A Cure?
Research development for an injection to “cure” PKU? Click the picture for link, I will research this further before editing this post.
4 comments May 24th, 2012
Archive for May, 2012
Food
So the diet is hovering over me again, the other half is now cooking me low protein dinners, just need to sort some bread. I used to bake my own from Loprofin Bread Mix which is nice but my motivation to cook it tends to wither and the packet stuff is a bit naff. I have seriously fallen behind with what is actually available out there for PKU’ers and I’m sure there must be something that’s convenient and doesn’t end up like that green stuff used for flower arranging after two days. Formula is the next biggy, I’m currently using MaxamumXP just because I’m used to it, but again it needs to be made up and something I can grab out the fridge on my way to work sounds like a much better choice.
On another note, I lost my flue analyser today, opened the back of the van and there it was…gone! It’s not conducive to making a good impression to your employers when you throw away £800 of theirs, that kind of ruined my day until I had a phone call from the office to tell me I had left it behind on a previous job, something I had considered too, relieved? Yes, so I chirpily continued my exploits for the rest of the day and came home a happy bunny to stuffed marrow 🙂
3 comments May 17th, 2012
Aspartame Control.
Just watched a film called the Esoteric Agenda and was interested that Phenylalanine (Phe) in the sweetener Aspartame got a mention and that one of the effects of aspartame mentioned was the inability to think and the feeling of being in a fog. Of course it was tied into a string of other facts about fluoridation of water supplies etc. that are deliberately in place to control the population, debatable but interesting.
The problem here is that if you are normal (do not have PKU), any Phe content would be metabolised by the liver in the usual way and not present a problem, it certainly wouldn’t increase the blood levels twenty fold as an ordinary diet would in a person with PKU. I experience cognitive function delay and problems with the simple recall of words during conversation along with an inability to concentrate, this is all tied in with being off diet at which my blood levels of phenylalanine are likely to be 1200-1500umols/l, in context the levels of someone without PKU would be in the region of 60umols/l. If I were ‘on-diet’ my levels would be expected to be 700umols/l or lower, preferably 300-400, that is still five to ten times the norm and the problems I experience improve dramatically. So my argument is; does the ingestion of aspartame in moderate amounts on a daily basis increase the levels of phenylalanine in the blood of people without PKU to high enough levels to cause the ‘inability to think?’ I think not.
As for other claims in the film, I am now even more skeptical, two hours of my life I will never get back.
Add comment May 13th, 2012
Fog
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.
2 comments May 5th, 2012
