Having Epilepsy while on the Journey for Epilepsy Awareness

Today is day eight of the Journey of 1000 Miles. The heat is much more than we anticipated when we planned this Journey. So how does this effect Ryan’s walking? Not terrible but not great. As heat is one of Ryan’s seizure triggers, he has had to reduce the amount of miles that he is walking each day.

He has tried to leave earlier so that he can get more miles in but walking on the road in the dark is not a great thought for either of us. Today Ryan left just as it was getting light, around seven o’clock. We are camped on the Suwannee River so it was nice and cool out…in the high 50’s. We had to make our next stop 14 miles from where we are now because even with leaving early, it is supposed to be in the 80’s by 11:00 a.m.

Ryan has also tried to take breaks in the middle of the day so as to not have to walk in the heat. However, that has not been successful because the heat has not been breaking until around 5:00 or so, which does not leave much time to walk before it gets dark. We therefore end up staying where we are.

This past Friday, Ryan was able to push it about 20-25 miles. Most of that unfortunately, was in the heat of the high 80’s. It was therefore not surprising when Ryan woke up on Sunday having myoclonic jerks. He was physically and mentally exhausted. It was a difficult decision (I personally think it was the best decision to make) but Ryan decided to take the day off from walking. For the sake of time, given the low mileage and how far we should have been at this point, we went ahead and drove up to the next campground.

The Suwannee River was a great place to have a rest day. Sitting by the peaceful and shaded river, Ryan treated the blisters on his feet and limited walking as much as possible. He did walk with his Aunt Anne (a nurse on our RV crew) and me to a restaurant only .3 miles from the campground where we had a great #neverquit Team ROC dinner on the river.

Today, Ryan is well rested both physically and mentally. However, going forward, we need to not only look at how far the next campground is but we also need to look at the weather ahead. We are told that the further north we go the cooler it should get but right now there does not seem to be an end to this heat in sight. Once we can get to the cooler weather, Ryan should be able to walk further on a daily basis. Hopefully, he can catch up on time and mileage but the first priority has to be his Epilepsy and to make sure he is not triggering seizures.

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