When your handed a certain situation in life, I feel like you have three ways to handle it.
- Let it define you
- Let it destroy you
- Let it strengthen you
I am so grateful to have this guest blogger, Tyler Richardson, tell us a little about him and answer questions regarding his journey with PKU. This is so helpful to any new parent with a newly diagnosed baby with PKU because this gives you a look into someone’s life that chose to make what to many think is a “bad” situation into a blessing and allowed it to strengthen him. Tyler, you are an absolute pleasure to know, let me re-phrase that you are an HONOR to know. You have uplifted me in times when I was worried about our diagnosis with Boston and I am so grateful to have you in our lives so that Boston has an amazing person/Christian to look up to in the future. Below you will find a series of questions I asked Tyler and he so graciously answered.
First off tell us a little about yourself.
My name is Tyler Richardson. I’m 29 years old. I am married to the love of my life, Alyssa Richardson. God has blessed us with one little girl, her name is Evelyn, and she is the absolute most beautiful thing you will ever see. (Yes, I’m a proud daddy)
I love being outdoors, whether I’m mountain biking, hiking, backpacking, camping, fishing, hunting… you name it. The mountains are where my heart is and where I feel closest to my Creator. I’m passionate about my faith, love my friends and family, enjoy helping others and enjoy competing in pretty much anything athletic.
- Did you ever felt isolated (left out) due to your diet?
For the most part, no. Sure, when you’re first going to a new school or something, everything is a little weird as you find where you fit in, but people are always understanding. Being confident in the way God made you is a good thing and PKU doesn’t hinder you from being able to participate in any activities or anything your friends might be doing… unless it’s a chicken eating contest or something, haha!
- Did you ever find it difficult to travel with your friends?
I have never had issues with traveling. I just always pack my formula FIRST! You can buy clothes when you get there, can’t buy anything PKU specific though… Walmart doesn’t carry that!!!
- Have you ever flown? (If so how was that taking your special low protein food and formula?)
I have. I’ve flown all around the US and even Internationally and have never had a problem traveling with formula as long as it’s in sealed containers I’ve taking with me. In the last several years I have switched from PhenylFree products to Cambrook foods Bettermilk and it comes in individual packets which makes it much easier. They are all labeled sufficiently as well. I have never traveled with any special low protein foods, so I can’t speak to that.
- Did you ever not like your formula?
Never. Since I’ve been in a habit of drinking it 3 times a day for 29 years now… it’s a part of my life. Sure it tastes different when you switch, but it’s about how you feel, not the taste. I focus on how it makes me feel and created a habit a long time ago, same time every day and before long it wasn’t an issue at all.
- Do you feel like you’re healthier?
ABSOLUTELY! Because of the restrictions of PKU, I am forced to eat more vegetables and fruits than most people. So, although PKU patients can’t eat meat and other things, I have always been very healthy because of all the nutrients I get from fruits and vegetables, and especially from my formula.
- Did PKU hold you back from doing things you wanted (sports, etc.)
PKU has NEVER held me back from anything sports related. I played baseball at multiple levels throughout my life, as well as any other sport I could get my hands on, and was never hindered in any way in regards to sports. The only challenge that took some hard work was getting into weight lifting and finding out how to properly fuel my body to be able to build muscle. Once I did my homework on my formula and found out how I needed to fuel my body, it wasn’t a problem at all. Now that I am no longer in the sports I played as a child I still compete regularly in a few areas. I race mountain bikes competitively and also do CrossFit and have done several competitions in that as well.
- Did you ever try to go off diet? (If you did, how did it make you feel?)
I have never had a desire to go off diet. I have eaten one dish in my entire life that was more protein than I needed to consume (which was a mistake, not intentional) and the feeling that gave me is not worth having ever again. I ate a dish that had tofu in it (which I thought was cubed mushrooms covered in a sauce) and an hour or so after eating I was sluggish, felt terrible, had a very foggy feeling in my head and had absolutely no energy. It was terrible.
- Can you tell when your levels are high? (If so how would you describe it?)
I can. I have always paid attention to what I ate, so when my levels got high, I could feel it and could usually pinpoint it to a stretch of meals I ate. The feeling is much like what I described above, foggy feeling in my head (cloudy mind) sluggish, low energy.
I have also found that in the active seasons of my life (baseball season when I was younger, etc) my levels were lower than the other times of the year. Through the years I have been able to confirm that my activity level does correlate with my levels, since I eat fairly similar all the time. The more active I am, the better my levels are.
- Did you have any siblings with PKU?
Yes, my younger brother has PKU as well. I am 29 and he is 23.
- Did you have any siblings without PKU?
- What do you eat when you go out and eat?
A lot of vegetables. Pretty much meals without meat or other protein sources.
For example, going to Mexican restaurants, some of them have Veggie enchiladas. I get those with no cheese and just rice, no beans. So it’s really just a tortilla, veggies inside, enchilada sauce and rice.
I do have a milder case of PKU than some do, so I am able to have a little more freedom when going out to eat and don’t have to restrict to only low-Phe foods.
- What were your favorite foods as a kid?
As a kid I was always really fond of french fries, green bean casserole and tomato soup… and I still enjoy those today.
- What are your favorite foods now?
I am a sucker for chips and salsa. But other than that, veggie enchiladas, pastas with veggie/tomato based sauces and there is a place here in town that makes veggie burgers out of finely cut veggies and a little brown rice, no beans or any higher protein stuff… I LOVE those.
- Was your diet hard to explain to friends and teachers?
I never really struggled explaining it. Just explained that my body can’t process high protein sources like meat, eggs, nuts, etc.
- Was your diet hard to explain to your significant other & their family?
No, they took to the change pretty quickly. When I met my wife, she caught on pretty much on our first date, her parents didn’t take long after that and they always made sure I had things to eat. They eat a lot more vegetables now too haha.
- Have you ever tried kuvan (if so what was your body’s response, did it show a big change or little change?)
I have not, but would be open to trying it to be able to help out others and see the changes. I don’t really have interest in changing my diet. I like the way I eat and live.
- What were birthday parties like for you? (Was it hard to not eat cake?)
Birthday parties were never really a struggle for me. My mother had a low protein cake recipe that, to this day, I still like better than regular cake! My brother would agree with me on that one as well.
- What were your favorite holiday foods?
Green bean casserole
- What was the worst thing about PKU?
The people who don’t understand what “I can’t eat meat” means. Then they ask, “but what about fish?” no that’s meat too… “chicken?” no, that’s meat too. “but what about chicken FINGERS?” (yes I’ve actually been asked this…) No, that’s meat too…
- What was the best thing about PKU?
Being able to take something that people view as a set back and PROVE THEM WRONG!
YES I’m healthy. YES I do get enough food. YES I made good grades in school, I made the President’s List in college and have a master’s degree. YES I get enough protein. YES I can build muscle. YES I can be competitive in sports in spite of my diet that most people think hinders me athletically.
People think that because someone has PKU, they can’t do things other people can do. WRONG.
Part of the reason I love doing the things I do athletically is to show others who have PKU or have kids with PKU, that life can be normal even though at the beginning it is very scary and very different.
- Had your diet ever been a struggle financially?
As a kid, insurance wasn’t as good as the insurance I am blessed to have now, so it was a struggle. I am happy to say that my wife and I do not struggle financially because of it. If I didn’t have the insurance I have, it would be a struggle though. I’m blessed to work for a company that provides great benefits.
- What kept you from deviating from your diet?
Really just the way eating right makes me feel. When you eat in a way that is “on diet” you eat very healthy, lots of fruits and veggies, no high protein foods that cloud your mind and make you feel groggy, and you really do notice a difference. Even for someone without PKU, eating all of the fruits and veggies would make a huge difference. If I have it so good already, why would I change?! God made me this way for a reason!
Thank you Tyler for taking your time to do this. I hope this comforts a terrified mom and a dad searching for answers for their new baby’s diagnosis of PKU. What a blessing this PKU community truly is. Thank you Tyler for not letting this disease DEFINE YOU nor DESTROY YOU.