Multiple sclerosis: The rules of my illness have changed
How do you adjust your life when the rules of your illness change? I share what I am doing now.
Patient Advocacy
Is Patient Centred Healthcare wanted by the Irish health system?
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 …
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Yahoo, I am walking again.
I stood, facing the wind, as it brought the southerly warmth all around me. As it surrounded me, I felt joy and gratitude that I could once again walk. Over the last several months, I had stopped my walk, as it was not possible anymore. My legs had been wrapped in the weight of MS. …
The Multiple Sclerosis rollercoaster brings fatigue and poor mobility
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 …
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Excluded, again, by the people who say they want to include us
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 birthday gift I would like to give back!!
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 …
