Welcome

Greetings and welcome to Ataxians: a blog from a patient’s perspective aimed at supporting others through empowerment.  My name is Dr. Ki Goslin, and already I need to clear something up. I am not a medical practitioner of any sort and therefore I do not dispense medical advice. Your family doctor and your specialists are your first and best resource for medical advice.
I have an earned doctorate in education, organizational leadership, and change. I am a researcher and educator. It is a skill set that I have developed from the practices that I bring to this forum.

Over three years ago, I began my journey of discover regarding why I was walking like I was drunk, poorly coordinated, nauseous constantly, trembling, and struggling with visual issues.  After having corrective surgery to address a vestibular canal dehiscence issue, a rather invasive brain surgery that was completed successfully, my doctors and I hoped that the situation would improve. Sadly, it did not which prompted an MRI which revealed atrophying of the cerebellum and pons. This observation led to the first of a few different diagnoses including spinal cerebellar ataxia (SCA). After substantial genetic testing, SCA was ruled out and MSA-C (Multiple System Atrophy Cerebellum Ataxia) was offered as a “probable” diagnosis. It was at this time that I started this website under the banner of MSA - LIVE INTO IT.

After spending about 18 months with that diagnosis, my neurologist re-assessed and revised the diagnosis to Idiopathic Late-onset Cerebellum Ataxia (ILACA). Having this change of state, I did not feel I could authentically continue with the MSA - Live Into It website. It was an emotional decision to arrive at partly because I was also reeling in the change in diagnosis and its impact. More on that elsewhere.

In January of 2024, I decided to rebrand the website as Ataxians - the term used within the community that not only describes a "patient", but also a warrior. I also believe that because ataxia infiltrates and influences so many conditions, both genetic and acquired, that this heading would broaden the relevance of the site.

My goal is to help others sort through the shared information from websites, medical articles, and patient insights. My work is from a patient’s perspective for other patients and their caregivers. My hope is to provide information that will empower you to have a meaningful dialogue with your healthcare team. To Live Into any form of ataxia means accepting and embracing the disorder within us and taking action so as to live in the present with confidence, dignity, and joy. However, I offer this warning. I will speak frankly with and about the facts that research offers. No sugar coating. I am not here to lessen the blow of the truths surrounding ataxia conditions. None of us have time for such coddling.

I believe that the enemy is not ataxia or whatever has caused it, but rather the ambiguity that surrounds it or any life-challenging disease. I hope that together through our dialogue, research, and deeper understanding we may focus on appreciating the rare opportunity this disorder provides — to be wholly in the present with ourselves and with those we love.  

The other handsome lad in the picture is Ullr, a Lab that I got the year everything went sideways. Our time together helped me to assess my condition. Realizing that ILOCA symptoms make caring for a dog a challenge I re-homed him with a wonderful new family to whom I am very grateful.