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 »
Patient advocacy has many rewards, helping a community and better research are just two. It comes with a cost, and I wonder, is it worth it?
The last four weeks have been a challenge. The number of days I have had to finish in bed, early, has increased. Often seeking solace in a darkened room at 3 in the afternoon. My limbs have been heavier, where trying to lift my arm takes effort. Walking, taking longer, slower every day, struggling to …
Depression in Multiple Sclerosis: Is it inevitable? Read More »
It was a warm day yesterday, and I had the chance to sit outside and read. The feel of the sun is fantastic, and I always welcome its feel. Somehow it renews me. The heat is like a charger and it can bring me from nearly depleted to half full. Not bad for an hour …
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 »
