Most people know by now about ROC’s Journey of 1000 Miles. For those not in the know, ROC is going to walk from Longwood, Florida, to Fenton, Missouri, in October 2022. The distance between the two cities is just barely over 1000 miles so that is why we call this the Journey of 1000 Miles. The purpose of the Journey is to raise awareness for those with Epilepsy and for Veterans with battle induced seizure disorders.
We have been planning this Journey for a while now. Sometimes it feels like we have made great strides and sometimes it feels like we are getting no where at all. Why you may ask? Well, let me tell you….
First, there is ROC’s health to consider. Heat is one of ROC’s primary seizure triggers. Being the summer in Florida, it is not easy for ROC to train. The good news is, that he has been able to get a treadmill to put under his desk so that he can walk all day long. So far, he is averaging about 30,000 steps a day on the treadmill. Being that in the actual Journey he will need to average 40 miles a day, ROC steadily builds his daily steps on the treadmill with a goal of over 60,000 a day.
Then there is the issue of seizures. While his seizures are still everchanging, I personally think ROC’s seizures have been rather minimal given how much training he is doing. (He is even walking with a weight pack on his back!) However, medications are still causing sleep problems. We also recently learned that he needs to set an alarm on the weekend so that he wakes up to take his medications at the same time as during the week and then he can go back to sleep or else risk myoclonic jerks. Similarly, when ROC was scheduled to run/walk a 5K on the 4th of July, he never made it out of the front door because he was up and out of bed earlier than usual, which also resulted in myoclonic jerks. I guess it just goes to show, ROC cannot get out of routine. This means that during his Journey, he will need to keep his watch on Eastern time and keep his same sleep and medication times as he does at home.
The second aspect to the ups and downs we have had comes to financing. We are doing what we can to raise the funds to allow us to be able to rent an RV, make sure ROC has the proper hydration, nutrition, and necessities that he needs. We have had some generous personal donations as well as corporate in-kind donations so far. Even as I write this, we received an in-kind corporate donation from Bombas by donating a 12-pack of socks!
We are also busy planning our silent auction for August 4th. For anyone in the Orlando/Seminole County areas, we urge your help in spreading the word about the auction and we hope that you will attend. We have some amazing donations and found an incredible venue at cork&olive in Lake Mary, Florida. We still have tickets available and hope for this to be a sell out event. We are more than excited about it!
The whole experience has been, and is expected to be, an adventure as we lead up to the Journey and the Journey itself. I have been so proud of ROC with all of the hard work he has been putting in, even on days that start with seizures. ROC is living up to the organization’s #neverquit philosophy. It’s no wonder we adopted this motto from the beginning.