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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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Journey of 1000 Miles – Already an Adventure

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.

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Family Vacation

We took our first family vacation in seven years this past Memorial Day weekend. It was a beautiful location in the mountains of Boone, North Carolina. We rented a cabin called Troutsong. There was a trout stream just below the cabin. It was so peaceful.

However, this weekend did raise a question that had not occurred to us previously. Does change in elevation trigger seizures? If it does, Ryan seemed to be mostly unaffected. He had a few myoclonic jerks when we first got up the mountain to the cabin and then some more after we drove down the mountain and got to the airport. Yet we were able to drive almost to the top of Grandfather Mountain, which totals 5,946 feet high, without any Epilepsy issues. (I will admit, my fear of heights and being the sole driver did pose a problem with our making it to the top.) We were also able to go into the tight knit space within the mountain at Linville Caverns without any Epilepsy issues. (Although Ryan’s height in those low lying cavern ceilings was another story.)

Most people with Epilepsy will tell you that it is near impossible to make any plans. This is because you can never plan when the Epilepsy will flare. We were incredibly fortunate to have not only made these plans but were also able to go and enjoy our family vacation together.

Since we have been home, we have tried to get back into our usual routine. Another not so easy task. However, we are doing the best we can. We were excited to come home to find the pair of shoes donated by HOKA had arrived. Also we were able to fully set up for donations through the ROC Stop Seizures website in addition to giving sponsors recognition for their support to both ROC Stop Seizures and the Journey of 1000 Miles.

In the end, we are happy we were able to get away and that we were all able to enjoy the vacation with limited Epilepsy interference. Hopefully the next time goes even smoother. Yes, there will be a next time and it won’t be seven years until it happens!

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We Continue On…

As we count down to Ryan’s Journey of 1000 miles in October, we continue to make the preparations. Ryan is working with his doctor to wean down his medications as he loses weight and fine tunes his ketogenic diet. I routinely find Ryan doing mini-workouts during the day so that he can get in shape for both the Journey and his overall health. We also have been trying out camping foods in hopes to find some good ready made, diet appropriate, eat on the run (no pun intended) meals for Ryan.

We are honored and excited to have already received donations. Duration Health donated a medication kit so that Ryan can overcome any emergency medical needs. Hoka is sending Ryan his favorite Hoka shoes, the Clifton 8, which they have donated to help him with his training.

We have also been able to get the help from the City of Longwood, Florida, Ryan’s starting point, in helping to send off Ryan on his Journey. It is our vision to have other cities, counties, and/or states along the route to help greet and support Ryan as he walks through them. In a few months, we will be in the ending city of Fenton, Missouri, to get things ready for Ryan to cross the finish line of his Journey.

There are only four months left until Ryan’s Journey begins on October 1st and still a lot to be done. We continue to research RV options so that Ryan has a place to sleep and live out of when he is not on the road walking/running. We are also researching hotels that are able to help with a place to stay along the way so that Ryan can get a break from the RV every now and then.

While this is such an exciting event for ROC Stop Seizures, as Ryan’s wife and caregiver, I can’t help but to be nervous about Epilepsy flareups. Luckily, Ryan’s neurologist has given him the clearance he needs, which helps ease me. Also seeing Ryan’s dedication to undertake this Journey keeps me going as well, including his continuing on despite minor flare-ups at home. You’ve got this Ryan!

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Update: Ryan and ROC Stop Seizures

It has been almost two years since Ryan’s surgery and implant placement. So much has happened in the past two years! Ryan still has seizures. His seizures are still ever-changing. However, overall, I would have to say they have reduced. He seems to have either myoclonic jerks or tonic clonics but he is not having both between implant adjustments. Also, when he is only having tonic clonic seizures, he is going about two to four months between seizures. While this is amazing, I find myself, as Ryan’s wife and caregiver, waiting for the other shoe to drop and it eventually does.

In the meantime, we have made our dream come true! We have officially turned ROC Stop Seizures into a 501(c)(3) nonprofit entity! We were able to kick-off this great news as a vendor at the Longwood Community Health Fair. Now, we are in the planning stages for various fundraisers so that we can give back, help raise awareness for those with Epilepsy and battle-induced seizures, and aid others in increasing funding, research, and education for Epilepsy.

Our biggest event that we plan to have in for the year 2022, is ROC’s Journey of 1000 Miles, when he will walk from Longwood, Florida to Fenton, Missouri. We will soon being posting and promoting sponsorship opportunities and recognition levels. We look forward to having friends, family, and the public help us to raise awareness for those with Epilepsy and Veterans with Battle Induced Seizures.

With all of the unknowns and the seizures that seem to be never-ending, Ryan and I have spent considerable time preparing for this amazing walk. Not to mention the time and effort Ryan has put in training for it, even when he is having issues with his Epilepsy. His dedication is fuel for both of us and helps distract me from waiting for that other shoe to drop as I have been doing these past few years.

As always, we appreciate the support of everyone. We are now on Facebook, Instagram, and Twitter so please look for us on there and follow us, if you are not already, to get updates on the Journey of 1000 Miles and ROC Stop Seizures, Inc., a non-profit entity.

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Another Glimmer of Hope

For a period of time in 2020, I couldn’t go a day without sitting down to write about ROC and his journey with Epilepsy. Once that time period ended, it was difficult for me to concentrate on keeping up with the blog posts. What changed? Unfortunately, not much…until now.

In March or April of 2020, ROC was supposed to have surgery to have an RNS (Responsive Neurostimulation) device implanted in hopes to stop his seizures. Then the pandemic started so the surgery was postponed. Then out of the blue, in June 2020, ROC got the call that they had an opening and he was next on the list. It was go time.

ROC spent three weeks in the hospital for a final, and more invasive, set of testing to make sure the surgeon knew exactly where the seizures started so that he knew where to place the device and the electrodes. At the end of those three weeks, ROC had the device in his skull and three electrodes inserted in or around the thalamus of ROC’s brain. Only two of the electrodes were actually connected. We hoped this would be the beginning of the end of the seizures.

However, as I said, not much changed after the surgery. The tonic clonic (formerly called grand mal) seizures stopped but the myoclonic jerks didn’t. During the past three years since the surgery, ROC’s doctors have made “adjustments” to the implant in effort to stop the myoclonic jerks too. However, the adjustments were limited because any changes in one of the two electrodes would cause ROC’s entire left side start tingling. It seems like every time there was an adjustment, ROC would go without the jerks anywhere from a week to a month but then they would start coming more and more frequently to the point I was giving him rescue medicine every two to three days.

During this time ROC would also change up his diet and workout routine. Last summer, ROC trained to walk 1000 miles for epilepsy awareness (he ended up walking across Florida in the month of October). Most recently ROC started on a medically supervised ketogenic diet. Again, all of these attempts to make his body and epilepsy better would allow him a couple weeks of reprieve from the myoclonic jerks but eventually, the jerks would become more and more frequent.

Frustrated and trying not to be defeated, ROC went to his follow up visit with the neurosurgeon. I don’t know about ROC but I was in shock when I heard the words from the surgeon’s lips… the surgeon can move the electrode that is causing the tingling and/or the surgeon can connect the electrode that is in there but not connected. WHAT?! I forgot all about the third electrode and it never occurred to me that they could move the problematic electrode. Wow!

Yes, this will mean another hospital stay. Yes, this will mean another surgery. No, it will not be as painful as last time. Correct, we are not out of options.

We got out of the appointment and ROC sent a message to his neurologist. The neurologist responded he will talk to the neurosurgeon. If all goes well in that conversation, ROC’s case will go to the neurology group case review/conference. So while we sit and wait (yet again) there is this little glimmer of hope that the end of these seizures is still possible.

Four Days into the Journey and Still Surreal

Ryan (a/k/a ROC) came to me, his wife and caregiver, at the end of last year telling me he wanted to walk from our hometown of Longwood, Florida, to Fenton, Missouri, for the purpose of raising awareness for those with Epilepsy and for Veterans with Battle Induced Seizure Disorders. Ryan has come up with some crazy ideas in the past but that was all that they were… ideas. There was something different about this idea. I am not sure what it was but I could tell that Ryan meant business this time.

As the next few months went on, Ryan continued to talk about this Journey of 1000 Miles. He also started training for it. Now I knew for sure that he was serious so I jumped into action too. Together, we spent the first 9 months of 2022 getting Ryan ready mentally and physically, establishing the 501(c)(3), and promoting the first ever ROC Stop Seizures Journey of 1000 Miles.

Originally Ryan wanted to do the walk in September but on the advice and clearance of his neurologist, Ryan moved the walk to October. October is supposed to be a cooler month but not so cold that we are risking snow. While October is still in hurricane season for Florida, we generally do not see a lot of activity in October historically.

We do, however, usually see the hurricane scares in September. We thought we were going to be able to get through this past September without a scare but then on Wednesday, September 28th, through Thursday, September 29th, we lived through one of the worst hurricanes Longwood has seen, Hurricane Ian. Our power was out for 36 hours and while I say this gratefully and recognize how lucky we were to only have our power out for 36 hours with no other problems, having the power out in a Florida September heat is a trigger for seizures. We were very fortunate that Ryan did not have any major complications due to the power outage. We were also very fortunate that after the storm passed the temperatures dropped drastically.

Hurricane Ian also interfered with our plans for a big send off hosted by the City of Longwood in the city park, Reiter Park. City officials needed to be ready to help with clean up plus they could not guarantee whether the park would be open for Ryan to even start from the park. I have to say, our the City did a great job of handling everything with Hurricane Ian from preparations to clean up to damage assistance. We need to give a big thank you to the City for being there for our town and community. As our Mayor, Matt Morgan, says we are #Strongwood.

Ryan with Mayor Matt Morgan on send off day

Ryan is not big on fanfare but as our community was coming together in the aftermath of Hurricane Ian, it seemed only fitting to bring the community together to send Ryan off on his Journey on October 1st as originally planned. We ended up having a small, informal, and impromptu send off in our subdivision. Our neighbors came out to join us as well as friends and family who live in the Longwood and Central Florida areas. Again, a big thank you to those who came out for the send off. I think Ryan and I were a bit nervous by this point but seeing everyone together and having your support helped ease the nerves.

I finished packing the RV after Ryan started his Journey from the send off. I met up with Ryan for a rest stop in Apopka. I met up with him again in Mount Dora, where we found a farm that offered RV camping through an app I found that lists private residences and businesses who offer camping on their property. It was a total of approximately 25 miles of walking for Ryan that day.

The second day Ryan got a late start but it was OK because he got to meet up with Orlando Sentinel reporter Patrick Connelly to do a follow up interview that was supposed to have happened at the originally planned send off. Thank you Patrick for coming to meet Ryan in Mount Dora!

The heat spiked on this second day so given the late start and the heat, Ryan cut his walk for the day short at around 13 miles in Tavares, Florida. We stayed at a great RV campground, Fisherman’s Cove RV Resort. It was here that I really learned about how to maintain the RV (hooking up to electricity, water, etc). This is my first experience driving a 25 foot motorhome so there is definitely some learning to do.

On day three, Ryan tried for an earlier start but like the day before, the route still did not have much shade. That did not stop Ryan, he kept walking up State Route 441/27 about 15 miles until he was ready to stop for the day. While Ryan walked, I did some shopping at the Walmart Supercenter for the last minute things we realized we should have brought with us for the RV. Even with that shopping, I realized when I went to cook dinner that night that we still need more things like sponges, a spatula, and tongs (yes, this is my list for myself of things to buy today). While it would have been nice to have a bowl to mix the ground beef with the hamburger seasoning for the hamburgers I was cooking, I improvised by mixing it in a baggie. I also had to improvise when flipping the burgers with two plastic forks. This was risky and had to be done quickly and carefully so as not to melt the forks!

Now here we are on day four. Even though we are four days into this, the whole thing seems surreal. We spent so much time planning but now we take things on a mile by mile basis. I think we both keep thinking, “is this really happening” or “are we really doing this” and we may keep thinking this way through the next 30 days or however long it takes Ryan to get to Fenton. The purpose of the walk is not for Ryan, not for us, but for those who have silent conditions such as Epilepsy and Battle Induced Seizure Disorders. The purpose is to help people find their voice and start talking about these conditions instead of hiding from them. The purpose is to #neverquit raising awareness, education, and funding. We can’t do this without the help of our followers and supporters. We appreciate everything you have done and continue to do. Thank you.

Wishing All Floridians Well Through Hurricane Ian

It is hurricane season. It comes every year starting the beginning of June through the end of November. September always seems to be the worst month and the most likely month to have a hurricane scare if not an actual hurricane. This year, we almost made it through September without anything. Yet now, here we are in the last two days of September with one of the worst hurricanes Florida has seen in years.

While we continue to make preparations for ROC to start the Journey of 1000 Miles on Saturday, we want to take a minute to recognize the severity of Hurricane Ian and to wish everyone in Florida well and safe as the storm passes through affecting the majority of the state.

The hurricane is anticipated to pass through the state in time for ROC’s October 1st start of the Journey of 1000 Miles. We are as prepared as we can be for the hurricane and look forward to starting out on Saturday. ROC’s path will backtrack Ian’s path slightly in that Ian is heading southeast while ROC will be heading northwest.

It will take ROC about a week to get out of Florida by foot. We would really like to meet up with our fellow Floridians once Hurricane Ian has passed and while ROC is on his Journey. ROC’s Journey can be tracked on our Journey of 1000 Miles web page or on any of our social media.

Stay safe everyone.

I Sit and Wait

I sit and wait to see what happens. I try to anticipate what I can do to help.

I watch him have repeated jerks. I swipe the magnet for the implant to learn. I count the time until the next rescue med.

Will this end up as a full seizure? Or will it end in sleep? Hopefully it won’t mean a hospital trip like it did last week.

Only a few more days until the stimulator implant is activated. Come on hon, you can make it. Until then I stay by your side.

I think they are slowing, less intense, I hear your soft sound of sleep. Please, get some rest, make the jerks go away, and most of all never quit.

The Wait and See

It has been about four weeks since Ryan’s NeuroPace implant surgery. I’ve been uninspired to write or update during this time. Ryan has been bored, depressed (although he won’t admit that) and still having myoclonic jerks and tonic clinic seizures. These aren’t the things I was hoping to report.

However there is still hope. at this point the device is learning his brain activity. We try to look at it as if the jerks and seizures are just helping the device know when to stop this abnormal brain activity before it starts. We just have to look forward to the device being fully activated at this point.

Mid-August is the time. Ryan has an appointment with the neurosurgeon and the neurologist. They will get their updates on occurrences since the surgery and then activate the device. In the meantime, medications will continue to be adjusted, personal plans will be changed, and the seizures will be continued.

We can’t quit, we won’t quit, we never quit. We have come too far for this implant not work. I am inspired to have the next post be better news.

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