hey i jsut wanted to start this topic as i dont see a search to veiw members .. so i thought it would be helpful to have plave to come introduce urself.. give ur name, age and location. and maybe some facts about u and ur pku.
ill start it off.. lol
My name is Amanda Cosburn , im 21 from Victoria Bc canada.. (victoria is on vancover island) i have naturaly blonde hair but i dye it dark brown almost black..(ill try to post a new pic when i get home from work) ni am a recepsionist at my local lumber/construction store. i will be going to college in the fall to become a counselor. i hope one day to open a non profit metabolic/genetic disorder suppport center, for ppl with PKU or other disorders.. u can find me on facebook or msn .. anyone feel free to contact me. i love meeting new ppl!
Hey, Amanda! nGood to meet you…. nMy name is Kathleen Adams, and I live in Upstate South Carolina. I am 30 years old, one of the older PKU “kids”.
I am currently off diet, though I still drink my formula sometimes and get my blood checked (rarely). I would like to change this but the truth is it’s very hard to go back once you’ve been eating things like regular bread, pasta, etc., and not thinking about phe at all. I would like to get on PreKUnil as soon as possible but I have to contact my nutritionist and see how open she is to this treatment.
I am currently in college for an Associate’s Degree in Occupational Therapy. For those of you that don’t know what that is, it’s okay, most people don’t. Basically, it’s kind of like Physical Therapy except Occupational Therapists work with the upper half of the body rather than the lower, and we focus on fine motor skills, like writing, brushing your teeth, etc. For instance, a person who recently had a stroke would come to me so that I could help them learn how to use their bad hand again (stroke victims always lose feeling in one side of the body).
Other than that, I live with my boyfriend of one year and 3 months…..we have two doggies that I love dearly. If we get married we have agreed that we will adopt internationally. I just recently opened up about the PKU and let him know what it’s REALLY about, and he is going to try to help me with my diet and also try to help me get on PreKUil.
So, that’s my story, sorry it’s so long. Hey, all of you out there, you need to reply to this! It’s up to us to keep in touch and this a good way to do it!
hello kathleen, so happy to have u respond and to here about all ur sucess in life! its very insprieing! how is school treating you? i see alot of posts on here about ppl with pku in school and they have so many questions and worries. i find that for me work with pku is not very diffrent from highschool with pku. so i dont expect college to be any diffrent next year. Am i wrong? should i put a little more thought into ? after all when im oof work at 5:30 im done for the day adn usually asleep by 9pm… and with shcool ur not necsiarlty done when the bell rings…theres uslually a lot of time consuming homework… how do u deal with the long hrs and schedules? for me in pn a five hr scheduale . i have breakfast at 7, lunch at 12 , a snack or milk at 5 and then dinner at 7 pm. i have my forumla (which i call milk) with each meal. do u have a schedule for urslef? if so what is it like?
Well, Amanda, honestly, I go to a technical college, and I only go there during the day. So, I really don’t have to worry about dorm life or anything. I don’t think I would have survived at a regular state college. Too little time and too many other choices (regular pizza, yum –the staple of the college diet). You are going to find if you go to a dorm and even just at a technical college, your time is going to be severely limited. Even though I don’t measure my food anymore (haven’t done so in YEARS), since you’re doing good so far, I would suggest pre-measuring food. At about the time you start college, you will start wishing that frozen, premeasured PKU meals were available. I would make pku pizzas and freeze them. As a matter of fact, make a bunch of anything you can and freeze it. Then I would start inquiring into pill-formulas, simply because it would be more convenient than having to mix something up, keep it cold, drink it in a college cafeteria, etc. I don’t know, that’s just me. Also, I am not really an expert on this because I do go to college and then come to my home after classes. I really am glad that I didn’t have to do the dorm thing, but that’s just my opinion. I think other PKU people have managed to do it successfully.
You can probably expect your schedule to go out the window when you start college. Every day is different, at least for me it is. Although, in my program, we do have scheduled lunch times, which is nice. We have a kitchen at our school where we all eat lunch together. To all graduating high school students, I suggest taking a year or two off before college, so that you have a better idea of what you want out of life. If I had gone with my first career choice when I got out of high school, I would have been a soap opera actress. Whatever!
lol i do all that now pretty much.. and i have’ent messured my foods since i was a kid. i bake a hole lot on weekends then freeze it for my work week , and idont have to mix my milk cause i have the pku coolers and milk boxes. and if i get into the college i want i will be doing it from home, evenings and weekends. i also took 2 yrs off after highschool. it will be 3 by the time i go next year. thanks for all ur advice i will keep it all in mind. ill even look into gettign the frozen medly meals from cambrooke foods for college!!!