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.




 

The Tigger Theory

The other day I attended an inspirational talk about "Being Happy".  And something the speaker said really stuck out at me.

 He said: "Why be an Eyore when you can be a Tigger?"  (The speaker's name is Kevin Miller for anyone who's interested.)

I took that question and expanded it in my own way.

So... what's the answer to the question?  Why are we Eyores when we could be Tiggers?  What makes a Eyore and what makes a Tigger? 

Eyore is an old, depressed donkey that has a tendency to loose his tail.

Meanwhile Tigger is a delightful, exuberant tiger that's always bouncing all over the place singing his little chants.  Even the way he spells his name is dramatic with a

"T-I-double GAH- ER". 

So why would want to be Eyores?  Being a Tigger sounds a whole lot more fun. 

Let me go off on a little tangent and somehow return to this question later on.

One of Tigger's favorite chants goes like this:  "The wonderful thing about tiggers, Is tiggers are wonderful things! Their tops are made out of rubber!  Their bottoms are made out of springs!  They're bouncy, trouncy, flouncy, pouncy.  Fun, fun, fun, fun, fun!  But the most wonderful thing about tiggers is I'm the only one!"

Everyone is different. 

For example, I'm fairly certain I'm the only left-handed, LDS girl with PKU that writes blogs and stories, and is a total bookworm.  (And if you find anyone with these characteristics that's not me, let me know!  I want to meet this girl!)

Tigger is happy because he embraces his individuality.  He likes being different. 

Now apply that to PKU... (because that's what this blog is dedicated to)

PKU makes you unique.  Embrace it!!!  Teach others about it!  Wear it proudly on your shirt!  (Seriously, if you make a shirt email me a pic!)

Be a Tigger!  Stop worrying about what people think about you and embrace your uniqueness!

Don't be an Eyore, all gloomy and sad.  Worrying that people will think you're weird because you're always carrying your formula around.  Worrying that people will ask why you aren't eating what their eating.  Worrying all the time that people will find out you're different.

STOP!!!  You can be different and still be happy!  People will probably ask questions about PKU; answer them proudly.  People will probably say, "I'm so sorry!!!"(Or some other irritating comment that makes you want to grind your teeth.)  Be nice.

Just remember:

Be different. 

Be a Tigger.

Be Happy.

BE YOU!         






   

Beating the Heat

I don't know about you guys, but where I live it's been in the 100's most of the summer (degrees Fahrenheit).  No one wants to cook when it's already boiling outside, in fact no one wants to GO outside!  So we've had to be pretty creative to "beat the heat" and still have a fun summer.  Here are some fun HOT day things:

1. Make Popsicles!  (SUPER easy.  Just make juice or lemonade and put it in ice cube trays.  After it's firmed a little, put in toothpicks and let it freeze all the way.)
2. Go to the pool  
3. Visit a beach/lake/ pond SOMETHING like that.  If you aren't near one you could always make an indoor beach and pretend (great for little kids)
4. Play in the sprinklers/ have a water fight (not JUST for little kids. ;)
5. Freeze some fruit and eat that.  Healthy as well as delicious!
6. Make a smoothie! ;)
7. Set up a tent and sleep outside (watch the stars they're amazing!)
8. Take walks in the evenings when it's cooling down.  (I know in my neighborhood, everyone is outside then so it's a great chance to socialize)
9. Go for an ice cream run.  
10. DRINK LOTS OF WATER!!!  (This is really important on hot days.)

Stay cool, and hydrated.  And have a great week!

*Note:  I know this isn't one of my typical PKU Posts, but if you look closely it definitely is influenced by my PKU lifestyle. :)*

Cheddar: A cheesy sequel

Last week I gave everyone the recipe for Mozerella cheese.  This week I'm giving you the recipe for Cheddar (thanks to sweetroots.blogspot.com for the recipe).

Coconut Milk Cheddar Cheese
Ingredients:

• 2 cans coconut milk (full fat, thai kitchen brand preferred)
• 3 Tbsp agar flakes* (see note below if using agar POWDER)
• 1 tsp balsamic vinegar
• 4 Tbsp tapioca starch
• 1 tsp smoked paprika
• 1/4 tsp liquid smoke
• 2 tsp sea salt
• 1/4 cup nutritional yeast (optional; but definitely gives it more cheesy-ness)    
• Pinch of Turmeric (optional; but gives it an authentic cheese color)

 Instructions:

1. Boil coconut until no longer separated.  
2. Add  white balsamic vinegar, agar flakes, and salt
3. Boil for 15 minutes (no need to boil if using agar powder)
4. Add remaining ingredients one at a time, whisking all the while.  
5. Cook another 5-10 minutes.
6. Remove from pan and but in greased, flat bottom glass dish, or parchment paper lined loaf pan (or rubber loaf pan).
7. Let cool 2 hours.  You could stick it in the fridge when cool and use the next day!  
8. Slice and enjoy (if put in fridge you can actually grate it!  Even if it's more slippery)

 *Note: Agar powder speeds this wonderful process of veagan cheese-making.  With the agar powder you don't have to boil it nearly as long.  Use only 3 tsp of powder!  After you add the vinegar, agar powder, and salt to the milk mixture, let it get a good boil then add all the remaining ingredients one-by-one, whisking all the while.  Remove from heat and place in container.  

   

Have fun with that Cheddar Cheese!  Bye!

Mozzarella Cheese... LOW PRO STYLE!!!

My family makes its own cheese.

That sentence makes me feel really self-sufficient.  Though if I were to be totally honest it's PKU cheese, and it's my mom who mainly makes it.  Haha. 

But now I have the recipe.  So I can make it when I move back to college in the Fall.  And soon you will have it too.  So you can try it too!

Enough chat, here's the recipe:  (it's very very good!)

Fresh Vegan Mozzarella Pizza

Ingredients:

• 1 can good-quality coconut milk
• 1 tsp coconut vinegar
• 2/3 tsp salt
• 3/4 tsp agar powder
• 1 TB tapioca flour

 Instructions:

1. Place the coconut milk into a small saucepan over medium-low heat.
2. Whisk until well-emulsified (aka liquified evenly )
3. Add in the vinegar, salt, and agar
4. Whisk frequently for about 15 minutes or until a small boil occurs
5. Reduce the heat immediately 
6. Mix the tapioca flour  
7. Heat for 5-10 minutes more
8. Transfer to a flat bottomed glass prex dish to slightly gel for about an hour (we actually used silicon bread pans for this, and it worked)

 Then you are done!  You've made your own PKU CHEESE!!!  Don't you feel accomplished?  ;)  

Anyways credits for this recipe goes to www.olivesfordinner.com for their fabulous recipe, that my mom found one day.  They have some pretty good stuff if you want to check it out.  

Thanks!  And I'll see you soon! 
    

Living Examples

     In the past year I have met 3 different people who were all put on diets recently.  The diets were restrictive.  No dairy, no eggs, no grains... basically carbs and veggies. 

Does that sound familiar?  It should ;)  I've been talking about a diet like that for a couple years now.  Haha.  The diet they are on is NOT PKU (there are some differences)  but it is strikingly similar.

In fact, those 3 people have asked me "how I do it".  How do I find things to eat?  How have I followed my diet after all this time? 

     Here is my answer: (note: these individuals were put on their diets after years of no restrictions, which is always harder than following right after birth like I did.)  I just do it week by week, day by day.  I'm not perfect at it (who is?)  But I try.  There are lots of things you can eat.  You just have to look for them, and find things that you like.  True you have to cook a little more than the average person... but honestly home-cooked food TASTES better.  You just need to look,and experiment, and find things you like.  People tend to fall into eating grooves.  Just find your groove.  You'll be okay.

     Just by following their diets PKU'ers are great examples to people put on medical diets.  As I've talked to those three people and given them ideas, I feel like I've helped.  People can look at me as an example. of someone who is doing alright on a diet.  Then maybe they can feel more confident about their own lives. 

     I just want to ask PKU'ers one thing: PLEASE don't be shy about your PKU.  You could help so many people, and not even realize it at the time.  You could be an example that they look up to.  It's just one thing that's helping me stay on my diet, and helping me continue this blog.  So that I can help people.  Which as I grow is something that has become important to me. 

     So today blog post in 10 seconds:  PKU'ers be an example to other people on medical diets.  People on medical diets?  You'll be okay.  Just live it day by day.  :)

Okay, well see you soon.  Thanks for reading this.