Posts filed under 'PKU'

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

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

Dwindling Intellect.

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?

1 comment October 16th, 2011

Whitsun.

Wahey Bank Holiday!!! Although I was supposed to be on call I wangled it off by conspiring with a fellow engineer… Sorted 😉

Anyway now I’m moving stuff around on the PC, backing up some recent stuff for when I upgrade…hahaha! With money the way it is, that is a slight falicy. What to do today, hmmmmm… I’m going to dissapear into the woods for a while and organise a few things to get done next week, I am off work you see…For 5 Days!!! WOOHOO!

Would love to set a radio up but with no one on the other end any more it seems a bit like my energies could be put to better use in other areas, regrettably. I have mentioned the idea to Lisa that she could do the Novice course, which wouldn’t take a long time and is relatively easy, but she just isn’t interested, which is fair enough.
At times though I do get the feeling I am having my personailty sapped from my soul while all my interests are dispersing and becoming diluted in the way things are. I guess it’s up to me to get up again and soldier on regardless, getting back to the gym will help, so will staying on diet. All stuff for my list.

Add comment May 30th, 2011

Melancholic Muse

Having been signed off for a week by the old Doc I have kind of moped about a bit getting in the way and upsetting Lisa’s routine. I have been known to be a little spontaneous so this quite possibly wont be the last time routines go out the window, or why not have complete randomness as a matter of routine? I did say to work I would be back in Thursday but was told to ride out my sicknote in case anything happened to me, is that anything to do with Health and Safety or are they just being nice? Whatever the reasons I’m back tomorrow without a doubt.
What’s the matter with me? Essentially nothing, except I’m struggling with certain areas, my diet for one which is a downward spiral, I need to be on top of that to be able to organise it, do you see the potential for failure there? If I eat a regular diet my mood differs, I become a little glum and melancholy and see life as drudgery specifically in areas of responsibilty, I certainly lose my vitality. So I’ve needed the time to get back on top of things which seems to have been worthwhile, all I need to do now is sort out the people at work.

2 comments October 4th, 2009

Boring Blog!

This blog is getting quite boring, my posts used to have a topic along with pictures but I cannot seemed to be arsed anymore. I did at the beginning, consider devoting my domain to a single subject, the most obvious were Phenylketonuria, Radio, Electronics or Guitar, but it kind of evolved through my lack of enthusiasm into an inane and mostly pointless collection of ramblings that very few people, seldom read. So I have been re-considering a topic, possibly a day by day diary with photos of a project I could undertake, I am trying to resist an informative site about P.K.U. with tips and recipes etc., there’s quite a few out there already and I’m not prepared to deal with PKU in pregnancy or infancy only adulthood, that may seem a little biased but I will getting no renumeration. So I must excogitate for a while and think of my whys and wherefores, I will have a more settled foundation from April 24th when there will be a more fruitful outlook… at which point time will tell.

Add comment March 6th, 2009

Soup Not For The Faint (F)hearted

Bowl of SoupDecided to make one of my large generic vegetable soups today which end up very tasty and nutritious and last a few days… I summarised my dietary situation and guessed my phenylalanine levels would be high as I’d eaten some fish, tut tut… I have an amino acid supplement tyrosine, which I take as it battles with phenylalanine across the blood brain barrier and as my levels would be high I decided to add some of this apparently tasteless powder to my soup. Oops! it tasted bloody awful, what a waste of all those veges, let alone time and preparation. So I did what the Indians do when meat has been lying rotting on the plains in the middle of summer and they want to eat it, I used a whole (nearly) jar of hot curry paste, added some garlic, tomato puree and extra seasoning. It seemed to do the trick and was actually reasonably palatable. Having had a couple of large bowls today I’m beginning to get the full effect though, it’s a good job I’m on my own and don’t smoke.

3 comments December 10th, 2007

Am I Strange?

Is it possible for your neurons to rearrange overnight? If so, I can sleep in peace knowing that it’s not at all weird to go to bed with positive plans and ambitions for the following day’s activities, only to wake the following morning feeling like going on a balloon ride over the Himalayas. One thing I know people can rely on me for is my unpredictability, but it doesn’t really help me much, I can try and think of a way of putting my unreliability into a positive perspective but anything that involves routine, strict time-keeping, or meeting deadlines I eventually find excruciatingly tedious beyond the realms of the imagination. One thing I am actually doing at the moment is sticking to my PKU diet (a diet in which if I eat over a certain amount of protein, creates a chemical imbalance in my brain and can cause all the effects I seem to display) which is unrelenting in tedium, but tends to give me a more steady mood and an ability to concentrate better, we’ll see what the longer term benefits will be the future.

2 comments December 4th, 2007

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