So You're Thinking About Applying For The PKU Scholarship...

The last couple posts I have mentioned that I was working on a big project.  Well it's time to reveal what it was...

The Gunthrie-Koch PKU Scholarship!!!

The deadline was today (October 15th).

So I decided to write a short guide based on my experience to applying for this awesome scholarship.

1. First off, start early.  I would suggest around August maybe even mid-July.  It will take at least a month, and October is around mid-terms.

2. Print everything out.  ESPECIALLY the checklist!  The checklist will help you make sure that you have everything when it's time to mail off.  Believe me, you will thank me for this tip. 

3. Start by ordering your ACT.  It will cost money, but think of it as an investment.  If you get the scholarship, you'll get your money back.  Also, getting your ACT processed and mailed will take around 2 weeks normally.  If you order it priority it will cost a lot more.

4. References.  You need 3 references as well as a reference from your clinic.  Talk to your dietician or doctor and ask them to do it for you.  And choose your other 3 references carefully.  You need someone who won't constantly forget to do it.  Make sure you drop off the papers and pick them up personally.  Have a definite deadline.  People are busy, so YOU need to be on top of it.

5. Transcripts.  YOU NEED BOTH YOUR HIGH SCHOOL AND COLLEGE TRANSCRIPTS!  I almost didn't catch this.  So I just want to make it clear for others.  You need both.  They shouldn't take long.  Just make sure to get it done!

6. Just sit down and fill out the packet.  It's the easiest part of the scholarship.  The trick is actually sitting down and DOING it.  Pick an afternoon.  Sit down.  Do it.  WARNING: There are financial questions, so you may have to ask your parent's about income at some point.

7. Essay Questions.  Honestly you should read the essay questions back up near the beginning.  Then spend the whole process thinking about your answers.  That way you already know what your going to say when you start typing.  It's easier.  Remember: they're looking for excellent students with PKU.  So it's okay to put yourself in the best light.  How else are they supposed to know how great and deserving you really are? 

Just keep chugging away at it.  It'll be over... eventually.  :)

Here is the official webpage:                
http://www.pkunews.org/guthrie/guthschol.htm

Good luck!

(And tip: If you're coming up at the deadline and aren't quite finished it's okay to ask for an extension.  If it's still before the deadline, you'll still look like a professional.  People have to ask for extensions on projects all the time.  Just make sure you ask BEFOREHAND.  Otherwise it's just late. )

Wish me luck with my application! :)

PRISM301

YAY!  I post on Tuesday again!  (I'm almost done with that project.) 

Now before I get into my main topic today, first things first.  PLEASE ANSWER THE POLL THAT'S TO THE LEFT OF THE SCREEN (where the quotes of the week usually are)!  I want to write posts that interest you.  But in order to do so, I need to know what you guys are interested in. 

In fact, go do that right now.  I'll wait.

................................................................................................................ Done?

Good.  Moving on.

Do you remember a certain post about a medication that goes by the name of PEG PAL?  If not that's okay.    (here's the link if you want to take a look at it: http://www.blogger.com/blogger.g?blogID=7281517512816906548#editor/target=post;postID=350263321752237644;onPublishedMenu=posts;onClosedMenu=posts;postNum=31;src=postname) 

It basically talks about PEG PAL and what it is. 

Well, here's an update.  PEG PAL is in experimental human testing.  The study is actually being called the PRISM301 STUDY.  I actually got a flyer about it early August.  Apparently you qualify if you are:

• 18-70 years old
• Have a diagnosis of PKU with a high Phe level
• Have not yet received PEG PAL

You need a high Phe level so that they can see if PEG PAL works on lowering it.

During the study you're supposed to stay on your PKU diet.  You meet with the study clinic several times. (I'm basing this information  off of their website.)  During the appointments you will participate in blood and urine tests. They'll teach you how to give yourself the injections, and you'll do so once a day, and you'll keep a diet record for three days before certain tests.  Then there's a weekly phone call update.

Sounds like a lot.  But it IS a study.  And imagine if it worked? 

I'm not doing it.  I  know how that sounds.  But here my reasoning:  I'm a poor college student with no car.  The travel reimbursements wouldn't cover my travel costs.  And I'd have to miss a lot of school.  So... maybe later.  Probably not.  It will probably be done with testing before I'm done with school.  But maybe...

Anyways, if you want learn more about the PRISM301 Study the website is: www.pkutrial.com. 

See you all next week!

Nothing But Stress

Remember that project I mentioned last week?  Still working on it.  So once again, I'm sorry for the late post. 

Between this project, midterms, the ever-present social drama, and bad weather I'm finding myself in a lot of stress. 

Did you know that stress is made up of external or internal factors and that your body simply responds to it?  Well it does. 

When your feeling stressed you trigger the locus coeruleus (a small part of your brain next to the brain stem).  That triggers the hypothalamic-pituitary-adrenal (HPA) axis and the sympathetic nervous system (SNS). 

The SNS releases epinephrine and norepinephrine.  Which are stimulants.

Everyone reacts a little differently to the stimulants.  But some symptoms that is very common is an increased blood pressure.  Basically your body is getting into "Fight or Flight Mode".  Short amounts of exposure to stress isn't bad.  In fact, it can be quite healthy.  However, long exposures to stress is bed for your body; especially for the heart.

So... 

Some good things you can do for stress include:

1.    A 20-30 minute meditation session
• According to www.medicinenet.com (note: link doesn't work) "A one or two 20-30 minute meditation sessions a day can have lasting beneficial effects on health."  Some adaptions I think would work include: taking a nap, having some quiet time, or writing in a journal.
2.  Yoga
• Yoga uses breathing exercises, meditation, and light exercise. Because of this it's considered one of the best stress relievers.  Plus if you continue to do yoga your body can handle stress better.
3. Happy Music
• Music affects the way you feel.  So when your stressed and you listen to happy music with a positive beat, you're going to feel happier.  If it helps go ahead and dance to your music.
4. Breathing Exercises
• If your in a time crunch and don't have time to meditate or bend in half... just breath.  Breath slowly.  Become aware of your breathing.  It's actually a really cool activity.  When you just focus on your breathing, everything else just kind of fades away.
5. Laugh
• Go talk with friends.  Play games.  Laugh.  De-stress. 
6. Exercise
• Actually according to recent studies (that I read about on www.medicinenet.com ) exercise is one of the best... if not THE BEST thing you can do for stress.  Since your body is already in fight or flight mode, it's ready to go.  It's ready for action.  

Life is stressful.  There are always things that need to be done; things that demand our immediate attention.  But it's not healthy to life in a constant state of stress.  No matter who you are.  So, net time you're feeling really stressed try one of these out. 

Thanks for reading. :)

Restaurant Review 4: How Hot Is Too Hot?

What I know about Mongolia:
1. Genghis Kahn created the empire, which became the country.
2.  They have good food. 

How do I know this?  Well the first one is thanks to Wikipedia and google.  :)  The second one I experienced firsthand when I was taken to HuHot Mongolian Grill. 

Okay, so you walk in.  It's this nice place with a nice atmosphere... good music playing.  But the most impressive thing that catches your eye is the round grill.  You can't wait to see it up close.  But before you wander up to it; a host comes up and seats you. 

That was my first impression. 

Once seated, Drinks and appetizers are ordered.  (By the way, they have the cool drink machine that can get you several unique flavors of any soda.  I ordered a Peach Sprite!)  As far as PKU proof appetizers are concerned there's only one: Spring Rolls.  (Since its a buffet, I skipped the appetizers and moved on to the main course.) 

Which is the best part of the whole meal.    The server gives everyone a bowl and you head a build-your-own-Asian -food -bowl Station. 

First, the noodles.  They have 3 types including egg noodles.
Second, veggies.  Fill the bowl up!  They have all sorts of grill-able veggies. 
Third, ladle the sauce on.  Choose a sauce... or a variety of sauces!   I was told 5-6 ladles of sauce is enough.  Any less and it'll burn onto the grill.  Don't know what sauces are PKU proof?  They list ALL the ingredients RIGHT there on the signs!!! (Oh and they also list how hot each sauce is.)

Then comes a cool part.  You give your bowl to a griller.  He dumps it onto the grill.  It's way cool to watch him work!  And sometimes, to clean the grill he sets it on fire!  SO COOL!

Then you try it.  If you don't like it... you can tell the server and he'll take it away.  And you can try again! 

It's a lot of fun! As well as really tasty! 

I like it a lot! (As you can tell.) 

Only problem... it's pretty expensive.  Dinner is $13 each.  Lunch is $8.49 on weekdays, $10 on weekends.     

Well, I guess it IS a buffet. 

How does it rate on the PKU friendly scale? 

• Well based on the many different options they give you as well as labeling the sauces...  I'd have to give them 8/10.  They could have more PKU friendly appetizers and desserts.  But they scored pretty good.  And I'd recommend this restaurant to anyone craving Asian food anytime.  :)

*Sorry about this post being late, and not as well-done as usual... I'm currently working on a big project.*   

 

Basic PKU Genetics

PKU is a Genetic Disorder. 

It's literally a mistake in the DNA causing a mutation of sorts to occur.  This mutation happens in the PAH gene.  Usually the gene converts phenylalanine into nutrients we can use.  Ours can't. 

The mistake is genetic.  That means it carries on down the generations from parent to child.  It is also recessive.  It needs both parents to "carry" the gene in order for it to be apparent in the child.  If one parent is not a carrier, then the gene is smothered by the dominant gene.

So to get a PKU kid you need each parent to be a carrier.  Simple. 

But what happens when the PKU kid grows up and starts their own family?  What happens to the genes then? 

Well, that depends on the person they are marrying.  I drew a couple pungent squares to illustrate the concept.  (excuse my not so good pictures)

First off:

• The non-PKU gene is a "X"
• And the PKU gene is a "x"   

A non carrier will have "XX"
A carrier will have "Xx"
A PKU'er will have "xx"

First diagram: If a PKU'er marries a PKU'er

 

Looking at the diagram you can see that each kid will have a 100% of having PKU.

 

 

Second Diagram: If a PKU'er marries a Carrier

Looking at the square you see that each kid will have a 50% chance of having PKU and a 50% chance of being a carrier.

 

Last Diagram: If a PKU'er marries a Non-Carrier

Each kid will have a 100% chance of being a Carrier.

 

Now, look at the way I worded each chance.  "Each kid."  It's like rolling a dice.  If you get a 6 on one roll, does that mean you can't get a 6 on your next roll?  No.  For each and every child there is the same amount of chance that they will have PKU as they will be a carrier (at least if you marry a carrier). 



So, basically.  Those are the statistics for a PKU'er who decides to get married and have a family. 

Genetics is fascinating.   

Have a wonderful week!

Explaining PKU: In 3 Different Ways

How does one accurately describe PKU without misleading people?  How does one brush off the subject, because they have somewhere to be?  How does one give enough information without making the listener's head explode? 

In general, what does one say when someone asks about it?

This is a problem that I'm fairly confidant every PKU'er has pondered.  (And if not they are now.)

Well, how much time do you have?  And how well do you know them?  (Imagine giving the person next to you on the bus a detailed explanation.)  And how interested are they really?  (What if they ask just to be polite?)

Here are 3 different ways to describe PKU going from general to detailed. 

1. PKU For That Total Stranger On The Bus
• Phenylketonuria just means I have to be on a low protein diet.  (And beans and soy and tofu are still high in protein!)
2. PKU For Polite (but Clueless) Friends
• Phenylketonuria is a genetic disorder where I can't digest proteins as fast as other people, and the excess proteins block my brain synapses.  What it basically means for me is that I have to limit my protein intake with a special diet.  I count how much protein I get a day, just like some people count calories.  I just stay in a range of _______ (equivalents, mg, however you count it) and I'm fine.  :)     
3. PKU for PKU Enthusiasts (that may or may not be out there)
• Phenylketonuria is a genetic disorder where my body can't digest a certain amino acid: phenylalanine.  (Amino acids are the building blocks of protein.) Phenylalanine is used to make Tyrosine, which is very important.  That's why I drink my (insert whatever you call your formula here).  It gives me the tyrosine that I need, as well as other nutrients that I don't get because I'm on a low-protein diet.  I need to be on a low protein diet because the phenylalanine (as it builds up) leads to high Phe levels in the bloodstream.  Which leads to problems with thinking and behavior.  That's the reason why I need to get  my blood tested frequently.  So I can adjust my Phe intake as I live.  If I go off-diet it can lead to brain damage.  Which is pretty scary so I want to stay on diet.  But thanks for listening and thanks for really caring about my diet.  It really means a lot to me to have someone who really wants to understand. 

There!  Now you have a way to describe PKU in most situations.  :)  And worst comes to worse, and they just don't understand... tell them to google it.  OR EVEN BETTER!  Give them my blog address!  They can read this and problem solved. 

I was just reading back and I really like that PKU Enthusiasts reply... now all I need is for someone who knows nothing about PKU but really wants to know everything about it to come up and talk to me.  Haha.  :) 

Anyways, have a good week.  And be happy knowing you have a ready made speech for the next person who asks about PKU.  :)  Smile!
  

Kryptonite

My Kryptonite is Math. 

That's not so unusual; it's a lot of people's Kryptonite. 

Recently I read an article that indicated that math is the Kryptonite of most Classic PKU'ers (which I am).  (the article is: http://pkuinfo.org/_media/pku/antshel_2010_mgm.pdf )

And it doesn't seem to be a coincidence!    

We all know that PKU affects the logic and math center of the brain first.  But the people in the test were already diagnosed and treated early on! 

Here's the abstract of the paper:

• Despite having average intellectual abilities, academic difficulties are relatively common in children and adolescents with PKU. These academic difficulties may be a function of attention deficit hyperactivity disorder (ADHD), executive functioning deficits, and processing speed deficits, all of which are known to affect academic performance in non-PKU populations. This review focuses on what is currently known about academic performance in youth with PKU and offers suggestions for future research.

Basically what they've found is that treated PKU'ers that do well in school still have problems with math.  If you look closer at the article it says that they don't really know the reason why PKU'ers have issues with math in particular.  But a logical guess (based on non-PKU people) is that it has something to do with ADHD, or processing deficits, or something like that. 

Here's my own experience with Math and PKU:

     As a kid I had a set-back with math.  I moved from one school district to another and the curriculum didn't quite match up.  As a result I learned my times tables in 5th grade... with help from my parents.  By 6th grade I had pretty much caught up.

    Then middle school arrived and so did Algebra.  I was an average student.  I had trouble with tests, but my teacher was willing to work with me.  And I was fine.  In 9th grade that teacher even invited me to be a special program where you take 2 math classes in 1 year.  (Apparently my CRT scores were pretty high)  I was the worst in the class.  But I still passed. 

     High school.  10th grade I took Pre-Calculus.  It was a rule that year that you couldn't have lunch unless you got at LEAST an 80% on your tests.  I spent pretty much every lunch that year in the math classroom, trying to pass each lunch.  It was embarrassing!  I had to take each math test at least 3 times to pass it.  And by that point I'd just memorize the questions.  The next year, I repeated PreCalc, I chose to.  I didn't want to be in AP Calculus unless I KNEW how to do PreCalc.  They had changed the rules for that year.  (Thank goodness!)  And to pass you had to have a test score that corresponded with how much homework you turned in.  That year my math teacher (different guy) just let me fix my mistakes on my test and turn that in. 
 
    12th grade.  I took AP Calculus.  I got good grades (despite my pathetic test scores).  And I flunked the AP test. 

From my experience I have observed a few things.  I would understand the problems in class.  I would understand it on my homework.  And yet... I wouldn't remember it on my test.  I took the ACT test twice.  The first time: I got a 24.  The second time: I got a 21.  Now I didn't study at all for the 1st one.  But the second one I did!  And still got a lower score.

It was like I had good math days, and bad math days.  And I had no way to predict what it was going to be!  It was frustrating!  I began to loathe math! 

But, it seeing this article... helped me understand that it wasn't all me.  Yes it was partially me.  I still needed to study.  I still needed to try my best.  I couldn't blame the PKU for everything. 

     It's small setback.  A little bit of Kryptonite. Kryptonite hasn't killed Superman yet.  So I guess I'll just have to live with it.  And become a little stronger, just to compensate.