When the ambulance arrived, the paramedics were sympathetic and could immediately see I was indeed in a terrible state. They agreed things were so bad that I needed to go Accident & Emergency (A&E, the equivalent of the ER in North America) with them immediately.Read More
As many forms of PD begin in the gut, and only later migrate to brain, the initiating and causal gut problems will still remain too after the brain damage has occured. We will certainly need to address these digestive tract issues, therefore, if we are ever to fully heal. In my view, even if we could correct the resulting brain problems tomorrow, if we do not also attend to the original causes which reside in gut then we will not be "fixed" for very long.Read More
The very first drug I was put on after my diagnosis was ropinerole [dopamine agonist]. It was only marginally effective. So my original neurologist kept bumping up the dosage until it made me vomit and have diarrhoea, cold sweats and such dizziness that the only thing I could do was lie down. The neurologist's solution was to put me on, in addition, anti-nausea medications permanently. Later, I self-discovered this class of anti-nausea drugs are not supposed to be used long term.Read More
I hope that my experience might be a catalyst for change, because, in speaking with a significant network of people with PD around the world, there are many with diagnosis and aftercare treatment experiences even poorer than my own. I feel, therefore, we do need an overhaul of how the healthcare diagnoses and treat people with Parkinson's. Simply stated, the current experience of too many PwP (People with Parkinson's) is that they are prescribed drugs as a singular treatment pathway and given a narrative of hopelessness at diagnosis.
In this first entry, many of you will be getting a first glimpse of me and hearing my voice for the first time! But as far as first impressions go, please be warned: you might be shocked, for this was recorded purposefully when the side of effects of my medication were very acute. In fact, I often take another drug to alleviate these medication induced symptoms, so this is not my typical state. The important point to note however is that, over the course of years, without other interventions, what you see here in the initial part of the video will become a more and more frequent state for me. For those who experience such extremes with the condition on a daily basis, our total sympathy – we release this video for you.Read More