Let’s Get Moving

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“Mom, it’s time to workout!” This was something I never expected to hear from my son. One, because he is a teenager, and two because he was born with an HH. His rare brain tumor has caused seizures, cognitive decline, learning disabilities, and problems with his balance and coordination. However, this cry is something I hear quite often theses days – since we have started working out together at our local Crossfit gym! There has been a great deal in the medical literature lately on the value of exercise for individuals with epilepsy. I have always been an athletic person, but was concerned when it came to encouraging my son. I had concerns that it may provoke a seizure, as well as worried about him hurting himself due to his lack of coordination and struggles with balance. When I asked our medical team – including the physical and occupational therapists..the response was the same. It was best not to push it. However, after a fourth brain surgery to remove CJ’s tumor, CJ quickly gained 20 lbs and was extremely tired and hungry all the time. I was concerned he would continue to put on weight – making any normal activity all the more difficult! We discussed the potential issue of hypothalamic obesity – but I knew in my heart that we needed to find a way to allow CJ to have a hand in his future. This would mean finding an outlet for being physically active. It had to be something that he enjoyed doing, that would help him build his self-esteem, and help him function in his daily environment – no matter what his weight. Our gym – Crossfit Fury, has an excellent trainer, Josh, who is in charge of the Kid’s Classes. His professional training is as a pediatric physical therapist. I spoke to Josh about CJ’s condition and we discussed the pro’s and con’s of CJ joining the kid’s class – he asked all the right neurological questions and was convinced he could modify the functional workouts for CJ.  CJ and Josh worked together weekly for several months. The results have been amazing! CJ has managed to stop gaining weight – but even better, his balance and coordination have greatly improved! However, the biggest difference I notice is in his self-confidence and self-esteem. CJ now describes himself as an athlete – a Crosfitter! Our once sedentary, fearful child has blossomed into a more confident athletic young man. We recently set a new goal to try and walk/jog a 5K event once a month. We have managed to do that every month for the last 3 months! I am not saying Crossfit is the workout for everyone – (although I think it is beneficial for most)! The need to get up and move and eat a healthy diet is! What I am encouraging is for us to try new things when it comes to supporting individuals with HH. The science supports the belief that oxygenating the brain and improving circulation are both beneficial to many with brain disorders. For many individuals with epilepsy, it is also believed that exercise can raise the seizure threshold. However, for all individuals with epilepsy, safety is paramount and should be discussed with your medical team. We have also included yoga and the exercise bike into our routine these days. The key for us has been to take control and get the blood flowing whether it be with a sport, a group activity, or just a walk around the block! We have found that the biggest payoff has been in our son’s self-confidence – he feels he is meeting challenges he thought he could never conquer. In his workouts, he is not afraid to try because of his HH. Taking control of this part of his life is very empowering for him – for so long he has lived in a world that has been all about what he cannot do! I would love to hear what other individuals with HH are doing to get moving and hear what some of your accomplishments have been along the way! Note: If you would like to read more about epilepsy and exercise, please go to www.epilepsy.com and search on epilepsy and exercise.  There are several articles and podcasts by neurologists and other professionals.

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