How do you adjust your life when the rules of your illness change? I share what I am doing now. The post Multiple sclerosis: The rules of my illness have changed first appeared on ..read more

For the last four years I have actively used my experience of being a patient to engage with academics, governmental and commercial organisations to put the patient at the centre of the healthcare system. I have had positive and negative experiences along the way, and I think have converted some people to engage with the … Is Patient Centred Healthcare wanted by the Irish health system? Read More » The post Is Patient Centred Healthcare wanted by the Irish health system? first appeared on ..read more

Guest Post Could a change in diet make a difference for people with multiple sclerosis (MS)? Those are the questions our research team investigates.  So far our answer is yes. Diet can reduce fatigue, improve quality of life and walking function for both relapsing-remitting MS and progressive MS.                                            We have conducted several pilot st ..read more

“You want me to come back again tomorrow?” I said through gritted teeth. My cheeks were twitching with pain and I asked, “Are you admitting me?” “No, but you must come back tomorrow to see the neurology team, and we will start you on steroids.” I shook with rage. It had become too much. The … Hospitals: Are they for patient care or doctors careers? Read More » The post Hospitals: Are they for patient care or doctors careers? first appeared on ..read more

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 » The post The Multiple Sclerosis rollercoaster brings fatigue and poor mobility first appeared on ..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 » The post Patient engagement: How one pharmaceutical company is failing to adapt. first appeared on ..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 » The post Excluded, again, by the people who say they want to include us first appeared on ..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 … The birthday gift I would like to give back!! Read More » The post The birthday gift I would like to give back!! first appeared on ..read more

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 … Healthy Living Tips for New Wheelchair Users Read More » The post Healthy Living Tips for New Wheelchair Users first appeared on ..read more

How do you adjust your life when the rules of your illness change? I share what I am doing now. The post Multiple sclerosis: The rules of my illness have changed appeared first on A 30 Minute Life ..read more