epilepsy; she thought that her ataxic symptoms were her epilepsy playing up, and didn’t have herself tested for some time. Even when the symptoms became more severe, “I told the doctors: ‘yeah, sure, do the test, you’re wasting your time,’ because I was completely convinced that I didn’t have ataxia.”
Sadly, the results proved that she did; whether she accepted her condition or not, her symptoms were making life more and more difficult. Before ataxia, Frances was a “very tropical person,” travelling and living in Jamaica, Malaysia and Nigeria. After her diagnosis, even her commute to work was a struggle. Initially she reduced her hours at the hospital, but now she says that travelling to work at all is no longer worth it. She manages her symptoms in the ways she can: “I do a lot of gym work; it involves exercises which strengthen the core and improve balance. I’m determined to maintain my mobility for as long as physically possible.” She advises people with ataxia to invest time in physiotherapy, and ask for a referral to a neuro-specialist if they can.
Frances also focuses on improving another aspect of living with a rare condition: mental health and wellbeing. She runs an Ataxia UK Support Group in Mitcham, South London, where anybody affected by ataxia is welcome. They meet to socialise, have fun and share advice in a space where they don’t have to explain their conditions. Through finding specialist care for her condition and forming a support network on which she can lean when times are hard, Frances has comes to terms with her diagnosis.