Axons, oligodendrocytes, myelin, neurons, DMTs, cognitive reserve, brain atrophy, Quality of Life, newly-diagnosed and neuroplasticity are just a few of the terms that whoosh along my neurological pathways when I consider ‘research’.
The origin of any research is curiosity, a search for answers. In the 1800s, Jean-Martin Charcot, known as the founder of modern neurology, put a name to the condition/disease that he saw people presenting with- sclerosis en plaque. Since then, people have gone onto ask more questions. As is so often the case, one answer inspires even more questions.
- What is MS? When does it affect people?
- How do people ‘get’ it?
- Is it in my DNA? Is it to do with epigenetics?
- Why do some people progress faster than others?
- Where does it begin in the human body?
- Is it genetic/environmental/experiential/psychological?
Add to these clinical questions the questions related to daily life- relationships, mobility, sex, children, university, employment, exercise and other elements of modern living.
Never a good time to be diagnosed
Twenty years ago, people with MS were told there were no answers to any of their questions. If I had been diagnosed in the early 1980s, there weren’t any options, there was little information on how a person with MS could maintain good health and there certainly weren’t any medical treatments available. I know there is NEVER a good time to be diagnosed with MS but I am glad that for people diagnosed more recently, there are more sources of information, there are resources developed by patient organisations and I can connect with communities of people with MS online and in real life. Online, there are many opportunities to read about the experiences of other MSers, something I know many people find very powerful for their own lives.
In the past two decades as technology, sociology, neuroscience, immunology, stem-cell investigation and all fields of research have blossomed, the MS Community has benefited from these endeavours directly and otherwise. It is not purely about the medical field; research into the impact of neurological conditions on an individual’s life; the value of the right nutrition on an MS body; the positive effect of regular exercise on the body- all areas have been or are being explored. We, people with MS, are fundamental to the development, the direction, the focus.
Here is a short list of projects and studies, from a variety of areas, blogs from neurologists, from people with MS and others.
Bart MS Blog- The aim of this Blog is for the Barts and The London Neuroimmunology Group to update on the latest research in MS with an emphasis on the research we are involved in. Follow Gavin Giovannoni on Twitter for up to date developments.
BICAMS- Brief International Cognitive Assessment of MS assesses people with MS and their cognitive function.
BRAIN Initiative- This is a Presidential initiative from the Obama Administration focusing on research into understanding the human brain, the connections and everything possible to research.
CenterWatch- A comprehensive list of current ongoing clinical trials. This is a USA-focused site but worth a look.
Clinical Neuropsychology Blog- A blog from Dr. Phil S. Moore. Neuropsychology, understanding the impact of MS on a thinking, assessing the effects and how to intervene.
European Brain Council- The mission is to promote brain research across Europe to improve the lives of people with neurological conditions.
The MS Trust Research Updates- Weekly updates from the Trust on interesting and relevant research on all things MS from a variety of sources.
PubMed- Millions of articles await you on this site. If you want to explore papers and publications, put in your keywords and this site will show you what’s available.
No end to the Adventure
These sites and articles are just to whet your appetite. Knowledge is powerful and is an important tool for life. We make better decisions when we’re educated and have information about what it means to have MS. When I was first diagnosed, I didn’t even know what my central nervous system was for, how it worked and how my being was so reliant on it working well.
Reading and investigating isn’t for everyone but I do believe that for us, for the MS Community, the better informed we are about MS, about general health and our state of mind, the greater the opportunities for development and growth.
Follow Emma on Twitter for more information, links and chats about research, living with MS and exploring ways to maximise your life.