It has been several months since I have written a post. I want to write more, but this horrible disease has pushed me into a corner. Fatigue has reared its ugly head, causing me to have less energy to do the things I would like to do. Besides this, some medications I have been taking …
The Multiple Sclerosis rollercoaster brings fatigue and poor mobility Read More »
There is an increasing desire in the research community (public and private) to include patients throughout the medicines development process. This involves a big change is the way these organisations interact with us. It is a challenge, as working with the public and patients often requires a different way of preparing for and organising of …
Patient engagement: How one pharmaceutical company is failing to adapt. Read More »
On Thursday, I attended a webinar for an organisation which states they want to support patients becoming innovators. They want people, like me, and our caregivers, to change the health landscape by creating businesses which, if successful, can change the health landscape. This appears to be inclusive, and I attended, hoping they could support my …
Excluded, again, by the people who say they want to include us Read More »
Thirty years ago, today, I was diagnosed with Multiple Sclerosis. In the previous November I was in Queens Square London getting a battery of test done. This included an MRI (Magnetic Resonance Imaging) and a lumbar puncture (LP). The MRI was a new diagnosis test at the time, as they had just started to use …
Pixabay – CCO Licence When you’re new to using a wheelchair, you have a lot of things to get your head around, and it will undoubtedly take a little while to acclimatise to your new situation. One of the many things you will need to consider along with the pros and cons of electric wheelchairs …
Setting goals when you are healthy can be a challenge, as you have so many distractions which can pull you away. These can be time, energy and finances, to name a few. When you live every day with fatigue, pain or cognitive problems (over 50% of people living with MS experience this) it makes it …
