Welcome to brainfogdays
Shortly after starting a MSc. in neuroscience, I was diagnosed with the neurological disease Multiple Sclerosis (MS).
This is what they call irony.
Living with MS has changed me in many ways, but the most disturbing way has been its effect on my thinking. Sometimes my brain does not work well: it feels foggy heavy disconnected, it works differently than it did before.
This is frustrating and this is fascinating.
My goals in creating this site are:
1. Create a space for others to find support.
Illness is lonely. It is a battle waged between your body and yourself, and fighting that battle drains your energy and draws you away from the World of the Healthy.
Over the past few months, I have found much comfort and support by reading other people's stories. These online forums and blogs have also provided me with helpful information and reassurances about medical procedures, medication side effects, and symptom management.
By sharing my experiences, I hope to add another sympathetic voice to the mix. There are also many topics that I want to know more about- i.e. the relationship between anti-TNF therapy and demyelination, the causes and manifestations of paraesthesia, or how heat worsens neurological symptoms - and I hope to contribute to these topics for myself and for others.
2. Bridge the gap between patient experience - clinical practice/applied research - basic research.
As a child who suffered from severe asthma and Crohns Disease, I grew up in and out of hospitals and clinics. For many years my health was stable, and I could pursue studies that interested me - in psychology, philosophy, and neuroscience. I recently began graduate studies in neuroscience, and have been working in a genetics and clinical biochemistry laboratory, learning how things work from the research end. This time, as I return to the role of the patient, it is with more information and insights. As a patient, I feel a gap between what I want and need from my healthcare providers versus the information and resources they provide.
I am interested in (a) exploring what this gap is (i.e can I identify what components are missing or ways the system could improve), and (b) tracing the path from basic research to drug development to my body (i.e. what is this medication I am taking, how does it work and what is and is not known about it?).
Additionally, I believe we need to improve the flow of information from the clinic to the lab. How can scientists better use clinical data to refine and explore the most important research questions for the patients?
3. For myself.
Writing forces me to articulate my thoughts - and lately my thoughts have been all over the place. It also challenges me to look at my experiences from another perspective, and place my story within a larger context. And most importantly, it is a way to connect to others, to speak to you the reader.
So, join me as I explore the parallel experience of losing my mind and studying the mind, and the challenges and triumphs along the way.
Msc. neuroscience student, MS and IBD patient
writer, climber, runner
lover of all nature and beauty
currently living in tel aviv
spending time next to the sea