Recently, I have been involved in two different projects. Both of which involved me sharing some of my experience of living with Multiple Sclerosis. Progressive MS Webinar Series The first is the Progressive MS Webinar Series, which I am hosting, and is in collaboration with the MS Society of Ireland. The first webinar, about Isolation, …
Yesterday I had the honour of being a keynote speaker at a conference which focused on including patients in research. By this I mean people who live with illnesses should be equal members of the research team, deciding what will be researched and how the research is conducted. The phrase we often use is: Nothing …
My first experience of participating in research was over 15 years ago when I tried to get a trial started on a medication I was using to treat my Multiple Sclerosis, an illness diagnosed a decade earlier. It was unsuccessful. The principal reason, I think, for my failure was a an absence of knowledge of …
Why learning to be a Patient Expert has given me a purpose in life. Read More »
Surrounded by terrible news. On the TV the presenters are asking when will this lockdown stop, can we survive this, or the world is in crisis. The economists are predicting global recession, and some are talking about a depression. There are websites counting the deaths, YouTube has channels urging us to prepare for the worst, …
The hills in Connemara must be growing, and the stairs are longer and steeper. Every step has become a moment of concentration. Before the COVID-19 pandemic had become mainstream, my walking had become worse. My right leg is assisted by Functional Electrical Stimulation, but the intensity of the pulse needs to increase. Because of several …
Should I get treatment now with COVID-19 as a risk? Read More »
My legs are a disaster. In the last year I have started using an FES device for my right leg, and my left one is now like my right was a year and a half ago. Sativex helps with my mobility, but its cost is prohibitive, and now I only use it occasionally when I …
How Patient & Public Involvement is giving me purpose. Read More »
