Fog

May 5th, 2012

Ooh 5th of May… Not made an entry for a bit so better knock one out so to speak. All is gliding along very smoothly right at this minute, work is ok, other odds and ends are being gathered together and dealt with. I’ve also had my mind on target for something, don’t know what but it will come to fruition soon. Joined a gym… Well joined David Lloyd which is similar but 3x the price, yet to learn what the benefits of paying stupid money are yet.

Still off diet and suffering for it, my memory recall is dire and concentration levels are dismal, “The Fog” I have heard it referred to, which is a simple but brilliant way of describing the world according to an off-diet PKU sufferer, is thickening week by week; it’s weird. Been researching a drug called Sapropterin that helps get what little liver enzyme you left working again to lower levels of phenylalanine in the blood, about 40% of a test group produced good results, but I believe from what I’ve read this drug is more geared towards hyperphenylalanemia rather than classic phenylketonuria (which is me) where enzyme levels for the drug to work are more or less non existent.

So the ‘diet’ is the only way…Boo! I needn’t have to express how difficult it is for me to stay on-diet if you know me in anyway, I was off it without an inkling of the problems it was causing with the most trusted authority of Great Ormond Street Hospital for 15 years, it was only when my brother, who suffers the same condition but wasn’t diagnosed at birth so is severely mentally handicapped, dramatically improved in behaviour after going on-diet that I decided I should be on diet too.

If you are at all interested in the effects of PKU Click Here for a good interpretation from various professionals.

Entry Filed under: PKU