Louise, in her blog post, explains her ataxia journey and reminds us to be inspired by our courageous resilience.
My name is Louise, and I was born in Ceredigion, Wales, in 1961 to a family of six. I trained and worked as a neurology nurse in England. My father was diagnosed with cancer, which resulted in my return to Wales in 1990. There are no neurology nursing work or resources near my family. I started my mental health nurse training but faced challenges in 1992. I was diagnosed with ataxia in 2014, but the cause is unknown. I live with my husband and our dog, Gwen, in Carmarthenshire. Writing, speaking, singing, walking and being an active voice for neurology keeps me busy.
In September 2023 I agreed to participate in research and a six-month wait is expected for the genetic results. In 2015 a neuropsychologist confirmed no active mental illness. Psychometric testing is insightful to my processing problems in memory and communication. The neuropsychology team and others have said and documented how inspiring they have found my resilience. I keenly aim to prevent others on a similar journey from feeling their vulnerability is invisible.
Making sense of my general health and neurological history and past links to psychiatry has helped me adjust my life and has made it easier to move forward. I was grateful to receive the ataxia nurse support letter, they had used straightforward language and offered guidance. I found this to be super helpful since I could reach out to the health professionals when needed.
A disabled shower room supports my needs. A profiling bed has made a huge difference. Profiling bed helps me as it reduces headaches – especially in the mornings. It also helps my vertigo since I can elevate the back and get accustomed to upright posture. Helps with bone and muscle pain. I have gained freedom to walk outdoors just by using my four-wheeled rollator which has a seat. It keeps my body and mind at ease.
My husband, Stephen, and I became Ataxia UK members in 2014. A helpful person on the Helpline was experienced, compassionate and confident. This contained my multiple questions and vulnerability. I was given suggestions and guidance in a sensitively manageable manner. The website and other online information, plus Facebook offers excellent and straightforward awareness. The newsletter and email updates are most informative.
My advice to you is to invest in your strengths. Use your talents. Be flexible and understanding since this can reduce pressure and frustration. Good humour guides well. Show kindness and patience towards the people around you, as they may also be scared and confused. We should allow our abilities to thrive and befriend disabilities. Accept help offered as needed. Ataxia is tough, but with confidence building, you can be in charge. Be amazed and inspired by your courageous resilience. Use opportunities such as quality relationships, contacts with connections to belong, hobbies and your defined work within capacity. We are stronger together going forward. Conserve energy wisely to optimise health and wellness.
