This article highlights some of the vested interests in ms healthcare. All the hot and fetid air that gets blown over people with ms who, you could argue, are the ones with most at stake in finding answers concerning their condition are only interested in keeping themselves as able as possible and yet have to watch grown adults squabble and name call.
I think it goes some way to explaining our (I and my fellow colleagues in disease) years' long righteous ire.
The last paragraph is worth reading I, with a vested interest found it a long article but worth sticking with.
All I can be sure of is what has happened more than once, to me. My (or our?) reporting of our own human experience is, it pains me to admit, sometimes not all that reliable. see Nagel question what it's like to be a bat.
HDensityOT (hyperbaric oxygen therapy) which results in all the tissues of the body being saturated with oxygen makes the slowly deteriorating vision in my right eye (started 12 years ago) a little better whilst breathing at pressure. This would lead me to believe that if I were to take oxygen more regularly I might get more permanent improvements.
A side effect of this saturation is better communication with my bladder and a general lightening of the world. Think of the difference between going out under a leaden, grey, glowering dome and skipping out into a cloudless, clear skied day. Trying to measure that difference has proved pretty tricky but our own wellbeing is one of if not the most important things in our world and is unfortunately sorely overlooked in this sixty year old healthcare system that was developed while we still had rationing... times have changed and chronic conditions now abound. Our health service free at the point of need and envy of the rosy bespectacled world needs to change.
We're living longer but there seems very little debate about the quality of that life. Harold Shipman perhaps took it too far but it could be argued that family GPs up until the entry of the pharmaceutical companies and their desire to grow market share had a handle on their flock and couldn't/wouldn't waste thousands on elderly parishioners when there were handfuls of babies and oyounger members of the comunity that could do with a fair crack o' the whip and perhaps some extra attention.
Whilst the bitch slapping mentioned above goes on for humans, in race horses where there is obvious money to be made or lost this vet article mentions the ill effects on 'sport horses' of jugular vein occlusion. No question of whether the condition exists.
I'm not quite sure where this link came from (these blog posts don't follow a straight path from conception to completion) but it sort of neatly illustrates how someone with an ill defined incurable condition needs to read lots of stuff and try lots of stuff to find a way through their own predicament. Holistic rules: believe in yourself and question EVERYTHING else and begin to enjoy the process of de-stupidification!
All healthcare professionals have different priorities to us. After all, they can close the door on our condition at the end of the working day.
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