Thursday, September 18 – Cat and Julian’s last day in clinic….

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A dusty road from a few days ago

It was to be the last day in neurology clinic for Cat and Julian as we would be departing for the Serengeti tomorrow morning, and they would both be heading home on Monday. Cat had been interested in coming back to FAME ever since her original visit here four years as a resident, and even more so once she heard about the possibility of having full EEG capabilities at FAME and I had introduced her to the Brain Capture folks. I had been trying for years to get one of my tech savvy residents interested enough to develop some type of portable EEG system that would interface with an iPhone for the last decade but had no real bites along the way. Brain Capture is essentially that and much, much more, giving up nothing to in lab services that may be more traditional, but are far more cumbersome and much more expensive.

Their goal for this visit was to get the EEG up and running and to develop the necessary protocols for who to order EEGs on and what to do with the results. In addition, we would have to be sure that the EEGs would be read on time, a problem that we had run into previously, and that the results of the EEGs done would be communicated properly to the clinicians caring for the patients. Tim had been incredibly impressed with how quickly Nurse Jacob had learned to procedures for completing the EEG – cap placement, checking impedances for each of the electrodes, and, finally, collecting the data and getting it uploaded to the internet. Not only did Jacob accomplish this with incredible efficiency, but he did so with ease and always a smile on his face. Ultimately, it was very clear to us that Jacob was the right person for the job and there was very little question that things would go smoothly from here. We would, of course, eventually have to train a second individual to cover EEGs should Jacob be unavailable or on annual leave, but I was confident that this wouldn’t pose an issue for us.

“Dustbusters” – Cat, Joe, and Jack in the back of Turtle in their protective gear

Today, we were expecting the group of patients from near Tarangire who are brought every six months by Chief Lobulu, a Maasai who circulates throughout their community looking for patients with neurologic disorders such as epilepsy. I’m actually not entirely sure how it began that he brought us patients as we had never held a clinic in his village (they are not in the Karatu district), but somehow, he found out about us and has been bringing his neighbors, all of whom have been incredibly appropriate for us to see. We now set up a specific day for the “Tarangire group” and he will usually bring us between 10 and 15 patients – both children and adults, and all with neurologic disorders.

Several years ago, he had brought two teenage boys with Down syndrome to come see us asking if there were anything we could do for them. They did have seizures or anything else we could actively treat, and both boys were reasonably highly functioning, though hadn’t gone through school as these patients do back home. In the US, patients with Down Syndrome go through regular schools, though obviously with significant accommodations, and will typically remain in high school until they are 21 years old. Here, the process is far different, and neither boy had received any traditional schooling, though it was clear to me that both boys were functioning at a high enough level to where they could receive additional vocational training. With the help of Kitashu, our Maasai social worker and outreach coordinator at the time, who sought out different schools that might be a good match for them, we were able to place them in vocational rehab program in Usa River where they spent several years – one becoming a tailor and the other a welder. I had raised funds with a Go Fund Me campaign and we able to put both of the boys through their training. Chief Lobulu told me today that both of the boys were doing well.

Novati, Zuhura, Julian, Cat, Annie, Joe, Jack, and Zai

We had hoped to have some epilepsy patients that might benefit from an EEG which would have been great since Tim from Brain Capture was still around for the day as were Cat and Julian to read them. Unfortunately, we did such good luck on this front and weren’t able to find any suitable patients. That wasn’t an issue, though, given Tim’s confidence, as well as ours, in Jacob’s ability to get EEGs done when they were needed.

Julian delivering his talk on EEGs

This morning’s education talk was being delivered by Julian and was covering that very topic – when to order EEGs on patients and what to expect from the results. As mentioned earlier, there is no clinical need to order EEGs on every patient coming in with epilepsy, seizures, or seizure on their differential diagnosis. It really depends on the clinical scenario as to how helpful it would be to have an EEG in specific situations. Julian and Cat developed an excellent set of flow sheets that would walk the clinicians here at FAME through the thought process of whether to obtain an EEG and, if you do, how to apply the results in the appropriate clinical context.

Wanted, Dead or Alive

As Julian began his talk, we realized that sitting in the corner of the room up front there appeared to be someone sleeping sitting up under a blanket so close to Julian that he could have easily whacked their head with his elbow if he weren’t careful. We weren’t sure that Julian realized there was someone sleeping there, though it became more and more evident to us that there was no movement from the sleeping figure for the entire 45 minutes that he was presenting. Cat and I were cracking up at first and then became a bit worried that there might have been a dead person who had been placed on the chair which would have been an incredibly rude awakening for Julian. When his talk was finally over, we walked up front only to find that what was in the chair was a very realistic and life like CPR mannikin that had completely fooled us, though we’re pretty certain that Julian had been oblivious to it during his talk. We all had a great laugh over the situation and, thankfully, didn’t have to figure out where to put a dead body we’d found.

The truth revealed

Saidi was taking Turtle in the fundis (mechanics) to work on some things to ready her for our trip to the Serengeti tomorrow. The clutch had been leaking some fluid on the floorboard, and it turned out that it needed an entire clutch master cylinder rebuild as all of the rubber gaskets and seals had rotten away. I thought that we had taken care of most everything, but that’s never the case and Land Rovers, as dependable as they are on the road (meaning they never get stuck unless you try driving through a lake as we did last April), they require constant upkeep to maintain them in running condition. Regardless, I’m still a Land Rover fan and always will be.

Wednesday, September 17 – It’s up, up, up to Mang’ola Juu….

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On our way to Mang’ola Juu – there’s always room for more in Turtle

It was time for our last mobile clinic of the week, and today’s visit would be a newer community that we have been to over the last several years – Mang’ola Juu, which literally means “Mang’ola up.” There are several good things about our visit to this community with the first being that it’s only about half the distance than it is to Barazani and Mbuga Nyekundu, meaning a much shorter time on the dusty and bumpy hour-long road we had taken for the last two days. Another reason is that it sits in a very lovely spot high up on the foot of Oldeani Mountain with a spectacular view of much of the valley we had driven the last two days, though with all the dust in the air, it wasn’t until after noon that much of the haze had settled down. Lastly, it is one of the more typical health dispensaries that we have worked in over the past decade with a few rooms that we could use for exam rooms, but the clinic staff are most helpful to us.


“The Neuro Squad” preparing to stomp out neurologic disease

Mang’ola Juu is an Iraqw farming village very similar to Kambi ya Simba and Upper Kitete in the Mbulumbulu region where we had started these mobile neurology clinics. The residents are all hearty farmers who have lived their entire lives on this small plateau overlooking the valley below. As we arrived, there were already patients waiting to see, which is always a good sign, but unfortunately, their doctor had not yet arrived for the day so there was some delay in getting rooms set up. We’re here as their guests and not to take over their clinic, so the last thing we want to do is give the wrong impression and barge in as if we’re taking over the place. We patiently waited for them to arrive and give us the permission that was required to use their space.

While we were waiting, though, we had plenty of time to find a volunteer among our staff to do an EEG on. For today’s clinic, we had brought along the portable EEG device from Brain Capture to see what the feasibility would be to work in the field with it, and we had also brought along Tim Goodwin, Brain Capture’s “trainer’s trainer” who had been down for the last several days training Jacob, FAME’s nutritionist, who now be available to provide EEG services here at FAME on a very limited basis and as a trial run. We had a full car for the last two clinics so, with the help of two soda crates in the aisle of Turtle, we were able to fit two more souls (a total of 11) for the ride up to Mang’ola Juu.

One awesome EEG tech – Nurse Jacob
Julian working with Nuhura on reading EEGs

With the extra time we had, Tim and Jacob set up shop in between the two vehicles, using the two forementioned crates stacked on top of each other to sit on, and began to work on hooking up Dr. Annie as she had the prerequisite hair that would be challenging to fit the EEG cap on which was the purpose of this morning’s exercise for Jacob. Each of the electrodes that are contained in the cap (just shy of 20) must have reasonable contact with the patient’s scalp to conduct the information properly, and this can sometimes be a challenge depending on the patient’s hair and other factors. It wasn’t long before they had Annie all hooked up and ready to record for about 20-30 minutes. All went perfectly well, and it wasn’t long before all the information that had been recorded during the procedure was uploaded to the cloud at which point it could be accessed by us on the ground, and either Cat or Julian could actually read the EEG. Over the day, we had hoped there would be one or two other patients whose clinical histories would be such that it would be helpful to have an EEG in figuring out what was going on or at least shed additional light on the situation.




Thankfully, the number of patients once things got rolling was excellent and there were several in which there was a question of epilepsy or seizures, and an EEG would be helpful for decision making and management. While everyone continued to see patients in clinic (i.e. there was no disruption necessary in the flow of clinic to do a study), Jacob and Tim set up the first patient, an adult, in another room to obtain the EEG. Everything went smoothly with both the application of the electrode cap and verification that all the electrodes were conducting properly, so it was time to run our first patient study in the field. Once the study was completed, the data was quickly uploaded to the cloud using a phone app. The time to complete the upload process obviously depends on the speed of the network, though here we were in a relatively remote village with cellular access to the internet, and the upload moved along quite quickly in a matter of minutes. As soon as the upload was complete, which again was incredibly rapid, we could then access the file with one of our laptops that had the reading software installed. With Cat and Julian present, both EEG readers (and epileptologists), they could read the study immediately.



Just to put everything in perspective, EEGs are typically obtained in an EEG lab on a digital EEG machine that is performed by an EEG tech and read later in the day, though could certainly be read immediately by an electroencephalographer if that were felt to be necessary. The significant of what had occurred at Mang’ola Juu related primarily to the fact that Brain Capture’s EEG is completely portable, uses a cap instead of individual electrodes, and utilizes the cloud to both upload and access the data, so can be done anywhere one has access to the cloud. In this case, since Cat and Julian were both with us on the mobile clinic, the studies could be read by them immediately. In their absence, we would miss that opportunity, though it could always be done remotely and very easily other than the 7-hour time difference we have to always deal with. Most outpatient EEGs are not read so quickly as there is usually not a clinical scenario where that needs to occur, but in the situation here, it certainly streamlined the process by allowing us to make immediate clinical decisions while Cat and Julian were here and prevent the at times significant difficulty we have in contacting patients later with test results or in fully communicating our clinical recommendations to the FAME team.



We also had a second patient during the day, a young boy, who was having recurrent episodes that were concerning for seizure, and was a perfect candidate for an EEG. The process also went incredibly smoothly – the study was done and uploaded to the cloud, and Cat and Julian again read the study, with their laptop sitting on the fender of our Land Rover, immediately after its completion. It’s really difficult to fully convey how truly remarkable these events are in the world of global health and practicing in a low resource setting. Though having the ability to read these studies immediately won’t always be the case unless we just happen to have an electroencephalographer on site, which is pretty unusual, it also isn’t necessary from a clinical perspective as the EEGs can be read remotely, and very quickly if needed. Regardless of whether it is absolutely necessary to have this ability, which in the vast majority of cases it is not, demonstrating the full potential of what can be done when all the stars align was incredibly dramatic and equally rewarding.


Patients arriving to clinic on boda bodas

Something I hadn’t realized earlier in the trip was that our three J’s – Joe, Jack, and Julian – are all left-handed. I’m not sure what the odds of that are or whether it has something to do with being neurologists or crazy enough to travel here with me, but either way, I found it a bit unusual.

Resting my eyes at the end of a busy day

Our second patient EEG took just a bit longer than expected as it needed some trouble shooting, which was great to know that it could be worked out in the field, so we waited for it to complete, be uploaded, and then read, which was really a very short amount of time in big scheme of things. I still marveled at how seamless the entire process went and how much this would help our treatment of epilepsy here. It’s not necessary to obtain EEGs on every patient who presents with a question of seizures, nor does the diagnosis of epilepsy require an abnormal EEG or even obtaining an EEG for that matter. The most important thing to remember is that epilepsy is a clinical diagnosis, first and foremost. It requires a good history and physical alone.

Modeling Teddy’s handiwork – a neuro uniform

We had planned for a visit to Teddy’s in the evening to pick up the clothing and other things everyone had ordered from her. The neuro team, other than me, had selected a fabric to all have matching short sleeve shirts made from and it was time for everyone to try them on. Amazingly, they all fit on the first go around without any requirement for alterations and looked incredible on them. I had stopped buying clothes from here years ago as I’m so particular about the feel of fabrics and their fit (trust me, it’s not a fashion thing, but how they feel on me that’s the problem), though I must admit that after seeing everyone wearing them, I was just a little jealous.

Teddy’s eldest son, Alan, riding high

Tuesday, September 16 – Day two in Mang’ola….

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We were heading back to the Mang’ola region today for the second of our three mobile clinics this week, so it would be another test of everyone’s fortitude considering we had much of the same drive today with no relief of the bumpiness or the dust. The town that we’d be heading to today is Mbuga Nyekundu, which in Kiswahili means “red park” or “red clay,” and is a small village in a farming community that is inland and further from Lake Eyasi than Barazani was. The drive is about 80% the same as yesterday’s, with the final stretch being through a bit more remote (if there could be something more remote than Barazani) of an area and travels across a very cool bridge over a rocky wash that was dry now, but one could easily imagine what it would look like during a raging downpour with boulders the size of a suitcase careening out of the foothills.


Julian and Nuruhu awaiting patients

We have been coming to Mbuga Nyekundu for at least six years, and during that time, they’ve built a large clinic building with an open central area filled with grass that has multiple rooms for us to use as clinic rooms. Similar to Barazani, though, furniture has been at a premium here, and I have tried to help the issue by donating desks, chairs and benches to these clinics that have worked with us in partnership over the years. That furniture remains here at Mbuga Nyekundu as it does at Barazani and several other clinics that we’ve traveled to over the years.


Joe bussing tables

Once again, it seemed the number of patients we would have today appeared to be far fewer than we would have hoped for based on the fact there was no one waiting for us on our arrival which is not often the case. It was a similar story as we were given yesterday, that everyone was out planting crops, but as I mentioned yesterday, there was also the ongoing theme of the upcoming elections and some political unrest making everyone feel a bit restless and less inclined to travel some distance to a clinic. Regardless, we worked on setting everyone up in their exam rooms with the necessary furniture (leaving nothing comfortable for Cat and me to sit on and relegating us to the most uncomfortable bench one could ever imagine) and readied ourselves for the possibility of an onslaught of patients that never materialized.


Taking a midday nap

The patients that were seen were certainly legitimate and needed our care but had traveling a great distance with two vehicles and a large staff making it not the most efficient or cost effective as it would have far less costly to have paid for the patients transport all the way back to Karatu. Balancing the benefit of our visits to the villages and the impact our presence has against the shear cost of the bringing everyone such a distance from FAME is not always the easiest to calculate. I have been convinced from our very first mobile clinic to Kambi ya Simba fourteen years ago, that our visibility in the community has served to not only secure an increased access to healthcare by the residents of these communities, but has also led to greater awareness that many of the illnesses they suffer from are very treatable. This has been most evident for the diagnosis of epilepsy in which we frequently encounter patients who have suffered with seizures for their entire lives never realizing there was help available despite their living in Karatu district where FAME has had a presence for so many years. Most of these patients live well within the reach of a simple bus ride from FAME but have never known that coming here could so greatly impact their lives in a positive way. Going to the villages and encountering them essentially in their homes, then treating them successfully gives them more than enough reason to make the trip to FAME in the future to continue receiving the medications and treatment they so crucially need.

Anti-dusting gear
Joe napping
Homemade face mask for the dust

What still remained for us was the drive home from Mbuga Nyekundu and the dust and bumps, but thankfully the drive tomorrow for mobile clinic would be much shorter, though equally dusty. I learned later that Cat, Joe, and Jack, all of whom sat in the very back of Turtle, which is exactly where all the dust collects, had developed a system for the ride home. Just for reference, Turtle has seating for nine people in four rows – two in the front, two in the second and third rows, and three across the very back. They are all bucket sets, though the middle back does not have arm rests. Driving home with the heat of the afternoon and the rumble of the road is apparently very conducive to sleeping, though there are two significant problems – first, with the heat, you must leave the sliding rear windows open, but as soon as another vehicle passes in the opposite direction, you must quickly close the windows or else the dust floods in. Second, falling asleep puts you at risk of hitting your head on the window whenever we hit a bump. The three of them devised a system so that whenever someone saw a bump coming up, they would yell, “bump,” and whenever someone saw another vehicle approaching, they would yell, “dust,” and you would immediately slide your window closed. I can’t confirm how their dust reduction system worked, but I can confirm that we arrived in Karatu with no significant head injuries.

I suggested a few options for the afternoon, considering that we had arrived home earlier than expected, and visiting the Highview Lodge to enjoy their pool won out over a visit to the vegetable market and a walk in town. The Highview Lodge is a mid-level resort that is just up the hill from FAME and has always offered to host volunteers at their pool as a gesture of friendship that has always been appreciated. Though it’s always been an option to enjoy some relaxation there, I have never taken advantage of it in the past. I have attended a few going away parties around the pool that were lovely and also had my surprise 60th birthday party thrown there a few years ago. We came home to put on our swimsuits and arrived to the Highview minutes later. It was a lovely evening, and we had about an hour or so before the sun set which was more than enough time for Cat and me to enjoy a Moscow Mule along with a jump in the pool which was so refreshing after the dusty drive home. We were all worried that the pool was going to turn brown from all the dirt we had collected on our bodies, but thankfully that didn’t occur, or else FAME volunteers may never have been invited back again.

The Highview Lodge pool

The other important event that occurred at poolside was that the Patrick Liu missing sock mystery was finally solved. All the laundry of the house is done together as well as those of our neighboring houses, and as good of a job as the housekeeping staff does in keeping every separated between the houses, an occasional item may go missing until it’s finally located in one of the other houses. Patrick had slowly been losing pairs of his black ankle socks and had assumed they were in someone else’s house, but when he finally mentioned it this afternoon, it turned out that Cat had brought very similar looking socks and had been taking both hers and Patrick’s from the clean laundry. Now you would think that Cat may have recognized that her sock collection was multiplying and there were more pair than she had brought, but she hadn’t until Patrick mentioned his mystery and she put two plus two together. When we came home, she quickly released the kidnapped socks to their rightful owner, and all was right with the world again.

Sunset from the Highview

We would be off to Mang’ola Juu, which literally means “Mang’ola up,” in the morning and were planning to bring along Tim, who is the Brain Capture trainer and has been here all week, along with Nurse Jacob, who has been trained to perform the EEGs, so that we might have the opportunity to perform a few EEGs in the field and see what the feasibility would be of doing this away from FAME.

Monday, September 15 – It’s mobile clinic week and we’re off to Mang’ola…

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When I first came to FAME in 2010, they had already been providing a large-scale, expedition-style mobile clinic to the Lake Eyasi region that was being funded by another non-profit called Malaria No More. These clinics would be monthly (when the roads were passable) and would take place over a week where perhaps 20-25 staff would travel via the large all-wheel drive bus and several Land Rovers to very remote villages a distance of perhaps four hours. Everyone would sleep in cement block, government buildings on mattresses, and everyone would eat meals together that were prepared by the kitchen staff. Each of these mobile clinics was a true adventure as you never knew what you might run into – we once had to wait hours for a rain swollen river to recede before we cross it and proceed to our destination. On another occasion, we were stopped and asked to pay for repairs that were made to the road when it turned out that our people had made the repairs the day before. I was privileged to have been included in several of these clinics during my volunteering at FAME, though they ended in 2011, I believe when the project funding was complete.

The health dispensary at Barazani

One of the major characters who played a part in organizing these mobile clinics to Lake Eyasi was Paula Gremley, a woman who had worked in Northern Tanzania for a number of years and had her own non-profit that worked primarily with orthopedic patients and the rehab end of things. After returning from one of the clinics to Lake Eyasi, she asked me if I would like to travel to a few of the villages in the Mbulumbulu region of the Karatu district and see neurology patients as she was sure there a number of them that would make it worth my while. That was in 2011, and the neurology mobile clinic program has not only continued since then, but it has grown from one or two clinics each visit, to now including six mobile clinics each visit and in nearly as many villages. We continued focusing on the Mbulumbulu region for more than ten years while also including the Rift Valley Children’s Village, and more recently the villages in Mang’ola that are on Lake Eyasi. What has started as a small group consisting of myself, Paula, her partner, Amiri, a nurse and a clinical officer all in a single vehicle, has now grown into a larger, near-expedition style clinic with two vehicles, all of my residents, our translators, outreach coordinators, a nurse, a FAME driver for the second vehicle (I drive the first), and other miscellaneous personnel.

Our vehicles parked in the shade

Villages are chosen based on the potential for us to see the most neurology patients of need, and where the existing dispensary or health center is interested in us coming to see their neurology patients. Some villages we never consider – one wanted us to pay them for each patient that was seen because we were clearly making money when seeing their patients, something that could not be further from the truth, and especially neurology patients who are heavily subsidized due the high costs of neurology treatment that we provide for a nominal visit charge that includes medications and labs as well as the visit itself. But other villages have been incredibly receptive to our visits, being as helpful as possible when we come and thanking us profusely for caring for their patients.

Jack and Novati ready to see their first patient
Joe and Patrick waiting for patients

Today, we were on our way to the village of Barazani in the Mang’ola region that is on the closest end of Lake Eyasi, one of the several larger Rift Valley lakes in the area (Manyara and Natron being two others). The road to Mang’ola travels through irrigated valleys growing onions, and the majority of patients are from the Iraqw tribe with a number also being Datoga. The smallest, and most interesting, group in the Lake Eyasi region, though, are the Hadzabe, who are the last hunter-gatherers in Tanzania, still hunting with bows and arrows, and speaking a click language. They are considered one of the bushman tribes of Africa, and their number are steadily declining as a result of the loss of big game for them to hunt and further pressures from other local tribes in the same region. They are a fascinating people, and I have lots of other stories about them for another day.

Lunchtime

The road to Mang’ola this time of year is hot and dusty, and when I say dusty, I mean very dusty. There are numerous ravines that you must drive into and over bridges that are often washed out every year during the monsoons. Flash floods are common during the rainy season, and you must always check the condition of the road prior to heading out. Today, the drive was simply dusty as dusty gets – an oncoming truck will usually completely obliterate your visibility for some distance, and trying to overtake any vehicle, let alone a large truck, often means eating quite a bit of dust just to get close enough even to consider the prospect of a pass. I have continually asked by my fellow travelers this trip if it’s always this dusty and though I can’t imagine why it would be any dustier than in the past, I also keep thinking to myself that it couldn’t have been this dusty in the past, though I’m sure it was.

Jack and Zuhuru ready for patient

The Barazani clinic has always been one of the busiest clinics that we’ve attended, even to point of having come back a second day one time to see all the patients we had to turn away. The clinical officer who works there is a wonderful person who is always so happy to see us each time we come, and all the staff there have always been very helpful in getting us set up to see patients by making room for us in their limited clinic space. We will typically run three teams seeing patients – resident and translator – which requires three desks and enough chairs or beds for everyone to sit on. Furniture is very scarce at these remote medical outposts, where even finding an extra chair for staffing can be difficult, meaning that Cat and I would have to either stand or sit on the ground for most of the day.

Me finding a “comfortable” place to lie down

Unfortunately, we have far fewer patients here today than we had expected, which can be the result of a number of reasons or a combination of all of them. It turns out that it was onion planting season (Mang’ola is the onion capital of Tanzania) and when people are left with the decision of whether to get their crops planted or come for health care, their livelihood will always win out, and we’ll see far fewer patients than expected. In addition, with the elections happening at the end of next month, there have been many political demonstrations as well as constant political announcements from vehicles with huge speakers driving around town, that have possibly overlapped with our outreach announcements making it at times confusion for the patients we were hoping to see. These factors would certainly impact the number of patients we could expect to see and are also factors that we either can’t anticipate (planting time) or can’t control (elections)

Me sitting out on the porch typing

We left Barazani a bit disappointed as we ended up with fewer patients than everyone had hoped for given what I had told them of our past experience here in Barazani, though were still optimistic that we’d see more the following day in Mbuga Nyekundu, another village in Mang’ola region. On the other hand, we were departing Barazani at a decent time which allowed us to drive out to Lake Eyasi to check out what was happening on the shore there. I had forgotten the exact route to get to the lake, or perhaps the tiny paths I had taken in the past no longer existed, though either way, I had to make a few corrections in our route along the way, though we finally made beach where there were hundreds of tents lining the shore. The fishermen here harvest small fish larger than minnows using huge nets that are dragged out from shore a great distance on small dhows and then dragged back to shore by walking the lines in using old burlap sacks attached to the lines to form slings that are stepped into and slowly walked ashore. It’s a brutally strenuous process (I’ve tried it several times), but the rewards are huge netfuls of fish that are subsequently dried on the beach and then packed into huge burlap sacks where they are then sold to processors who crush the fish into a meal that is then fed to chickens.

A very dust face
Definitely in need of showers after the dusty ride home

Today, it was very hazy and hot on the beach and there were few fishermen working the nets or small fishing dhows when we arrived, though there were one or two boats on the water having laid their nets which were being hauled in. In the past, we had actually had them take us out in the boats, but on much nicer days and in better conditions. When Cat was here four years ago, she recalled having gone out in one of the dhows that was actively sinking due to numerous leaks, though thankfully didn’t completely go under which would have posed a bit of a problem for us as no one had planned on a swimming adventure. We left the beach this time shortly after having arrived and began our journey back to Karatu on the same long and dusty road that had brought us in the morning.

Some of the tents on the beach at Lake Eyasi

On arriving home, I checked on the CT scan for a 10-month-old child who had originally come to FAME several weeks ago with what looked like possible TB meningitis. Despite antibiotics including anti-TB medications, the child had not improved, and their repeat CT scan was completely consistent with this clinical worsening and now included some very concerning interval worsening of their hydrocephalus. Without a shunt to relieve the increasing pressure, it was unlikely that any amount of antibiotics were going to make a difference in this case, and the family had so far been resistant to being transferred to any other facilities.

10-month-old with meningitis – initial contrasted scan on left and follow up on right

Sunday, September 14 – If it’s Sunday, it must be a safari….

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Departing FAME before sunrise
Cat overly excited at the gate

Ngorongoro Crater is simply one of the most spectacular places on our planet. It would be impossible for me to completely convey the feeling one has when first laying eyes on it after having driven half mile up to reach the crater rim and then descending the same distance into this magnificent geologic feature that is unequalled anywhere else. The “crater” is actually a caldera (collapsed volcanic mountain) and is the largest, complete, dry caldera in the world. It is ten miles in diameter, and the walls are 2000 feet high forming a Garden of Eden with thousands and thousands of animals who don’t migrate but rather stay in place in this self-contained ecosystem with diverse enough habitats for everyone. It has the Big Five (rhino, elephant, Cape buffalo, leopard, and lion) and one of the densest populations of lions in Africa. The animals here live their entire lives in the crater as they have no need of anything else.

A panorama of the crater from the overlook


I have been driving into the crater several times a year for over the last 12 years and it has never once gotten old for me. For those who know me, there are many things that I love to do, but taking a group into the crater and guiding would have to rank up there with one of the most enjoyable and most incredible things I have done in my life. I’ve said many times before that is someone told me that I would be driving a Land Rover in East Africa to places like Ngorongoro and some many others here at this stage in my life, I would have thought them simply daft. Yet here I am still loving every minute of it.

Sleeping lions as they usually are during the daytime
Thompson gazelle and zebra
Drinking zebra, always a bit nervous
An angry hippo
Grey crowned cranes

We left the shortly after our target time (6 am) to get to the Ngorongoro Conservation Area gate leading up to the crater shortly after it opened considering it was high season, and I expected lots of vehicles. I had five passengers – Cat having been the crater before with me, and Joe, Jack, Patrick, and Julian, all of whom had never been on a game drive before. Getting through the gate with our quote, or invoice, that had been prepared with the help of my good friends, Leonard and Pendo, has always been a bit nerve wracking as it seems the rules change every time I’m here. I am typically the only non-Tanzanian standing in line, though there seem to be more people doing “self-drive safaris” than in the past. I am always asked, “have you driven here before,” or “are you familiar with the crater?” Today’s time checking in was one of the smoothest, thankfully, though I was still asked the same questions.

Our lunch spot at the lake


Grabbing coffee after lunch

The drive up to the crater rim is one of my favorites, if not the favorite, drives in the world. Ascending through a primordial forest of trees rising hundreds of feet out of the ravines to find sunlight is just spectacularly impressive. At every hairpin turn on the switchbacks, the elephants have carved away the clay to get to the minerals they so desperately need. Arriving at the overlook, when we’re not fogged in at the rim, is daunting as you’re looking at a giant cavity in the ground ten miles across and nearly half a mile deep. Everything is laid out in front of you, but it is not until you finally reach the bottom that you can perceive the sheer immensity of the space you’re in. Even then, it is still difficult to grasp the magnitude of the crater, but after we spend the day exploring, you will finally understand.



Female Cape buffalo giving us the stink eye
Group of wildebeest with a lone hyena looking on in the middle
A lonely hippo in the lake from behind
A secretary bird

The photos I’ve posted in the blog were all taken by my passengers (I was driving, of course) using an extra camera and lens I bring just for such an occasion. The photos are that much more impressive considering they are all novices at photography. Please enjoy.

A serval




Saturday, September 13 – A morning clinic, Gibb’s and the Elephant Caves….

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I had planned a half day of clinic so we could enjoy a bit of the local scenery here in Karatu – We’ll often have dinner at Gibb’s Farm or somewhere similar before we depart for Ngorongoro Crater in the morning. As had happened prior to our visit with Daniel Tewa, the only way to be certain we’ll get out of clinic on time on any given day is not to be in clinic. It was a very cool morning and, as a morning showerer, I was a bit disappointed when went into the shower only to find that not only did we not have hot water, but there was no pressure on that side of the system. There is always a bit of a battle here about whether we’ll have hot water in the evening or the morning, and though I’m very liberal democrat, I will at times pull rank on others and insist that our hot water is available in the morning, though it really depends on the group. Hot water to the house is supplied by a kuni boiler, and wood fired hot water heater that is shared between two houses, so it often depends on what the other house wants as well. Typically, if the kuni boiler is fired up in the evening, there will be enough water left in the morning to at least give me a tolerable lukewarm shower, though for some reason, that was not to be the case this morning, and I suffered through a very cold and brisk rinse that certainly awakened any slumbering cells that were left in the my body. The issue in fact turned out to be a bit more complex than initially though.

On our way to Gibb’s Farm in the stretch Land Rover

One of the patients brought in this morning was an elderly gentleman who was accompanied by his son and wife and was noted to have several years of severe memory and functional loss as well as a history of heavy drinking that had been stopped shortly after he became sick. Unfortunately, the patient most likely had Wernicke encephalopathy, or worse, Korsakoff syndrome, that are both issues with thiamine deficiency and are often seen in chronic alcoholism which is actually a nutritional deficient state as health caloric intake is substituted by unhealthy intake. Patients who have had gastric bypass procedures that lead to excessive weight loss without the appropriate intake of essential vitamins (such as thiamine and B12), will also develop these conditions.

Wernicke encephalopathy is potentially reversible if it is diagnosed in time and treated aggressively with vitamin supplementation, specifically thiamine, though the diagnosis can often be missed. The clinical triad of confusion, gait dysfunction, and eye movement abnormalities should make anyone think immediately of this condition, though the majority of patients who present do not have the complete triad, or all three of the symptoms, the diagnosis of Wernicke encephalopathy must always be considered for missing them will result in the more permanent condition and devastating condition of Korsakoff syndrome in which patients will have no memory retention and will constantly confabulate. Unfortunately, for our patient, his symptoms had been present for nearly four years and he wasn’t going to improve with any treatment, though we did put him on thiamine just in case it would possibly help him.



Another patient came in with a far less devastating problem, but whose exam and some of her symptoms didn’t quite fit with the normal presentation of what we thought she had and was the most likely scenario. She described bilateral hand numbness that was worse at night, but her examination did not reveal any weakness or sensory changes in the typical locations that one would think for carpal tunnel syndrome, and the provocative maneuvers we typically use (the Tinnel sign, and the Phallen test were both absent or negative) were not present. Regardless, the most common thing she could have was carpal tunnel syndrome as the symptoms were intermittent and bilateral and nothing else would explain the fact that her symptoms were present only at night. We recommended that she fashion wrist extension splints from spoons and Ace bandages which is our standard go to since pharmacies here do not carry them as they do at home.

We finished clinic with plenty of time to spare and proceeded home to gather our things for an afternoon at Gibb’s Farm including lunch at the beginning followed by a hike to the elephant caves (more in a moment), and then an afternoon in the pool. I had originally planned to skip the caves as I’ve done it in the past and was truly looking forward to sitting at Gibb’s drinking gin and tonics or Moscow mules all afternoon. The six of us plus Dr. Anne had an amazing lunch at Gibb’s that was all buffet with an incredible salad and vegetable selection that are all from their gardens and farm fresh. Gibb’s has always been generous to us, and to others, who are volunteering in Karatu and the work that is done for the community. FAME provides care to all of the lodge’s employees in the area as well as to many of the coffee plantations.

Midway down the waterfall

After lunch, the plan was for everyone to hike to the Elephant Caves, which I was going to hang out at Gibb’s and relax a bit. In addition, Anil and his family were going to meet everyone at the starting point for the hike. The Elephant Caves comprise a hillside that has been essentially excavated by the local elephants who come each evening to dig at the clay with their tusks, extracting valuable and essential minerals for their help. Elephants digging at the hillside to obtain these minerals isn’t necessarily unique as there are plenty of examples all over the place, but the magnitude of these caves is tremendously larger than in the other locations. It’s rare to encounter the elephants at the site, though I have in the past and have been thankful that we’ve had a guard with us carrying a rifle. Elephants are not one of the Big 5 for no reason at all.


Anil with his two children, Avni and Nayan

I got a bit of FOMO (fear of missing out) during our lunch when I discovered that Annie had planned to accompany them, and I certainly did not wish to be shown up by my FAME neurology protégée. So, after lunch, we all took the shortcut out of Gibb’s to get to the road up to the Elephant Caves. The spot where we entered the road was about a third of the way up an incredibly steep thoroughfare, and though I hadn’t yet regretted my choice of accompanying them, it did cross my mind. Anil and family were coming by bijaji to join us at the entry gate to the trail, and it turned out their driver just dropped them off at the bottom of the slope rather than having any discussion. They finally make it to the gate and then it was a matter of everyone making payment to the Ngorongoro Conservation Area Administration whose internet was incredibly slow.



We began the hike on switchbacks that took higher and higher until we finally reached the Elephant Caves. We had a guide, Johanes, and a ranger with us, the latter telling us that it was her job to protect us, though she immediately went off with Annie on some shortcuts and wasn’t with us for a significant portion of the hike. The day was gorgeous – exactly the right temperature, clear skies, and occasional breezes. There were no elephants at the caves save for a young calf that had apparently been killed in a collapse, though I’m not certain how accurate that was given its body was sitting at the mouth of the largest cave and fully exposed. Regardless, it smelled sufficiently to keep everyone steering clear of the carcass, and needless to say, no one explored the larger cave where it sat.


We started back down the trail to head back to Gibb’s, but first we would travel to the bottom of an incredible waterfall that I hadn’t been to previously. In the past, we had always hiked to the top of the waterfall, which was certainly an impressive sight, but paled in comparison to where Johanes took us. Apparently, during the pandemic when there were few tourists, they had built an incredibly steep trail to the bottom of the waterfall that gave access to all the separate pools and the cool breeze with the lovely mist. This was just an intermediate point along the falls, and they continued beyond where we were sitting, though there was access to the lower levels. I so wanted to jump into one of the lovely pools to feel the cool waters (probably similar to the shower I had taken in the morning), but that wasn’t allowed and probably for good reason. As steep as the trail had been going down, it was exhausting coming back up to the main trail, and we made our way back to the ranger station where we had started. I’m so glad that I had gone with everyone and I would have been sad to have missed the experience, especially with those falls.


The infinity pool at Gibb’s Farm

In short order, we were back to the tranquility and beauty of Gibb’s Farm, sitting around pool and having drinks. The Tloma Village Choir came to perform at 5:30 pm for the lodge guests as they often do. We eventually made our way back home after sunset with all of us as well as Anil, Izabela, and their two children in Turtle. With all the sweat and grime from the hike, I had been looking forward to a nice hot shower, but there was little in the way of hot water. Worse yet, I hadn’t realized that the water had been contaminated with mud, so when I went to dry myself off, the towel had turned brown. I thought perhaps that I was just extra dirty, but when I stepped out of the bathroom, I was immediately questioned about whether I had noticed that the water was brown, which I hadn’t. I realized that I had just taken a shower in muddy water, so immediately jumped back in with only cold water to get myself clean. It turned out that the hot water to our two houses was not working properly as there was a leak allowing the brown mud to seep into the system. I have taken many cold showers here at FAME and remembered quickly that there is more to happiness than just a warm shower.

Friday, September 12 – The group takes a hike through the brick quarry…

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One of the beautiful plants around FAME

It’s the end of our first week here and the patient volume has been a bit down, likely due to the weather, which has been very cool and overcast in the mornings. The weather has been incredibly delightful for us, though this temperature is considered “freezing” for the Tanzanians who come completely bundled up with multiple layers of clothing, while I’m walking to the clinic in a short-sleeved polo shirt. At the Maasai market, ski jackets are a hot commodity, and anyone riding a motorcycle (known as a boda boda or piki piki here) will be wearing a big puffy jacket to fight off the cold. When the weather is cold like this, people tend to remain indoors and don’t come to clinic early in the morning, choosing rather to wait until later in the day when the sun is shining and its warm rays can be felt.

Reviewing a CT scan during morning report

Morning report on Monday, Wednesday, and Friday are attended by the entire clinical staff at FAME – doctors, nurses, lab personnel, radiology – and our conference room where it’s held is far too small to accommodate everyone, meaning that if you show up late, you’re relegated to listening from outside at the window. There were several patients of interest to us this morning – one young man who had a head injury and another older woman with an initial scan concerning for a tumor. These were both inpatients, and we would see them once we arrived in clinic and determined what our volume of patients would be for the morning. We were told of a third patient who had weakness, though we had no other information. In the end, the patient was described as having “GBM” and wouldn’t need to see us. That might seem a bit odd to those neurologically minded readers as “GBM” in our parlance refers only to the very ominous diagnosis of glioblastoma multiforme, the most aggressive of brain tumors one can have and which is essentially not survivable. When I first came to FAME fifteen years, I couldn’t understand what was in the water that was causing so many patients to develop “GBM,” until I was finally told that it wasn’t referring to the devastating glioblastoma, but rather meant “generalized body malaise,” a far less problematic diagnosis.

Anne holding one of our patients during a presentation

There were few patients waiting to see us at the start of clinic, probably as a result of those cold temperatures I had mentioned, so Julian stayed behind to hold down the fort while Joe and Jack went off to the inpatient wards with Dr. Annie and two of our translators. We have three new translators working with us this session who I had forgotten to introduce – Novati and Zuhura, who are both clinical officers (kind of a cross between a nurse practitioner and a physicians assistant), and Zainabu, or Zai, who is a fourth year medical student at Kilimanjaro Christian Medical Center in Moshi, and is one of the main referral hospitals in Northern Tanzania. There is actually an oversupply of both doctors and clinical officers here in Tanzania, so there are many that are looking for work and are willing to volunteer here at FAME with the hope that they will not only get additional experience, but also a letter of recommendation that will help them secure a job in the future. We have certainly hired a number of those who have volunteered her with us in past, though the jobs at FAME are quite desirable and scarce, and there are often very few openings. There are several volunteers who have worked with neurology in the past, though, and have now become clinicians here – Elibariki, Dorcus, Africanus (who now runs the clinic at Rift Valley Children’s Village), and others.

Subacute left insular infarct in Jack’s patient

One of Jack’s patients who had been seen yesterday or the day before and had new onset aphasia that was concerning for a stroke but required an imaging study to be certain it was not related to a mass lesion. The patient had her scan, and thankfully it was totally consistent with a subacute cerebral infarction in the left insular region (much better than a mass lesion for sure).

CT scan of the patient with the head injury – right frontotemporal fractures and subarachnoid hemorrhage

The patient with the head injury had been in a motor vehicle accident and suffered significant head trauma resulting in fractures and a traumatic subarachnoid hemorrhage. We needed to see him to assess his mental status and to make sure he didn’t have any significant neurologic deficits. Thankfully, he was neurologically intact for the most part, though we couldn’t assess his right eye movements due to the amount of swelling he had and the inability to even open that eye. The main concern we had was whether he had any entrapment of his eye muscles on that side as a result of the fractures. We would have to see him again later to be certain whether he had any double vision or not. His mental status was fine, and the traumatic subarachnoid hemorrhage didn’t require any intervention as it would simply resorb on its own.

3D reconstruction of our patient with the skull fracture

As for the patient who had been billed as a possible mass lesion, her history was that of sudden onset of left sided weakness which was more consistent with a vascular event, or stroke, than it was with a tumor, but we still wanted to obtain a contrasted CT scan to be certain as to which one we were dealing since their treatment would be completely different. The contrasted scan was indeed more consistent with an infarct, or stroke, and her workup would therefore be very different. She did appear to have some left atrial enlargement on her chest X-ray and CT scan of her chest (which had been obtained due to a history a chronic cough), raising the question of a cardioembolic source for her stroke meaning that we would probably obtain an echocardiogram at some point.

Imaging of our patient with the right frontotemporal lesion – non contrast above and contrast below

We arrived home from clinic in plenty of time for some evening activity and Cat was in definite need of a hike, her favorite pastime. She, Joe, Jack, and Patrick had decided to walk out behind the house and there was plenty of time before sunset before such an adventure as I had no intention of letting them head out on their own had it been later. I had just told them of one of my first hikes here which I had done solo to take photos of the sunset from a distant ridge looking west, only to realize when I got there, that I hadn’t brought a flashlight and this was in the day before iPhones had the flashlight feature. I took my sunset photos, which really weren’t that great, threw my camera back into my daypack and started on my way back to the volunteer house at FAME. One of the great benefits of being in rural Africa is the fact that there is very little atmospheric light after sunset and, unless the moon has risen, it gets very, very dark very, very quickly.

Cat’s view before her hike

Walking across the many fields and through several orchards in the dark, the very same ones that I had traversed to get to my original destination of the ridge, I only knew the direction in which I should be walking along with a rough estimate of the time it had taken me on the way up in the daylight. I imagined that every bush and stump was an animal waiting to pounce on me, and was quite happy when none of them did, but I had to suppress my fears the entire walk home which I’m sure seemed my longer than it really was. When I finally reached the house, my two roommates were none too pleased with me for making such a drastic error in judgement as they were certain something had happened to me long ago. This was at a time where we didn’t have cellphones that worked here, so I had no opportunity to call them or send word that I was safe, though I was certainly scared silly during the entirety of that walk.


I now have several sets of walkie talkies here that I’ve used in the past when we’ve taken two vehicles out on game drives so we could communicate with each other, so I gave one to Cat and her group so that we could at least stay in touch during their trek. Julian has stayed behind to work on one of the lectures for next week, and I had wanted to get some other work done, so each of us remained at the house. Unbeknownst to me, Cat had decided to take the group down to the brick quarry and up the other side of the ravine towards Tloma Village when I had actually thought they were heading the exact opposite direction. They had a great walk, and thankfully there were no issues as the walkie talkie didn’t work that great in that direction and I wasn’t sure they had a phone with them to call if they needed any assistance. As the sun was dipping lower towards the horizon, I had memories of my trek in the darkness fifteen years ago, so I was quite happy when I heard them all arrive home well before the black of night appeared.

The brick quarry

Matilda

Thursday, September 11 – A long day in clinic and a frustrating patient for Joe….

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Cat presenting on anti seizure medications

As Cat and Julian had come with a particular interest, and plan, to get the EEG program up and running here at FAME, they had also wanted to give some lectures to the staff that would help with their understanding of not only treating epilepsy, but also when to consider ordering an EEG. A year or so ago, through a number of connections that aren’t necessary to go into at the moment, we began working with a company, Brain Capture, that had designed a very portable and unique EEG device for particular use in low resource settings where there were no neurologists. The original intent was for this technology to be implemented in hospital settings where virtually anyone could be trained to apply the EEG electrodes via a proprietary cap, the EEG data could them be obtained via the Brain Capture device (a jack box/amplifier) which would couple with an iPhone to assure the study was being run correctly and then uploaded to the cloud via the internet. At that point, the study would be read by a Brain Capture neurologist and the report transmitted back to whoever had done the study.

One of Cat’s amazing flow charts

Obviously, not having neurologists present is not a problem for us (we often have more neurologists at FAME than there are otherwise in the country), and when we’re not here, we’re in constant communication with the staff at FAME to provide guidance regarding which patients should have an EEG and what to do with the data, but the ability to have a portable EEG that uploads the data to the cloud which we can then access would be key to our mission here at FAME. As I have pointed out in the past, epilepsy is now the most common diagnosis that we’re seeing at FAME in the neuro clinic, and it also represents a very vulnerable population of neurology patients who have an entirely treatable condition as long as they are appropriately evaluated and placed on the correct medications that they can hopefully continue. There are clearly many variables in that last sentence – we can handle the appropriate evaluation and correct medications part, but whether patients can continue on the medication is a matter of affordability and/or support, hence how important it is for us to continue working on funding opportunities for our neurology program.


Today, Cat and Julian were able to complete their first Brain Capture EEG for this trip with the assistance of Elibariki (who has been doing them for a year) and Jacob (who is now being trained and will be the point person for these studies going forward). It’s important to note that epilepsy is a clinical diagnosis and does not require patients to have an EEG for that diagnosis, so there is always a concern about overutilizing the technology which would be a problem given our already over stretched staffing here at FAME and concern for conservation of resources including personal. This is something (i.e. when to do an EEG) that Cat and Julian will be working on during their time here. This morning’s educational lecture was being given by Cat and was to cover anti-seizure medications with an emphasis on pregnancy as many of the medications’ metabolism is affected by changes that occur during pregnancy and many of the medications are problematic regarding birth defects and need to be changed, though it depends on which trimester you’re dealing with. Cat presented what could have a very dense lecture with lots of flow charts and algorithms that could have easily lost the bulk of her audience, but everyone was totally engaged in her presentation and, based on the numerous excellent questions at the end of the lecture, all had clearly understood the material.

Cat staffing a patient with Annie, Joe, and Novati
Jack and Zuhura evaluating a patient

One of our early patients in the morning was a 7-month-old child who was not developmentally normal, and mom gave us a very accurate description of a seizure type know as infantile spasms which the child had been doing for several months. This diagnosis, which is most often particularly devastating as the prognosis for normal development is terrible, though there are a few patients in which the condition can actually resolve. There is a particular EEG pattern, known as hypsarrhythmia which is highly chaotic and high in amplitude, that is particularly diagnostic of this condition, also known as West’s syndrome, but unfortunately, the smallest cap for our Brain Capture device would not fit this child. These patients are treated with high dose prednisone for a month to see if their seizures resolve, and so we started this child on the steroid and asked them to come back to see us in a month when Leah, or child neurology resident, would be here.

Patrick, Julian, and Zainabu evaluating a patient

The number of patients for the morning was pretty steady and there seemed to be a bit of a lull after lunch, that is until we had two doozies at the end of the day. The first was a 33-year-old gentleman with no past medical history who came to clinic in a wheelchair with lower extremity weakness and numbness. He told us that he had been diagnosed with typhoid and brucella and treated with a number of antibiotics several weeks prior to the onset of his symptoms, though it was unclear how these diagnoses were made and how accurate they were. The first though was that he could have Guillain-Barre syndrome, or acute inflammatory demyelinating neuropathy, a condition that causes an ascending weakness and numbness that can also lead to respiratory failure, though is reversible, even without focused treatment, but requires supportive care (i.e. ventilator if they stop breathing). It is a parainfectious condition that is often preceded by another infection that triggers our immune system to develop antibodies against the attacker, and in most cases, the antibodies also attack the covering of the nerves, or myelin, that keeps electrical impulses traveling efficiently, and our peripheral nervous system functioning.

Novati and Joe evaluating a patient
Zuhura and Jack evaluating patient

Our patient, though, described symptoms up to his waist, but nothing in his upper extremities, which was not consistent with Guillain-Barre, and his examination confirmed normal strength in the arms with severe weakness in both legs, though more proximally than distally, not the pattern seen in Guillain-Barre syndrome, or GBS. Additionally, he was having significant urinary retention and constipation, and the reflexes in his upper extremities were normal. An additional piece of important history, though, was that he had been complaining of back pain prior to the onset of his symptoms. This immediately raised our concern a perhaps more concerning condition that would require urgent intervention – cauda equina syndrome. This condition involves compression of the nerves running from the end of the spinal cord and exiting the lumbar canal (known as the cauda equina, or “horse’s tail”) which causes weakness and numbness of the lower extremities (sparing the upper extremities) along with bowel and bladder dysfunction (urinary retention).

Novati and Joe working in clinic

Amazing quality of the Brain Capture EEG

This condition requires emergent intervention with surgical decompression for the longer the compression continues, the more likely the deficits will be irreversible, and especially the bladder dysfunction. This would require imaging with an MRI scan and a neurosurgery to intervene, neither of which we have here at FAME. I contacted the neurosurgeon at Kilimanjaro Christian Medical Center (KCMC) in Moshi, about 3 ½ hours away, and she agreed to have the patient sent over to her for evaluation and possible treatment. I had Dr. Annie speak with the patient and brother to make them aware of the situation, and she initially indicated that they would plan to go to KCMC in several days, which was completely unsatisfactory. I don’t recall my initial response, though I am certain that it translated to “no, now.”

Daniel Tewa demonstrating the use of the Iraqw spear to our group

We had planned to visit Daniel Tewa this evening, so when a patient came back to our waiting area, having been sent by reception at approximately 4:15 pm, I wasn’t a very happy camper. Apparently, the patient and her mother had been waiting out front for the regular OPD, which was very crowded, when they should have been triaged to us. Joe began to see the patient while I headed home with Patrick so he could meet with one of my previous residents by Zoom for a primer on entering data into our database, while Cat stayed behind to staff as it was an epilepsy case. As they say, though, the plot thickened as soon as they began seeing the patient.


She was an otherwise healthy 5-year-old girl with a history of two episodes of convulsive status epilepticus lasting 30 minutes each time for which she had been taken to the hospital each time, still seizing, and had required aggressive treatment to stop her seizures. The child’s examination was normal, and she was also developmentally normal, so she required no other evaluation at the time. There was little question of her diagnosis or that she required an anti-seizure medication, but when this was suggested, the mother made it very clear that she was not interested in the child taking medications and that she felt the child could be cured with prayer. This was a very difficult situation and Joe began what anyone would have done in that situation which was to begin educating the mother as to our concern for additional seizures, along with the distinct possibility that her daughter could suffer harm or die as a result of continued seizures given the fact that she had already had two episodes of status. Mom was not budging regardless of how hard they were leaning on her, and it was now past our time to depart for Daniel Tewa’s house.

Daniel’s underground Iraqw house

I loaded up the Land Rover with most of our group (Jack was hanging out with Joe for support) and our next-door neighbors, Anil, Izabela, and their two children, Nayan and Avni, and we headed over to the clinic to pick up the other two. We waited while Joe continued to work on the mother, and though she seemed to be close to agreeing to start medications, in the end, she did not take a prescription but did agree to come back for follow up (whether she follows through with any of that remains to be seen). We did eventually pry Joe away from the situation, though not without much angst on his part. Overall, it was an excellent example of some of the difficulties we encounter here as a result of the cultural nuances that exist, and that navigating these may not always be as straight forward as one might think. On the other hand, this same situation could have just as easily occurred at home, though if it had, I think there would have been more support and resources available to us to have handled the situation differently. Decision making here is often very communal and multiple family members, village elders, and others may need to be consulted before a resolution can be found.

Coffee and cake at Daniel Tewa’s home

We were eventually on our way to Daniel Tewa’s home for a visit with my old friend of 15 years, who I have visited with and brought my residents to each and every time I’ve come to Tanzania. I have written so much on Daniel over the years but save it to say he is one of the most remarkable individuals that I have ever met. We first worked together in 2009 when I had brought my two children, and we were volunteering at the Ayalabee primary school nearby Daniel’s home, and he joined us as one of the Ayalabee Village elders. We quickly became close friends and have remained so ever since. Every group of residents and others who I have brought to FAME have gone to visit with Daniel and his family – we had initially gone for dinner until the pandemic came and made it more impractical, and now we visit to have coffee and cake and talk as well as see the traditional underground Iraqw house that he build in the early 1990s as his children had always accused him of making up stories when he told them he grew up in a similar house underground. The purpose of the house was to protect themselves and their livestock, who were corralled overnight inside, from the Maasai who believed that all cattle were God’s gift to the Maasai and that they were only taking back what was rightfully theirs. Leave it to say that Daniel’s stories of early Tanzania before independence, and of the rest of the world, are priceless and his grasp of world geography and politics is equally impressive. I have been honored to know him and to have been considered a part of his family for all these years.

The house that Daniel is building for his grandchildren

Tuesday, September 9 – Interesting cases and a gorgeous walk….

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FAME’s success over the last 15 years has been predicated on a number of key elements, though there are two that I have always found to be the most important from my perspective. There are also those that are clearly mandatory when undertaking a project such as this – the trust that’s built with the community and the sense of family that I have spoken of previously which has been created by FAME and its employees who come to work each and every day to make this a better world. Of the two key elements that are not so obvious, though, first is our volunteer program and emphasis on education, and the second is the fact that FAME is run by an all-Tanzanian clinical staff and can operate completely independent of the volunteer program as we demonstrated so clearly during the pandemic when there were essentially no volunteers save for our neurology program for a span of two years.

45-year-old woman with massive intraventricular hemorrhage who unfortunately didn’t survive

The volunteer program has been an essential component of FAME’s character from its very inception and has continued to attract doctors, nurses, and others from the US and many European countries who come for both long and short-term visits to work with FAME’s clinical staff and provide addition training in their various areas of expertise. It is certainly a bidirectional transfer of information, though, as the volunteers also learn a great deal of information, such as how to practice in a low resource setting, by working with FAME’s dedicated doctors and nurses. At last count, FAME is averaging in excess of 60 volunteers a year in all specialties that continue to provide current practices, though with the continued sensitivity that is always necessary when you are a guest in someone else’s culture and a long, long way from home. That requires an open mind and a willingness to see things through other lenses than our own, as well as the realization that you are not the center of the universe (being humble).

3-year-old child with bilateral subdural hygromas prior to drainage

When speaking with anyone about global health, the conversation will always lead to single concept that is often the most important thing to consider and cannot be overlooked – Sustainability. For without sustainability, all is for naught. The fact that FAME has an all-Tanzanian clinical staff was by no means an afterthought, nor has it ever been something that has been reconsidered as FAME developed through the years. If anything, the philosophy has been increasingly reinforced along the way, and its importance has been continuously demonstrated. When the pandemic hit in March 2020 (while I was here at FAME with my team, by the way) and it became readily apparent that the volunteer program would at least be temporarily shutting down as were the borders and flight patterns throughout the world, having a self-contained medical and nursing staff without the need for outside help became a necessity and a God-send.

3-year-old child following drainage of subdural hygromas with little improvement

Even more apparent, though, was the fact that the training and education that had been provided to our clinical staff over the preceding years had now proven to be key to the success of FAME in the coming years, allowing for the long-term sustainability of a rural based healthcare center (hospital) dedicated to providing patient-centered care for a population where access to healthcare had previously been very limited. Over the ensuing months, as it became increasingly clear that the pandemic was here to stay and would change our lives forever, FAME by was called upon by the government (don’t forget that we are an NGO) to provide the necessary training and education to the other healthcare facilities and workers in the region concerning proper practices, providing further proof that the careful planning and sustainability were essential to our success.

4-month-old child status post VP shunt with massive porencephaly

This morning’s lecture was provided by Dr. Anil, an emergency medicine physician now volunteering at FAME. Anil is from New Zealand and had learned about FAME as these things always go from a friend of a friend of a friend. Ultimately, it involved Dr. Pete and Dr. Amanda, who had just finished a two-year volunteer stint here at FAME earlier this year. Pete and Amanda were from Tasmania and were being funded by an Australian non-profit, NGO that provides support for volunteer physicians. Amanda, an emergency medicine physician, was here following the completion of our new emergency department, so spent her time developing protocols and teaching just about every aspect of emergency care to the clinicians and nurses at FAME. Pete, a pediatrician, spent his time working with our neonatal intensive care unit and inpatient pediatric population. It was sad to see them go, though they had been here for a full two years. Our lecture today had to do with traumatic head injury, a topic near and dear to our hearts.

Following the lecture, we received report on several interesting patients, though unfortunately, we had very little to offer them. One was a young 45-year-old woman who had presented with a severe headache and was found to have fairly massive intraventricular blood on her CT scan. She subsequently decompensated and passed away, though I am doubtful that anything would have changed the eventual outcome – had someone placed an extra ventricular drain (EVD), she may have survived a bit longer, but her quality of life would have been non-existent, and she would not have survived long, regardless.

The other patient presented at morning report was a bit more troubling as it was a child who had bilateral subdural hygromas and severe atrophy (collections of fluid, not blood) on CT scan. Problematically, though, the imaging also demonstrated severe global atrophy and as expected, the child had severe developmental delay and hadn’t met any of their normal milestones since birth. What had been described to me as chronic bilateral subdural hygromas (which, after reviewing their scan I would have agreed with) are essentially spaces between the brain and inner surface of the skull that become filled with cerebrospinal fluid as something must occupy the space in the absence of brain due to atrophy. The key is that it’s not acute and not under pressure in most circumstances. The child underwent bilateral burr holes, which had been recommended, but what normally happens in these situations, and happened here, is that the fluid just reaccumulates as there is nothing else to fill the space (the brain doesn’t bounce back since it’s a chronic compression).

Inpatient consults for the day included someone who had been advertised as a patient with a basal ganglia hemorrhage, though after looking at the image, both Joe and I were equally concerned that this could represent a lobar hemorrhage, something that would have a broader differential and a different workup. Clinically, the patient was hemiplegic, but this did not add anything to our differential, unfortunately. Jack also evaluated one of the patients (an 8-year-old child) in the ward with suspected TB meningitis who had been receiving his anti-TB meds for several weeks, but still looked very, very sick. It would be fair to say that this child’s prognosis was guarded at best.

Perhaps the most interesting patient in clinic today was a young 4-month-old child who had a very significant perinatal history, had seized shortly after birth and was noted to have a large head circumference concerning for congenital hydrocephalus. They had received a VP (ventriculoperitoneal) shunt for the hydrocephalus at 2-months of age, and it was unclear whether they had improved at all following the procedure. They had brought the child in for us to evaluate because the child was not improving after the shunt and continued to have seizures despite a very high dose of phenobarb. We did not have the previous imaging as it had been done elsewhere along with the shunt, and we were concerned as to whether the shunt was fully functional.

On examination, the child could do very little – they were moving their extremities, but they did not otherwise respond. Our recommendation, in addition to decreasing the phenobarb and adding levetiracetam, was to bring the child back to the other institution to make sure their shunt was functioning, but they told us they had done that already and were told it was. The family requested that we obtain another CT scan here at FAME, and we were all quite happy that we did, for it revealed the fact that the child was missing the vast majority of both of their hemispheres, which was the reason for their failure to reach their milestones and had little to do with hydrocephalus. Ultimately, we had a long discussion with the family regarding the child’s very poor prognosis, and that other than trying to help with the seizures, there was nothing that could be done to improve the child’s devastating neurologic functional status or their prognosis. Though we had little to offer the child, we could certainly explain this to the family and try to prevent them from going to another healthcare facility looking for answers.

We finished clinic early enough to head out on a hike through the fields behind FAME before sunset. The region here is gorgeous with rolling foothills bumping up to the edge of the Ngorongoro Conservation Area that rises more abruptly and eventually meets the crater rim. There are lots of animals in the conservation area, and they will on occasion come down from the slopes, so it is important to be alert. Cape buffalo are very aggressive, but would rarely chase a human here, though not the same for the occasional leopard that comes down from the hills. There have been sporadic leopard attacks in the area over the years, but walking in numbers would drastically reduce the likelihood of any unwanted encounters. Our walk was lovely as is always the case here. The weather over the last few days has been beautiful – cloudy and cool in the mornings, strong equatorial sunshine by midmorning, and a high in the afternoon in the upper 70’s with low humidity. You really can’t beat it.

Monday, September 8 – Our first day of clinic and a new EMR….

Standard

To say that physicians have a love-hate relationship with electronic medical records (EMRs) would be gross understatement. Several years ago, I had truly wished that I would be retired long before EMRs had become the norm, but alas, that was not to be. Somehow, and much to my surprise, I had come to terms with that disappointment and had implemented an early EMR into my group practice back in 2009, the first year that I had visited FAME. Several years later, after my move to Penn full-time, I had once again been thrown into the fire, having to learn a tremendously more complex EMR (Epic) that I would eventually become friendly with, though the recent introduction of AI to the mix has certainly placed that relationship in question.

First day of school (Jack was on his way from the airport)

There is little question that having an EMR for purposes of documentation and charge capture (the latter being the original driving force for early databases and computer physician order entry, or CPOE systems) is essential to maintaining a viable health system, both financially and medically, though the amount of pain and suffering that is inflicted upon those struggling to become proficient in the face of a normal everyday schedule can often be overlooked and underestimated. Very much to FAME’s credit, an EMR had first been introduced here in September 2020 (imagine doing this right in the middle of the pandemic), and though there were clearly significant growing pains, the clinical staff at FAME rose to the occasion (as did I, though not willingly) and adopted this new technology over time. Unfortunately, that EMR ended up not being a good fit and, despite working with the company to modify certain attributes over four years, it was clear that a new system was needed. Converting to the new EMR has not been without significant growing pains and regardless of where I’ve seen this process undertaken, it has always been a struggle between continuing to provide the necessary medical care while learning a completely new system of data entry. Despite having superusers and coaches available, it always comes down to getting the job done with the patient sitting in front of you, whether in the exam room or the hospital, and having the extra burden of learning a new system that places additional stress on an already stressful situation.

Despite a good night’s sleep after our two days of travel half-way around the world – colloquially known as a slog – (everyone was in bed by 9 pm last night), it was still difficult to get out of bed this morning given how cozy I was with the cool air coming through the window and the lovely songbirds filling the air with their music. Mornings here, regardless of the weather, are just invigorating and it’s a wonder why anyone would live anywhere else. As it was our first day here, I would bring everyone to morning report at 8:00 am to introduce the team members to the FAME staff since they would be working together for the next several weeks. Jack was still on his way here, having traveled through Istanbul from NYC, and would be arriving late tonight with Patrick arriving tomorrow afternoon to Kilimanjaro International Airport, spending the night at the airport lodge and getting to FAME on Wednesday morning. There were a bit more moving pieces (or people) this trip than normal, but I’m confident that all would work out. Morning report went smoothly with the most important thing being to get there early enough to get a seat, otherwise you’d find yourself standing outside with your ear to the window – not a good option for me considering I hear out of one ear only ever since my episode of labyrinthitis nearly ten years ago.

Jack and Zahura evaluating a young patient

Although there were no interesting neuro patients presented at morning report, we did catch wind of two of two TB meningitis patients who were in the ward from one of our fellow volunteers who had been here for the last several weeks. TB meningitis is a devastating and often fatal comorbidity in untreated HIV positive patients, though, I’ll have to admit that I’m not sure I’ve seen a patient here previously with TB meningitis, or at least I haven’t diagnosed one. Our HIV burden in this region is rather low compared with other areas of Africa, and most patients who are HIV positive here are on treatment to prevent such complications.

We were scheduled this morning for an orientation session for the group, and specifically for learning the new EMR, though since only Cat had used the old system, it wouldn’t be a matter of having to unlearn one thing and then learning another. Additionally, given how small our current group is and the fact that the next group will be even smaller, it may mean that I would have to start seeing patients along with the residents. That meant that I would need to know how to use the EMR as well (heaven forbid), something I have done my very best to avoid in every situation outside of Penn where I’m working with the residents such as the community clinics in Philadelphia as well as here at FAME. As expected, everyone, including me, seemed to pick up the new EMR in short order, and given that reception had been sending over patients to be seen by us since opening even though we weren’t supposed to be starting until 1:00 pm for the day, we began to see our first patients shortly after 11:30 am. The patients all seemed to be difficult diagnostically today, both those with neurologic disorders and those with diagnoses that belonged to some other specialty.

Cat and Julian evaluating a young patient

Two sisters came in who were 6 and 9-years-old, that were both quite unusual and had predominantly motor delay (they seemed to be cognitively intact) and on examination had bulbar issues with dysarthria, cerebellar dysfunction, and myelopathic features that were quite suggestive of something like a spinal cerebellar ataxia, of which there are now more than 40 different variations, and counting, of these genetic disorders that run the gamut of hereditary transmission. Simply known as “SCA,” they can occur with onset at virtually any age, and all have specific characteristics to help identify which one you’re dealing with, though ultimately it is with genetic testing that will help to identify each specific entity. Unfortunately, we have no genetic testing here and other testing such as a CT or MRI scan could potentially help with the diagnosis but will not impact the management of each of these disorders. We asked the sisters to come back in several weeks when we would have to pediatric neurologists here (Natalie and Leah) who could potentially weigh in on their diagnosis.

Cat and Jack pounding coffee beans to remove the second shell

After work, we decided to run into town to exchange some dollars for Tanzanian shillings, something that had previously been a very simple exercise, but since several years ago after it turned out that most of the “change bureaus” were laundering money, you now have to go to a bank or one of a few exchanges where you need to have your passport to make the transaction. It was still early after leaving the exchange and we decided to take a drive up to visit Phillipo and his family to possibly buy some ground coffee for the mornings. Phillipo’s coffee farm is now a regular stop for my group and it’s always such a joy to visit him and his wife, Fausta, along with their children, though I am quite partial to Eliza, their daughter, who met on our first visit there four years ago and she was four years old.

Joe and Julian’s turn at pounding

Phillipo remains as one of the smaller private coffee farms in a region that is dominated by massive coffee plantations as far as one can see often in every direction. Though his family had originally been growing maize, it was a continuous battle with the local wildlife to save their crops which is why they eventually began to grow coffee. In the early years, he would harvest his coffee, and have it sent to other plantations to be processed and roasted, but he now does all of this himself along with his family. The beans are picked by hand, then shelled in a hand grinder where the outer shells are removed and the beans are then put into water and fermented. After that, they are placed on drying racks, then pounded to remove the inner shells. They are then winnowed to remove the chaff, at which time they are placed in the cannister to roast by hand for 45 minutes, then cooled and sifted one more time to remove any debris at which point they are ready to be packaged into half kilo bags as whole beans or ground first and then bagged. Phillipo’s coffee is the absolute best tasting in the area and just the fact that we’re able to participate in the processing makes it even more worthwhile.

In addition to the coffee beans, though, there are dozens of bee hives hanging in the yard which are occupied by stingless bees that fly back and forth to the forest to gather pollen to bring back to their specific colony and produce the most flavorful honey that has a hint of coffee in addition to the forest flowers they are pollinating. We’re of course served a sample of the coffee from a French press to taste before we buy, though watching the entire process, there seems to be little question of what each of us is planning to do. We had gone to buy some ground coffee for the house but left with an additional twenty bags of whole bean to bring home for ourselves and for gifts.

I had originally learned of Phillipo from the woodcarver, Mbuga, who has a small shop just next door, and it was only proper that we make a visit there to look at all the carvings in addition to the lovely paintings by Athumani Katongo, an artist who I have known for a number of years and have always brought my residents to visit him and look at his artwork for sale. I fell in love with high bright colorful depictions of animals that he paints on a canvas he has prepared that is a collage of colorful kitenge cloth squares. The work is lovely and I had always been happy to have my groups buy paintings from him, but several years after we first met, I discovered that he was helping some of the children in the area that were living on the street by teaching them to draw and paint so they could possibly have a vocation or at least something to earn them some money. One of these boys had worked with us for several years while going to clinical officer school and is now working in Mto wa Mbu at a clinic. I had liked Athumani before and now it was clear why.

Jack and Phillipo at the cooling bin after roasting

We drove home in the dark on one of my shortcuts across a small creek that gave everyone a bit of excitement and even more so when we proceeded up the steep ravine that doubled as a road. We made it home well after sunset but had a very enjoyable evening out that was entirely spontaneous, making all that much more fun. Tomorrow would be a full day in clinic.