Viewing 8 posts - 1 through 8 (of 8 total)
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  • #8975
    Avatar of Michael

    As an athlete I am always wondering how others train so I can have knowledge of many training styles so I can try to train as well as I can. I figure since I have a rare disorder I should learn more about how others with the same disorder train. So for all of you PKU athletes out there what types of training do you do? What foods do you eat? and anything else you want to share about being an athlete with PKU?

    Avatar of charilyn

    what would you sugest for loosing weight and having pku i just had my baby but the jems they all say a high protien diet but we no i gaint do that

    Avatar of N.

    It's not a big deal for me. I am varying the amount of formula to fit my lifestyle.

    So when I train in a gym or do other activitys that stress my muscles a lot, I take more formula for this day and the day after. 

    If I do cardio, then I'm taking the normal amount of formula.

    Avatar of

    I don't know if you could call me an athlete, but I am a pretty dedicated mountain-biker and backpacker. A big thing to me when I ride or hike is that once I've gone for a while, I work up an apetite. It works well to carry some kind of snack in my camelbak (usually a Rice Krispie treat or a banana). Once I've got that and some water I feel waaaay energized. At the end, I'll drink some formula with ice to cool off. 

    Another thing I would highly  recommend with pretty much any physical activity is to make sure you're good on Vitamin D and Calcium. People with PKU are generally more suceptible to break bones, due to the lack of Vitamin D and Calcium in the foods they eat. I learned this the hard way… I've broken my right arm, both feet, and a toe in my pre-teen/ teenage years. Last month, though, I had a nasty mountain-bike wreck and landed on a big rock which broke my coccyx…. not good for a college student who has to sit to drive to school and sit in a four-hour Chemistry class…

    Avatar of Debbie

     I take plenty of snacks to keep me going when I am playing softball and have more formula on Saturdays where I am playing 3 and a half hours straight and Thursday night which is  training night. I am one of the pitchers for my team.

    Avatar of Nicole


    I go to gym 5 days a week and i just basically stick to my low protein diet, maybe a little more formula and i do take a vitiamin drink every morning jst incase!!  think u should eat more healthier options such as pasta and breads cereals. I think best advice is to drink a little more formula but always consult ur dietician first!!

    Nic x

    Avatar of Terri

     Hi…I am 47 yrs old and just this yr…6 months ago..started training in isshin ryu karate…LOVE it! cant say enough about what it has done for me! i would like to know though…how others w/ pku who are athletic…keep their energy level up…maybe this is justa  transition..i just also started working again…p/t only but… juggling that w/ shild care..schools etc..Id like to know how others balance all that…Im not a multitasker…never have been…do others w/ PKU have that challenge? I would love to hear from others…  

    Avatar of Eugene

    I don’t know if you would consider bicycling 200-300 miles a week and averaging 19-20 MPH for 65 miles a typical athlete especially with PKU. I have classical PKU and have done bicycle events on both east and west coast. West coasts events are 100 miles of bicycling or more and I usually average 300+ miles that week just because the only transportation I use is a bicycle.

    On a 100 mile ride I burn 1700-2500 calories depending on my speed. The one thing I do not do is bring PKU formula with me, but I bike 6AM-3PM. I need to consume calories. I burn so much protein even when I am not doing events that I need to have about 100g of protein from food and 40g from formula. My levels are higher as well. Sometimes my levels are 1000+ and drop when I ride because I burn the protein during the day. This drop and burning of protein makes me sick as it would anyone but I notice it more because of my PKU. I always bring lots of biker food including Power Bars with 9g protein or Cliff Bars also with about 9g of protein.

    My diet is not a normal PKU diet because of all the protein I burn during the physical activity. I am vegan. My high protein dinner consists of 300+ grams of baked beans (about 10g of protein) and 2 tofu dogs (20 grams protein total) Lunch is lower usual a Camebrook Fruit Frenzy bar for kids (250 cals and 10 pro) and some fruit (1lbs grapes or apple) I don’t record how much I have because I can feel where my protein is at and I eat more or less based on that. Too low and I can’t sleep or relax. Too high and I can’t think and feel confused. I can’t get blood levels back quick enough to care about sending blood samples.

    Just because my levels are 1200 (micro moles per liter) doesn’t mean their are too high. I may need that protein for a bike ride. As I tapper off the bicycling I also reduce my protein intake and I can get my levels down to 700 micro moles per liter.

Viewing 8 posts - 1 through 8 (of 8 total)
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