Before radio hit the airwaves in the early 1900s, before satellite TV brought hundreds of channels into the home, and long before devices like smart phones and video game consoles connected via the Internet, families often gathered in the family parlor. Originating from the French word that means “to speak,” the home parlor was used for entertaining guests and oftentimes displayed mementos, photographs and other family possessions.
Today’s “social space” has moved out of our homes and into the somewhat less-than-cozy corners of the World Wide Web. However, thanks to audience fragmentation, I and the other 7 billion people that make up the planet are able to break through geographic boundaries and communicate with other individuals who relate to or have experienced similar problems.
As a Phenylketonuria (PKU) patient diagnosed in the early 1980s, I created the PKU Parlor blog as way to both document my experience in dealing with this genetic disorder and as a way to connect with other individuals who are experiencing the same challenges as I am.
Whether you are a PKU patient yourself, or you know someone with PKU, I hope you enjoy my ramblings and please feel free to comment whenever the mood strikes you!
–NM
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Hi Nicole, from what I understand, PKU is a disorder of the biochemical pathway relating to phenylalanlne metabolism (meaning you need to limit intake of that amino acid). You probably know a lot more about it than I do! However, people in the biosciences know it VERY well, and even use it as a model for understanding metabolic pathway disorders (which means that they understand it pretty well). We all have thousands of enzymes in our bodies. And each one is designed to handle a very specific task. When they are all put together, the make a “breakdown” route, or cascade/pathway, that starts with a certain molecule, and end with with certain product. When one of the enzymes in the pathway is missing, however, everything stops at that point, and there’s no way to move on the the next step (sounds like a lot of my experiments!) So everything gets stuck at an intermediate place. Phenylalanine is one of three conjugated amino acids (actually four, including histidine) with electrons in a ring structure. In chemistry, conjugation leads to lower energy structures, and that usually has something to do with light. Sot these three (four) amino acids interact with electromagnetic radiation in the near UV and visible light range (these are the best amino acids to work with, experimentally, because they are easy to detect, and so are easy to purify, and I wish AI only had to deal with them!). In people, it’s not such a great thing, however, because buildup of any metabolic intermediate will cause toxicity. So take it easy on the Diet Coke! (or anything else with a similar artificial sweetener). Fortunately, it can easily be addressed by diet choices.
RAWK!! I am always looking for other people with PKU closer to my age (I am 30) that understand. I am currently on peg-pal trial at childerns hospital in wi.
Hi Andee! Welcome to my blog. I’d love to hear more about your trial…be sure to check back in often and keep in touch!
Hi, this parlor looks soo cool. My names Rae, I’m 51 and have CPKU. I in south Texas and most followed by Texas Children’s. I’m just finishing off a bottle of Camino pro restore, it’s really great! I could live with this! It’s even better than bettermilk…lol!