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 🙂
May 17th, 2012
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.
May 13th, 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.
May 5th, 2012
I have spent the day troubling myself with the design of a weather compensated central heating thermostat, a relatively simple concept, but for some reason I cannot get my head around it. Designs similar to this used to just fall into place, is this the engineer’s equivelent to writers block? Or have I just been away for too long?
With Phenylketonuria, there is the possibilty that intelligence can fluctuate according to the levels of phenylalanine (Phe) in the brain, I have been on a strict diet for more than a week, I know the Phe levels in the blood follow closely with eating habits, but the concentration within the brain lags somewhat, and as I have been off diet for a considerable long period, maybe I need to wait before the concentration subsides and I become more focused. This is something that has blighted my everyday functioning when it comes to the way I eat. So my relationship with food is stained, knowing I have to eat correctly to function normally is obvious, but functioning normally doesn’t necessarlly correlate with continuing a special diet. All I can do is continue with the diet and hope it improves my cognitive processes, but there is a little part of me that is sceptical, how will I know unless I endure this?
October 16th, 2011
Sit out in your garden and facing north this evening and stare up into the sky, astromoners are predicting that the Dranonid meteor shower could produce upto 1,000 meteors per hour, that makes it officially a storm. They will emerge form the constellation of Draco, hence their name – Draconids, though there are varying forecasts for the actual intensity. Ordinarily, the Draconid meteor shower is a “sleeper†with just about 10 meteors per hour. But this year, the Earth is forecast to pass through more of the comet 21P Giacobini-Zinner’s filaments than usual according to dust stream models used by scientists, These models simulate dozens to hundreds of meteors per hour, given this large range, the shower could be either quite a spectacle or a bit of a let down. ’21P Giacobini-Zinner’ is a periodic comet which returns every six years and four months.
One problem for potential spectators in the south of England is that it could well be cloudy when the peak is expected between 7pm & 10pm BST (1800 and 2100 UTC, these times varied a little in my research) but I am keeping one eye on the latest satellite forecasts in hope 😉
Update 1845: Err… complete cloud cover and no breaks looking at the satellite imagery, looks like a night in. 🙁
Update 2116: A clearing in the clouds and I saw ONE very bright Draconoid!
This photo doesn’t include the meteor, but it was taken in the same vicinity, about 67 degree elevation SSW.
October 8th, 2011
Neutrinos. Faster than light and unaffected by ordinary matter, the idea of a neutrino communications transceiver could be a possibilty. So instead of dragging fibre optics across the seabed for miles and miles and all the technical challenges that brings to light, such technology could channel a stream of encoded neutrinos straight through the center of the earth, unhindered, without the need for focusing or amplification.
Current research into crystalline structures such as sapphire for detecting neutrinos is not exactly successful…yet. There is also a big problem in actually producing them, one theory (that we all are familiar with) is that if a crystal can detect such illusive particles and oscillate, then the same crystal if oscillated in the same manner, will produce neutrinos, these can then be encoded and directed more precisely than a laser.
“A neutrino beam a few centimetres wide and with the same energy as a 20-watt light bulb would interact with normal matter so infrequently, it would lose barely a few million billionths of its power as it journeyed through the Earth!” [1]
Oddly, Pirelli (Yes The Tyre Manufacturer) are providing funding for the project, they are a world leader in fibre optics, something that would be superceded by this technology so it makes sense they want a piece of it. Naturally there is sceptism but also enthusiasm out there on this subject, but all the same it’s kinda cool this sort of research is being undertaken, although the product of this research is unlikely to affect our lives for many years, if not decades, if at all.
[1] Matin Durrani – New Scientist vol 182 issue 2443
September 27th, 2011
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