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Patient voice

Ataxia and us – Louise and Karls’ Story

Karl:

November 2014 my world fell apart, I remember that day like if it was yesterday. My wife Louise and I had an out-patient appointment at the neurology clinic at our local hospital. I really didn’t know what to expect although I knew deep down that Louise was very unwell. We waited for an hour in clinic before seeing the consultant neurologist, it felt like a life time and I was very anxious and feeling nauseous, I just wanted the appointment to be over even before it started. The nurse called out Louise’s name then she opened the door and introduced us to the consultant neurologist. We sat down, I was so nervous, and Louise was calm, she was more worried about me than for herself. Louise and the consultant neurologist got on like a house on fire, the medical jargon totally confused me. Louise understood all the medical terms because she trained as a neuroscience nurse at Atkinson Morley’s Wimbledon in 1989.

“Our writing brought us closer together, I now see myself as Louise’s husband. The carer in me hasn’t gone away its changed into something beautiful and loving, there’s more of an understanding between Louise and myself because we had to work so hard on our marriage.”
Karl Treharne – Husband, Carer

After the appointment in 2014 something in me changed, I felt that I had to be a carer first to Louise and then a husband, this was beginning to affect our relationship. For many years Louise was my carer because I suffered with epilepsy and in 2012 my epileptic seizures stopped altogether because I was prescribed a new antiepileptic drug which improved my daily life. I was really looking forward to the future with Louise, we wanted to do so much more together but this came to a sudden stop in 2013 when Louise became unwell herself and in 2014, we knew that Louise had a rare condition called Ataxia. As time went on, I didn’t see myself as a husband anymore, I was angry not so much with Louise but more with her Brain condition, I felt that our beautiful life together was over but thankfully all that changed in 2018, both Louise and myself started to go on a writing journey, Louise joined a group called People Speak Up who connect communities through storytelling, the spoken word using creative writing and I joined a poetry group called Poems and Pints. Our writing brought us closer together, I now see myself as Louise’s husband. The carer in me hasn’t gone away its changed into something beautiful and loving, there’s more of an understanding between Louise and myself because we had to work so hard on our marriage.

Louise:

My world went into slow motion, witnessing Karl’s pale face, slight sweat on his brow, and fear in his blue eyes, with a sunken posture. I wanted to take away Karl’s pain and hold him tight in my wobbly arms, and kiss tenderly away his pain. I needed to stay focused and put my nurse’s hat back on to gain clarity for us all. My tangent words untamed, but neuroscience jargon intact, and the Consultant I felt had professionalism and compassion, this helped us from the beginning to the end of our life changing appointment. Karl asked the doctor if Louise was dying, her calm honest reply was, “Mr Treharne, I don’t know.” The next question Karl asked sounding broken and close to tears, “Doctor, will Louise die before Christmas”? The consultant’s quiet but clear voice said, “Mr Treharne I don’t know. We have no idea what’s going on. We know Mrs Treharne’s brain has shrunk, but the cause unknown. The consultant then said to Karl that Mrs Treharne has a rare condition called Ataxia and that’s why she is unsteady on her feet. This threw Karl, his face not a happy picture he thought that the consultant had said the word Taxi. Karl thought that this was a sick joke. The consultant explained to Karl again and this seemed to calm Karl down, but he still looked worried.

“Our naturally creative gifts a blessing, with kindness and a flexible approach offering respect, are our thriving tools. Mistakes we keep making, but learning all the way, with the constant message ‘permission to be human.”
Louise Treharne, Wife, Ataxia Patient

”Like Karl, I have had to adjust and adapt to the word care, to create a new way to regain equilibrium, and a balanced perspective. Our work together continues in celebrating us as individuals and best friends. Finding healing and supportive ways to remain a married couple, needs us to keep digging deep, as ataxia at first, the intrusive third party. We are once more living our lives actively, but suffer we still do, when another setback occurs. Gaining proactive skills to keep moving forward, once tears allowed to cleanse away the pain, in healing ways. Not fearing each other’s essential tears as much anymore, but remains painful witnessing each other’s temporary world of lost, and frustration. We have a closer bond than ever, and thriving in unique ways, with ongoing exploring as new adventures created. Laughing more and more, as playful ways still true. Our naturally creative gifts a blessing, with kindness and a flexible approach offering respect, are our thriving tools. Mistakes we keep making, but learning all the way, with the constant message ‘permission to be human. ‘Ataxia, Choreiform movements, vestibular- vertigo migraine, cognitive impairments, constant fatigue, womb cancer, with multiple unknowns and complex needs a tough reality that does not always fit within neat tick boxes required by statutory systems, or society’s expectations. Rightly told by neurologists and other professionals, that rare or complex illnesses often mistaken for other things in the early stages. I got trapped in the psychiatric system for over twenty years because of the rarity of ataxia. This needs recognition as distressing for me and significant people in my life. Not stuck in a wasteful blame game, but highlighting the need to gain improved timely expertise, to pick up complex or rare illnesses. Turning my traumatic history to opportunities from learnt lessons, my only current constructive aim. We all need to remember a person within the role of patient or viewed as disabled never comes alone.

Psychological resilience needed. I have created myself a treasure box with reminders of so many kind people, and abundance of positive stories, but using less than pleasant memories or experiences as a springboard to create helpful perspectives of what matters to me as a person living my life today, and what can I offer and share with others? Within our accumulated life experiences, we all have gifts to offer ourselves and each other. Hence my message always, see the person first, before the illness or disability, as with patience and willingness, my ataxia doesn’t resign me to a life of only taking, but I equally have much to offer, maybe more and not less, but in different ways? Using my experiences, character strengths and talents to turn ataxia into my guiding atlas. Crushing waves still take me under, but confidence from evidence gained, knowing I can, and I do come back up stronger on the next wave. Finding less fearful and defensive ways to facilitate my ability to listen to others, often others as frustrated and fearful as I am in that moment. Gaining more confidence to learn what people need from me, and what I need from others, so more win-win situations can be gained. Mutual respect needed if something too hard to grasp, but still workable.

Ataxia and other health challenges I never deny I would rather not have, but a privileged opportunity to grow as a person, and valuing my long-ago nursing skills, using creative abilities our creator gifted me with, and learning who to safely turn to in time of need as my capacity can easily be overwhelmed in not so obvious way. Right now, feeling the struggle by everyone all around and trying not to be a burden because everyone is struggling. An important message, disability can’t be shelved for covid or Christmas, so please be patient as Covid19 came in but my disability never left!

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