The Blog

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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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.

Third Surgery’s a Charm

Today will be Ryan’s third brain surgery in almost three weeks. The first two surgeries were part of Ryan’s Stereo EEG (probes inserted in his brain and attached to an EEG for monitoring). Today’s surgery is different than the other two. During this surgery, the probes come out and a NeuroPace implant is put into his brain.

The NeuroPace is a responsive neuro stimulator (RNS). What this means is that it learns Ryan’s brain activity and will respond to a starting seizure accordingly by stimulating the brain in contrast to stop the seizure. There are two probes inserted to Ryan’s thalamus and the battery/device is placed under his scalp flush with his skull.

An interesting tidbit (albeit possibly gross to some) the piece of skull that is cut out and replaced by the device, is frozen and kept up to a year. Should Ryan want or need the device removed within the year, they will use the piece of bone cut out today to fill in the hole.

Ryan and I met with NeuroPace representatives before the surgery today. They gave us a computer with a scanner type of device. Ryan will need to put the scanner device up to his head once a day to collect the data the RNS collected. Then once a week he downloads the data to the computer and sends the information to a NeuroPace cloud where The NeuroPace reps and Ryan’s doctors can access the information, determine whether any adjustments are needed, and determine when they turn on the stimulator part of the device. It is important to collect the data in the next few months so that a seizure pattern can be determined and used for stopping the seizures once the stimulator is activated.

They took Ryan into the operating room today around 12:30. They prepped him while he was under anesthesia and started removing the Stereo EEG probes around 1:30. Removing the old probes and implanting the RNS should take two to three hours.

While I wait, I fill my time eating lunch, taking a nap in the waiting area, talking on the phone, half watching HGTV, playing games on my phone, and whatever else I can do to distract my brain from worrying about Ryan being under anesthesia again for an extended period of time. Luckily I have the waiting room to myself.

At almost 4:30 I have nothing to report. It’s been about three hours since they started the surgery. We are now at the end range as to when Ryan should be done. I try not to panic but I know the longer one is under anesthesia the more risks there are. I also know that there are some risks to inserting the RNS probes into the thalamus. The risks are small but if they happen, they are critical. At one point I heard a code blue called over the hospital speakers but I was able to breathe a sigh of relief when I heard the code was on a different floor and unit. I breathed a bigger sigh when the code was cancelled immediately after it was announced. Now for some news on Ryan and I can really relax.

At 5:00 one of the reps walked out to leave. He couldn’t really tell me anything because that is up to the doctor he did however say that the device is working perfectly. Hopefully I can talk to the doctor soon to make sure Ryan is working perfectly as well.

Finally! Around 5:30 the surgeon came out to see me. They ended up putting in 3 electrodes. Two went into the thalamus and the third went into the left posterior cingulate. However the third is not connected to the device. They will first wait to see how the two in the thalamus do and if they need to adjust them they can do a quick procedure to change the connections around. This will save time so they do not have to place electrodes later.

Next steps? A question that is getting old but necessary. Plus these next steps are good steps. Ryan will recover the next day or two. He will have evaluations by speech, occupational, and physical therapies. They will start collecting data from the device and the two electrodes in the thalamus. With everything hopefully looking good, Ryan should be home on or before Monday.

It may have taken three surgeries but as they say…third time is a charm. Let’s hope so and hope that this does the trick to make Ryan’s epilepsy more manageable and treatable.

Losing Count

I’ve lost count of where we are in this process. I know Ryan had his first surgery on June 15th. I remember Ryan had his seizure exactly one week after he had the 13 probes inserted. I am fairly sure he had two more probes inserted three days after the seizure. It is from there where the timing of things really gets fuzzy.

I’ve been calling this period “Limbo Take Two” but this time instead of waiting for a seizure we waited for answers. Ryan’s doctors determined that his epilepsy is extremely complex. While it is generalized epilepsy, it has traits of focal epilepsy. Ok, there is one answer but it’s not the answer we really need to hear.

The answer we are waiting for is how the doctors want to treat this complex epilepsy. Usually, medication is the only treatment for generalized epilepsy but the doctors keep bringing up a NeuroPace (responsive neuro stimulator “RNS” – responds by stimulating brain to stop seizure when it is starting) and they bring up a deep brain stimulator (“DBS” – constant stimulation of brain to stop seizures). So, which is it?

After multiple conferences amongst Ryan’s whole neuro team and after the neurosurgeon consulted with colleagues around the US, finally a decision was made and an answer provided. Other level four neuroscience centers around the country have been implanting an RNS device, or even two devices, in a very small and select population of generalized epilepsy patients, like Ryan.

Ryan’s surgeon and team took this information, conferenced again, and decided that it would be better for Ryan to try the implant despite his complexity then to send him home with an epilepsy that is clearly worsening.

So here we go again…surgery number three. Ryan and I have been researching this from our end as well. Asking questions to the doctors, reading the little research materials out there, and talking to others with an RNS.

More answers: This surgery will be about 4 to 5 hours long. They will start prep around 11 am tomorrow. He will have the probes that have been in the past two weeks taken out and two probes put in that will be attached to the battery which sits under the scalp and flush with the skull.

The next biggest answer we received? Ryan should be discharged Monday. Monday! I may have lost count of where we are with things but I do know that Monday will be exactly three weeks from the date of Ryan’s admission. He is ready, and we are all ready, for him to be home.

Limbo Take 2 – Day 4 – Next Step Implant…Maybe

We are four days out from the second surgery to put additional probes in Ryan’s brain. Ryan has been in the hospital a total of two full weeks today. There still hasn’t been a second seizure but there have been some myoclonic jerks and a possible panic attack.

Despite not having a second seizure, the doctors may have collected enough information to make a treatment recommendation. They explained to us that Ryan’s epilepsy is complex in that there are different areas of his brain where they consistently see spikes are working as a network. They believe the source of the network is in the left posterior (rear) cingulate.

The doctors are conferencing again tomorrow to discuss Ryan’s case but it sounds more than likely they will be recommending a NeuroPace implant.

The NeuroPace will learn Ryan’s seizure activity so that it can sense when a seizure is starting and distract the brain to stop the seizure. From our research it seems as though Ryan would leave the hospital with medications as well as the implant but he should be able to wean off of the medication as the device fends off more and more seizures. It is battery operated, like a pacemaker, but the battery should last about 8 years or so. Ryan would need to have surgery again to have the battery replaced.

Another seizure at this point will help the doctors to confirm that the seizures are in fact stemming from the left rear cingulate and that the NeuroPace is the best option of treatment. However, the doctors will make their recommendation with or without another seizure. Ryan’s third and final surgery for this hospital stay will be sometime at the end of this week.

Of course what type of surgery they do will depend on the recommendation and Ryan’s decision. Ryan is leery of brain implants so I am helping him to research the NeuroPace, talk to others who have it, and weigh the pros and cons of having an implant vs medications only treatment.

Ryan keeping busy with coloring pages

So it is at least another week here in the hospital. At least we have some answers and on the path to recommendations and possible solutions.

Limbo Take 2 – Day 3 – Tiring For All

I haven’t posted in the past few days. Mainly because there has been nothing to report. We have still been in waiting mode for Ryan to have another seizure to give the doctors the information they need to determine what will be done in the third surgery.

As a bit of recap, last Thursday was the second surgery from which Ryan recovered much quicker because only two additional probes were placed and they were prepared for the nausea before the surgery.

Friday was still a recovery day but more so a waiting day. In order to try to expedite things, I brought Ryan hot dogs to eat. I’m sorry to all of Ryan’s coaches, trainers, nutritional support, etc but these hot dogs were the highest in nitrates we could think of and no where as clean as Ryan would otherwise eat nevertheless, since nitrates can trigger a seizure, Ryan ate three 7-11 hot dogs. It wasn’t worth it. Nothing happened.

So Ryan sleep deprived himself that night which brings us to Saturday. I had to work so Ryan’s dad visited him for the day. As an extra bonus for me Ryan’s mom took our son to her house for the night. I had the house to myself and still no seizure on Ryan’s end.

I tried to distract myself by having a friend over for dinner. I of course kept in contact with Ryan. I couldn’t give myself a complete break when Ryan is in the hospital with no foreseeable distractions or breaks until this is done.

After a bad night’s sleep for me and a vomiting dog to tend to, I get a text from Ryan. He had an “anxiety” attack at 2 am. The way he describes it however sounds like the time when we were first working from home together and Ryan said something weird was happening and ran around the house frantic not knowing what to do. I had to finally snap him out of it and get him to lay down. We could only assume at the time that he had a seizure. (See post Working Remotely from Home at https://rocstopseizures.com/2020/03/24/working-remotely-with-epilepsy/)

So now we wait until the doctor can look at the EEG and video to let us know whether or not Ryan had a seizure last night. The answer to this question may give us an answer as to whether Ryan’s frantic attack in late March was an actual seizure.

I feel weird saying this but I really hope what happened last night was a seizure and if it was it gave the doctors the information they need to make some decisions. I know Ryan is bored and tired of being in the hospital. I can’t help him because his concentration is so poor after 23 days in the hospital, two surgeries, and possibly two seizures I am just as ready for him to be home as well. Our son is 5 years old and understands daddy is in the hospital to help figure out what’s going on in his brain. However our son does not understand why it’s taking so long. We are all so tired and ready for things to go back to normal absent Ryan’s seizures.

I’m trying not to get so tired so that I stop posting. I am just tired of posting that we have no information. Thank you to those who have been following, whether it be daily or occasionally. I hope for more regular posts with news and advancements going forward from here.

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