Brain on Fire

Told in the collective first person, jointly from Stu and Janell Clarke's perspective.

Narrated Audio Blog

Our next stop was visiting Door County which we had been looking forward to since Patagonia eight months earlier. Back then we had a great time in Ushuaia, a two week wait for a replacement sleeping bag meant a forced break from the riding. What better place to wait than the end of the road, a place of daily celebrations as someone new arrived having endured the long road by car or by bike, motored and human powered, or arriving by sea. Not only was the city full of adventurers but there was usually a cruise ship or two docked or anchored in the harbour. During the day the high street was bustling with tourists while at night, with the cruise ships having set sail for their next destination the bars were loaded with bikers, cyclists and backpackers from everywhere. It was here that we met Erin, a solo traveller who had shared sections of road with various other adventure riders and now celebrating her arrival in Ushuaia. Like a lot of people, we saw her come and go in our time but of course kept in contact and would try to reconnect at some point. Unfortunately our paths didn't cross again on the road, but as we approached Erin's home town in the US she made sure we would come visit.

Erin lived in Door County on Lake Michigan, a beautiful lake house awaited us in a picturesque town. Erin absolutely spoilt us rotten right from the start, we were taken out for dinner, a fine dining experience that we had not been accustomed to on the road and then to the bars to meet some of Erins local friends. We had a wonderful night and really felt at home.

Shadow stayed at home with Maple for the evening like the good mum she was but Weeti didn't want to miss out on the fun. To be honest Weeti mostly had to stay in the car but when she did make an appearance she was very popular. Our last stop was a busy bar, Weeti was again waiting in the boot of Erin's 4WD, after we left the bar we quickly checked Weeti, she seemed a little off but nothing too concerning and nothing we could put our finger on, maybe we'd just woke her from an interesting dream.

The next day Erin took us to show us something we found absolutely fascinating, the Tiny House she was building. We'd never even heard of such a thing and were amazed at how much house she would be fitting onto a trailer. That evening, Erin had to work and so we settled in for a quiet evening of wine by the open fire. It wasn't going to be a late night, not after having had such a big day the day before, with a 500+km ride from Chicago followed by a night out which took us into the early hours.

We were all but in bed, and that was when it happened. First Weeti started snapping over her right shoulder, her mouth frothing and completely unresponsive. She was having a seizure, again!

Let us rewind six months. We had just arrived in Mendoza, Argentina, a region famous for its Malbec Wines. We were excited about riding around to various vineyards and exploring the area in general. We checked into a hostel in a central part of town, although it was the cheapest option in town it was very nice, we had a large private room with a double bed and the standard rate included breakfast, which is always welcome. The owner was a well travelled yet young Italian guy, he had a rescue dog who roamed freely around the hostel keeping everyone entertained and so was thrilled to have us and Weeti stay (this was pre-Shadow adoption). We made dinner and got to bed early, ready for a big day of wineries.

At around 1am Janell was woken to the sound of Weeti thrashing around in the bed, she woke Stu and ran to turn the lights on. We'd never seen anything like this before and had no idea what was going on. The assumption was that she was choking on something, maybe her tongue, and so we tried to clear her airways. She was snapping ferociously and trying to open her mouth was no easy task, but in any case it all seemed fine. Janell ran down stairs to get help, she banged on the owner's door and yelled. Meanwhile, Weeti came to, she seemed exhausted but was completely aware. Stu ran down stairs with her in his arms, the hostel owner was now up and dressed, he got straight on the phone to a 24hr vet and then ordered us a taxi. Stu was still wearing nothing but white underwear but worse still, immediately after seizure Weeti had lost bladder control and pissed all over him.

When the taxi arrived, the hostel owner insisted on coming with us to the vet to interpret. The on call vet attended to Weeti straight away, he gave her a shot of valium and told us that she would be best to be kept in for observations and that we should pick her up in the morning.

We were at the vet as soon as possible the next morning. The diagnosis, Distemper. We knew nothing of Distemper but quick research indicated that it had no cure and killed very quickly. It was a raw diagnosis coming barely six months after the loss of our beloved Skyla. We immediately told our friend who we'd adopted Weeti from. Being a vet herself she was well aware of what this meant but also of the latest research in the field. She advised us of a vet who had developed a protocol that if followed correctly could result in a cure within three months. The vet had an academic paper written on the subject which she forwarded to us, it was of course in Spanish but convincing nonetheless. The miraculous thing was that this vet was located in Mendoza, only five minutes ride from our hostel. We booked an appointment immediately.

The Vet himself did not speak English, but he had a colleague who translated and explained everything to us at every visit. We would need to spend the next 10 days in Mendoza with regular visits to the vet and undergoing various treatments, if she improved within this time then the chances were good and she could continue to travel with a three month course of medication.

We spent the next 10 days watching Weeti like a hawk. We only ate in the hostel and set up a video link to the room whenever not with her. The first few days were the worst, she went into seizure two or three times before we worked out an amazing trick to call her out. We simply whistled every time she started, she knew Stu's whistle and would always come to it and sure enough it worked, she would come out of her seizure and return to normal. After we worked this trick out she never went fully back into seizure.

After the 10 days in Mendoza we were given the all clear by the vet and confident that she was going to be alright. We travelled incident free for the next three months and with the vets approval we ceased the medication. Everything was going to be alright.

Now, back in Wisconsin, we'd just seen the awful truth of our reality, whatever this was had not been resolved. This first seizure had occurred at around 9pm and it seemed we'd got to her too late to call her out. Throughout the night she continued to go into seizure on average every 90 minutes, we were there for each and every one, trying our whistle but this time failing. When she was "aware" she was vague and confused it was as if she wasn't properly with us. She would want to run, we had to put her on a leash and let her get it out of her system, back and forth she'd go almost in a trance. Come morning we were all exhausted, but yet the seizures continued. During one of the seizures we took her outside to avoid having to clean the mess, but it resulted in her pooping and peeing all over Stu's feet. He put her down to let her have her run, but she was unleashed. She ran straight for the lake which was odd because she was terrified of water and we figured that her disability had rendered her unable to swim. But she surprised us and headed straight out towards the horizon. In her state she would have killed herself. We took chase, the water was icy cold and we really didn't want to get in, but with Weeti already determined to cross one of us had to go after her. Stu waded in across the stoney entrance and into deeper waters, quickly catching up with Weeti and pulled her back, she turned and snapped catching Stu's hand and chest, Stu held her tight so that she could not inflict any more damage and made his way to the shore, Weeti of course could not be blamed for the bites, she was in no way in control of her actions. We learnt our lesson, she could not be allowed to run after a seizure.

That morning we took her straight to the local vet, it was a mobile vet run from an RV but sufficiently stocked with routine medications and facilities. While waiting to be seen Weeti went into seizure, which was handy for us explaining the problem. He instantly discounted Distemper due to the lack of other symptoms. He gave her a valium injection and gave us a high dose of Phenobarbital but said we should be prepared to make some tough decisions if there was no improvement. He told us that what she really needed was a thorough set of tests including scans of the brain which would cost upwards of $2,000.

In all other respects she was completely healthy, we couldn't let her go without a fight. Throughout that day and the following night she continued to suffer, again averaging a seizure every 90 minutes. Again we wanted to be with her as she came out of each and every one of them. We did some research and found a university clinic with facilities to do all the tests required. We called to book Weeti in and although it was a Sunday, we decided we needed to get her there as soon as possible. Erin was absolutely amazing, she insisted we take her 4WD to make it easier to drive the five hour journey to the University of Wisconsin-Madison.

We dropped in to the local vet before heading off and Weeti was given a high dose of valium, we were told it was unlikely to last the journey but should give us a little time. Fortunately she slept the entire journey and we arrived at the university clinic without having had a seizure to deal with on route. We checked her in and were told they would need her for three nights.

In this time we again turned to TentSpace for a host. A lovely couple Tim and Amy had already offered to host us and when we told them about the issues we were having were more than accommodating. Unfortunately we didn't get to spend the time with them that we otherwise would have, instead using them more as a hotel. Sharing stories and getting to know your host is a big part of the TentSpace philosophy. But the philosophy of the ADVRider forum and the motorcycling community in general is to always assist fellow riders in need, and this is where Tim and Amy came through for us. We were back and forth between Madison and Door County and visiting the clinic or spending time watching Weeti when in Madison. Fortunately Tim and Amy were dog lovers and completely understood.

We returned Erin's car the next day and with needing to wait three days were able to spend a little quality time with Erin and her family before saying goodbye. Although an awful experience, it would have been so much more difficult without the love and support that Erin offered, and really after knowing her for such a short time.

We picked Weeti up three days later. She was still not herself but we'd been told that she had not had a seizure the entire time she was with them. This was great news but still left a lot unanswered. They conducted extensive testing over that time, including a physical and neurological examination, chest x-rays, brain MRI, blood tests and a spinal tap. The MRI and chest x-ray ruled out cancer which was an instant relief. The spinal tap identified that there was potential damage to her brain caused most likely by an infection of some type. It was unclear if the infection was still present and what form the infection took but this could be cleared up by the blood sample to a certain degree. The blood work would take some time but in the meanwhile we were given a dose of antibiotics to start her on as well as anti inflammatories and a high dose of phenobarbital for the seizures. We were very grateful to the staff at the clinic and graciously paid the $3,000+ bill knowing that Weeti was going to be alright and that no "hard decisions" had to be made.

There was one person we really wanted to catch up with before leaving Madison. Jenny was a backpacker we'd met in Ushuaia around the same time we met Erin. We had also met up in El Calafate on our way north while being hosted by the same Couchsurfer. Again, Jenny was thrilled to meet up with us back in her hometown. We could only afford a few hours but spent the time well with a personalised walking tour of the city including an evening garden light show.

We continued our travels somewhat faster than intended, not only was time running out but it was getting cold and we were far too far north for the approaching winter. Weeti seemed distant for the first few weeks, it was as if she didn't know us and had forgotten how to lean while riding, we put this down to some kind of amnesia. But before long she returned to her old self. It wasn't until two weeks later that we received the blood results, a bacterial infection spread by ticks which often lead to permanent brain damage and could have resulted in a far worse condition. Although it was likely that the infection had cleared it was advised that Weeti be put on a specific course of antibiotics and tested again in four weeks. We complied and the results showed that the infection was all clear.

The phenobarbital was something that we were told may need to be administered for life. But if after 18 months she had not had another seizure we could consider weaning her off. This was unlikely to be the case and we were told to expect one to two seizures a year and that if this was the result it was a good outcome.

In fact 18 months passed without a single seizure and so we initiated the weaning off process, simply halving her dosage over three months. And now a further two years later she is still free of seizures and lives a healthy happy life.