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Stephanie Hacker is a registered metabolic dietitian and newborn screen program manager at the University of Miami.
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With a background in exercise science and more than a decade of experience, Stephanie brings genuine insight to metabolically speaking.
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In this episode, we dive into the emotional and physiological benefits of being physically active and explore how metabolic diagnosis should empower and not limit the individual.
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We discuss the safety considerations as well as where to start for those beginning their active journey.
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So lace up, tune in, and join us for this episode of Metabolically Speaking.
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You'll be feeling inspired to move, feel, and live well.
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Welcome to Metabolically Speaking, the podcast that dives into life with inherited metabolic conditions.
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Proudly brought to you by Cambrook, delivering therapeutic nutrition for more than 25 years and empowering families to live without limits.
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I'm your host, Meredith Baker.
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I've lived with PQ my whole life, so I know the ups and downs and all the in-between moments that come with navigating a rare condition.
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Each month I sit down with experts, advocates, and people with lived experiences for honest conversations about what it really means to live with a metabolic condition.
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Whether you're newly diagnosed, supporting someone you love, or have been on this journey for a while, this space is for you.
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So settle in and let's get into it.
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Joining me today is Stephanie Hacker, metabolic dietitian and newborn screen program manager at the University of Miami Miller School of Medicine.
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Stephanie holds qualifications in food science and human nutrition, nutritional science and applied physiology and kinesiology.
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Stephanie has worked with hundreds of patients in inborn eras of metabolism, supporting people all the way from birth to adulthood to help ensure they're receiving the best possible nutrition and health care.
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She's a strong advocate for nutrition and rare disease education, often leading lessons for medical and graduate students taking part in the community and patient events.
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She also serves on various advisory councils supporting metabolic disorders.
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In addition to her work in genetics, Stephanie also has a big passion for sports, fitness, and wellness.
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She's a board certified specialist in sports dietetics and has spent more than 15 years as a group fitness instructor and a personal trainer.
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Stephanie, we're so excited to have you here.
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Welcome.
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Thank you so much for having me.
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Of course.
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Well, let's jump into it.
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This is going to be a very fun topic today.
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With the first question, there are many myths around exercise and inborn errors of metabolism.
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What are some of the biggest misconceptions you encounter?
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And how do you feel your patients understand that movement is about empowerment rather than limitations?
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So many individuals with inborn errors of metabolism think that they can't exercise or be active or participate in sports because of their diagnoses.
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And I would say that this is the biggest misconception.
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While there is very limited research into inborn errors of metabolism and fitness, there is kind of undisputed evidence that being physically active is beneficial to every individual, regardless of diagnosis.
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So while some inborn errors of metabolism requires some precautions to safely participate in fitness, everyone can and should participate and be physically active.
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Awesome.
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Thank you so much for that.
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That definitely makes sense.
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I feel like no matter your age or your goals, just starting is a great point of just finding something that you can have interest in or excitement for when starting to get more active in your day-to-day life.
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Yep.
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And that's like a perfect way to phrase it.
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There is something for everyone in terms of fitness and sport.
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And it's really about finding what connects with you to get you excited to move.
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Starting's the hardest part.
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What advice would you give to someone who wants to start being active?
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Are there some types of exercise better than others, such as endurance versus strength?
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How does it depend on the metabolic condition?
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So I think the biggest advice that I'd give to someone that wants to be active is to first talk to your metabolic team and your care team to make sure that if there are some precautions for your diagnosis, um, that you're aware of them.
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And with everything that we say in this podcast, again, I just want to reiterate that it's important that you do talk to your care team about your physical activity because there, again, may be some things that need to that you need to consider.
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Um and that changing your activity may have an impact on some of the treatment.
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Again, with that being said, it's not that you can't exercise, it's just that there may be some tweaks and changes um that need to be recommended just to keep you as healthy as possible.
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Um, but to get back to your question, um, other than talking to your care team, um just as we kind of spoke about, I think the best thing to do is to find something that you like.
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Getting started can feel overwhelming sometimes.
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There are a lot of options.
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You may feel super intimidated, intimidated walking into a gym or joining a recreational sports league.
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Um, so sometimes the greatest way to start is just on your own and start building confidence in your own home if that is what works for you.
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Um and again, you have to start with something that you're comfortable with.
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Um, and then my other recommendation is to make fitness fun.
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Um, some people look at me like I have 10 heads when I say fitness should be fun.
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Um and in my view, it is fun.
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But there's nothing more fun to me than moving my body and running around.
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Um, and so again, that's what's fun for me.
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But generally, people will have fun when they are moving their body.
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So sometimes that is, again, something that you feel comfortable with that can be fun and also a great way to enjoy the outdoors, maybe walking, which is just a great way to get started moving your body.
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Other ways, again, of making fitness fun can be playing sports if you have a little bit of a competitive edge, um, or going to a playground or doing a group fitness class or doing a dance class.
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All of these things are moving your body and having fun.
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And again, like if you go into a group fitness class and you feel intimidated, it was everyone's first time once.
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Yeah.
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So always keep that in mind.
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And in my experience in the fitness world, everyone is welcoming.
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No one is going to kind of make you feel that being new is a bad thing.
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Yeah.
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Um, and then to address your question of kind of what physical activity is beneficial, moving your body in general, whether it is endurance or cardiovascular, there are benefits.
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Um and so whatever works for you is what I think you should do.
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It the question is kind of what where there are more health benefits.
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Again, I think there's a balance between both.
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Um, but there is increasing literature in the general population, again, not those with inborn errors and metabolism, but in the general population of the benefits of strength training on just overall health and longevity.
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Uh, strength training really helps individuals maintain and even increase increase muscle mass.
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Um, and muscle has so many health and metabolic benefits for all individuals.
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And as people get older, and we know that individuals with inborn errors or metabolism are getting older, which is great.
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This is what we want.
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Yes.
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Um, but everyone, regardless of diagnosis, as we all get older, there's an increased uh likelihood that we are going to lose muscle mass.
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It happened because of hormonal changes.
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It happens just as an aspect of aging that our bodies start breaking down our muscles as we age.
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And the only way that has been found to combat this is uh strength training.
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So strength training is generally lifting weights.
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Um, it's by definition, strength training is uh using your muscles against a resistive force.
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So again, we generally think lifting weights, but it can be Pilates, where you're on like a spring-loaded platform.
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Um, it can be using your body weight, resisting again, your muscles against gravity.
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Um and so regardless of age, again, for older individuals, strength training is super, super important.
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But regardless of age, strength training is critical to help build and maintain that muscle mass.
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Um, and again, just like we spoke about, there are some precautions that some individuals with inborn errors of metabolism may need to consider um either with pre-exercise nutrition and or post-exercise nutrition.
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But there's no reason that based on any metabolic diagnosis, that an individual with an inborn error of metabolism cannot participate in strength training or really any activity.
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That's great.
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No, and I think something that stood out to me was you saying, making it fun.
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I know this is so funny, but thinking back to the first time I met you was at an exercise class at a PKU camp and there was a burpees competition going on.
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So I always think of you with like exercise as it is automatically, but it's just bringing the fun into it and finding it, finding what's best for you is definitely gonna help.
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But I love hearing about the importance of gaining strength.
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So thank you for that.
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For families listening, especially parents and caregivers of children with metabolic conditions, what advice would you give to those hesitant to let their child participate in sports at school?
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So I this is a again, uh I understand parents' hesitancy, especially in school where like they may not be watching their kids.
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Yeah.
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But I have found that most of our families that have essentially that um who who have children um with inborn eros and metabolism, we generally work with the family and the school um to either that the individuals are on IEPs or 504 plans, not necessarily because they need these things, but because with those plans, they can be given kind of special um attention kind of during their school day when parents may not be there.
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Um so we really again work with our families and our patients and their whoever is their caregiver at school, whether it's a teacher or an administrator or a school nurse, to educate them on what the precautions for exercise for their diagnosis is.
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Yeah.
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Um, and so for a lot of so we again tell our families that every individual can participate in physical activity.
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Like I have a patient with a fatty acid oxidation defect.
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And originally the family didn't want this little girl to participate in recess.
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And I think that there's a lot of one, I think recess is important for kids to kind of break up their day, but I also think it's it's a community.
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During recess, kids play, they socialize.
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And so because this family was hesitant, understandably, because they didn't want her to have a metabolic crisis at school by exerting herself so much, um, they wanted her to kind of refrain.
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And as a clinician and also as an advocate for patients to be active, I really tried to, I counseled this family and eventually, so essentially in kindergarten, she didn't participate.
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But when she went into the first grade, um, we were able to work with the school and also her medication regimen.
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So essentially, how we combat the parents' fear is that she gets a dose of her medication and also a carbohydrate-rich snack prior to her going to recess.
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The school was also able to work with her schedule so that she gets to go to recess pretty much right after lunch.
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So we know that she's adequately fueled for essentially whatever she wants to do in recess.
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And she knows and she's able to vocalize, and her parents feel confident that if she does feel that she's running out of energy or that her muscles hurt, that's the terminology that she sometimes uses.
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She says, she says, My legs hurt.
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Um, that she knows to stop and to go take a sip of her Gatorade or get a snack and to rest so that she does not overstress her body.
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That's very interesting.
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And it sounds like IEPs and 504s could also help in sport-related activities with the school, not just education-based.
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Yep.
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Okay.
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So, in our experience, and again, this is I or my experience is um where I live and where I um where my patients live, um, the school districts in our area, um, again, the IEPs and the FIBO floors kind of follow the student in whatever activities they do on school campus.
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Okay, that's awesome to know.
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I was not aware of that.
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That is very great.
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Following on that topic, we know that safety is the most important thing.
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What are some key considerations and practical tips for manage for managing exercise safely while maintaining good metabolic control?
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So fueling for activity is really critical for everyone, regardless of metabolic diagnosis.
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Just, I don't have an inborn air of metabolism, but for me, when I go and exercise, being adequately fueled for that exercise and taking adequate nutrition after that exercise is critical to my recovery.
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Um, so it is critical for everyone's recovery.
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Um again, depending on the metabolic diagnosis, there may be some other precautions needed to ensure metabolic control.
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Like we spoke about a fatty acid oxidation defect patient.
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These patients really need to ensure that they have a source of medium-chain triglycerides to use for energy prior and carbohydrates prior to an exercise session so that they don't try to use their stored fat, which can be dangerous for them depending on, again, the severity and the type of fatty acid oxidation defect.
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A patient with PKU or tyrosinemia, um, again, there's no real pre-exercise nutrition that you need to focus on.
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The general recommendation would be to eat to have some sort of carbohydrate source.
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Carbohydrates are the pure preferred source for an exercising muscle.
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Um, so if you have carbohydrates kind of or glucose in your blood, it kind of makes your body work better during an exercise session.
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Um and again, a patient with PKU or tyrosinemia is not going to have a metabolic crisis.
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So we're not kind of concerned if during an exercise session your body gets too stressed, it's just as if anyone else's body got stressed.
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Um, however, after an exercise session, and again, this is for every individual, but I think for individuals with um kind of an amino acid metabolism disorder, it's important to think about.
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And I did say like PKU and um tyrosinemia, similar kind of recommendations would go for homocysteine urea, essentially assuming that homocysteine levels are controlled in that condition.
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Um but as far as after exercise nutrition, you want to make sure that you are replacing the amino acids or the protein that your muscles use during an exercise session.
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So this goes kind of whether you're doing strength or endurance exercise.
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Whenever you are exercising your muscles, tiny tears are happening at that muscle surface or like and within the muscle.
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And so you have like the way that I think about it is that when you're done exercising, you're essentially to get those muscles to repair back stronger, they need all of the nutrients available.
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And the way to get those nutrients is to consume it.
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Uh, so the in the general population, the overall recommendation is to consume a protein rich and also some carbohydrates, again, to replace those lost in the exercise session within ideally as soon as possible, but within two hours of an exercise session.
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And in the general population, there is conflicting data the optimal time.
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And the data kind of differs on based off of male and female metabolism.
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So there are different recommendations for males and females, but the overall recommendation is two hours.
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So if you can consume something within two hours, your body can use it optimally.
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So an example of that would be formula.
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Exactly.
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For any amino acid-based disorder, um, your formula or medical food, whatever you want to call it, provides your body with all of the amino acid that it needs without the amino acid that your body can't metabolize optimally.
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Um, and so after an exercise session, again, like when you are in a state where your muscles have kind of been a little bit damaged, don't worry, it's okay.
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It's what they're supposed to do.
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Um, there are amino acids circulating in your blood.
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And so some of those amino acids circulating in your blood are the amino acid that you may not be able to metabolize.
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And that's okay.
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It's part of metabolism.
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But as you take in other amino acids, your body is able to use all of the amino acids in the blood to help repair those muscles optimally.
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And so I always recommend our patients take their medical food within two hours of an exercise session, at least a portion of it from their daily dose, um, to ensure that they're giving, that they're getting um the amino acids that they need for their body to recover.
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Um, for other individual, again, for individuals that may have a fatty acid oxidation defect, it's important for them to also take a protein source, but they can do it from food.
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Um, so they can take like a higher protein food source or um like a protein shake or a protein bar.
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Again, for someone, an individual with PKU, um, you would think of your medical food as that.
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Um, some other kind of diagnoses that we didn't really talk about, like uh glycogen storage disorder, they would benefit from a dose of cornstarch prior to an exercise session and then also monitoring their blood glucose throughout the exercise session.
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Um, and again, this is something that they need to work on.
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It's a very individual, it's very uh individuals' blood glucose response is incredibly individual to them.
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Um, so this is where in our clinic we find continuous glucose monitors to be really helpful so that we can kind of track what's happening to their blood glucose during an exercise session, and we can adjust their cornstarch and their snack protocol in response to that.
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Um, but again, uh individual with a glycogen sore disorder would also benefit from having a protein-rich snack after their exercise session.
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Got it.
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So, kind of a two-part question to that is the World of Health organization recommends that adults aim for 150 to 300 minutes of exercise per week.
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Does this guideline apply to people with metabolic conditions too, or should it be tailored to the individual?
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So these guidelines apply to all individuals.
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And regardless of diagnosis, I do want to kind of just say that any physical activity is beneficial.
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So whatever someone is able to do, there is benefit.
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So I never want anyone to think, well, I have to exercise 30 minutes a day, five days a week to hit the who guidelines or the work.
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Health organization guidelines.
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Right.
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Really, whenever you can move your body, and for however long, there is benefit.
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And just as another caveat to that, the more you move your body, and the World Health Organization recognizes this: that the more you move your body, the more benefits there are, assuming that you are properly nourished.
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Got it.
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That makes sense.
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So it can be hard to maintain a regular fitness regimen alongside work, studies, childcare, and everything in between.
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What is recommended in mind for some practical ways for individuals to stay motivated and build a sustainable routine with also juggling their metabolic condition?
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So incorporating activity into your daily routine, I think, is the best way to get fitness into a busy, busy schedule.
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So it can be as easy as parking further away from where you're going and walking a further distance essentially from your car to a store, um, or taking the stairs.
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Um and again, kind of building you can in those things, you can build five minutes of activity.
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And if you do that five times a day, that's 25 minutes of activity.
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Um there is benefit of what's called intentional physical activity, and that is kind of where you have planned physical, like planned time for physical activity.
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Um, and again, that can be really hard with everyone's busy schedules.
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Um and what I always recommend is that you once you feel the benefits of physical activity, it's not difficult to make fitness and physical activity a priority.
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And it just kind of tends to occur naturally.
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Um I personally like block an hour every morning for my own movement.
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And like this has been a non-negotiable for me for as long as I can remember, even in high school, I would wake up early so that I could get my movement in because to me, it helps set my day.
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And so it, regardless of what's going on in my life, this is kind of a constant.
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Um, and this is something as I've kind of gotten more people to be active, they find again that there's something that for them becomes important.
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Um, like I have a friend that really, and again, she does not have a metabolic disorder, um, but she really did not like being active.
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It was not something that she enjoyed.
00:24:35.200 --> 00:24:50.799
And so she was telling me that she was having trouble sleeping and that she wasn't feeling focused at work and all of these changes that she kind of felt in her mental space.
00:24:51.119 --> 00:24:56.400
And I suggested that she start moving her body just a little bit every day.
00:24:56.640 --> 00:25:04.960
Um, and so we started together by going to different workout classes um together, and she finally found that she really enjoyed Pilates.
00:25:05.759 --> 00:25:13.440
And it was actually really exciting for me because this past week we were actually supposed to do something socially together.
00:25:13.599 --> 00:25:15.119
Um, not a workout class.
00:25:15.200 --> 00:25:17.200
We were going to a group dinner.
00:25:17.519 --> 00:25:25.839
And she texted me in during the day of this group dinner, and she said, you know, I really haven't been feeling great.
00:25:25.920 --> 00:25:29.039
And I realize that I haven't made it to Pilates in over a week.
00:25:29.119 --> 00:25:31.599
So I think I'm gonna skip the dinner to go to Pilates.
00:25:33.359 --> 00:25:51.039
And so that was again, she pretty much decided that taking care of herself was more important than kind of having the social activity that we had planned, which some friends may get upset about that, but I was really happy that she was taking care of herself.
00:25:51.359 --> 00:25:51.920
That's great.
00:25:52.000 --> 00:25:56.240
And that's a great example for us to really connect with.
00:25:56.559 --> 00:26:01.759
What are some physical benefits of keeping active with having a metabolic condition?
00:26:02.480 --> 00:26:07.279
So there's so so there's physical benefits and mental health benefit.
00:26:07.440 --> 00:26:19.119
So I think the biggest, biggest benefit of physical health is what we what has been termed longevity, and that is living well longer.
00:26:19.599 --> 00:26:30.240
So it used to be kind of thought that people would live until 100, but kind of from 80 to 100, they weren't really, or they're they may not be that healthy.
00:26:30.400 --> 00:26:30.720
Yeah.
00:26:30.960 --> 00:26:33.599
So how do we stay well longer?
00:26:33.759 --> 00:27:04.400
And what a lot of research in the general population has shown is that physical activity and maintaining muscle mass is the one of the biggest drivers, even more than heart disease or blood pressure, or kind of any of these other kind of health parameters that we that you may hear spoken about in your doctor's visits, but the one of the biggest factors to longevity is physical fitness.
00:27:04.640 --> 00:27:11.920
Um, and so that I think is one of the biggest physical benefits with that um disease prevention.
00:27:12.079 --> 00:27:16.319
So I just brought up like heart disease um and blood pressure.
00:27:16.720 --> 00:27:36.000
Um individuals with inborn errors of metabolism, we have learned that as you are aging, or as individuals with inborn errors of metabolism are aging, you are just at the same risk of developing kind of health-related disorders as the general population.
00:27:36.079 --> 00:27:46.799
And so these health-related disorders that we think about again are heart disease, high blood pressure, um, diabetes, metabolic syndrome.
00:27:46.960 --> 00:27:58.480
Um, again, these are all disorders or kind of issues that have been found to be related to nutrition and lack of movement.
00:27:58.720 --> 00:28:05.359
And so moving one's body helps to combat these diseases again in the general population.
00:28:05.680 --> 00:28:10.960
And we know is the same in the inborn Arab metabolism population.
00:28:11.119 --> 00:28:12.559
So that's another big thing.
00:28:12.720 --> 00:28:15.119
The other factor is weight control.
00:28:15.759 --> 00:28:22.000
Um, so weight is not a large factor to health overall.
00:28:22.319 --> 00:28:31.279
Um, there's no in essentially there's not strong data that one body size lives longer better than another body size.
00:28:31.359 --> 00:28:36.400
That really breaks goes down into overall health and also fitness.
00:28:36.640 --> 00:28:43.440
Um, but some people feel more confident at a certain body size.
00:28:43.680 --> 00:28:48.960
And so moving your body helps to control weight.
00:28:49.200 --> 00:28:56.400
Um, another physical benefit is that exercise strengthens bones and muscles.
00:28:56.559 --> 00:29:06.000
Um, so those who exercise, it's known, but they're known to have stronger bones, especially those that participate in strength training.
00:29:06.240 --> 00:29:11.200
So every time we spoke about kind of the muscle damage a little bit ago.
00:29:11.359 --> 00:29:18.720
And so every time your muscles get essentially slightly damaged from exercise, muscles are connected to bones.
00:29:18.799 --> 00:29:21.279
We kind of learned about that in nursery rhymes.
00:29:21.440 --> 00:29:28.480
So every time your muscles get damaged, those where the muscles connect to the bones also get a little bit damaged.
00:29:28.720 --> 00:29:31.279
And so they pull on the bone.
00:29:31.440 --> 00:29:35.599
And so when the muscles repair stronger, so does the bone.
00:29:35.839 --> 00:30:01.279
So individuals that kind of strength train and use their muscles through their lives, have a lower chance of having disorders like osteopenia or osteoporosis because their bones have kind of become stronger and have been able to resist those age-related effects.
00:30:01.440 --> 00:30:08.000
Um, we know that individuals, specifically with PKU, um, can have lower bone mineral densities.
00:30:08.079 --> 00:30:16.400
I feel that there's also kind of with other metabolic disorders been noted lower bone mineral densities.
00:30:16.559 --> 00:30:24.400
Um, so I really think that being active with proper nutrition is a really good way to maybe combat this.
00:30:25.359 --> 00:30:36.880
Um kind of other benefits that kind of cross the line in from physical to kind of mental health is that exercise boosts energy and metabolism.
00:30:37.039 --> 00:30:42.480
Um, so the more you move your body, the more energy your body is going to burn.
00:30:42.640 --> 00:30:47.599
Um, so you may think, well, my body's burning more energy, then I'm gonna feel more tired.
00:30:47.839 --> 00:30:54.640
Most people report the opposite effect that exercise kind of makes them feel like they have more energy.
00:30:54.960 --> 00:30:59.839
I personally always feel this before I start my exercise session in the morning.
00:31:00.000 --> 00:31:04.720
I always feel kind of a little bit sleepy and like I don't really want to be doing this.
00:31:04.880 --> 00:31:14.799
But after my exercise session, I feel ready to go and like that my day is started, which is one reason why I make it a priority because it's kind of like my morning cup of coffee.
00:31:15.039 --> 00:31:22.160
Um, and then participating in physical activity also helps to regulate your sleep cycle.
00:31:22.400 --> 00:31:26.480
Um, there are kind of some per some kind of things to think about.
00:31:26.559 --> 00:31:32.720
If you do super high intensity exercise right before bed, it could negatively impact your sleep.
00:31:32.960 --> 00:31:35.200
So you kind of want to be mindful of that.
00:31:35.519 --> 00:31:42.319
But overall, individuals who are physically active have more balanced sleep schedules.
00:31:42.400 --> 00:32:00.240
And we know, again, in the case of PKU, where we have the most research overall of any inborn era of metabolism, that individuals with PKU do experience sleep disturbances even when they're taking their medical food properly.
00:32:00.400 --> 00:32:08.319
Um, it's kind of thought that this is related to the neurotransmitter kind of production related to tyrosine.
00:32:08.400 --> 00:32:14.880
And we know that medical foods are supplemented with tyrosine, but there's something going on that's not fully understood.
00:32:15.119 --> 00:32:28.640
Um, so again, exercise could be a way to kind of help regulate the sleep neurotransmitters that may that individuals with inborn errors or metabolism may not be building optimally.
00:32:28.960 --> 00:32:29.519
Got it.
00:32:29.759 --> 00:32:31.599
Definitely makes sense.
00:32:32.079 --> 00:32:40.319
And kind of going further, other benefits of physical activity that have been reported in the general population is stress management.
00:32:40.559 --> 00:32:49.759
Um, so people that exercise um tend to have, again, like just improved responses to stressors in life.
00:32:49.920 --> 00:32:55.680
That means that again, we kind of think of stressors in different ways.
00:32:55.839 --> 00:33:00.000
Um, but in our daily life, we're experiencing stress all the time.
00:33:00.160 --> 00:33:06.559
It could be traffic, it could be a meeting, it could be a school assignment, it could be cooking a meal.
00:33:06.880 --> 00:33:14.880
Um, there's things that are happening all day that kind of put our body into this fight or flight mode.
00:33:15.119 --> 00:33:21.920
And so exercising helps our bodies regulate um how we respond to those stresses.
00:33:22.160 --> 00:33:43.200
So rather than kind of going into this flight mode where our stress hormones shoot through the roof, individuals that exercise are able to regulate their responses better so that they're not kind of always in this super stressed to super not stressed, to super stressed um environment.
00:33:43.440 --> 00:33:48.880
Um, and then exercise can improve mood and concentration and attention.
00:33:49.119 --> 00:34:08.559
Um, so individuals, again, in the general population that have kind of attention disorders like ADD or ADHD, exercise has been shown to be a really beneficial tool to help with those symptoms.
00:34:08.800 --> 00:34:21.119
We know that individuals with, again, PKU have a higher likelihood of having an attention-related disorder or a mood-related disorder.
00:34:21.280 --> 00:34:30.000
And so, again, just as in the general population, exercise can be beneficial in helping to combat some of these symptoms.
00:34:30.239 --> 00:34:34.320
And then my favorite thing about exercise is that it is fun and social.
00:34:34.480 --> 00:34:34.800
Yeah.
00:34:34.960 --> 00:34:46.639
Um a really, really great way for individuals um to meet other people and to smile and to connect.
00:34:46.800 --> 00:34:57.840
Um, and one of my favorite things about fitness is for the inborn era of metabolism, is that it's a way to connect with individuals that do not revolve around food.
00:34:58.159 --> 00:34:58.800
Awesome.
00:34:58.960 --> 00:34:59.920
Well, I love that.
00:35:00.000 --> 00:35:01.760
And you hit so many points.
00:35:02.000 --> 00:35:11.280
Whenever you mentioned that being active could go beyond just the physical health, but the social related and the mental health-related aspects of life as well.
00:35:11.599 --> 00:35:28.559
Have you witnessed patients who engage regular in physical activity um being more successful and feeling better and being able to be more in control of their health and maybe phenylanoline levels to managing while managing their condition?
00:35:29.119 --> 00:35:30.239
Yeah, 100%.
00:35:30.880 --> 00:35:44.480
Um I find that individual that individuals in my patients that make fitness a priority overall are in better metabolic control.
00:35:44.719 --> 00:35:45.039
Yeah.
00:35:45.280 --> 00:35:50.800
Um, so they, I mean, I have several individuals.
00:35:50.880 --> 00:36:05.119
I mean, I I I don't in my patient population, I don't make fitness a um I think obviously it's an option for everyone, but I really encourage our patients to be active, especially starting at a super young age.
00:36:05.280 --> 00:36:15.119
So I would say that the majority of my patient population participates in physical activity um in some in some form.
00:36:15.760 --> 00:36:24.719
Um, and so like a few of my patients come to mind that really make fitness a priority.
00:36:24.880 --> 00:36:29.199
Um, at these individuals, again, fitness is a priority and so is their health.
00:36:29.679 --> 00:36:39.519
So they really make control, essentially making sure that their fee levels are appropriately managed also a priority.
00:36:39.679 --> 00:36:48.159
And this goes into they know when their fee levels are high, they're not going to have the motivation to participate in their physical fitness.
00:36:48.320 --> 00:36:48.559
Yeah.
00:36:48.800 --> 00:36:51.199
Um, and so it kind of is this cycle.
00:36:51.360 --> 00:36:55.760
So being physically active helps control their fee levels.
00:36:56.000 --> 00:37:03.679
Um, one because physical fitness, um, while again, there's no literature on this because there's not a lot of studies.
00:37:04.000 --> 00:37:21.119
Um when individuals are physically active and fee is in the blood and then being reincorporated into the muscles, there is a trend that we have seen that individuals may be able to tolerate more fee from food.
00:37:21.199 --> 00:37:24.320
So they're able to have an increased protein tolerance.
00:37:24.719 --> 00:37:29.360
Um, so for some of our patients, that's a really big motivator.
00:37:29.519 --> 00:37:35.119
Um, but being fiscally active helps to keep them on like their schedule and their routine.
00:37:35.360 --> 00:37:38.320
Um, that helps them also control their fee levels.
00:37:38.400 --> 00:37:47.760
So like they know, oh, I just did a workout, I'm gonna take some of my like with one of my portions of medical food right after I exercise.
00:37:47.920 --> 00:37:59.280
So it's not like they're struggling to get that is if their recommendation is to take four doses throughout the day, one of their doses is already taken care of from their exercise session.
00:37:59.519 --> 00:38:00.159
Got it.
00:38:00.320 --> 00:38:02.239
Yeah, definitely makes sense.
00:38:02.559 --> 00:38:07.119
The nutrition and activity are so interconnected with our health.
00:38:07.280 --> 00:38:14.400
How does being physically active change nutritional requirements for someone with a metabolic condition, such as PKU?
00:38:14.559 --> 00:38:19.119
And are there any sports supplements or products you think that could be helpful?
00:38:20.079 --> 00:38:29.199
So we just kind of touched on this um as far as as the interconnection between nutrition and activity.
00:38:29.840 --> 00:38:36.800
Um, but so activity in general will increase energy and protein needs.
00:38:37.039 --> 00:39:08.880
Um and so if we're speaking of PKU uh specifically, um, there is a chance, again, like there is no literature on this, but we have seen it, I've seen it in my patient population, pretty much in everyone that starts being active, um, that uh activity tends to increase natural protein tolerance or the amount of fee that an individual may be able to tolerate.
00:39:09.440 --> 00:39:13.280
The amount is very individual on the person.
00:39:14.320 --> 00:39:18.480
Um, but overall that's a trend that we have seen.
00:39:18.719 --> 00:39:30.000
Um, and the other really important thing with increasing fee tolerance and also the increased energy and protein needs related to activity is that timing of nutrition.
00:39:30.320 --> 00:39:40.480
I have seen patients not experience the benefits of physical activity because they don't properly nourish their body following the activity.
00:39:40.880 --> 00:39:52.960
Um, so I've actually seen patients' fee levels increase from physical activity because they are not taking the steps to properly nourish their body after an activity session.
00:39:53.199 --> 00:40:09.280
So essentially what's happening is that the fee that was released from their muscles during the exercise session kind of stays in their blood because there's not enough nutrients for their for their muscles to kind of suck that fee back in.
00:40:09.599 --> 00:40:24.320
Um in addition, there's also issues with that because not only is our our fee levels higher, it also puts your muscles at an increased risk for injury because they're not able to repair in the way that they want to.
00:40:25.440 --> 00:40:44.480
Um so essentially, as far as sport supplements, I always tell, especially my PKU patients or my amino acidopathy patients, that the best sports supplement for them is their medical food and for them to take it after an exercise session.
00:40:44.639 --> 00:40:50.320
Um, for some individuals, I also recommend in addition to take it, making sure that they take a dose after an exercise session.
00:40:50.400 --> 00:40:59.599
I also recommend a dose shortly before bed because while an individual is sleeping, that's where most muscle repair happens.
00:40:59.840 --> 00:41:12.480
So it's super important that the body has the amino acids it needs while you're sleeping to help repair muscles, again, depending on what activity they're doing and how active they are.
00:41:12.719 --> 00:41:17.519
Um so again, medical food is the best sport supplement.
00:41:17.840 --> 00:41:28.719
There are lots and lots of sport supplements um out there that many in the general population support.
00:41:29.199 --> 00:41:35.519
Um, the reality is that most sport supplements don't have a ton of strong evidence.
00:41:35.679 --> 00:41:42.000
There are a handful that there is strong evidence for their use in certain situations.
00:41:42.639 --> 00:41:58.400
Um I have always been of the mindset that if an individual wants to take a sport supplement, and it's not a dangerous one, there are also sport supplements that are out there that are very dangerous.
00:41:58.719 --> 00:42:10.079
They can also, if you are a competitive athlete, um some of these sport supplements are banned by most um professional organizations that kind of govern that sport.
00:42:10.239 --> 00:42:14.639
So you have to be mindful of that if you want to be kind of a competitive athlete.
00:42:14.960 --> 00:42:25.599
Um but if you, if there is interest in taking a sport supplement, again, some can be very beneficial to specific sport and fitness goals.
00:42:25.760 --> 00:42:31.599
Um, it's really important that you're purchasing that sport supplement from a trusted manufacturer.
00:42:31.760 --> 00:42:37.119
Sports supplements do not have any regulation um in the United States.
00:42:37.199 --> 00:42:42.559
So pretty much anyone can say the a sport supplement has something in it if it doesn't.
00:42:42.800 --> 00:42:50.159
Um, so I always recommend looking for a trusted manufacturer that um uses third-party testing.
00:42:50.320 --> 00:42:54.400
So that means that there's an outside agency that is testing their product.
00:42:54.719 --> 00:42:54.880
Okay.
00:42:55.360 --> 00:43:10.559
Um, and there are there are certain labels on sports supplements that you can kind of look for um that kind of let you know that that company kind of has these production standards.
00:43:10.800 --> 00:43:21.199
Um, I also urge you to talk to your medical team about any sport supplement that you're interested in taking to just to ensure that it is safe for you.
00:43:22.159 --> 00:43:24.559
Um, and also so that they're aware.
00:43:24.719 --> 00:43:32.960
Um, so that if anything does kind of change with your biochemical levels, um they know.
00:43:33.519 --> 00:43:43.360
Um and again, there are sports supplements that individuals with inborn erosar metabolism can take.
00:43:43.440 --> 00:43:47.280
But again, talk to your medical team and make sure that it is safe for you.
00:43:47.840 --> 00:43:59.760
And there is still a lot that we don't know when it comes to physical activity and metabolic conditions from ideas like increased fee level tolerances and greater muscle mass, like you've mentioned, to optimize.
00:44:00.480 --> 00:44:02.719
Medical food timing for muscle recovery.
00:44:02.960 --> 00:44:08.159
What new research areas or developments are you excited for right now and why?
00:44:09.599 --> 00:44:19.599
So there are so many exciting things happening in the fitness world, in the longevity world, um, for the general population.
00:44:19.760 --> 00:44:27.280
And I do, and I think that there is some research happening in the inborn era of metabolism population, which is so, so, so exciting.
00:44:27.679 --> 00:44:38.559
I think overall, some of the what we're kind of learning in the general population can be applied to individuals with inborn errors of metabolism.
00:44:38.719 --> 00:44:58.320
Um, for example, like the research on strength training and longevity, there's no part of my mind that thinks that individuals with inborn error metabolism would not benefit from strength training like the general pop, like the general population has shown to.
00:44:58.480 --> 00:45:18.079
Um but overall, what I am most excited about for regardless of the research and kind of what is out there, what I am most excited for for people with inborn errors of metabolism is just to experience physical activity as a whole and start using it as a way of life and a therapy.
00:45:18.719 --> 00:45:26.320
Um I again think that for so many years, individuals with inborn errors of metabolism were told what they can't do.
00:45:26.400 --> 00:45:26.719
Yeah.
00:45:26.960 --> 00:45:30.320
And I think we're moving into an era of what you can do.
00:45:31.280 --> 00:45:45.119
And I'm really excited for every individual, regardless of diagnosis, to be able to be active and be proud of what their bodies are able to accomplish.
00:45:45.440 --> 00:45:50.639
And it's also something that we have the ability to control, which is awesome as well.
00:45:52.079 --> 00:46:00.000
Yes, it is again like you get to, regardless of a diagnosis, you get to decide to be active every day.
00:46:00.239 --> 00:46:00.639
Yes.
00:46:00.880 --> 00:46:11.360
We love to celebrate community question success stories on metabolically speaking, highlighting real conditions, real stories, and shedding light on to living a life without limits.
00:46:11.599 --> 00:46:14.079
Do you have a favorite story you can leave us with?
00:46:14.239 --> 00:46:21.840
For example, a patient who discovered confidence or control in their own body rather than being defined by their diagnosis?
00:46:22.639 --> 00:46:25.840
So I all of my patients are special.
00:46:26.079 --> 00:46:33.280
Um, but I do have um a patient that holds a super special place in my heart for so many reasons.
00:46:33.519 --> 00:46:42.960
Um, this was a patient that inspired our clinic to go from the traditional PKU diet to the simplified PKU diet.
00:46:43.599 --> 00:46:52.320
Um, and so a background on this patient, he was one of my first, first patients that I saw in the metabolic space when I saw him.
00:46:52.400 --> 00:46:54.719
He was not even in elementary school yet.
00:46:54.880 --> 00:47:00.400
Um, and I remember his mom brought me his diet records and his fee levels.
00:47:00.480 --> 00:47:02.000
This is an individual with PKU.
00:47:02.079 --> 00:47:07.760
His fee levels were perfectly in control, always like between 200 and 250.
00:47:08.159 --> 00:47:09.920
Um, perfectly in control.
00:47:10.079 --> 00:47:12.960
And the mom, this was the first time that we had met.
00:47:13.039 --> 00:47:32.000
I had spoken to the mom on the phone a few times, but the first visit brought me his diet records, and his diet was pretty much Skittles, uh, um, lemon pudding, and like Twinkies.
00:47:32.639 --> 00:47:40.480
And I was a like I was very confused as a kind of a new metabolic dietitian.
00:47:40.880 --> 00:47:44.960
And I was like, well, why doesn't he eat any fruits and vegetables?
00:47:45.039 --> 00:47:50.639
And at this point, I had kind of read about the simplified diet, but like our clinic had had not been using it.
00:47:50.880 --> 00:48:03.119
Um, and the mom was mortified and said, Well, he can have skittles which are free, or I could count how many blueberries he eats, and I would rather like it's easier for him to have Skittles.
00:48:03.280 --> 00:48:09.199
And I kind of was, I was like, but he can't just like this this is crazy.
00:48:09.519 --> 00:48:26.320
Um and and so I I was I was so I I was like, I I don't know if I could tell people that it's okay as a dietitian to like just eat Skittles and Twickies all day, um, if their fee levels are okay.
00:48:26.480 --> 00:48:37.920
And so I learned about the simplified diet and I brought it to our team, and he was the first patient that we use the simplified diet on.
00:48:38.400 --> 00:48:48.320
And while he is he still eats a lot of lemon pudding, um he does now eat lots of fruits and vegetables.
00:48:48.480 --> 00:48:52.960
It did take a while for him to be okay with them, but he eats lots of fruits and vegetables.
00:48:53.039 --> 00:48:54.800
So that's kind of the first part of the story.
00:48:55.039 --> 00:49:04.159
But about two years after we transitioned him to the simplified diet, he came to clinic with his mom and I asked him how school was going.
00:49:04.239 --> 00:49:06.880
And he's always been an excellent, excellent student.
00:49:07.119 --> 00:49:10.960
And he said, I really want to play baseball.
00:49:11.440 --> 00:49:14.400
And the and I said, Well, why aren't you playing baseball?
00:49:14.559 --> 00:49:21.599
And his mom said, He can't play baseball because it's gonna make his fee levels, it's gonna cause his fee levels to increase.
00:49:21.679 --> 00:49:23.920
And I said, I don't think that that's true.
00:49:24.239 --> 00:49:27.360
But so, but it's important that he's physically active.
00:49:27.440 --> 00:49:30.000
And if he wants to play baseball, I think he can play baseball.
00:49:30.079 --> 00:49:35.519
And I don't think his fee levels are gonna change if as long as he kind of is properly nourished.
00:49:35.760 --> 00:49:42.320
And so his mom said, Okay, we'll put him in baseball and we'll check his fee levels every week to make sure they're not increasing.
00:49:42.480 --> 00:49:44.559
And I said, Okay, deal.
00:49:44.800 --> 00:49:47.199
She was she made me do the same thing with a simplified diet.
00:49:47.280 --> 00:49:49.119
So we checked his fee levels a lot.
00:49:49.199 --> 00:49:51.440
Thankfully, he's okay with finger sticks.
00:49:51.920 --> 00:49:59.840
Um, and so he started baseball and his fee levels actually kind of went down.
00:50:00.480 --> 00:50:06.960
Um, and he again, this was now, this has been over a decade.
00:50:07.119 --> 00:50:16.800
Um, but he is now in high school and being recruited for Division I and Minor League Baseball teams.
00:50:17.360 --> 00:50:19.760
So he's an all-star baseball player.
00:50:19.920 --> 00:50:25.679
Um, his fee levels have essentially always stayed 200 to 250.
00:50:26.000 --> 00:50:32.719
Um, he is a strong kind of proponent for his PKU management.
00:50:33.039 --> 00:50:35.760
He travels a ton for baseball.
00:50:35.920 --> 00:50:41.840
He's always in um tournaments and these like special leagues.
00:50:41.920 --> 00:50:58.239
And I always ask him when you're playing on like new teams and with like different people, and you guys go to team meals and they ask why you're only eating a salad or only eating French fries, um, what do you tell them?
00:50:58.480 --> 00:51:01.039
And he tells them that he has PKU.
00:51:01.119 --> 00:51:03.840
And if they and I say, do they ever ask any more questions?
00:51:03.920 --> 00:51:05.360
And he's like, When they do, I explain it.
00:51:05.599 --> 00:51:07.440
When they don't, it's there.
00:51:07.679 --> 00:51:12.719
Um, and so he's he's really confident with his PKU.
00:51:13.039 --> 00:51:24.800
Um, and he really understands that controlling his fee levels has helped him get to the point where he is and to be as successful with baseball as he is.
00:51:24.960 --> 00:51:30.719
Um, and I've spoken to that I I've worked with his strength and conditioning coaches.
00:51:30.960 --> 00:51:38.239
Um, and they've all said that his PKU is not a limitation to how strong he has been able to become.
00:51:38.480 --> 00:51:39.760
That's amazing.
00:51:40.079 --> 00:51:41.440
I love that story.
00:51:41.679 --> 00:51:43.440
Thank you so much for sharing that.
00:51:43.599 --> 00:51:46.400
And hopefully he will listen to this episode.
00:51:47.039 --> 00:51:48.400
But thank you, Stephanie.
00:51:48.480 --> 00:51:51.840
You've shared his mom did tell me that I could share everything about him.
00:51:52.079 --> 00:51:52.400
Okay.
00:51:52.800 --> 00:51:54.239
That's crazy here.
00:51:54.639 --> 00:51:56.239
Um, but thank you so much.
00:51:56.400 --> 00:52:04.320
You've shared some truly inspiring stories, and I'm sure we're all feeling ready to get our shoes on, get active, and take these stories to heart.
00:52:04.559 --> 00:52:11.760
For me, my favorite way to get my heart rate up is workout classes such as CrossFit, F-45, and cycling classes.
00:52:11.920 --> 00:52:14.880
But we'd love to hear from our audience, you guys.
00:52:15.039 --> 00:52:22.559
So leave us a comment on your favorite podcast platform or on social media and let us know the way you love to get moving.
00:52:22.800 --> 00:52:30.239
Before we wrap up today's episode, it's time for our community conversations where we hear directly from you, our listeners.
00:52:30.480 --> 00:52:38.800
This segment will ask questions you've submitted, giving us a chance to explore our guest story and new and personal perspectives.
00:52:39.280 --> 00:52:41.440
All right, Stephanie, are you ready?
00:52:42.000 --> 00:52:42.639
I'm ready.
00:52:42.880 --> 00:52:43.280
All right.
00:52:43.440 --> 00:52:50.960
So, Sarah Chamberlain, who's the moderator of the group for parents of PKUers, asked a question on behalf of the group.
00:52:51.119 --> 00:52:59.039
She said, How can individuals with metabolic conditions best track their impact of exercise of their health?
00:52:59.360 --> 00:53:01.840
What should we be looking for?
00:53:02.480 --> 00:53:04.239
So I love this question.
00:53:04.400 --> 00:53:08.559
And there are so many ways to monitor the benefits of fitness on health.
00:53:08.639 --> 00:53:16.159
And I don't think that it is that it this goes for the general population and for those with inborn erosometabolism.
00:53:16.480 --> 00:53:24.239
But for anyone, some things that you can just monitor off the bat are your mood, sleep, and energy levels.
00:53:24.480 --> 00:53:30.320
Um again, just thinking about how you feel following an exercise session.
00:53:30.559 --> 00:53:38.400
Um, other things that you can kind of look for um is if as you're exercising, how you feel.
00:53:38.559 --> 00:53:39.840
Do you feel stronger?
00:53:40.000 --> 00:53:41.599
Do you feel faster?
00:53:41.840 --> 00:53:46.880
Um, are you able to lift heavier weights?
00:53:47.039 --> 00:53:49.760
Um, Meredith, you mentioned that you did CrossFit.
00:53:49.840 --> 00:53:53.840
So it could be how you're progressing through the CrossFit routines.
00:53:54.159 --> 00:54:02.159
Um, so there's again, these are things that regardless of diagnosis, that you can that any individual can monitor.
00:54:02.320 --> 00:54:10.239
If you have decided that running is an exercise that you like, it could be how far you're going in a certain point of time.
00:54:10.719 --> 00:54:22.079
Um and it could also be, again, another thing that can be monitored is looking at biometric parameters, looking at blood pressure or body composition and lab work.
00:54:22.159 --> 00:54:30.880
So in the PKU community, it could be monitoring those fee levels to see how your fee tolerance is responding to exercise.
00:54:31.119 --> 00:54:39.760
Um, there are also biometric trackers, um, like I wear an aura ring, there's the whoop, there's Apple Watches.
00:54:40.239 --> 00:54:49.199
Um these kind of biometric trackers have become kind of very, very accessible um for the general population.
00:54:49.360 --> 00:54:57.039
And again, there's no reason that someone with an inborn diag air, an inborn air metabolism cannot use one of these devices.
00:54:57.280 --> 00:55:03.199
Most of them also have kind of health, like you enter your health background and you can even enter your diagnosis.
00:55:03.360 --> 00:55:14.559
And some of them are able to um kind of take into account a metabolic diagnosis in what they're in how they're interpreting data.
00:55:15.039 --> 00:55:24.400
Um so kind of tracking the benefits of fitness again can just be as simple as how you feel, but you can also get into the data.
00:55:24.559 --> 00:55:32.000
Like I know based off of my aura data that I sleep better when I do certain types of activity.
00:55:32.480 --> 00:55:33.440
Yeah, that's great.
00:55:33.519 --> 00:55:35.119
And I have an aura ring on as well.
00:55:35.199 --> 00:55:40.800
And I love being able to connect it with my clinic, just sharing the data with them as well.
00:55:41.039 --> 00:55:48.320
Because being able to send them a screenshot of what I see in the app is also helpful to see, comparing that to fee levels and stuff like that.
00:55:48.559 --> 00:55:50.000
So that is great.
00:55:50.239 --> 00:55:59.360
The next questions we have come from an individual who'd like to remain anonymous, but it's kind of a two-question um related topic.
00:55:59.519 --> 00:56:04.719
So this individual said, How can I get a child under 10 years old to try new foods?
00:56:04.960 --> 00:56:14.320
My PKU child, who is now seven, has been like this forever and will not try new things, no matter what we try, no matter what we say, no matter what we do.
00:56:14.480 --> 00:56:18.000
So he's stuck on higher protein or empty calorie snacks.
00:56:18.239 --> 00:56:40.480
Sounds like the patient who liked Skittles, but so one thing that I recommend, and um the this has worked with my patient population is to get children involved in the snack, in their in their food choices and what is available to them.
00:56:40.639 --> 00:56:48.480
Um so something that has really worked with a lot of my patients is to get kids involved with cooking their foods.
00:56:48.719 --> 00:56:50.719
So in the preparation.
00:56:50.800 --> 00:56:56.960
Um, and when they see kind of different foods being prepared, they may be more inclined to try them.
00:56:57.199 --> 00:57:12.239
Um, also for being a picky or selective eater, um, we know that individuals with PKU or inborn errors of metabolism may be more likely to kind of be a selective eater.
00:57:12.400 --> 00:57:15.280
Um, but it is common in the general population.
00:57:15.519 --> 00:57:22.480
And what has been shown to be effective is kind of repeated exposures to new food.
00:57:22.719 --> 00:57:36.480
Um, so ensuring that you don't just show a child or an individual a food once that there's kind of that it's repeatedly there on a plate and eventually they'll be interested.
00:57:36.719 --> 00:57:54.480
Um and if again, they're a child or an individual is stuck on kind of higher protein foods that may not be serving them a really it may not be easy, but we've recommended just total elimination from that food in the house.
00:57:54.639 --> 00:57:59.039
And eventually an individual may be likely to try other foods.
00:57:59.280 --> 00:58:01.280
Um, again, it's not easy.
00:58:01.360 --> 00:58:04.320
We don't want any child to feel hungry.
00:58:04.639 --> 00:58:17.280
Um, but these are kind of tools that have been shown to be effective in the general population to get people that again may be more selective to be interested in new foods.
00:58:17.679 --> 00:58:18.320
Got it.
00:58:18.480 --> 00:58:27.280
How can you focus on food choices and restrictions that come naturally with PKU while making sure there's a positive relationship with food?
00:58:28.400 --> 00:58:33.760
So we I am a big supporter of the simplified diet.
00:58:33.920 --> 00:58:53.519
I think um that is the the no main, the the nomenclature simplified diet refers to when individuals with PKU do not have to count or monitor their intake of certain fruits and vegetables and other kind of specially modified foods.
00:58:53.760 --> 00:59:00.800
Um some clinics call these free foods, some clinics call these green, like green light foods.
00:59:00.960 --> 00:59:04.079
Um, so every clinic has their own terminology.
00:59:04.480 --> 00:59:10.239
Um some clinics call them non-counted foods.
00:59:10.480 --> 00:59:17.760
Um and some clinics don't call the simplified diet the simplified diet, some call it the European method.
00:59:17.840 --> 00:59:42.000
Um, but essentially the the the point is is that there's a large, a very large selection of foods that individuals with PKU or other inborn eras and metabolism may not have to think about consuming, um, in the sense that they don't have to think about counting how much protein they're getting from that.
00:59:42.719 --> 00:59:54.320
Um, and so we have found that by using the simplified diet, and now our clinic has been using it thanks to the individual that I spoke about, um our clinic has been using it for over a decade.
00:59:54.639 --> 01:00:10.079
Um, and with the use of the simplified diet, especially when we're introducing foods to babies, we are seeing that the majority of our PKU patients are significantly less selective than they previously were.
01:00:10.320 --> 01:00:10.639
Okay.
01:00:10.880 --> 01:00:18.960
Um, most of our patients eat a really wide variety of, in our clinic, we call them free foods.
01:00:19.119 --> 01:00:19.440
Yeah.
01:00:19.679 --> 01:00:37.679
Um, but of the free foods, um, because these are foods that their family just turned to um when they were younger because it was less stressful overall um for them to be again, essentially for them to be given a bowl of blueberries.
01:00:38.079 --> 01:00:45.760
Um and the family never had to think like, okay, well, I have to count how many blueberries are left in the bowl and how many were there originally.
01:00:45.840 --> 01:00:48.239
They can the child can just eat the blueberries.
01:00:48.400 --> 01:00:54.800
This has also allowed our families to kind of establish what we call like a PKU-friendly snack drawer.
01:00:54.880 --> 01:00:55.119
Yeah.
01:00:55.280 --> 01:01:08.239
Um, so that in most of our um families' homes, they have a drawer in the refrigerator where the individual with PKU knows that they can go into that drawer and eat whatever they want.
01:01:08.400 --> 01:01:11.360
And as a child, they don't have to go tell their mom.
01:01:11.440 --> 01:01:11.760
Yeah.
01:01:11.920 --> 01:01:20.400
That they can go and take whatever foods that family puts in there that are, again, our clinic we call them free.
01:01:20.559 --> 01:01:31.760
Um, but the child can go and if they're feeling hungry, they can go and grab a snack and they don't feel like they have to go tell their parent everything that they put in their mouth.
01:01:31.920 --> 01:01:41.280
And having that freedom, even as a four-year-old, allows for essentially a more positive relationship with food.
01:01:41.599 --> 01:01:42.320
Sounds great.
01:01:42.480 --> 01:01:51.840
And that definitely has helped me in the past with even today being on a simplified diet, my free food favorite is a salad.
01:01:52.000 --> 01:01:53.280
So Yep.
01:01:53.360 --> 01:01:57.199
And that's and that's what the the individual said.
01:01:57.360 --> 01:02:08.400
I I know I can go to any restaurant and I can order a romaine salad with no croutons and no cheese, and everything else they put on it, I can eat.
01:02:08.639 --> 01:02:10.239
Yeah, extra tomatoes.
01:02:10.400 --> 01:02:11.039
Yep.
01:02:11.679 --> 01:02:12.320
Yes.
01:02:12.639 --> 01:02:15.280
Well, that is all for the community conversations.
01:02:15.440 --> 01:02:16.800
Thank you so much, Stephanie.
01:02:16.960 --> 01:02:21.119
And thank you to our audience as we received so many thoughtful questions.
01:02:21.360 --> 01:02:29.760
If you want to include a question in future episodes, keep an eye out on my social media posts as I'll regularly ask for input from our community.
01:02:30.000 --> 01:02:38.719
As we wrap up today's show, I'd like to remind everyone that you can find helpful resources as well as more information from Stephanie in the show notes below.
01:02:38.960 --> 01:02:43.360
Thank you for listening and thank you so much, Stephanie, and we'll see you guys next time.
01:02:43.679 --> 01:02:45.280
Thank you so much, Meredith.
01:02:46.480 --> 01:02:49.519
That's it for today's episode of Metabolically Speaking.
01:02:49.679 --> 01:02:56.880
Rare conditions, real stories, and a reminder that life with a metabolic condition is about living, not about limits.
01:02:57.119 --> 01:03:01.599
If today's episode resonated with you, share it with someone who might need to hear it.
01:03:01.679 --> 01:03:04.239
And if you have a moment, please leave us a review.
01:03:04.320 --> 01:03:06.639
It helps others find their way here too.
01:03:06.880 --> 01:03:09.679
We'd love to hear from you, so feel free to reach out.
01:03:09.920 --> 01:03:14.239
If you have feedback on a story to share or a question, send us an email.
01:03:14.400 --> 01:03:16.880
You'll find the address in the show notes below.
01:03:17.039 --> 01:03:24.159
Make sure to subscribe to Metabolically Speaking on your favorite podcast platform, and tune in each month to join your tribe.
01:03:24.400 --> 01:03:26.719
Breaking barriers and living without limits.
01:03:26.880 --> 01:03:29.519
Thanks for being here, and we'll see you next time.
00:00:04.400 --> 00:00:11.519
Stephanie Hacker is a registered metabolic dietitian and newborn screen program manager at the University of Miami.
00:00:11.679 --> 00:00:20.079
With a background in exercise science and more than a decade of experience, Stephanie brings genuine insight to metabolically speaking.
00:00:20.480 --> 00:00:32.479
In this episode, we dive into the emotional and physiological benefits of being physically active and explore how metabolic diagnosis should empower and not limit the individual.
00:00:32.719 --> 00:00:38.719
We discuss the safety considerations as well as where to start for those beginning their active journey.
00:00:38.880 --> 00:00:43.600
So lace up, tune in, and join us for this episode of Metabolically Speaking.
00:00:43.840 --> 00:00:48.479
You'll be feeling inspired to move, feel, and live well.
00:00:49.920 --> 00:00:55.679
Welcome to Metabolically Speaking, the podcast that dives into life with inherited metabolic conditions.
00:00:55.920 --> 00:01:03.520
Proudly brought to you by Cambrook, delivering therapeutic nutrition for more than 25 years and empowering families to live without limits.
00:01:03.759 --> 00:01:05.680
I'm your host, Meredith Baker.
00:01:05.760 --> 00:01:13.040
I've lived with PQ my whole life, so I know the ups and downs and all the in-between moments that come with navigating a rare condition.
00:01:13.439 --> 00:01:23.599
Each month I sit down with experts, advocates, and people with lived experiences for honest conversations about what it really means to live with a metabolic condition.
00:01:23.840 --> 00:01:30.239
Whether you're newly diagnosed, supporting someone you love, or have been on this journey for a while, this space is for you.
00:01:30.400 --> 00:01:32.959
So settle in and let's get into it.
00:01:44.239 --> 00:01:53.760
Joining me today is Stephanie Hacker, metabolic dietitian and newborn screen program manager at the University of Miami Miller School of Medicine.
00:01:54.000 --> 00:02:03.280
Stephanie holds qualifications in food science and human nutrition, nutritional science and applied physiology and kinesiology.
00:02:03.519 --> 00:02:15.759
Stephanie has worked with hundreds of patients in inborn eras of metabolism, supporting people all the way from birth to adulthood to help ensure they're receiving the best possible nutrition and health care.
00:02:16.159 --> 00:02:26.879
She's a strong advocate for nutrition and rare disease education, often leading lessons for medical and graduate students taking part in the community and patient events.
00:02:27.120 --> 00:02:31.759
She also serves on various advisory councils supporting metabolic disorders.
00:02:32.000 --> 00:02:38.719
In addition to her work in genetics, Stephanie also has a big passion for sports, fitness, and wellness.
00:02:38.960 --> 00:02:47.599
She's a board certified specialist in sports dietetics and has spent more than 15 years as a group fitness instructor and a personal trainer.
00:02:48.000 --> 00:02:50.479
Stephanie, we're so excited to have you here.
00:02:50.639 --> 00:02:51.280
Welcome.
00:02:51.680 --> 00:02:53.360
Thank you so much for having me.
00:02:53.680 --> 00:02:54.479
Of course.
00:02:54.719 --> 00:02:56.400
Well, let's jump into it.
00:02:56.560 --> 00:02:59.360
This is going to be a very fun topic today.
00:02:59.680 --> 00:03:05.520
With the first question, there are many myths around exercise and inborn errors of metabolism.
00:03:05.759 --> 00:03:09.120
What are some of the biggest misconceptions you encounter?
00:03:09.199 --> 00:03:14.400
And how do you feel your patients understand that movement is about empowerment rather than limitations?
00:03:15.199 --> 00:03:25.599
So many individuals with inborn errors of metabolism think that they can't exercise or be active or participate in sports because of their diagnoses.
00:03:25.680 --> 00:03:28.560
And I would say that this is the biggest misconception.
00:03:28.960 --> 00:03:45.439
While there is very limited research into inborn errors of metabolism and fitness, there is kind of undisputed evidence that being physically active is beneficial to every individual, regardless of diagnosis.
00:03:45.759 --> 00:03:56.719
So while some inborn errors of metabolism requires some precautions to safely participate in fitness, everyone can and should participate and be physically active.
00:03:57.199 --> 00:03:57.840
Awesome.
00:03:58.080 --> 00:03:59.280
Thank you so much for that.
00:03:59.439 --> 00:04:00.479
That definitely makes sense.
00:04:00.639 --> 00:04:15.840
I feel like no matter your age or your goals, just starting is a great point of just finding something that you can have interest in or excitement for when starting to get more active in your day-to-day life.
00:04:16.399 --> 00:04:16.800
Yep.
00:04:16.959 --> 00:04:20.160
And that's like a perfect way to phrase it.
00:04:20.720 --> 00:04:24.720
There is something for everyone in terms of fitness and sport.
00:04:24.800 --> 00:04:30.319
And it's really about finding what connects with you to get you excited to move.
00:04:30.639 --> 00:04:32.399
Starting's the hardest part.
00:04:34.160 --> 00:04:38.240
What advice would you give to someone who wants to start being active?
00:04:38.480 --> 00:04:44.560
Are there some types of exercise better than others, such as endurance versus strength?
00:04:44.720 --> 00:04:47.199
How does it depend on the metabolic condition?
00:04:47.759 --> 00:05:00.720
So I think the biggest advice that I'd give to someone that wants to be active is to first talk to your metabolic team and your care team to make sure that if there are some precautions for your diagnosis, um, that you're aware of them.
00:05:01.040 --> 00:05:15.839
And with everything that we say in this podcast, again, I just want to reiterate that it's important that you do talk to your care team about your physical activity because there, again, may be some things that need to that you need to consider.
00:05:16.480 --> 00:05:22.959
Um and that changing your activity may have an impact on some of the treatment.
00:05:23.120 --> 00:05:32.319
Again, with that being said, it's not that you can't exercise, it's just that there may be some tweaks and changes um that need to be recommended just to keep you as healthy as possible.
00:05:32.480 --> 00:05:44.079
Um, but to get back to your question, um, other than talking to your care team, um just as we kind of spoke about, I think the best thing to do is to find something that you like.
00:05:44.240 --> 00:05:47.040
Getting started can feel overwhelming sometimes.
00:05:47.199 --> 00:05:48.639
There are a lot of options.
00:05:48.879 --> 00:05:55.519
You may feel super intimidated, intimidated walking into a gym or joining a recreational sports league.
00:05:55.680 --> 00:06:04.319
Um, so sometimes the greatest way to start is just on your own and start building confidence in your own home if that is what works for you.
00:06:04.639 --> 00:06:09.920
Um and again, you have to start with something that you're comfortable with.
00:06:10.079 --> 00:06:13.519
Um, and then my other recommendation is to make fitness fun.
00:06:13.920 --> 00:06:19.120
Um, some people look at me like I have 10 heads when I say fitness should be fun.
00:06:19.439 --> 00:06:22.160
Um and in my view, it is fun.
00:06:22.319 --> 00:06:26.639
But there's nothing more fun to me than moving my body and running around.
00:06:26.879 --> 00:06:29.839
Um, and so again, that's what's fun for me.
00:06:30.160 --> 00:06:34.399
But generally, people will have fun when they are moving their body.
00:06:34.560 --> 00:06:45.040
So sometimes that is, again, something that you feel comfortable with that can be fun and also a great way to enjoy the outdoors, maybe walking, which is just a great way to get started moving your body.
00:06:45.279 --> 00:06:56.240
Other ways, again, of making fitness fun can be playing sports if you have a little bit of a competitive edge, um, or going to a playground or doing a group fitness class or doing a dance class.
00:06:56.399 --> 00:07:00.959
All of these things are moving your body and having fun.
00:07:01.279 --> 00:07:08.240
And again, like if you go into a group fitness class and you feel intimidated, it was everyone's first time once.
00:07:08.399 --> 00:07:08.720
Yeah.
00:07:08.879 --> 00:07:10.639
So always keep that in mind.
00:07:10.800 --> 00:07:14.879
And in my experience in the fitness world, everyone is welcoming.
00:07:15.040 --> 00:07:21.360
No one is going to kind of make you feel that being new is a bad thing.
00:07:21.600 --> 00:07:22.160
Yeah.
00:07:22.480 --> 00:07:35.120
Um, and then to address your question of kind of what physical activity is beneficial, moving your body in general, whether it is endurance or cardiovascular, there are benefits.
00:07:35.439 --> 00:07:42.079
Um and so whatever works for you is what I think you should do.
00:07:42.480 --> 00:07:50.000
It the question is kind of what where there are more health benefits.
00:07:50.160 --> 00:07:52.720
Again, I think there's a balance between both.
00:07:52.879 --> 00:08:06.319
Um, but there is increasing literature in the general population, again, not those with inborn errors and metabolism, but in the general population of the benefits of strength training on just overall health and longevity.
00:08:06.879 --> 00:08:13.920
Uh, strength training really helps individuals maintain and even increase increase muscle mass.
00:08:14.160 --> 00:08:21.600
Um, and muscle has so many health and metabolic benefits for all individuals.
00:08:22.079 --> 00:08:29.680
And as people get older, and we know that individuals with inborn errors or metabolism are getting older, which is great.
00:08:29.839 --> 00:08:30.959
This is what we want.
00:08:31.120 --> 00:08:31.439
Yes.
00:08:31.680 --> 00:08:46.080
Um, but everyone, regardless of diagnosis, as we all get older, there's an increased uh likelihood that we are going to lose muscle mass.
00:08:46.159 --> 00:08:48.159
It happened because of hormonal changes.
00:08:48.320 --> 00:08:56.000
It happens just as an aspect of aging that our bodies start breaking down our muscles as we age.
00:08:56.320 --> 00:09:02.080
And the only way that has been found to combat this is uh strength training.
00:09:02.399 --> 00:09:05.759
So strength training is generally lifting weights.
00:09:05.919 --> 00:09:12.799
Um, it's by definition, strength training is uh using your muscles against a resistive force.
00:09:12.960 --> 00:09:19.759
So again, we generally think lifting weights, but it can be Pilates, where you're on like a spring-loaded platform.
00:09:19.840 --> 00:09:25.519
Um, it can be using your body weight, resisting again, your muscles against gravity.
00:09:25.919 --> 00:09:35.039
Um and so regardless of age, again, for older individuals, strength training is super, super important.
00:09:35.120 --> 00:09:44.000
But regardless of age, strength training is critical to help build and maintain that muscle mass.
00:09:44.240 --> 00:09:58.000
Um, and again, just like we spoke about, there are some precautions that some individuals with inborn errors of metabolism may need to consider um either with pre-exercise nutrition and or post-exercise nutrition.
00:09:58.240 --> 00:10:08.799
But there's no reason that based on any metabolic diagnosis, that an individual with an inborn error of metabolism cannot participate in strength training or really any activity.
00:10:09.120 --> 00:10:09.600
That's great.
00:10:10.000 --> 00:10:14.480
No, and I think something that stood out to me was you saying, making it fun.
00:10:14.720 --> 00:10:24.960
I know this is so funny, but thinking back to the first time I met you was at an exercise class at a PKU camp and there was a burpees competition going on.
00:10:25.200 --> 00:10:36.080
So I always think of you with like exercise as it is automatically, but it's just bringing the fun into it and finding it, finding what's best for you is definitely gonna help.
00:10:36.159 --> 00:10:39.679
But I love hearing about the importance of gaining strength.
00:10:39.840 --> 00:10:41.440
So thank you for that.
00:10:41.759 --> 00:10:54.159
For families listening, especially parents and caregivers of children with metabolic conditions, what advice would you give to those hesitant to let their child participate in sports at school?
00:10:54.960 --> 00:11:04.639
So I this is a again, uh I understand parents' hesitancy, especially in school where like they may not be watching their kids.
00:11:04.720 --> 00:11:05.039
Yeah.
00:11:05.200 --> 00:11:39.120
But I have found that most of our families that have essentially that um who who have children um with inborn eros and metabolism, we generally work with the family and the school um to either that the individuals are on IEPs or 504 plans, not necessarily because they need these things, but because with those plans, they can be given kind of special um attention kind of during their school day when parents may not be there.
00:11:39.600 --> 00:11:57.840
Um so we really again work with our families and our patients and their whoever is their caregiver at school, whether it's a teacher or an administrator or a school nurse, to educate them on what the precautions for exercise for their diagnosis is.
00:11:58.000 --> 00:11:58.240
Yeah.
00:11:58.399 --> 00:12:05.919
Um, and so for a lot of so we again tell our families that every individual can participate in physical activity.
00:12:06.080 --> 00:12:12.159
Like I have a patient with a fatty acid oxidation defect.
00:12:12.399 --> 00:12:19.919
And originally the family didn't want this little girl to participate in recess.
00:12:20.399 --> 00:12:31.279
And I think that there's a lot of one, I think recess is important for kids to kind of break up their day, but I also think it's it's a community.
00:12:31.600 --> 00:12:34.399
During recess, kids play, they socialize.
00:12:34.639 --> 00:12:48.559
And so because this family was hesitant, understandably, because they didn't want her to have a metabolic crisis at school by exerting herself so much, um, they wanted her to kind of refrain.
00:12:48.720 --> 00:13:02.960
And as a clinician and also as an advocate for patients to be active, I really tried to, I counseled this family and eventually, so essentially in kindergarten, she didn't participate.
00:13:03.039 --> 00:13:09.200
But when she went into the first grade, um, we were able to work with the school and also her medication regimen.
00:13:09.279 --> 00:13:21.279
So essentially, how we combat the parents' fear is that she gets a dose of her medication and also a carbohydrate-rich snack prior to her going to recess.
00:13:21.440 --> 00:13:28.399
The school was also able to work with her schedule so that she gets to go to recess pretty much right after lunch.
00:13:28.559 --> 00:13:35.519
So we know that she's adequately fueled for essentially whatever she wants to do in recess.
00:13:35.840 --> 00:13:49.279
And she knows and she's able to vocalize, and her parents feel confident that if she does feel that she's running out of energy or that her muscles hurt, that's the terminology that she sometimes uses.
00:13:49.440 --> 00:13:52.559
She says, she says, My legs hurt.
00:13:52.799 --> 00:14:02.480
Um, that she knows to stop and to go take a sip of her Gatorade or get a snack and to rest so that she does not overstress her body.
00:14:02.799 --> 00:14:04.240
That's very interesting.
00:14:04.399 --> 00:14:12.639
And it sounds like IEPs and 504s could also help in sport-related activities with the school, not just education-based.
00:14:12.879 --> 00:14:13.200
Yep.
00:14:13.440 --> 00:14:13.679
Okay.
00:14:13.919 --> 00:14:36.720
So, in our experience, and again, this is I or my experience is um where I live and where I um where my patients live, um, the school districts in our area, um, again, the IEPs and the FIBO floors kind of follow the student in whatever activities they do on school campus.
00:14:37.039 --> 00:14:38.559
Okay, that's awesome to know.
00:14:38.639 --> 00:14:39.759
I was not aware of that.
00:14:39.919 --> 00:14:41.840
That is very great.
00:14:42.159 --> 00:14:46.799
Following on that topic, we know that safety is the most important thing.
00:14:46.960 --> 00:14:55.919
What are some key considerations and practical tips for manage for managing exercise safely while maintaining good metabolic control?
00:14:56.879 --> 00:15:03.759
So fueling for activity is really critical for everyone, regardless of metabolic diagnosis.
00:15:04.000 --> 00:15:16.240
Just, I don't have an inborn air of metabolism, but for me, when I go and exercise, being adequately fueled for that exercise and taking adequate nutrition after that exercise is critical to my recovery.
00:15:16.399 --> 00:15:19.600
Um, so it is critical for everyone's recovery.
00:15:19.840 --> 00:15:28.240
Um again, depending on the metabolic diagnosis, there may be some other precautions needed to ensure metabolic control.
00:15:28.320 --> 00:15:31.519
Like we spoke about a fatty acid oxidation defect patient.
00:15:31.759 --> 00:15:52.960
These patients really need to ensure that they have a source of medium-chain triglycerides to use for energy prior and carbohydrates prior to an exercise session so that they don't try to use their stored fat, which can be dangerous for them depending on, again, the severity and the type of fatty acid oxidation defect.
00:15:53.120 --> 00:16:03.200
A patient with PKU or tyrosinemia, um, again, there's no real pre-exercise nutrition that you need to focus on.
00:16:03.440 --> 00:16:08.879
The general recommendation would be to eat to have some sort of carbohydrate source.
00:16:09.039 --> 00:16:14.720
Carbohydrates are the pure preferred source for an exercising muscle.
00:16:14.879 --> 00:16:23.840
Um, so if you have carbohydrates kind of or glucose in your blood, it kind of makes your body work better during an exercise session.
00:16:24.240 --> 00:16:30.480
Um and again, a patient with PKU or tyrosinemia is not going to have a metabolic crisis.
00:16:30.559 --> 00:16:39.360
So we're not kind of concerned if during an exercise session your body gets too stressed, it's just as if anyone else's body got stressed.
00:16:39.600 --> 00:16:51.440
Um, however, after an exercise session, and again, this is for every individual, but I think for individuals with um kind of an amino acid metabolism disorder, it's important to think about.
00:16:51.519 --> 00:17:04.880
And I did say like PKU and um tyrosinemia, similar kind of recommendations would go for homocysteine urea, essentially assuming that homocysteine levels are controlled in that condition.
00:17:05.359 --> 00:17:19.759
Um but as far as after exercise nutrition, you want to make sure that you are replacing the amino acids or the protein that your muscles use during an exercise session.
00:17:19.839 --> 00:17:23.920
So this goes kind of whether you're doing strength or endurance exercise.
00:17:24.079 --> 00:17:32.799
Whenever you are exercising your muscles, tiny tears are happening at that muscle surface or like and within the muscle.
00:17:33.119 --> 00:17:47.119
And so you have like the way that I think about it is that when you're done exercising, you're essentially to get those muscles to repair back stronger, they need all of the nutrients available.
00:17:47.599 --> 00:17:50.720
And the way to get those nutrients is to consume it.
00:17:50.960 --> 00:18:10.480
Uh, so the in the general population, the overall recommendation is to consume a protein rich and also some carbohydrates, again, to replace those lost in the exercise session within ideally as soon as possible, but within two hours of an exercise session.
00:18:10.559 --> 00:18:17.440
And in the general population, there is conflicting data the optimal time.
00:18:17.599 --> 00:18:23.039
And the data kind of differs on based off of male and female metabolism.
00:18:23.200 --> 00:18:27.759
So there are different recommendations for males and females, but the overall recommendation is two hours.
00:18:27.920 --> 00:18:33.920
So if you can consume something within two hours, your body can use it optimally.
00:18:34.240 --> 00:18:36.640
So an example of that would be formula.
00:18:37.119 --> 00:18:37.680
Exactly.
00:18:37.920 --> 00:18:55.839
For any amino acid-based disorder, um, your formula or medical food, whatever you want to call it, provides your body with all of the amino acid that it needs without the amino acid that your body can't metabolize optimally.
00:18:56.319 --> 00:19:05.920
Um, and so after an exercise session, again, like when you are in a state where your muscles have kind of been a little bit damaged, don't worry, it's okay.
00:19:06.079 --> 00:19:08.079
It's what they're supposed to do.
00:19:08.319 --> 00:19:11.759
Um, there are amino acids circulating in your blood.
00:19:11.920 --> 00:19:19.039
And so some of those amino acids circulating in your blood are the amino acid that you may not be able to metabolize.
00:19:19.119 --> 00:19:19.920
And that's okay.
00:19:20.000 --> 00:19:21.440
It's part of metabolism.
00:19:21.599 --> 00:19:31.119
But as you take in other amino acids, your body is able to use all of the amino acids in the blood to help repair those muscles optimally.
00:19:33.200 --> 00:19:53.759
And so I always recommend our patients take their medical food within two hours of an exercise session, at least a portion of it from their daily dose, um, to ensure that they're giving, that they're getting um the amino acids that they need for their body to recover.
00:19:54.079 --> 00:20:04.720
Um, for other individual, again, for individuals that may have a fatty acid oxidation defect, it's important for them to also take a protein source, but they can do it from food.
00:20:04.880 --> 00:20:12.799
Um, so they can take like a higher protein food source or um like a protein shake or a protein bar.
00:20:12.880 --> 00:20:18.480
Again, for someone, an individual with PKU, um, you would think of your medical food as that.
00:20:18.559 --> 00:20:33.519
Um, some other kind of diagnoses that we didn't really talk about, like uh glycogen storage disorder, they would benefit from a dose of cornstarch prior to an exercise session and then also monitoring their blood glucose throughout the exercise session.
00:20:33.680 --> 00:20:36.240
Um, and again, this is something that they need to work on.
00:20:36.319 --> 00:20:43.759
It's a very individual, it's very uh individuals' blood glucose response is incredibly individual to them.
00:20:44.000 --> 00:21:03.359
Um, so this is where in our clinic we find continuous glucose monitors to be really helpful so that we can kind of track what's happening to their blood glucose during an exercise session, and we can adjust their cornstarch and their snack protocol in response to that.
00:21:03.440 --> 00:21:11.839
Um, but again, uh individual with a glycogen sore disorder would also benefit from having a protein-rich snack after their exercise session.
00:21:12.240 --> 00:21:12.880
Got it.
00:21:13.119 --> 00:21:23.279
So, kind of a two-part question to that is the World of Health organization recommends that adults aim for 150 to 300 minutes of exercise per week.
00:21:23.519 --> 00:21:29.359
Does this guideline apply to people with metabolic conditions too, or should it be tailored to the individual?
00:21:29.920 --> 00:21:32.960
So these guidelines apply to all individuals.
00:21:33.279 --> 00:21:41.680
And regardless of diagnosis, I do want to kind of just say that any physical activity is beneficial.
00:21:41.920 --> 00:21:47.759
So whatever someone is able to do, there is benefit.
00:21:47.839 --> 00:21:59.599
So I never want anyone to think, well, I have to exercise 30 minutes a day, five days a week to hit the who guidelines or the work.
00:22:00.319 --> 00:22:01.680
Health organization guidelines.
00:22:01.920 --> 00:22:02.079
Right.
00:22:02.400 --> 00:22:07.920
Really, whenever you can move your body, and for however long, there is benefit.
00:22:08.160 --> 00:22:20.000
And just as another caveat to that, the more you move your body, and the World Health Organization recognizes this: that the more you move your body, the more benefits there are, assuming that you are properly nourished.
00:22:20.319 --> 00:22:20.880
Got it.
00:22:21.039 --> 00:22:22.000
That makes sense.
00:22:22.240 --> 00:22:29.599
So it can be hard to maintain a regular fitness regimen alongside work, studies, childcare, and everything in between.
00:22:29.839 --> 00:22:40.640
What is recommended in mind for some practical ways for individuals to stay motivated and build a sustainable routine with also juggling their metabolic condition?
00:22:41.680 --> 00:22:49.519
So incorporating activity into your daily routine, I think, is the best way to get fitness into a busy, busy schedule.
00:22:49.599 --> 00:23:01.200
So it can be as easy as parking further away from where you're going and walking a further distance essentially from your car to a store, um, or taking the stairs.
00:23:01.440 --> 00:23:09.279
Um and again, kind of building you can in those things, you can build five minutes of activity.
00:23:09.359 --> 00:23:13.599
And if you do that five times a day, that's 25 minutes of activity.
00:23:13.920 --> 00:23:24.559
Um there is benefit of what's called intentional physical activity, and that is kind of where you have planned physical, like planned time for physical activity.
00:23:24.720 --> 00:23:29.119
Um, and again, that can be really hard with everyone's busy schedules.
00:23:29.359 --> 00:23:42.640
Um and what I always recommend is that you once you feel the benefits of physical activity, it's not difficult to make fitness and physical activity a priority.
00:23:42.799 --> 00:23:46.240
And it just kind of tends to occur naturally.
00:23:46.960 --> 00:23:53.920
Um I personally like block an hour every morning for my own movement.
00:23:54.000 --> 00:24:05.680
And like this has been a non-negotiable for me for as long as I can remember, even in high school, I would wake up early so that I could get my movement in because to me, it helps set my day.
00:24:05.920 --> 00:24:12.079
And so it, regardless of what's going on in my life, this is kind of a constant.
00:24:12.400 --> 00:24:22.400
Um, and this is something as I've kind of gotten more people to be active, they find again that there's something that for them becomes important.
00:24:22.640 --> 00:24:33.039
Um, like I have a friend that really, and again, she does not have a metabolic disorder, um, but she really did not like being active.
00:24:33.200 --> 00:24:35.119
It was not something that she enjoyed.
00:24:35.200 --> 00:24:50.799
And so she was telling me that she was having trouble sleeping and that she wasn't feeling focused at work and all of these changes that she kind of felt in her mental space.
00:24:51.119 --> 00:24:56.400
And I suggested that she start moving her body just a little bit every day.
00:24:56.640 --> 00:25:04.960
Um, and so we started together by going to different workout classes um together, and she finally found that she really enjoyed Pilates.
00:25:05.759 --> 00:25:13.440
And it was actually really exciting for me because this past week we were actually supposed to do something socially together.
00:25:13.599 --> 00:25:15.119
Um, not a workout class.
00:25:15.200 --> 00:25:17.200
We were going to a group dinner.
00:25:17.519 --> 00:25:25.839
And she texted me in during the day of this group dinner, and she said, you know, I really haven't been feeling great.
00:25:25.920 --> 00:25:29.039
And I realize that I haven't made it to Pilates in over a week.
00:25:29.119 --> 00:25:31.599
So I think I'm gonna skip the dinner to go to Pilates.
00:25:33.359 --> 00:25:51.039
And so that was again, she pretty much decided that taking care of herself was more important than kind of having the social activity that we had planned, which some friends may get upset about that, but I was really happy that she was taking care of herself.
00:25:51.359 --> 00:25:51.920
That's great.
00:25:52.000 --> 00:25:56.240
And that's a great example for us to really connect with.
00:25:56.559 --> 00:26:01.759
What are some physical benefits of keeping active with having a metabolic condition?
00:26:02.480 --> 00:26:07.279
So there's so so there's physical benefits and mental health benefit.
00:26:07.440 --> 00:26:19.119
So I think the biggest, biggest benefit of physical health is what we what has been termed longevity, and that is living well longer.
00:26:19.599 --> 00:26:30.240
So it used to be kind of thought that people would live until 100, but kind of from 80 to 100, they weren't really, or they're they may not be that healthy.
00:26:30.400 --> 00:26:30.720
Yeah.
00:26:30.960 --> 00:26:33.599
So how do we stay well longer?
00:26:33.759 --> 00:27:04.400
And what a lot of research in the general population has shown is that physical activity and maintaining muscle mass is the one of the biggest drivers, even more than heart disease or blood pressure, or kind of any of these other kind of health parameters that we that you may hear spoken about in your doctor's visits, but the one of the biggest factors to longevity is physical fitness.
00:27:04.640 --> 00:27:11.920
Um, and so that I think is one of the biggest physical benefits with that um disease prevention.
00:27:12.079 --> 00:27:16.319
So I just brought up like heart disease um and blood pressure.
00:27:16.720 --> 00:27:36.000
Um individuals with inborn errors of metabolism, we have learned that as you are aging, or as individuals with inborn errors of metabolism are aging, you are just at the same risk of developing kind of health-related disorders as the general population.
00:27:36.079 --> 00:27:46.799
And so these health-related disorders that we think about again are heart disease, high blood pressure, um, diabetes, metabolic syndrome.
00:27:46.960 --> 00:27:58.480
Um, again, these are all disorders or kind of issues that have been found to be related to nutrition and lack of movement.
00:27:58.720 --> 00:28:05.359
And so moving one's body helps to combat these diseases again in the general population.
00:28:05.680 --> 00:28:10.960
And we know is the same in the inborn Arab metabolism population.
00:28:11.119 --> 00:28:12.559
So that's another big thing.
00:28:12.720 --> 00:28:15.119
The other factor is weight control.
00:28:15.759 --> 00:28:22.000
Um, so weight is not a large factor to health overall.
00:28:22.319 --> 00:28:31.279
Um, there's no in essentially there's not strong data that one body size lives longer better than another body size.
00:28:31.359 --> 00:28:36.400
That really breaks goes down into overall health and also fitness.
00:28:36.640 --> 00:28:43.440
Um, but some people feel more confident at a certain body size.
00:28:43.680 --> 00:28:48.960
And so moving your body helps to control weight.
00:28:49.200 --> 00:28:56.400
Um, another physical benefit is that exercise strengthens bones and muscles.
00:28:56.559 --> 00:29:06.000
Um, so those who exercise, it's known, but they're known to have stronger bones, especially those that participate in strength training.
00:29:06.240 --> 00:29:11.200
So every time we spoke about kind of the muscle damage a little bit ago.
00:29:11.359 --> 00:29:18.720
And so every time your muscles get essentially slightly damaged from exercise, muscles are connected to bones.
00:29:18.799 --> 00:29:21.279
We kind of learned about that in nursery rhymes.
00:29:21.440 --> 00:29:28.480
So every time your muscles get damaged, those where the muscles connect to the bones also get a little bit damaged.
00:29:28.720 --> 00:29:31.279
And so they pull on the bone.
00:29:31.440 --> 00:29:35.599
And so when the muscles repair stronger, so does the bone.
00:29:35.839 --> 00:30:01.279
So individuals that kind of strength train and use their muscles through their lives, have a lower chance of having disorders like osteopenia or osteoporosis because their bones have kind of become stronger and have been able to resist those age-related effects.
00:30:01.440 --> 00:30:08.000
Um, we know that individuals, specifically with PKU, um, can have lower bone mineral densities.
00:30:08.079 --> 00:30:16.400
I feel that there's also kind of with other metabolic disorders been noted lower bone mineral densities.
00:30:16.559 --> 00:30:24.400
Um, so I really think that being active with proper nutrition is a really good way to maybe combat this.
00:30:25.359 --> 00:30:36.880
Um kind of other benefits that kind of cross the line in from physical to kind of mental health is that exercise boosts energy and metabolism.
00:30:37.039 --> 00:30:42.480
Um, so the more you move your body, the more energy your body is going to burn.
00:30:42.640 --> 00:30:47.599
Um, so you may think, well, my body's burning more energy, then I'm gonna feel more tired.
00:30:47.839 --> 00:30:54.640
Most people report the opposite effect that exercise kind of makes them feel like they have more energy.
00:30:54.960 --> 00:30:59.839
I personally always feel this before I start my exercise session in the morning.
00:31:00.000 --> 00:31:04.720
I always feel kind of a little bit sleepy and like I don't really want to be doing this.
00:31:04.880 --> 00:31:14.799
But after my exercise session, I feel ready to go and like that my day is started, which is one reason why I make it a priority because it's kind of like my morning cup of coffee.
00:31:15.039 --> 00:31:22.160
Um, and then participating in physical activity also helps to regulate your sleep cycle.
00:31:22.400 --> 00:31:26.480
Um, there are kind of some per some kind of things to think about.
00:31:26.559 --> 00:31:32.720
If you do super high intensity exercise right before bed, it could negatively impact your sleep.
00:31:32.960 --> 00:31:35.200
So you kind of want to be mindful of that.
00:31:35.519 --> 00:31:42.319
But overall, individuals who are physically active have more balanced sleep schedules.
00:31:42.400 --> 00:32:00.240
And we know, again, in the case of PKU, where we have the most research overall of any inborn era of metabolism, that individuals with PKU do experience sleep disturbances even when they're taking their medical food properly.
00:32:00.400 --> 00:32:08.319
Um, it's kind of thought that this is related to the neurotransmitter kind of production related to tyrosine.
00:32:08.400 --> 00:32:14.880
And we know that medical foods are supplemented with tyrosine, but there's something going on that's not fully understood.
00:32:15.119 --> 00:32:28.640
Um, so again, exercise could be a way to kind of help regulate the sleep neurotransmitters that may that individuals with inborn errors or metabolism may not be building optimally.
00:32:28.960 --> 00:32:29.519
Got it.
00:32:29.759 --> 00:32:31.599
Definitely makes sense.
00:32:32.079 --> 00:32:40.319
And kind of going further, other benefits of physical activity that have been reported in the general population is stress management.
00:32:40.559 --> 00:32:49.759
Um, so people that exercise um tend to have, again, like just improved responses to stressors in life.
00:32:49.920 --> 00:32:55.680
That means that again, we kind of think of stressors in different ways.
00:32:55.839 --> 00:33:00.000
Um, but in our daily life, we're experiencing stress all the time.
00:33:00.160 --> 00:33:06.559
It could be traffic, it could be a meeting, it could be a school assignment, it could be cooking a meal.
00:33:06.880 --> 00:33:14.880
Um, there's things that are happening all day that kind of put our body into this fight or flight mode.
00:33:15.119 --> 00:33:21.920
And so exercising helps our bodies regulate um how we respond to those stresses.
00:33:22.160 --> 00:33:43.200
So rather than kind of going into this flight mode where our stress hormones shoot through the roof, individuals that exercise are able to regulate their responses better so that they're not kind of always in this super stressed to super not stressed, to super stressed um environment.
00:33:43.440 --> 00:33:48.880
Um, and then exercise can improve mood and concentration and attention.
00:33:49.119 --> 00:34:08.559
Um, so individuals, again, in the general population that have kind of attention disorders like ADD or ADHD, exercise has been shown to be a really beneficial tool to help with those symptoms.
00:34:08.800 --> 00:34:21.119
We know that individuals with, again, PKU have a higher likelihood of having an attention-related disorder or a mood-related disorder.
00:34:21.280 --> 00:34:30.000
And so, again, just as in the general population, exercise can be beneficial in helping to combat some of these symptoms.
00:34:30.239 --> 00:34:34.320
And then my favorite thing about exercise is that it is fun and social.
00:34:34.480 --> 00:34:34.800
Yeah.
00:34:34.960 --> 00:34:46.639
Um a really, really great way for individuals um to meet other people and to smile and to connect.
00:34:46.800 --> 00:34:57.840
Um, and one of my favorite things about fitness is for the inborn era of metabolism, is that it's a way to connect with individuals that do not revolve around food.
00:34:58.159 --> 00:34:58.800
Awesome.
00:34:58.960 --> 00:34:59.920
Well, I love that.
00:35:00.000 --> 00:35:01.760
And you hit so many points.
00:35:02.000 --> 00:35:11.280
Whenever you mentioned that being active could go beyond just the physical health, but the social related and the mental health-related aspects of life as well.
00:35:11.599 --> 00:35:28.559
Have you witnessed patients who engage regular in physical activity um being more successful and feeling better and being able to be more in control of their health and maybe phenylanoline levels to managing while managing their condition?
00:35:29.119 --> 00:35:30.239
Yeah, 100%.
00:35:30.880 --> 00:35:44.480
Um I find that individual that individuals in my patients that make fitness a priority overall are in better metabolic control.
00:35:44.719 --> 00:35:45.039
Yeah.
00:35:45.280 --> 00:35:50.800
Um, so they, I mean, I have several individuals.
00:35:50.880 --> 00:36:05.119
I mean, I I I don't in my patient population, I don't make fitness a um I think obviously it's an option for everyone, but I really encourage our patients to be active, especially starting at a super young age.
00:36:05.280 --> 00:36:15.119
So I would say that the majority of my patient population participates in physical activity um in some in some form.
00:36:15.760 --> 00:36:24.719
Um, and so like a few of my patients come to mind that really make fitness a priority.
00:36:24.880 --> 00:36:29.199
Um, at these individuals, again, fitness is a priority and so is their health.
00:36:29.679 --> 00:36:39.519
So they really make control, essentially making sure that their fee levels are appropriately managed also a priority.
00:36:39.679 --> 00:36:48.159
And this goes into they know when their fee levels are high, they're not going to have the motivation to participate in their physical fitness.
00:36:48.320 --> 00:36:48.559
Yeah.
00:36:48.800 --> 00:36:51.199
Um, and so it kind of is this cycle.
00:36:51.360 --> 00:36:55.760
So being physically active helps control their fee levels.
00:36:56.000 --> 00:37:03.679
Um, one because physical fitness, um, while again, there's no literature on this because there's not a lot of studies.
00:37:04.000 --> 00:37:21.119
Um when individuals are physically active and fee is in the blood and then being reincorporated into the muscles, there is a trend that we have seen that individuals may be able to tolerate more fee from food.
00:37:21.199 --> 00:37:24.320
So they're able to have an increased protein tolerance.
00:37:24.719 --> 00:37:29.360
Um, so for some of our patients, that's a really big motivator.
00:37:29.519 --> 00:37:35.119
Um, but being fiscally active helps to keep them on like their schedule and their routine.
00:37:35.360 --> 00:37:38.320
Um, that helps them also control their fee levels.
00:37:38.400 --> 00:37:47.760
So like they know, oh, I just did a workout, I'm gonna take some of my like with one of my portions of medical food right after I exercise.
00:37:47.920 --> 00:37:59.280
So it's not like they're struggling to get that is if their recommendation is to take four doses throughout the day, one of their doses is already taken care of from their exercise session.
00:37:59.519 --> 00:38:00.159
Got it.
00:38:00.320 --> 00:38:02.239
Yeah, definitely makes sense.
00:38:02.559 --> 00:38:07.119
The nutrition and activity are so interconnected with our health.
00:38:07.280 --> 00:38:14.400
How does being physically active change nutritional requirements for someone with a metabolic condition, such as PKU?
00:38:14.559 --> 00:38:19.119
And are there any sports supplements or products you think that could be helpful?
00:38:20.079 --> 00:38:29.199
So we just kind of touched on this um as far as as the interconnection between nutrition and activity.
00:38:29.840 --> 00:38:36.800
Um, but so activity in general will increase energy and protein needs.
00:38:37.039 --> 00:39:08.880
Um and so if we're speaking of PKU uh specifically, um, there is a chance, again, like there is no literature on this, but we have seen it, I've seen it in my patient population, pretty much in everyone that starts being active, um, that uh activity tends to increase natural protein tolerance or the amount of fee that an individual may be able to tolerate.
00:39:09.440 --> 00:39:13.280
The amount is very individual on the person.
00:39:14.320 --> 00:39:18.480
Um, but overall that's a trend that we have seen.
00:39:18.719 --> 00:39:30.000
Um, and the other really important thing with increasing fee tolerance and also the increased energy and protein needs related to activity is that timing of nutrition.
00:39:30.320 --> 00:39:40.480
I have seen patients not experience the benefits of physical activity because they don't properly nourish their body following the activity.
00:39:40.880 --> 00:39:52.960
Um, so I've actually seen patients' fee levels increase from physical activity because they are not taking the steps to properly nourish their body after an activity session.
00:39:53.199 --> 00:40:09.280
So essentially what's happening is that the fee that was released from their muscles during the exercise session kind of stays in their blood because there's not enough nutrients for their for their muscles to kind of suck that fee back in.
00:40:09.599 --> 00:40:24.320
Um in addition, there's also issues with that because not only is our our fee levels higher, it also puts your muscles at an increased risk for injury because they're not able to repair in the way that they want to.
00:40:25.440 --> 00:40:44.480
Um so essentially, as far as sport supplements, I always tell, especially my PKU patients or my amino acidopathy patients, that the best sports supplement for them is their medical food and for them to take it after an exercise session.
00:40:44.639 --> 00:40:50.320
Um, for some individuals, I also recommend in addition to take it, making sure that they take a dose after an exercise session.
00:40:50.400 --> 00:40:59.599
I also recommend a dose shortly before bed because while an individual is sleeping, that's where most muscle repair happens.
00:40:59.840 --> 00:41:12.480
So it's super important that the body has the amino acids it needs while you're sleeping to help repair muscles, again, depending on what activity they're doing and how active they are.
00:41:12.719 --> 00:41:17.519
Um so again, medical food is the best sport supplement.
00:41:17.840 --> 00:41:28.719
There are lots and lots of sport supplements um out there that many in the general population support.
00:41:29.199 --> 00:41:35.519
Um, the reality is that most sport supplements don't have a ton of strong evidence.
00:41:35.679 --> 00:41:42.000
There are a handful that there is strong evidence for their use in certain situations.
00:41:42.639 --> 00:41:58.400
Um I have always been of the mindset that if an individual wants to take a sport supplement, and it's not a dangerous one, there are also sport supplements that are out there that are very dangerous.
00:41:58.719 --> 00:42:10.079
They can also, if you are a competitive athlete, um some of these sport supplements are banned by most um professional organizations that kind of govern that sport.
00:42:10.239 --> 00:42:14.639
So you have to be mindful of that if you want to be kind of a competitive athlete.
00:42:14.960 --> 00:42:25.599
Um but if you, if there is interest in taking a sport supplement, again, some can be very beneficial to specific sport and fitness goals.
00:42:25.760 --> 00:42:31.599
Um, it's really important that you're purchasing that sport supplement from a trusted manufacturer.
00:42:31.760 --> 00:42:37.119
Sports supplements do not have any regulation um in the United States.
00:42:37.199 --> 00:42:42.559
So pretty much anyone can say the a sport supplement has something in it if it doesn't.
00:42:42.800 --> 00:42:50.159
Um, so I always recommend looking for a trusted manufacturer that um uses third-party testing.
00:42:50.320 --> 00:42:54.400
So that means that there's an outside agency that is testing their product.
00:42:54.719 --> 00:42:54.880
Okay.
00:42:55.360 --> 00:43:10.559
Um, and there are there are certain labels on sports supplements that you can kind of look for um that kind of let you know that that company kind of has these production standards.
00:43:10.800 --> 00:43:21.199
Um, I also urge you to talk to your medical team about any sport supplement that you're interested in taking to just to ensure that it is safe for you.
00:43:22.159 --> 00:43:24.559
Um, and also so that they're aware.
00:43:24.719 --> 00:43:32.960
Um, so that if anything does kind of change with your biochemical levels, um they know.
00:43:33.519 --> 00:43:43.360
Um and again, there are sports supplements that individuals with inborn erosar metabolism can take.
00:43:43.440 --> 00:43:47.280
But again, talk to your medical team and make sure that it is safe for you.
00:43:47.840 --> 00:43:59.760
And there is still a lot that we don't know when it comes to physical activity and metabolic conditions from ideas like increased fee level tolerances and greater muscle mass, like you've mentioned, to optimize.
00:44:00.480 --> 00:44:02.719
Medical food timing for muscle recovery.
00:44:02.960 --> 00:44:08.159
What new research areas or developments are you excited for right now and why?
00:44:09.599 --> 00:44:19.599
So there are so many exciting things happening in the fitness world, in the longevity world, um, for the general population.
00:44:19.760 --> 00:44:27.280
And I do, and I think that there is some research happening in the inborn era of metabolism population, which is so, so, so exciting.
00:44:27.679 --> 00:44:38.559
I think overall, some of the what we're kind of learning in the general population can be applied to individuals with inborn errors of metabolism.
00:44:38.719 --> 00:44:58.320
Um, for example, like the research on strength training and longevity, there's no part of my mind that thinks that individuals with inborn error metabolism would not benefit from strength training like the general pop, like the general population has shown to.
00:44:58.480 --> 00:45:18.079
Um but overall, what I am most excited about for regardless of the research and kind of what is out there, what I am most excited for for people with inborn errors of metabolism is just to experience physical activity as a whole and start using it as a way of life and a therapy.
00:45:18.719 --> 00:45:26.320
Um I again think that for so many years, individuals with inborn errors of metabolism were told what they can't do.
00:45:26.400 --> 00:45:26.719
Yeah.
00:45:26.960 --> 00:45:30.320
And I think we're moving into an era of what you can do.
00:45:31.280 --> 00:45:45.119
And I'm really excited for every individual, regardless of diagnosis, to be able to be active and be proud of what their bodies are able to accomplish.
00:45:45.440 --> 00:45:50.639
And it's also something that we have the ability to control, which is awesome as well.
00:45:52.079 --> 00:46:00.000
Yes, it is again like you get to, regardless of a diagnosis, you get to decide to be active every day.
00:46:00.239 --> 00:46:00.639
Yes.
00:46:00.880 --> 00:46:11.360
We love to celebrate community question success stories on metabolically speaking, highlighting real conditions, real stories, and shedding light on to living a life without limits.
00:46:11.599 --> 00:46:14.079
Do you have a favorite story you can leave us with?
00:46:14.239 --> 00:46:21.840
For example, a patient who discovered confidence or control in their own body rather than being defined by their diagnosis?
00:46:22.639 --> 00:46:25.840
So I all of my patients are special.
00:46:26.079 --> 00:46:33.280
Um, but I do have um a patient that holds a super special place in my heart for so many reasons.
00:46:33.519 --> 00:46:42.960
Um, this was a patient that inspired our clinic to go from the traditional PKU diet to the simplified PKU diet.
00:46:43.599 --> 00:46:52.320
Um, and so a background on this patient, he was one of my first, first patients that I saw in the metabolic space when I saw him.
00:46:52.400 --> 00:46:54.719
He was not even in elementary school yet.
00:46:54.880 --> 00:47:00.400
Um, and I remember his mom brought me his diet records and his fee levels.
00:47:00.480 --> 00:47:02.000
This is an individual with PKU.
00:47:02.079 --> 00:47:07.760
His fee levels were perfectly in control, always like between 200 and 250.
00:47:08.159 --> 00:47:09.920
Um, perfectly in control.
00:47:10.079 --> 00:47:12.960
And the mom, this was the first time that we had met.
00:47:13.039 --> 00:47:32.000
I had spoken to the mom on the phone a few times, but the first visit brought me his diet records, and his diet was pretty much Skittles, uh, um, lemon pudding, and like Twinkies.
00:47:32.639 --> 00:47:40.480
And I was a like I was very confused as a kind of a new metabolic dietitian.
00:47:40.880 --> 00:47:44.960
And I was like, well, why doesn't he eat any fruits and vegetables?
00:47:45.039 --> 00:47:50.639
And at this point, I had kind of read about the simplified diet, but like our clinic had had not been using it.
00:47:50.880 --> 00:48:03.119
Um, and the mom was mortified and said, Well, he can have skittles which are free, or I could count how many blueberries he eats, and I would rather like it's easier for him to have Skittles.
00:48:03.280 --> 00:48:09.199
And I kind of was, I was like, but he can't just like this this is crazy.
00:48:09.519 --> 00:48:26.320
Um and and so I I was I was so I I was like, I I don't know if I could tell people that it's okay as a dietitian to like just eat Skittles and Twickies all day, um, if their fee levels are okay.
00:48:26.480 --> 00:48:37.920
And so I learned about the simplified diet and I brought it to our team, and he was the first patient that we use the simplified diet on.
00:48:38.400 --> 00:48:48.320
And while he is he still eats a lot of lemon pudding, um he does now eat lots of fruits and vegetables.
00:48:48.480 --> 00:48:52.960
It did take a while for him to be okay with them, but he eats lots of fruits and vegetables.
00:48:53.039 --> 00:48:54.800
So that's kind of the first part of the story.
00:48:55.039 --> 00:49:04.159
But about two years after we transitioned him to the simplified diet, he came to clinic with his mom and I asked him how school was going.
00:49:04.239 --> 00:49:06.880
And he's always been an excellent, excellent student.
00:49:07.119 --> 00:49:10.960
And he said, I really want to play baseball.
00:49:11.440 --> 00:49:14.400
And the and I said, Well, why aren't you playing baseball?
00:49:14.559 --> 00:49:21.599
And his mom said, He can't play baseball because it's gonna make his fee levels, it's gonna cause his fee levels to increase.
00:49:21.679 --> 00:49:23.920
And I said, I don't think that that's true.
00:49:24.239 --> 00:49:27.360
But so, but it's important that he's physically active.
00:49:27.440 --> 00:49:30.000
And if he wants to play baseball, I think he can play baseball.
00:49:30.079 --> 00:49:35.519
And I don't think his fee levels are gonna change if as long as he kind of is properly nourished.
00:49:35.760 --> 00:49:42.320
And so his mom said, Okay, we'll put him in baseball and we'll check his fee levels every week to make sure they're not increasing.
00:49:42.480 --> 00:49:44.559
And I said, Okay, deal.
00:49:44.800 --> 00:49:47.199
She was she made me do the same thing with a simplified diet.
00:49:47.280 --> 00:49:49.119
So we checked his fee levels a lot.
00:49:49.199 --> 00:49:51.440
Thankfully, he's okay with finger sticks.
00:49:51.920 --> 00:49:59.840
Um, and so he started baseball and his fee levels actually kind of went down.
00:50:00.480 --> 00:50:06.960
Um, and he again, this was now, this has been over a decade.
00:50:07.119 --> 00:50:16.800
Um, but he is now in high school and being recruited for Division I and Minor League Baseball teams.
00:50:17.360 --> 00:50:19.760
So he's an all-star baseball player.
00:50:19.920 --> 00:50:25.679
Um, his fee levels have essentially always stayed 200 to 250.
00:50:26.000 --> 00:50:32.719
Um, he is a strong kind of proponent for his PKU management.
00:50:33.039 --> 00:50:35.760
He travels a ton for baseball.
00:50:35.920 --> 00:50:41.840
He's always in um tournaments and these like special leagues.
00:50:41.920 --> 00:50:58.239
And I always ask him when you're playing on like new teams and with like different people, and you guys go to team meals and they ask why you're only eating a salad or only eating French fries, um, what do you tell them?
00:50:58.480 --> 00:51:01.039
And he tells them that he has PKU.
00:51:01.119 --> 00:51:03.840
And if they and I say, do they ever ask any more questions?
00:51:03.920 --> 00:51:05.360
And he's like, When they do, I explain it.
00:51:05.599 --> 00:51:07.440
When they don't, it's there.
00:51:07.679 --> 00:51:12.719
Um, and so he's he's really confident with his PKU.
00:51:13.039 --> 00:51:24.800
Um, and he really understands that controlling his fee levels has helped him get to the point where he is and to be as successful with baseball as he is.
00:51:24.960 --> 00:51:30.719
Um, and I've spoken to that I I've worked with his strength and conditioning coaches.
00:51:30.960 --> 00:51:38.239
Um, and they've all said that his PKU is not a limitation to how strong he has been able to become.
00:51:38.480 --> 00:51:39.760
That's amazing.
00:51:40.079 --> 00:51:41.440
I love that story.
00:51:41.679 --> 00:51:43.440
Thank you so much for sharing that.
00:51:43.599 --> 00:51:46.400
And hopefully he will listen to this episode.
00:51:47.039 --> 00:51:48.400
But thank you, Stephanie.
00:51:48.480 --> 00:51:51.840
You've shared his mom did tell me that I could share everything about him.
00:51:52.079 --> 00:51:52.400
Okay.
00:51:52.800 --> 00:51:54.239
That's crazy here.
00:51:54.639 --> 00:51:56.239
Um, but thank you so much.
00:51:56.400 --> 00:52:04.320
You've shared some truly inspiring stories, and I'm sure we're all feeling ready to get our shoes on, get active, and take these stories to heart.
00:52:04.559 --> 00:52:11.760
For me, my favorite way to get my heart rate up is workout classes such as CrossFit, F-45, and cycling classes.
00:52:11.920 --> 00:52:14.880
But we'd love to hear from our audience, you guys.
00:52:15.039 --> 00:52:22.559
So leave us a comment on your favorite podcast platform or on social media and let us know the way you love to get moving.
00:52:22.800 --> 00:52:30.239
Before we wrap up today's episode, it's time for our community conversations where we hear directly from you, our listeners.
00:52:30.480 --> 00:52:38.800
This segment will ask questions you've submitted, giving us a chance to explore our guest story and new and personal perspectives.
00:52:39.280 --> 00:52:41.440
All right, Stephanie, are you ready?
00:52:42.000 --> 00:52:42.639
I'm ready.
00:52:42.880 --> 00:52:43.280
All right.
00:52:43.440 --> 00:52:50.960
So, Sarah Chamberlain, who's the moderator of the group for parents of PKUers, asked a question on behalf of the group.
00:52:51.119 --> 00:52:59.039
She said, How can individuals with metabolic conditions best track their impact of exercise of their health?
00:52:59.360 --> 00:53:01.840
What should we be looking for?
00:53:02.480 --> 00:53:04.239
So I love this question.
00:53:04.400 --> 00:53:08.559
And there are so many ways to monitor the benefits of fitness on health.
00:53:08.639 --> 00:53:16.159
And I don't think that it is that it this goes for the general population and for those with inborn erosometabolism.
00:53:16.480 --> 00:53:24.239
But for anyone, some things that you can just monitor off the bat are your mood, sleep, and energy levels.
00:53:24.480 --> 00:53:30.320
Um again, just thinking about how you feel following an exercise session.
00:53:30.559 --> 00:53:38.400
Um, other things that you can kind of look for um is if as you're exercising, how you feel.
00:53:38.559 --> 00:53:39.840
Do you feel stronger?
00:53:40.000 --> 00:53:41.599
Do you feel faster?
00:53:41.840 --> 00:53:46.880
Um, are you able to lift heavier weights?
00:53:47.039 --> 00:53:49.760
Um, Meredith, you mentioned that you did CrossFit.
00:53:49.840 --> 00:53:53.840
So it could be how you're progressing through the CrossFit routines.
00:53:54.159 --> 00:54:02.159
Um, so there's again, these are things that regardless of diagnosis, that you can that any individual can monitor.
00:54:02.320 --> 00:54:10.239
If you have decided that running is an exercise that you like, it could be how far you're going in a certain point of time.
00:54:10.719 --> 00:54:22.079
Um and it could also be, again, another thing that can be monitored is looking at biometric parameters, looking at blood pressure or body composition and lab work.
00:54:22.159 --> 00:54:30.880
So in the PKU community, it could be monitoring those fee levels to see how your fee tolerance is responding to exercise.
00:54:31.119 --> 00:54:39.760
Um, there are also biometric trackers, um, like I wear an aura ring, there's the whoop, there's Apple Watches.
00:54:40.239 --> 00:54:49.199
Um these kind of biometric trackers have become kind of very, very accessible um for the general population.
00:54:49.360 --> 00:54:57.039
And again, there's no reason that someone with an inborn diag air, an inborn air metabolism cannot use one of these devices.
00:54:57.280 --> 00:55:03.199
Most of them also have kind of health, like you enter your health background and you can even enter your diagnosis.
00:55:03.360 --> 00:55:14.559
And some of them are able to um kind of take into account a metabolic diagnosis in what they're in how they're interpreting data.
00:55:15.039 --> 00:55:24.400
Um so kind of tracking the benefits of fitness again can just be as simple as how you feel, but you can also get into the data.
00:55:24.559 --> 00:55:32.000
Like I know based off of my aura data that I sleep better when I do certain types of activity.
00:55:32.480 --> 00:55:33.440
Yeah, that's great.
00:55:33.519 --> 00:55:35.119
And I have an aura ring on as well.
00:55:35.199 --> 00:55:40.800
And I love being able to connect it with my clinic, just sharing the data with them as well.
00:55:41.039 --> 00:55:48.320
Because being able to send them a screenshot of what I see in the app is also helpful to see, comparing that to fee levels and stuff like that.
00:55:48.559 --> 00:55:50.000
So that is great.
00:55:50.239 --> 00:55:59.360
The next questions we have come from an individual who'd like to remain anonymous, but it's kind of a two-question um related topic.
00:55:59.519 --> 00:56:04.719
So this individual said, How can I get a child under 10 years old to try new foods?
00:56:04.960 --> 00:56:14.320
My PKU child, who is now seven, has been like this forever and will not try new things, no matter what we try, no matter what we say, no matter what we do.
00:56:14.480 --> 00:56:18.000
So he's stuck on higher protein or empty calorie snacks.
00:56:18.239 --> 00:56:40.480
Sounds like the patient who liked Skittles, but so one thing that I recommend, and um the this has worked with my patient population is to get children involved in the snack, in their in their food choices and what is available to them.
00:56:40.639 --> 00:56:48.480
Um so something that has really worked with a lot of my patients is to get kids involved with cooking their foods.
00:56:48.719 --> 00:56:50.719
So in the preparation.
00:56:50.800 --> 00:56:56.960
Um, and when they see kind of different foods being prepared, they may be more inclined to try them.
00:56:57.199 --> 00:57:12.239
Um, also for being a picky or selective eater, um, we know that individuals with PKU or inborn errors of metabolism may be more likely to kind of be a selective eater.
00:57:12.400 --> 00:57:15.280
Um, but it is common in the general population.
00:57:15.519 --> 00:57:22.480
And what has been shown to be effective is kind of repeated exposures to new food.
00:57:22.719 --> 00:57:36.480
Um, so ensuring that you don't just show a child or an individual a food once that there's kind of that it's repeatedly there on a plate and eventually they'll be interested.
00:57:36.719 --> 00:57:54.480
Um and if again, they're a child or an individual is stuck on kind of higher protein foods that may not be serving them a really it may not be easy, but we've recommended just total elimination from that food in the house.
00:57:54.639 --> 00:57:59.039
And eventually an individual may be likely to try other foods.
00:57:59.280 --> 00:58:01.280
Um, again, it's not easy.
00:58:01.360 --> 00:58:04.320
We don't want any child to feel hungry.
00:58:04.639 --> 00:58:17.280
Um, but these are kind of tools that have been shown to be effective in the general population to get people that again may be more selective to be interested in new foods.
00:58:17.679 --> 00:58:18.320
Got it.
00:58:18.480 --> 00:58:27.280
How can you focus on food choices and restrictions that come naturally with PKU while making sure there's a positive relationship with food?
00:58:28.400 --> 00:58:33.760
So we I am a big supporter of the simplified diet.
00:58:33.920 --> 00:58:53.519
I think um that is the the no main, the the nomenclature simplified diet refers to when individuals with PKU do not have to count or monitor their intake of certain fruits and vegetables and other kind of specially modified foods.
00:58:53.760 --> 00:59:00.800
Um some clinics call these free foods, some clinics call these green, like green light foods.
00:59:00.960 --> 00:59:04.079
Um, so every clinic has their own terminology.
00:59:04.480 --> 00:59:10.239
Um some clinics call them non-counted foods.
00:59:10.480 --> 00:59:17.760
Um and some clinics don't call the simplified diet the simplified diet, some call it the European method.
00:59:17.840 --> 00:59:42.000
Um, but essentially the the the point is is that there's a large, a very large selection of foods that individuals with PKU or other inborn eras and metabolism may not have to think about consuming, um, in the sense that they don't have to think about counting how much protein they're getting from that.
00:59:42.719 --> 00:59:54.320
Um, and so we have found that by using the simplified diet, and now our clinic has been using it thanks to the individual that I spoke about, um our clinic has been using it for over a decade.
00:59:54.639 --> 01:00:10.079
Um, and with the use of the simplified diet, especially when we're introducing foods to babies, we are seeing that the majority of our PKU patients are significantly less selective than they previously were.
01:00:10.320 --> 01:00:10.639
Okay.
01:00:10.880 --> 01:00:18.960
Um, most of our patients eat a really wide variety of, in our clinic, we call them free foods.
01:00:19.119 --> 01:00:19.440
Yeah.
01:00:19.679 --> 01:00:37.679
Um, but of the free foods, um, because these are foods that their family just turned to um when they were younger because it was less stressful overall um for them to be again, essentially for them to be given a bowl of blueberries.
01:00:38.079 --> 01:00:45.760
Um and the family never had to think like, okay, well, I have to count how many blueberries are left in the bowl and how many were there originally.
01:00:45.840 --> 01:00:48.239
They can the child can just eat the blueberries.
01:00:48.400 --> 01:00:54.800
This has also allowed our families to kind of establish what we call like a PKU-friendly snack drawer.
01:00:54.880 --> 01:00:55.119
Yeah.
01:00:55.280 --> 01:01:08.239
Um, so that in most of our um families' homes, they have a drawer in the refrigerator where the individual with PKU knows that they can go into that drawer and eat whatever they want.
01:01:08.400 --> 01:01:11.360
And as a child, they don't have to go tell their mom.
01:01:11.440 --> 01:01:11.760
Yeah.
01:01:11.920 --> 01:01:20.400
That they can go and take whatever foods that family puts in there that are, again, our clinic we call them free.
01:01:20.559 --> 01:01:31.760
Um, but the child can go and if they're feeling hungry, they can go and grab a snack and they don't feel like they have to go tell their parent everything that they put in their mouth.
01:01:31.920 --> 01:01:41.280
And having that freedom, even as a four-year-old, allows for essentially a more positive relationship with food.
01:01:41.599 --> 01:01:42.320
Sounds great.
01:01:42.480 --> 01:01:51.840
And that definitely has helped me in the past with even today being on a simplified diet, my free food favorite is a salad.
01:01:52.000 --> 01:01:53.280
So Yep.
01:01:53.360 --> 01:01:57.199
And that's and that's what the the individual said.
01:01:57.360 --> 01:02:08.400
I I know I can go to any restaurant and I can order a romaine salad with no croutons and no cheese, and everything else they put on it, I can eat.
01:02:08.639 --> 01:02:10.239
Yeah, extra tomatoes.
01:02:10.400 --> 01:02:11.039
Yep.
01:02:11.679 --> 01:02:12.320
Yes.
01:02:12.639 --> 01:02:15.280
Well, that is all for the community conversations.
01:02:15.440 --> 01:02:16.800
Thank you so much, Stephanie.
01:02:16.960 --> 01:02:21.119
And thank you to our audience as we received so many thoughtful questions.
01:02:21.360 --> 01:02:29.760
If you want to include a question in future episodes, keep an eye out on my social media posts as I'll regularly ask for input from our community.
01:02:30.000 --> 01:02:38.719
As we wrap up today's show, I'd like to remind everyone that you can find helpful resources as well as more information from Stephanie in the show notes below.
01:02:38.960 --> 01:02:43.360
Thank you for listening and thank you so much, Stephanie, and we'll see you guys next time.
01:02:43.679 --> 01:02:45.280
Thank you so much, Meredith.
01:02:46.480 --> 01:02:49.519
That's it for today's episode of Metabolically Speaking.
01:02:49.679 --> 01:02:56.880
Rare conditions, real stories, and a reminder that life with a metabolic condition is about living, not about limits.
01:02:57.119 --> 01:03:01.599
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01:03:04.320 --> 01:03:06.639
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