Louise T's story

I am Louise and I was born and raised in Wales with both parents, two brothers and sister. 2007 Karl and I got married.

I trained as a nurse in Gloucester Royal Hospital. Neurology nurse training completed at Wimbledon Atkinson Morley’s Hospital. 1990 took me back to Wales to support my parents with health needs. No neuroscience nursing work available. In 1990 I began speaking up for improved neurology services and I am still an active voice in 2025. I commenced Registered Mental Nurse training on my return to Wales but in 1992 my health broke and I ended up being a psychiatric patient for 21 years, before my neurological brain and cognitive changes were diagnosed.

I promote trust in learning and working together. In a memoir I published in 2024 titled ‘Warm Tears In The Cold’  I share my journey, with chapter 17: Further Adventures of a Gutsy Woman, where I demonstrate how I put my character strength and talents into action.

Discussing my journey with two professional C.W.T.P. practitioners for a recording which is on YouTube, titled ‘Lost Like A Car On A Roundabout’  I created a thought provokingly enquired whether introducing me with a list of my health conditions would reduce my visibility as a person. My husband and I have a couple YouTube recording titled, ‘Ataxia, Only Joking’ working therapeutically with exchanging our poetry and prose sharing our feelings on the impact of disabilities on our marriage.

Since 2017, I’ve been a patient at London NHS Ataxia clinic. The ataxia neuroscience nurses roles has improved communication and reassuring professionalism. My diagnoses are: Progressive Cerebellar Ataxia since 2013/14 with ongoing loss of coordination and balance, Chorea: Involuntary jerky movements, Vestibular Migraine with headaches, Dizziness and Vertigo, some nerve damage feet Neuropathy, Cognitive Impairments with areas of declined function.

Like many patients with similar presentations, I do not have a specific genetic diagnoses and therefore classified as having Idiopathic Cerebellar Ataxia. Focus on symptom management as there is no disease modifying treatments to alter the course of my condition.

I am living my life with meaningful purpose with creating hope for myself and others with using my creative brain. My diagnoses hasn’t robbed my compassion or sense of humour.

I have found Creative Writing for Therapeutic Purposes (C.W.T.P.) helpful. Helps in maintaining a healthy mind through processing safely with feelings expressed into transformative life healing.

I would also highlight the carer and cared for needs with risk of burnout for both roles. My husband was helped by the neuroscience nurse at the Brain & Spine Foundation, through the virtual Neuro Carers Support group and one to one chances to talk about his feelings and  to understand my diagnoses and the impact of this on us as individuals and a couple. Karl expressed his anger,  frustration and fear about the multiple hospital appointments and soul crushing communication breakdown, the unmet care package as most carers not heard of, experienced or trained to support my complex needs.

My womb cancer diagnosis and surgery on top of a psychiatric traumatic journey for us both, became mounting triggers. Our unmet individual and couple needs and loneliness for us hit hard. We grieved and mourned the loss of our plans and dreams. The behind closed doors tears, pain and people’s inability to recognise what involved. This given a safe chance to be heard. This support for my husband by the Brain and Spine Foundation Helpline nurse, supported me as well.

Sharing my brain nurse to patient experiences with the Brain & Spine Foundation and completing the Social Research surveys for NeuroLifeNow improved my focus and confidence and to keep learning best ways to grow as a patient voice, plus a published writer and speaker on public platforms, spreading our voices into mainstream society. Greater validation through gathered research as quality information to backup intelligently areas of neurological prioritised needs and real-life people stories to offer Governments, plus support why funding for neurology statutory services and charities is crucial.

I value nature or being out and about, walking with my rollator and accompanied by dog daughter Gwen, my husband or others. Outdoor exercise optimises my health and mindset.

Support from the arts charities offers me essential continuity. Keeping up skills while adapting and adjusting to progressive changes to optimise my health and wellness. Thanks Eleanor Shaw, CEO and founder of People Speak Up (PSU) charity and her awesome team  and Community Interest Company Write4word  and others. Especially my husband Karl who has been a constant on my journey.

Singing through PSU projects with Bill Taylor – Beales and Nerissa Joan a stand-alone story. Wow to having a recorded solo on YouTube with my own lyrics titled ‘Scared No More,’ and I also sang live to an audience for the first time since 1990.

I value the Brain & Spine Foundation in offering information with guiding or helpful professional nurses and colleagues as this supports NHS and Local Authority provision. Living in Wales Alan Thomas the charity founder of Ataxia and Me has been instrumental in our lives. Ataxia UK charity truly helped with my NHS London Ataxia clinic appointments.

Together we are stronger and will keep our flames bright on mutual neurology journeys. Voices heard with nobody silenced out of fear or abandoned in the scary darkness of loneliness. Feeling warm and bright within our shared comforting blanket.