More than 50% of people living with Multiple Sclerosis will have some cognitive problems in their life. Because I live with chronic pain, Persistent Post Traumatic Headaches, and fatigue, I also have cognitive problems. This impacts me in many ways, forgetting things, short term memory issues, word finding problems and holding conversations. As these symptoms …
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 …
I am sitting in my car waiting for my partner to finish the weekly shop, wondering how I can start this blog post. 2020 has been a hard year for so many people because of the uncertainty of the Pandemic. It has killed many innocent people, brought financial hardship to service workers, split communities and …
The Good, The Bad and the Ugly of 2020 – A Chronically Ill Perspective Read More »
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 »
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 »
