米国マルファン症候群患者団体The Marfan Foundationからの情報を中心に、マルファン症候群や関連疾患についての海外情報を翻訳して発信します。

運動に関するオンライン座談会 ~パネリスト①(28歳男性 マルファン症候群)のお話~

Personal Perspectives Panel: Physical Activity & Exercise




Yeah, so I just wanted to kind of start the discussion off with a little bit about like your attitude about exercise and fearing, figuring out what's right for you because I think what, you know, the doctors told us tonight, they give their best recommendations and, you know, people have to judge really and I think a lot of it is based on, a lot of it's based on, you know, the physical things they talked about tonight but also, you know, the mental part of it.



So maybe Alan, if you can start us off as being like, you know, a D1 athlete and having to change your, change how you approach that. Obviously sports was a big part of your life, you know, in your entire life, so what was the mental part of it and having the acceptance and what kind of changes did you make?



Yeah like, like Dr. Braverman said every person is different. That's, that's the biggest thing so, you know, what one person can handle, other people can't. 



The mental aspect of it, I was told basically to stop that same day that I was diagnosed. I apologize didn't get enough back story. I have Marfan syndrome. I don't think I said that but my father passed away when I was one. He had an aortic dissection and so that sparked them to test me after a practice where I was short of breath and kind of, kind of fell out a little bit after practice and so that's what caused me to get checked. Thank goodness, I did but that day they told me to stop, you know, basically doing everything exercise-wise with football because it was like they explained very high intensity.



You know, in the summers we trained with Navy Seals. They would come, do the whole. You roll with a log, you know, you're rolling through water. It was, it was intense for sure. 



So I went from doing, you know, the highest intensity workouts possible to more cardio, you know, less intensity, which saved my life honestly. 



So when, they when they pick an aortic valve it was very, very large. There was no, there was no making it smaller so I just had to kind of tolerate it and what, what, what I had to do was basically just switch my mindset from the intense, "Hey, let's get this done. I got a rep, you know, I got a set of eight. I got three, three sets and I gotta bang it out real quick." Right? I'm running to the next exercise. 



I had to learn, you know, to take my time, do more, do longer workouts, I would say, as opposed to the high intensity short workouts and so obviously I've always ran so that was something I could kind of go to, to mentally decompress. If I was ever, you know, feeling down about not being able to go out there and squat 400 pounds and bench press and, you know, could do all those things so running definitely kind of got my mental state back to where it needed to be. 



But yeah, there was a major change in my workout plan but yeah, there was, there was not a lot of research out there on what someone with Marfan syndrome should do. There's no workout plans for people with heart conditions out there. Even today I looked, I think, I looked like a couple weeks ago for one still couldn't find one, so every person is going to be different. 



The best thing you can do is reach out to professionals. I have a best friend that's a trainer and he gave me a pretty good, pretty good workout plan but you're right, yeah, you gotta, you gotta sit, you know, sit and look in the mirror and say, "look, we gotta make a change but it's for the better." It's, it's in the long run. This is gonna keep me alive. 



But I'm, I'm fired up because every day I get to find a new, new hit workout that I can do or new run or, you know, there's, there's hot yoga, there's all this stuff out there. Nowadays that, that are good for me and so the only thing different is just rather than taking 30 seconds between, between a set you just take a minute, you know, that's what you got to do and, you know, yourself better than anybody so that was long-winded but I hope that helped out. 



But you're still involved with Mississippi state football so, you know.



Yeah so my job is kind of contradicting to my life now but I coach football and so I'm telling these kids to do these big workouts and a lot of times they'll laugh and tell me to get down there and do it when they know I can't but yeah, it's, it's it's all good because I can kind of stay connected to that intense lifestyle without, you know, it it put me in danger.



The Marfan Foundation did not participate in the translation of these materials and does not in any way endorse them. If you are interested in this topic, please refer to our website, Marfan.org, for materials approved by our Professional Advisory Board.

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