As scarce as it may be to fine neurological care here in Northern Tanzania, it is equally difficult to find psychiatric care and though these patients are often be provided care by a mental health officer for the district, the matter of a detailed assessment and treatment recommendations are, unfortunately, is not made by a psychiatrist. None are available here in the Karatu district and are mainly in the tertiary medical centers that are usually inaccessible to our patients for either reasons of distance or finance. Therefore, when we’re here, much of this work will fall to us as neurologists to get some training in these areas for several reasons. One is that there is a huge overlap in the medications and treatments that we both use, often in their side effects and interactions. The other is that patients with psychiatric disease may often present with neurologic complaints and vice versa, patients with neurologic disease may present with psychiatric complications. The best known and most recent example of the latter may well be NMDA receptor encephalitis or the autoimmune encephalidites in which predominantly young woman present with psychosis prior to going on and developing more obvious neurological complications like seizures and severe encephalopathies.

Today, we saw a young woman who we had seen on our last visit in one of our newer mobile clinics, Mang’ola, where we had diagnosed her with psychosis and quite possibly schizophrenia and had placed her on olanzapine on which she had been doing quite well. As we were not providing our mobile clinics this visit due to the combined situations of COVID-19 and the upcoming election here, the family had traveled well over one hour to see us because of how well she was doing on the medication. There was little else for us to add for the visit, but we made sure to refill her olanzapine given her excellent response to the medication. We also saw a middle-aged Maasai gentleman who we had previously diagnosed with depression and psychosis who was also doing well on olanzapine and who the family had brought in to see us in follow up and to refill his medications as he was doing well on them. These visits are always rewarding.

Perhaps the more impressive case of the day that was of a similar vein, was a young 16-year-old boy with a several year history of quite frank psychotic behavior and no history of drug use or any other possible contributing illnesses. He had done well in school, but these symptoms had begun shortly after graduating from primary school and prior to attending secondary school. He had frank visual and auditory hallucinations as well as voicing his desire to kill people and had been violent in the past. He had been treated with medications previously that were likely neuroleptic medications, but the family had stopped them as they had thought he was cured. Unfortunately, that was not the case at all and from the very moment the boy had entered our exam room with his parents, he never stopped rambling on, most often talking to himself and making very little sense according to those who could understand his Swahili. We could only engage him in conversation very briefly at best, and, when we did, his answers made very little sense to any of us. They did tell us that he never slept at home and also had a family history of a similar problem in an aunt of his. They were completely unsure as to what the name of the medication he had been on previously that had been prescribed by the local government dispensary, but it was quite clear that it was a typical neuroleptic medication as they do not have any others and, besides, he was no longer taking it. We offered to put him olanzapine, our go to antipsychotic, which is also an atypical neuroleptic medication and most often has few side effects. Unfortunately, it is also costlier than what he would be given at the dispensary so we advised them of this and offered to try him on the olanzapine as that cost would be covered by his visit today, though I did give them two instead of one month’s worth of medication. His case was quite consistent with schizophrenia given the age and it was rather heartbreaking to see these parents with their young son who, for all practical purposes, appeared to be possessed and it was not difficult at that moment to see how cultural beliefs of possession were created.

Another interesting case, that did appear at the outset to be totally neurological, but may have had some twists along the way was a young girl who presented in a wheelchair with the complaint of a six-day history of progressive weakness and numbness in her legs and then developed the inability to walk. This is a very common problem that we see in neurology not infrequently and usually triggers what we refer to as a “fire drill” in medicine. A fire drill occurs when the history is consistent with a disorder that can cause harm if not treated properly and quickly or if the diagnosis is not considered and is missed. In neurology, other similar histories that will do the same thing are a patient who complains of the “worst headache of my life,” which is sine qua non for a subarachnoid hemorrhage until proven otherwise.

So, here we are in rural Tanzania, with a young woman in a wheelchair who is giving us a six-day history of progressive weakness and numbness in her lower extremities without back pain and which means only one thing to a neurologist, which is Guillain-Barre syndrome, or acute inflammatory demyelinating neuropathy. The disorder, which is not uncommon, is an autoimmune disorder that is often triggered by a ubiquitous viral illness that precedes it and can progress very rapidly to complete quadriplegia and respiratory arrest, but is completely treatable and reversible. Missing the diagnosis of a potentially life-threatening, yet completely reversible treatment will ruin the day, or very likely even longer, of any neurologist. You hope for the fact that your physical examination may help you out and make you feel more comfortable, but that was not the case here. She had normal, if not brisk reflexes, normal strength and sensation in her arms and diminished sensation in her legs. Her strength in the legs was quite weak, but as I teach to all my residents and medical students, motor testing on your examination is not objective. In cases of GBS, there are no confirmatory tests at this early stage, only ones that will support your diagnosis, and though we could perform one of them now, the lumbar puncture, it would not help us to exclude the possibility of her having it. The other test, the EMG, or electromyogram, can also be helpful, but we do not have it here and, again, it would not rule out GBS at this early stage.

There were also a few pieces of history that made me a bit concerned about whether this was could also be non-physiologic, or otherwise known as a conversion disorder. She had been sent home from school a week or so before symptoms had started for having had hypoglycemia and the other had commented that there were girls at school or who had been sent home with similar symptoms. And her affect was just a bit off for me. So, we had a bit of dilemma on our hands in regard to what to do with her in this setting. One option would be to put her in the ward to watch her overnight and see if she got worse at which point we could transfer to Arusha or to KCMC for more definitive therapy (plasma exchange or IVIG) and the potential of having a ventilator should her respiratory function go south quickly. She had absolutely no shortness of breath or difficulty swallowing difficulty. The other option, and the one we eventually took, was to explain things very carefully to her and her mom about what to look for what to expect. Should she progress in any fashion, they would actually be closer to Arusha from where they were living, which was Mto wa Mbu, than they would be here in Karatu at FAME. It was a tough call, but when explained to the mother and patient, they preferred to go home regardless and would be vigilant in regard to monitoring her over the next days and at any sign of progression they would be already on the road heading to one of the bigger hospitals in Arusha where the proper services would be more readily available.

I think everyone earned their keep this day and there was a good amount of teaching that could be done with the cases we had.

 

 

As I have mentioned before, this trip has been quite unique for me after many years of traveling here with an entourage of residents, medical students and other attendings that require attention to details for others than myself. Don’t get me wrong, as those trips are really the reason that we continue to come, to bring neurological care to the people of Northern Tanzania where there are many patients and little access to this care. By bringing neurology residents from the University of Pennsylvania and Children’s Hospital of Philadelphia to teach the doctors here about the evaluation and management of these patients, we are capacity building in the grand scheme of things and the fact that we are learning as much, if not more, from doing so detracts little from our mission of capacity building in a region where these services just do not exist. Yet the ability to take a step back and to collect my thoughts has been greatly appreciated and has allowed me to spend more of my time connecting with the amazing staff at FAME, many of who I have known and worked with now for the ten years that I have been coming here.

Unfortunately, just before my arrival this month, Dr. Anne fell down some steps and hurt her ankle so has not been able to work with us for the entire visit. If I didn’t know how much she loves neurology, I would have been concerned that she may not have wanted to work with me, but having worked with this amazing and caring clinician for the last five plus years, I am absolutely certain that is not the case at all and had she been in any shape to have been here, she would have done so. In her place, Dr. Adam has worked with me for the last three weeks and has been a very quick learner which is saying quite a bit for neurology, a subject that they is taught very little in medical school here as there are no departments of neurology nor many neurologists to speak of in the country. Adam trained at Muhimbili University, or MUHAS, which is the top medical school in the country and is in Dar es Salaam. This is the same program that Abdulhamid has just recently graduated from and I have been incredibly impressed with his fund of knowledge and clinical acumen over these weeks. He is new to FAME, having joined the staff in April, right in the midst of the pandemic with all of its confusion, but has managed to weather the storm like a champ and is thriving. He will make an excellent “community neurologist,” as I have come to refer to those who have worked with me, for he will have the necessary skills to evaluate and treat patients presenting to FAME with these disorders.

The other two individuals who have worked closely with me for the month are Abdulhamid and Revo, both recent graduates of their respective medical schools (Muhimbili for Abdulhamid and KCMC for Revo) who will be starting their internships next month and have chosen to spend their last free days with me, here at FAME, to care for our patients and learn more neurology. Abdulhamid was born and raised in Karatu, in the shadow of FAME, and many of his family members are currently on our staff as FAME is the largest employer in Karatu. His aunt, Asha, has been the head of housekeeping for years and when he was on break from school two years ago, he decided to come here to volunteer for the month, only to be directed to come and help us with our patient translation. And, as they say in the business, the rest is history. Not necessarily knowing that he had a tremendous interest in neurology when he started, he has now worked with me on four successive trips and has developed not only a keen interest in the discipline, but more importantly, has found that he has the necessary instincts to be a wonderful and capable neurologist in the future. As many of you know, with the help of the Center for Global Health at Penn, he traveled to Philadelphia one year ago and spent the month observing various aspects of neurology. Not only did he thrive there, participating in patient rounds on various services, but he also spend time with our residents and medical students educating them on what medical education and the practice of medicine is like in Tanzania, a perspective that to which they would otherwise never have been exposed.

Likewise, Revo came to FAME over a year ago, having heard of our clinic from somewhere, with a letter from KCMC asking if he could spend the month with here. In principle, FAME has not allowed medical students to rotate on campus as it is outside of our mission, which is primarily to work directly with the staff and to assist them in improving patient care and the health of the community, something in which medical students cannot necessarily participate. Since we were here, it was suggested that Revo work with us and, not to be redundant, the rest is history. With plans to do ophthalmology in the future, neurology was not an area where he had necessarily planned to focus, but now having worked with us on multiple occasions, he has come into his own and can now take an accurate neurological history and can perform an accomplished neurological examination. Not planning to completely abandon his hope to become an ophthalmologist, he is now hoping to pursue neuro-ophthalmology, a specialty that very likely has few in all of the African continent and I am confident that he will accomplish this feat if he still wishes to do so in the future. Watching his transformation from a novice to a skilled neurological examiner reminds us all of exactly why we are in this business of education. Revo truly gets it and watching his face light up with that knowledge is all one needs to see to know that it’s all worthwhile.

One thing I have not mentioned is that both Abdulhamid and Revo passed their examinations after medical school so that they are now both bona fide doctors! That is a huge achievement and they both deserve congratulations for having achieved that milestone. Now, it is off to their internships as their first step in training.

If one were to ever inquire as to why I am here, I would merely point to these individuals and all the others who I have worked with here over the last ten years as an explanation. And that would not even touch the entire other half of the equation, being all of the residents and medical students that have come with me over the years and who have had the chance to experience FAME and Tanzania, and, perhaps more importantly, the people here who are all so happy and grateful for our presence and the care that we provide. Many of those who have come may had already known of their interest in global health and health equities, though many others have come to realize the incredible good that can be done in this arena and have now chosen to pursue it after their visits. And yet others, who may have had different career goals such as research, for instance, may not do global health again in their career, but will be a better clinician and, even more so, a better person, for having spent time here.

Our clinic was a rather slow one, but we did see our normal smattering of epilepsy patients, one of who was a delightful 10-year-old girl who had been well controlled on valproate, but unfortunately, her medication had been discontinued for financial reasons. Having not received her medication for some time, she was, of course, seizing once again and it was incredibly discouraging for us. This is often our most common hurdle to providing necessary care and the one that we are constantly working on ways with which to remedy. Working with an NGO necessitates developing solutions that are quite different than working in the public sector and requires a completely different skillset and resources. We did what we could by supplying the family with a greater amount of medication than is normally given and encouraged them to continue following up with the hope that one of solutions will come to fruition in the near future and enable us to provide a much greater supply of medication specifically for this very unique disease that is so very treatable.

I was able to arrive home in time to hop on my bike and head out, exploring more of the Karatutown region with its incredibly dusty and hilly roads. I found a route this time that took me well beyond the small lake that I had found earlier and ended up riding on small walking paths that pass through local fields, being incredible careful not to damage any of their crops along the way. I’m sure the children in this area, who all waved and greeted me along the way, were a bit surprised to see an older mzungu riding through the fields this far from town, but I’ve always enjoyed doing things a bit out of the ordinary. The area here is perfect for mountain bike riding and even though I’m not the most proficient at it (I’ll have to admit that I’d take my road bike over this any day of the week), I was having a great time and it was great exercise. I only wish that I had been able to do a bit more riding while I was here, but given it was first time, I was pretty proud of myself for having made the effort. I’m sure I’ll do more in the coming years.

Abdulhamid’s mother had invited me over for dinner to their house tonight and, as I have come to learn over my many visits, these are invitations that are significantly meaningful in many ways. Having a guest to your house is something very different here than it is at home. To begin, no one would ever consider having a guest visit their home, regardless of the time, and to not present them with something to eat and typically an entire meal if it’s even close to a meal time. It is considered a dishonor for the host not to do this and I have learned, frequently the hard way, that this practice is taken very seriously. I cannot tell you how many times I have gone to visit someone after having eaten an entire meal at home to then be presented by the host with another entire meal and expected to eat it several helpings. Thankfully, tonight I did not make that same mistake and had a delicious dinner, including nyamachoma specially ordered for my visit, with some of Abdulhamid’s family members. The food and the company were great, though no one other than Abdulhamid and me spoke English, a fact that I was reminded of repeatedly throughout the night regarding my poor Swahili after having spent so much time here. Perhaps someday I’ll spend more time here consecutively to focus more on this deficiency, though I’ll be the first to admit that I have never been very good at languages (to which my family will attest) and even more so in my advancing years.

There is little question that delivering healthcare in a limited resource setting can, and most certainly will, be incredibly challenging regardless of how it is structured or funded. The great success of FAME is partially driven by its accessibility to those in the Karatu district, where most patients can reach us by foot or the occasional public transportation that runs in this direction. Though our neurology mobile clinics are held in the more remote corners of the district and it is certainly more convenient for patients to see us close to their home, they can get to FAME when it is necessary for them to do so, such as for diagnostic testing or even refills of their medications. And then there are those regions where it becomes just too difficult for patients to reach us, either due to lack of transportation or to its cost even when it is available. Loliando is one such place that is near the border with Kenya that is a rough seven-hour bus ride from here over roads that many would never attempt for fear of ending up in a ravine. I visited there several years ago, not to provide any medical care for my permit does not allow me to do so, but to visit a camp that borders the Northern Serengeti and to check out a local hospital in the nearby town of Wasso.

Tarangire is the region that surrounds the national park of the same name and is the home to very many Maasai, similar in nature to the Ngorongoro Conservation Area, though perhaps not nearly as remote. Over the last few years, we have seen more patients from this region, all of who are Maasai, and they have been brought by a Maasai chief or elder who has shepherded their care in a manner that has clearly benefited them. He has organized trip to FAME in which a number of patients have been brought at the same time and today we were planning on a large group coming with him. With his supervision, we have had a far better chance of patients remaining compliant on our medications, but it is still very difficult for them to make the trip too often and we found that a number of them had been unable to fill their medications since their last visit here. They were to have arrived as early as possible so we could make sure they were all seen, but of course, this is Africa, or, as Frank always reminds everyone, “TIA.” Being a neurologist, these letters have a far different meaning in our vernacular as they stand for “transient ischemic attack,” or what some might call a “mini-stroke.”

I was still on quite a high from our trip the day before, but it was back to work and we had several days of neuro clinic to get through before the weekend. I had planned to go to the Serengeti next weekend on my own, but in the end decided against it as I was finding the very low key evenings in the Raynes House with my computer and music quite enjoyable, indeed. Though I’ve been to the Serengeti quite a few times before, it is a very magical place and it never gets old, but it just didn’t feel quite right in the end, so I will plan to visit it next year when the residents, if they are allowed to come by then, as well as with a friend who I hope to share it with. Our first patient of the day was a young boy (not from Tarangire) who we had seen before who was born with a flaccid paraparesis and was completely unable to walk. Unfortunately, he also had a very severe sacral decubitus ulcer (bedsore) that we had recommended they go to Haydom Hospital for since they were close, but they had never gone. It was necessary for us to fully examine his ulcer and it was quite deep and down to the bone, but did not appear infected at all. We sent him over to the OPD for the nurses to clean and dress, but before we did so, Revo noted that he had a tuft of hair in the lumbar region about the ulcer that was very possibly related to his inability to move his legs are he probably had a spinal tube defect that was not severe enough to have required surgery at birth, but had still left him with severely damaged nerves going to his legs. Pursuing this now would have served no purpose as there was no corrective surgery that would help him in any manner and it would have only been for academic purposes that we would have pursued it.

Ultimately, the group from Tarangire did arrive and the fact that there were twelve patients meant that we would have to spit up into two teams to get everyone seen. This had worked well at RVCV, so Abdulhamid and Adam worked together again and Revo and I dislodged our triage team from their space so that we would have another examination area. Two of the patients that we saw were both Trisomy-21, or Down syndrome, patients. Marissa Anto had written a wonderful piece that was published on the FAME website a year ago about a very lovely six-month old baby she saw with the mother and had discovered that there is no word for Down syndrome in Swahili and that these children were often hidden away from society with little care given to their needs. The two adolescent boys that we say were obviously well-taken care of, though we had previously recommended that one of them go for vocational training, but it hadn’t happened due to the cost. The other boy had been referred to the government rehab center where care is free, but unfortunately, the family must stay with the child for several weeks and the cost of such a venture is typically out of the reach for most families. Though we explained to their chief the need for these referrals, and he clearly understood, the issue remained that their families did not have the means to provide these services. Other than checking their thyroid levels, which is necessary as many of these patients are hypothyroid, we had little else to offer them at the moment, but asked them to continue coming back so that we could at least monitor them going forward.

Another of the patients from Tarangire was a young girl with epilepsy who had been doing incredibly well on her medications, but as is so often the case, her family either couldn’t afford her refills or couldn’t get back for them. She was having seizures again and it broke our hearts as she was a very normal child developmentally and the last thing we wanted for her was to have to miss school because of her seizures. The schools here are just not very tolerant of children with any disability and will very often not allow them to be in school. We spend a great deal of time with her parents stressing the fact that she needed to take her medications consistently to prevent her from having seizures and injuring herself. I have mentioned in the past the huge issue here with severe burns secondary to patients falling into open cooking fires when they have a seizure. There is also the issue of SUDEP, or sudden unexplained death in epilepsy, which is a complication seen most often in patients with poorly controlled seizure disorders and one of the biggest reasons that we strive for complete seizure control in patients if at all possible. The tremendous dilemma that we face here regarding the inability to maintain patients on their medications due most often to financial reasons when they have a completely treatable problem such as epilepsy has been one of our most challenging issues and something that we continue to focus on every day.

We had finished our goat roast and had all hiked back to the vehicle to begin our journey back up onto the crater rim high above. Turtle was surrounded by a giant herd of goats, many of which were laying underneath or close by to take advantage of the shade. We handed off my last bag of candy that I had brought to one of the Maasai from the boma who would give it out later so as to prevent a mob scene that would delay our departure. The climb from very near the valley floor to the crater rim is quite steep and as you ascend there is a sense that you are traveling through time as much as you are altitude. In this region, man took his very first footsteps on this planet and the importance of that fact does not go unnoticed.

Along the road, we encountered more giraffe enjoying the thorny acacia that only they can eat with their foot-long tongues. They are truly skittish animals that will begin to run the moment you stop your vehicle and they look as though they are in slow motion while doing so. They are incredibly graceful animals to watch, but the kick of their rear legs can be quite deceiving as it can be fatal for even lions on the attack.

Our next stop was the Ngorongoro Crater Lodge, where a good friend had invited us to stop by for coffee and a tour. The Crater Lodge, as it is simply called here, is known for being the most exclusive lodge in the NCA and perhaps all of Norther Tanzania. It had begun as a hunting lodge in the 1930s and existed as such for many years until, after independence in the early 1960s, it became a lodge for wildlife viewing and not hunting. It is now an enclave of three small “villages,” with a total of 30 rooms, or actually small huts, that have the ultimate in luxury while still maintaining the feel that you are in East Africa. The lodge is frequented by celebrities and others who wish to maintain their privacy and the cost for this is obviously not something that any of us on this outing could possibly afford and certainly not the FAME employees that I had brought here for the day.

It turned out that the Lodge had been closed for the last seven months during the pandemic and that our visit was going to be the first of any “guests.” The staff of the lodge were all incredibly excited to do a test run of their new coronavirus protocols on us before they had to deal with their paying customers who would likely be far more critical than we were going to be. Ladislaus, our host, was waiting for us after we drove through the gate of the Lodge and immediately greeted all of us as we piled out of the car. It had just begun to rain in the area and he had brought a number of umbrellas for us to share on the short walk to the main central building of the village we would be seeing today. As we entered the building, we were again greeted by other employees who carried a tray with soap and water to wash our hands and then another with towels for each of us to dry ourselves before sitting in the plush upholstered chairs and sofas of the sitting room where we were to be served our coffee and pastries.

The word elegance would not fully encompass the feeling that one has entering the Ngorongoro Crater Lodge and that was totally evident as we were attended to by the marvelous staff that were, for the first time, encountering guests in the age of COVID-19. They were, of course, wonderful, and we all enjoyed coffee and tea poured from silver pots into fine china cups along with cookies and sweets that were made by the kitchen for us as Ladislaus answered questions from the others about the Lodge and its history. The views into the crater are spectacular and, as the rain stopped, the clouds seemed to miraculously disappear with a bright blue sky suddenly appearing to everyone’s delight. After we were finished in the main building, though, Ladislaus offered to take us on a tour of one of the nearby rooms so that everyone could appreciate the something of the experience of staying here in this lodge.

All of the rooms have similar, unobstructed views into the crater, both from the king sized bed as well as from the bathroom area where there are picture windows in from of the dressing area and the claw footed bathtub where you can soak in privacy with one of the very best views of the crater floor far below. There are also fireplaces in each and every room as it can get quite cold here on the crater rim which is over 8000 feet in elevation. When we had camped on our original safari in 2009, they had put hot water bottles in our beds to warm them before we retired.

It was clear that the entire group was fully enjoying themselves as this had been an opportunity that none of us would have had most likely if the camp had been up and running so, again, it’s one of those silver linings that have occurred in the face of the pandemic. Everyone was taking selfies and group photos whenever there was a chance to do so, which was quite often, given that we were the only ones there at the moment. This had been a day that none of us would soon forget and certainly not the group that I had brought today and had the privilege to have spent the entire day with here in the conservation area. It is interesting, though, to think of a country in which its citizens are mostly unable to visits these sites (the parks, that is, not the Crater Lodge) of extreme importance in the world and which are national treasures. It is true that the entrance fees to the parks are massively reduced for their citizens, but it is the other costs of a vehicle and fuel that are prohibitive for them. Children are brought here for school trips in buses, but that is a once in a lifetime event for a chosen few of them and they rarely return even if they have been so lucky. Though I have continually wrestled with this dilemma, I was grateful today for having made it possible for my fellow FAME workers to have come and shared this with me.

As we left the lodge and bid farewell to Ladislaus, everyone thanking him profusely for the opportunity to have spent some time there, even as short as it was, we made our way back around the crater rim in the direction of the Loduare Gate at the entrance to the NCA. The chatter and laughing in the back of Turtle were all clear signs that the group had a wonderful day in the crater, of which I had no doubt, but it was still a wonderful affirmation of what this trip had meant to them. Though I normally bring my residents on these trips, to share with them the amazing sights and cultures of Tanzania, there was something quite different in how I felt today, for I was sharing with this group something that was already rightfully theirs and the ability to do this made me happier than you can ever imagine.

Having driven for much of the day, and driving that was often a bit more physical given the roads we were on, I was a bit tired, but had promised Daniel that I would come for dinner tonight after our miscommunication the night before. I dropped everyone off at various spots along the route home and finally made it to the comfort of the Raynes House where there still enough hot water in the kuni boiler (our outdoor wood fired water heaters that are used here) from the morning since I’m the only one staying here. Refreshed, I dressed and jumped in Turtle to head across town to visit the Tewa residence. I have known Daniel and his family since 2009 as he is a village elder of Ayalabe, which is where I volunteered with the kids for several days as part of our original visit here. We had been given the job of doing painting at their school and Daniel was there painting with us, as well as harassing many of the teenagers watching as to why these visitors from the US were painting and they were standing around watching. Many of them pitched in as Daniel can be a force of nature at times and I’m sure that none of them wished to suffer his wrath at some time in the future.

What began as a simple meeting with paint brushes in hand has developed into a long term friendship that has meant so much to each of us. From my first trip back when Daniel invited to his home for dinner, we have spent time together on each and every subsequent visit and I have learned much of what I know about Tanzanian life and culture from him as he was here before their independence and recalls what life was like before that time. But it is far beyond that simple fact that makes Daniel such a special treasure, for he is the most well-informed person I know regarding international events and politics, yet he has never traveled out of the country. His knowledge of US history is often far beyond any of the visitors I bring to his home and he loves to test that fact when we’re sitting outside his home having coffee.

I once asked him what he would think about visiting the US, a place he knows so much about, and he looked at me somewhat incredulously and asked how that would benefit his family and what would be the purpose. In that simple answer, I began to understand some of the differences between our cultures. Life here is very practical and, whether people can afford to or not, travel for pleasure is not something that is on everyone’s mind here. Nor is accumulating “stuff.” When Abdulhamid visited my apartment at home, he was unable to understand why I had so many “things” there, like my huge Native American basket collection that gives me great pleasure in life, but is certainly not something that could be considered practical by any stretch. Walking to dinner one night amid all of the high end shops on Walnut Street in Philadelphia, me feeling very much embarrassed for the incredible opulence that we have, the two of us eventually concluded that the US is a country of “lots of stuff.” Reconciling that view in the grand scheme of things can be very difficult, indeed, and something that I am often struggling with here.

When I had first come, it was always Daniel and I, either alone or with one of his neighbors that stopped by to meet me, but we always had intense conversations on many subjects of life and politics while I was there. In the more recent years, he has insisted each and every time that I bring over the entire group of residents to his home, or to be more accurate, his daughter’s home, to have a delicious dinner with him. This is an event that is one of the highlights of most resident’s visit here, and rightly so, as we have traditional foods of the Iraqw culture, though perhaps served a bit fancier. Daniel shows everyone the replica underground Iraqw home that he built back in the 1990s as a demonstration and has become quite famous as they do not exist elsewhere. He teaches everyone about the original Iraqw culture and traditions for the Iraqw are one of the most populous tribes in this region and make up the bulk of who we treat at FAME along with the Maasai. Simply put, Daniel is a national treasure and a person who I have been honored to spend time with over the years.

Needless to say, it had been an incredibly long day for me and, getting back to the Raynes House that night, I was surely looking forward to some rest that was very soon to come. Tomorrow would be another week of seeing patients here at FAME and I was looking forward to each and every moment.

It is truly difficult for me to recall a day here in Tanzania that was more impactful for me than today. I am certain there have been others in the last ten years, and though some may have equaled, none would have exceeded the sheer joy I received today during my visit to the Ngorongoro Conservation Area. My Sundays here for the last six or seven years have been spent with my residents on our “safari Sundays” in which I take the group to one of the local game parks or to the Crater for a game drive that I guide. On our last weekend, we usually travel to the Serengeti for several nights and, for that trip, I will typically hire a guide given the size of the park and the possibility of a mechanical breakdown miles from any help. For this Sunday, though, I had mentioned to Kitashu, our neuro clinic coordinator, that it would be special to visit his boma and to bring a number of the FAME employees who work with us closely. Other than Dr. Adam, Revo and Abdulhamid, I left the selection of the other participants up to Kitashu since we would be visiting his home.

Kitashu’s boma is on the Crater Rim just before descending off the backside and towards Olduvai Gorge and the Serengeti. He grew up in the NCA and knows every inch of it as well as the Serengeti, where he has traveled frequently on both drives and grazing his family’s cattle. During our past visits, in addition to sharing some of his culture with the residents, they have roasted a goat for us, a tradition that is bestowed on honored guests to their home and something that is very special indeed. He had planned to do the same today for the group I was bringing.

We had planned to meet at 8:30 am to start our journey to the conservation area and it became immediately apparent to me that the day was going to be special when more and more of my friends from FAME continued to pile into Turtle. In the end, I think we had 11 or 12 of us in the vehicle and I was thankful that I was driving as a I had a guaranteed seat for the affair. Though Turtle has only 9 seats, we have often seated more using soda or beer crates with a cushion on top in the center aisle. That there are not enough seat belts in the vehicle for everyone is quite apparent, though considering much of the transport here can be in a pickup bed or hanging on top of a Land Rover, I felt quite confident that we were being safer than most. We drove to the entrance gate about 15 minutes out of town and, with Kitashu’s help, successfully navigated the paperwork necessary for entrance into the NCA. Some of you may have read of my previous woes at this very same gate, but today, things were thankfully quite smooth.

The road that climbs to the crater rim, with its two thousand foot elevation gain, is made up of numerous switchbacks, most of which are quite tight, and the road is just wide enough for two safari vehicles to pass, most of the time. With each turn, you have to look ahead up the road for a truck coming the other direction as there is often not enough room to pass by each other. I very quickly realized the additional weight of everyone as Turtle struggled a bit to make the sharp turns followed by an uphill climb, though with an occasional shift of the transfer case into low, we were able to continue our uphill climb. This drive has to be one of my very favorite anywhere as with the ascent, there are very steep drop-offs into the ravines below where trees seem to climb forever to reach the sky and the forest here is the pure definition of primordial. If a dinosaur appeared around a turn one day, it would not surprise me in the least.

Sitting in the driver’s seat and focusing on the road did not detour me in the least from hearing all the chatter in Swahili coming from the back of Turtle as everyone’s excitement seemingly increased along with our elevation. For most in the vehicle other than Kitashu, they had been to the NCA perhaps once in their life, when they were on school trip perhaps, but that had been long ago and their memories were faint. For Dr. Adam, this was his very first trip to the NCA. We finally reached the crater rim and the crater overlook which is the very first stop one makes after passing through the gate. The vast expanse of Ngorongoro Crater lays before you, ten miles across and two thousand feet deep, filled with vast herd of wildebeest, Cape buffalo, numerous types of antelope, zebra, hyena, elephants and the rare black rhino. It has one of the densest populations of lions in Tanzania as well as other predators such as leopards, cheetah, serval cats and the very rare caracal. It clearly earns its designation as the eighth wonder of the world and a world heritage site and is one of the crown jewels of Tanzania.

From the overlook, we continued around the crater rim with amazing views of the bottom appearing from time to time in breaks of the roadside vegetation. We eventually reached the turnoff for the Endulan Road and the turn for Kitashu’s boma. We drove into the tiny enclave of mud huts and parked in front of his wife’s hut where I have parked before. His brothers and sisters also live here and there were more children than one could count who came out to greet us as we excited the vehicle. Selina and Jennifer, the two women in our group were immediately taken by Kitashu’s oldest sister to be dressed in fancy traditional Maasai clothing and they emerged from her hut wearing the bright blue shukas that I have seen before being worn by the residents on our previous visits here. I was eventually given a bright shuka to wear over my shoulders, but it eventually proved to be too warm for me and came off at the first opportunity so didn’t overheat in the hot sun of the day.

I had asked Kitashu to pick up some gifts for his mother, a practice I had learned several years ago as one never wants to arrive at a Maasai boma empty handed, even if you are a guest. The gifts consisted of rice, soap, sugar and some other staples. Unfortunately, his mother was not at the boma that day as she had made plans before to be elsewhere before we had announced our trip. His oldest sister accepted the gifts on her behalf, though, and I was happy to have done my part as a welcomed guest to the community. The other tradition, though perhaps more recent, is to bring candy, or pipi in Swahili, for the children. I had been certain to pick up three bags of hard candy as I to make sure that we had enough for all the children as well as the fact that we would be visiting another boma for our goat roast. The kids surrounded me as I pulled out one of the bags and it was difficult to tell whether some of them were coming back for seconds before we had assured that everyone had some, so Kitashu quickly intercepted some of the children and played the “candy cop” for a bit to maintain some semblance of organization to the affair and to keep me from being completely mobbed. In all honesty, though, the children were incredibly polite and reserved, though at times, the littlest ones did require a bit of prompting to hold out their hands.

Having survived the candy give away, we all were served Maasai chai in the hut of his one of his other sisters, a delicious concoction of milk and tea along with some spices that would be impossible to recreate at home given all that goes into making it here. The milk is clearly freshly collected each morning from their cows and it is all boiled together over an open flame in the middle of the hut in an open pot. I am sure that the smokiness of the hut only adds to its flavor. After tea, we all eventually said our goodbyes and loaded back into Turtle for our next part of the journey that would take us almost to Olduvai Gorge.

The view from the backside of the crater rim, looking off into the Eastern Serengeti and down to Lake Ndutu, is one of the most spectacular images that one can imagine. The road initially descends rather gradually, but then makes a steep drop towards the distant plain were you first encounter Olduvai and then on to Ndutu. Giraffes populate this region in large numbers and we weren’t disappointed as we quickly spotted several large families, taking a little detour to visit one group that had several babies among them. We continued to descend until Kitashu pointed out a turn off the main road for me to take and there was a relative of his there to direct us to their boma, a short distance from the turn. We parked in the shade under a large acacia tree and then waked a short distance to a dry stream bed where they were preparing our goat roast.

To say that the Maasai use every single part of the goat is not an exaggeration in the least. We all sat in the shade of some trees a short distance from where they were cooking and preparing our feast and in short order, we were brought a large pot full of small roasted chunks of goat meat that were incredibly delicious. I was given my own cup of meat as their honored guest and even though I didn’t want to be treated any different than anyone else there, I knew it was something quite important to them to be able to do it, so was willing to accept it in that context. As we sat eating finishing our first serving of meat, they then brought over other large parts of the goat that had been on spits and roasting over the open fire. With their knives that every Maasai male carries, they began slicing off chunks of meat and passing them around. I have eaten goat like this a number of times before so was very used to being served in this fashion and it was all incredibly tasty.

I walked over to where they were cooking things as I had seen several of the Maasai working furiously at several pots of liquid and wanted to know more about what they were doing. I learned that this was a meat stock made from boiling and then removing a portion of the goat meat that was later eaten, but the stock was then mixed with local herbs, some blood from the goat along with some fat and then served in cups to drink. I must say that I hadn’t had this before, but was determined to try it regardless of what it sounded like. The taste was like a very hearty meat stock and, though it wasn’t the tastiest thing ever, it was quite edible and given the purpose of the soup, which was to help one’s digestion, I was certainly happy to have drank my full cup of it. Not to make you think that I would try anything that was served to me, I will tell you that I had passed earlier on drinking straight goat’s blood mixed with liquid fat as it was not something that I thought I could get down. That delicacy was shared by only a few of the party and certainly not the majority of us.

We all took a short walk at which point we all gathered back near the cook site for what I was told was round two of our feast that consisted of more roasted meat, and though I did eat a little bit more, I was pretty full from round one and relaxed while the rest of the goat was devoured. Sitting there among the thorny acacia and all my Tanzanian friends, including our newly acquainted Maasai relatives of Kitashu’s, it was quite clear to me that this was not just a simple matter of another mzungu tourist out with his guide visiting a cultural boma, but rather an important event among friends and that as much of an honor it was for Kitashu to be sharing this with me, it was an incredible honor for me to have brought his co-workers here to share this with him. Most of them had never before been to a boma, let alone a goat roast, and I had been able to help make this happen for them. It was an event and opportunity that I will never forget and one that will be remembered by all who participated for its significance.

(I will continue the story of this day in part II of this blog post)

I will be the first to admit that the pandemic has clearly affected FAME, but not necessarily in the ways one might have expected. When things first hit, FAME went into action mode immediately and was the model of system change in this very rural portion of Northern Tanzania. They set up training sessions regarding safety that were not only attended by our staff, but also by other district health personnel and were likely responsible for the fact that things were handled so well here in this region where supplies and health services are very scarce. In cooperation with the district health authorities, FAME became an integral part of this areas response to coronavirus and, in doing so, served to provide the community with the very same quality healthcare they have become known for over the last dozen years.

And, most importantly, this was an all Tanzanian response to this natural disaster. Though FAME’s model for years has been to have western volunteers here to assist the Tanzanian doctors by teaching them specialties that are not always available here or to help with surgical training, it has always been the goal that this will be a medically self-sufficient healthcare facility completely staffed by Tanzanians who are providing all of the services. In March, when the pandemic hit the world for real and it became clear that we had to return to the US at once for fear of having to “shelter in place” for months (or longer it now turns out), I left FAME with our mission nearly complete and was the last volunteer to leave. It is now September, and there have been no volunteers here at FAME in the interim, yet they have continued to perform in a superlative fashion, on their own and completely self-sufficient, even in the face of the looming pandemic while still continuing to provide all of the necessary “routine” healthcare that they have been delivering since the very beginning of this project. That could not have been done without the amazing Tanzanian talent that exists here and, for that, they are to be commended, though I doubt that any one of them would consider themselves a hero, yet, quite simply, that is what each and every one of them has been.

So, I was the last volunteer to leave in the spring and have been the very first volunteer to return. There was little question for me what the right decision was going to be regarding my return and, barring taking any absolutely unreasonable risks, I felt the need to return for a number of reasons. Top among them were my patients, many of who I have followed every six months for many years and who would expect me to be here for they are not watching the news each night, as we are in the US, to know the exact nature of this worldwide healthcare disaster. There has been a level of trust that I have spent years to develop with the patients here, who know that I return each and every six months and, to have not returned, could have damaged that trust irrevocably, which was something I simply could not fathom. As much as my patients have come to trust me, though, so have the doctors, nurses and staff of FAME and I felt a strong sense of commitment to them, knowing full well that my simple presence would essentially be a moral boaster for them. Seeing me in the corridors of FAME would provide a sense of comfort to those I have come to know as family and would restore their connection to the rest of the world. Any concern of abandonment that anyone here might have had would be quickly allayed by my simple response of “marahaba” to their greeting of honor, “shikamoo,” as we passed in the hallway each time. Simply put, FAME has weathered a tremendous storm in the most successful manner possible and there is little question of them continuing to do so for many more years to come.

I had hoped for a quiet clinic today as I had been invited to lunch by a good friend at his African art gallery, the African Galleria, that is about 20 minutes out of town in the direction of Lake Manyara. I had been introduced to Nish a number of years ago by one of prior volunteer coordinators and we have stayed in touch since. His gallery is perhaps the largest in Tanzania and relies nearly entirely on the safari company traffic that passes by every day on their way to Ngorongoro Crater and the Serengeti. There are usually hundreds of vehicles that pass, many of who also stop to spend some time shopping. Nish and his brother had just completed a major construction project to develop a wonderful outdoor restaurant as well as major renovations to the inside of their shop so that everything inside and out is now perfect, that is other than the lack of tourists and safari traffic that has occurred since the beginning of the pandemic. There are now signs that some of the visitors are coming back, albeit quite slowly, and no one knows for how long as there are still many concerns about the future of this virus in Africa and elsewhere.

I sat outside with Nish as my pizza was being prepared and we had the place to ourselves. Sadly, there were no other vehicles or tourists for much of my visit there which was a constant reminder of the current time that we are living in right now and the challenges that remain ahead of us. As we sat at one of the tables of his lovely outdoor restaurant, the impact that all of this has had on every aspect of our daily lives was readily apparent, from FAME, to the African Galleria, to the safari companies that are dependent on the tourist travel to this lovely country. All are trying to make do in these times of hardship and some are more successful than others.

I left the gallery to head back up to Karatu on a nearly empty highway that remained such until I was in town where much of life here seems to be at an almost normal pace with the markets full of shoppers and the normal hustle bustle on the streets that is this place I love. You would be very hard pressed to guess that we were in the middle of a worldwide pandemic if you based it solely on the appearance of downtown Karatu, other than perhaps the near complete absence of safari vehicles plying up and down the main street, coming from or going to the Ngorongoro Gate that leads to the Crater and the Serengeti.

It was rather late in the afternoon when I arrived back home to my house and I had originally thought that I would be having dinner with Daniel Tewa tonight, though we had apparently had our wires crossed, for he was actually out of town and had expected me a different time entirely. Faced with the sudden freedom of an entire evening to myself, I chose to do some reading from the book I had started here, King Leopold’s Ghost, the previously untold story of King Leopold II and his quest to own a colony that eventually became the Congo Free State where horrible atrocities and genocide of monumental proportions occurred around the turn of the century. It’s a hard book to set down once you get it started and I look forward to reading more each day. It was a relaxing evening of quiet in the Raynes House that night, far different from the house full of residents that I have become accustomed to on my normal trips here. Truth be told, there are advantages to each, though in the end, I much prefer the latter for having my full team here with me allows us to do the most good, see the most patients, teach the most, and ultimately provide the greatest benefit for the people of Tanzania while also allowing those residents and medical students who accompany me to experience the world of global health and health equity.

 

 

It typically slows down at the end of the week for us, but today was exceptionally quiet and we mainly saw a few follow up patients from Rift Valley that we had seen earlier in the week. These were patients that needed laboratory testing that we don’t have available there (though we used to run a portable lab, but more for medical issues) making it necessary for them to travel here. Thankfully, transportation for the villagers in the Oldeani area near RVCV is provided by the vehicles that are traveling from the children’s village to Karatu several times a day which is a huge benefit for them as they would otherwise have to walk miles to get to the main road and catch a bus. There are no buses that travel to that area for several reasons, but probably mostly the occasional condition of the road which can at times be nearly impassable. We had these patients get their blood work first and then did what was necessary based on the results. One young boy had an essential tremor who we had been seeing for several years, but had never had thyroid testing done that I just wanted to check to make certain that he wasn’t hyperthyroid. These tests are very expensive here, costing 20,000 TSh for each, which is about $8 and would be a bargain in the US by any definition, but are out often out the reach of patients here. Still, when providing these tests as part of the 5000 TSh cost of a neurology visit, you can imagine what it requires in support to run this program. Then, when you add in the cost of a month’s worth of medication, it can become even more costly. Some of the anticonvulsant medications that we use at the doses necessary for them to be therapeutic can become very costly indeed.

Another patient that we saw in the morning was a gentleman who presented with numerous complaints that had accumulated during the pandemic, though had no clear underlying cause or unifying diagnosis. While telling us his story, or actually while telling the others his story as it was all in Kiswahili, it was quite clear to me, and I later found out to the others as well, that he was very depressed and that the symptoms he was complaining of were related to this rather than to any underlying physical ailment. His story continued for a very long time until I finally took the opportunity to step out with the others and explain that though I’m sure he had much to share, we were not therapists and that we could help the patient most by making a diagnosis and treating it appropriate. There was little question that the patient needed counseling, but he also needed an antidepressant medication in the short term at least. We eventually provided him with a prescription for fluoxetine, or Prozac, and explained that it was also very important for him to consider speaking with someone in the near future as well.

We hung around for much of the afternoon waiting to see if any other patients would show, but it remained quiet and I took the opportunity to catch up on some of my writing and emails. We were all planning to meet later that evening for a dinner of nyamachoma, or barbecued meat, that is served usually with French fries (chips) or fried plantains. The roasted beef, or sometimes goat, is incredibly tasty and is one of my favorite foods here. You order the meat by the kilogram and it is also served with hot sauce (pili pili) and salt to dip it into. I was totally looking forward to taking everyone out for dinner, but wanted to get a bike ride in first. I realized that I had sent Turtle down to the mechanic to take care of a few small repairs earlier in the day and hadn’t heard back from him which would be a problem since I was planning to use Turtle not only to get to dinner, but also to pick up some of the people who were coming to dinner.

I arrived home from clinic and got everything ready for an evening bike ride and took off down the FAME road hoping to fine some nice new route to travel through the back streets without swallowing too much dust from the passing cars. The dry season here can be absolute murder for anyone with respiratory problems around here, and even for those without any issues. The red clay dust coats just about anything within several yards of the road so that all the roadside plants have a reddish orange hue which is usually the tint as my beard by the time I leave. Though I had brought most everything I needed to ride here, I hadn’t brought any bandanas to wear and though I had spoken with Phoebe who was pretty sure she knew where to find some, they wouldn’t arrive until the weekend, so I would have to suffer for yet one more ride with more enough gritty dust in my mouth.

Looking at the map of where to ride, I did notice that there was a small lake or pond that was on the southeast outskirts of town, or directly cattycorner to where FAME sat on the map. I traveled through the backstreets and then across the highway and into the backstreets on opposite side of town. I eventually found the lake and sat admiring the scenery when my phone rang and it was Soja, our mechanic, telling me that Turtle was just about finished with all of the work that consisted of more than I planned which is usually the case considering the wear and tear these vehicles take here. I hustled back across town to the FAME road and pedaled continuously, eating dust all the way, to make it home before Soja did with Turtle. I beat him with lots of time to spare, though would have to leave very shortly to pick the others up and meet at the restaurant at 7PM with everyone else.

By this time, I was starving and quite ready for my nyamachoma, though knew that it would be at least another 30 minutes before everything was cooked. That gave time for everyone to arrive, which in the end was about 9 people. The meat was delicious as expected and we had a second round of meat, taking at least another 30 minutes after ordering, to finish things off. I had decided that this would be my treat considering everyone there had something to do with the neuro clinic and the final bill that included all the beef, chips, and several rounds of drinks was 120,000 TSh including a generous tip that was much appreciated by the waitress. That turned out to be a bit over $52 USD for nine people! It was a great evening that was enjoyed by all.

As is often the case in medicine, there can be massive swings in your emotions on any given day. Today was one of those days where we were able to make such a difference with some patients, yet with others, we had little to offer other than empathy and the hope that we had at least allayed some of their fears for the unknown. It is perhaps no different than in the US, that when you give a diagnosis of a disorder that has no treatment or, at best, is symptomatic and not curative, that patients may seek care elsewhere looking for more answers. In a country with a far disproportionate number of specialists, it is easy enough to find another physician to provide this second opinion, or perhaps even many, but here in Tanzania, that is impossible. There are only a handful of neurologists in the country and those that are here are all generalists, like me, though they do not have the ability to send their patients to subspecialists and experts in a specific field as I do back home. Patients that we see here have often been to several health centers or dispensaries before us with the hope that one of them may have some answers for them. They are often misdiagnosed and given medications or therapies that will be ineffective in helping them whatsoever and, at times, may actually be harmful. We have seen this all too often here and it is very sad when it occurs.

So, on this backdrop, our first patient of the day was a young girl from the Ngorongoro Conservation Area who came to us with a history of recent onset seizures that had begun only days before coming to see us. The most disconcerting thing, though, was that her seizures all consisted of a very focal onset with right arm shaking. When this situation occurs, the new onset and significant focality, we become immediately concerned about some sort of mass lesion serving as a seizure focus, despite the fact that her examination was completely normal. At home, she would have been scheduled for a special seizure protocol MRI even before she walked out the door along with an EEG, neither of which are readily, if at all, available here. The family was Maasai being from the NCA and her mother did not speak Kiswahili, though the young girl did, so we had a three way translation ongoing during much of her visit.

We discussed the need for a contrasted CT scan, but unfortunately, they had no way of covering the cost of the study which is often the situation here. Though the cost of such a procedure is far less than it would be in the US (200,000 TSh or approximately $90 USD), it is often still far out of the reach of individuals here and it is common practice for a patient or family to go back to their village to raise the necessary funds. That is more successful than you might imagine as it is culturally unacceptable here to have money in your pocket with a member of your clan in need. Doing so would be an act that you would immediately be shunned for by the village. As I have often explained before, it is also not possible for FAME to offer free medical services for a number of reasons. A not insignificant portion of FAME’s operating expenses comes from patient fees, but even more importantly, in doing so FAME would immediately alienate all the other caregivers in Karatu who actually make a living practicing medicine and in one fell swoop, we would suddenly be caring for nearly 60 million Tanzanians who would flock here to receive their free medical care. That would become an untenable situation almost immediately.

Thankfully, this family was either related to Kitashu or from a nearby boma and he immediately authorized the CT scan to be done while we would work out payment at a later date. I will also add that it is very unusual in situations involving children, that we are not able to find some way to cover the cost of their medical care in some fashion. This is the normal role of Kitashu and Angel as they will sit down with a family and figure something out when it comes to children. We were all relieved to see that her CT scan with contrast was entirely and there was no mass lesion or other abnormality that could be seen as the cause for her seizures. Had we found anything that required treatment, that would have been an entirely different matter in regard to how the cost of future medical care would be handled. There is a government pediatric cancer hospital in Dar es Salaam that does treat children free of charge, but it’s a matter of the family getting to Dar and then their housing while they’re there that must be worked out. It’s not an easy task to figure out healthcare in a country where access is so very limited and fee for service in advance is the rule.

I placed the young girl on carbamazepine given the fact that the seizures were so focal, but noted that we would consider tapering her in a few years to make sure that she still needs the medication and at that time would consider transitioning her to lamotrigine which is safer in pregnancy, but also quite a bit more expensive. It always seems to be a juggling act here in some form or fashion.

My next patient happened to be a 13-month-old little boy who was having significant developmental problems, but more importantly, he was having brief episodes of posturing his arms that was pretty classic for flexor spams during which his eyes would widen in a look of startle. His mother said that these had been going on since he was about 4 months of age and, during the visit, I also witnessed the child to have a number of brief episodes in which he would suddenly extend both of his arms in what I recognized as being fairly classic for infantile spasms. He was completely unable to hold his head upright and his mother also noted that he seemed to unable to see. When I examined him, his head circumference was normal and he was hypotonic, but most importantly, was indeed unable to hold his head up whatsoever. The baby may have responded to the flashlight, but it was difficult to tell and he clearly did not track faces or the flashlight. He did attempt to grasp objects in any manner.

My concern for this baby was that he most likely has infantile spasms which are part of a very significantly disabling epileptic disorder seen in infancy and called West syndrome. In addition to the infantile spasms, children are typically developmentally delayed  and have a typical EEG pattern, though we don’t have EEG readily available here at FAME and I didn’t feel that it would likely change my impression had we sent the child to KCMC for this procedure. There are a number of causes for the disorder, but we have little in the way of capability to test for them here and the child appeared physically normal other than his vision which was clearly impaired. The first line treatment is to use steroids, though after discussing the case with Dr. Dan, it’s very likely that they won’t help given the amount of time that he has been seizing. Still, I placed him on high dose prednisolone and asked them to return in 10 days prior to my departure. There is an antiepileptic agent available in the US that’s helpful for this disorder, but it is far from available here, so we try using a second line agent such as topiramate. The prognosis for this child given his developmental delays, his visual impairment and the seizures is very poor and these children will often develop another severe epilepsy syndrome as they age called Lennox-Gastaut syndrome. Overall, not a generally encouraging outlook for this child, but we’ll see what he looks like when he returns.

And then, adding insult to injury, as if we weren’t already depressed enough, in walks a gentleman sent over to us from Dr. Lisso in the OPD with the complaint of weakness. Abdulhamid was taking his history and after a bit of sorting things out, it quickly became apparent to me that this man was having progressive, painless weakness of his left arm and despite some other complaints that he had, it really boiled down this symptom being the most profound. I had immediate concerns for what we were dealing with the moment this piece of information became clear and mentioned this to the others as they began their examination. Unfortunately, his examination only confirmed my earlier suspicions and he indeed had the constellation of findings that includes both upper and lower motor neuron involvement that define this dreaded disorder. He also had diffuse muscle fasciculations in multiple limbs that pretty much clinched the diagnosis of amyotrophic lateral sclerosis, or Lou Gehrig’s disease.

At home, I would have referred him for an EMG for further confirmation of the diagnosis and could have certainly sent him to Dar es Salaam to have had this study performed, but given his findings on examination and his history, it would really have been superfluous and very costly for him with no chance that it would have changed his management. Though a medication does exist in the US to “treat” this disorder, it merely extends a patient’s life by months at best and is extremely costly so that it is most likely not available in any country with socialized medicine, let alone a here. This disorder is hard enough to explain to patients in the US, where most everyone has heard of Lou Gehrig’s disease, and it was particularly difficult to explain to our patient, though it was imperative to do so and prevent him from going to other health centers for other opinions where he may be misdiagnosed and mistreated. Certainly, we can never be totally sure that won’t happen, but we do our best to prevent it if we can. As I have mentioned before, it is not uncommon for patients here to seek opinions from multiple health centers when they don’t fully understand what is going on or may not be comfortable with what they’ve been told. It is as important for us to make patients feel that they have been fully evaluated as it is to provide them a treatment, and more so if no treatment is available.

Fully deserving a break from the cases we had seen, a long term patient of mine came in that I have been treating successfully for bipolar disorder that I had diagnosed a number of years ago and had placed on lamotrigine. He continues to do well and just came in for refills which he continues to do religiously every six months. I was so grateful to see him today of all days. At the very end of the day, a trauma case was brought into the ED and it was so impressive to see the doctors and nurses in action where only several years ago there had been no ED. The patient had been involved in a traffic accident and had suffered a head injury, so I did stick around to look at the CT scan for them, which was thankfully normal. Having no neurosurgeon here, we would have to send any patient with a subdural hematoma to Arusha to be treated. We’re hoping at some point to train the doctors here, most of who also do surgery, to provide burr holes for these patients when needed.

I took the evening off in regard to my bike riding and was looking forward to signing into our neurology faculty meeting back at Penn as it was going to be a town hall format dealing with all of the current ongoing stresses trying to manage work and home life in the age of COVID. It was a great meeting and I am so happy to be part of a department that is continually discussing this issue as well as the racial injustice we are dealing with at home. Though I am for the moment somewhat insulated here in Tanzania, these are very distressing matters that we will need to deal with as a society and as a department and keeping this conversation in the forefront is the best way for us to overcome these serious issues together.

 

 

 

It was another early morning for me, not only due to the fact that we had planned to leave for RVCV by 8 am, but also because there was a patient in the ward that Dr. Gabriel had asked me to see prior to our departure. This was a woman in her 50s who had been brought to FAME after developing rather rapid onset of right sided weakness by history and who had undergone a CT scan of the brain that demonstrated an enhancing mass lesion in the left frontoparietal region with a significant amount of mass effect and edema. The radiology techs were not yet in so I was not able to view the study myself but based on the report from Dr. Alex, our radiologist in the US reading our studies here, it seemed pretty apparent that we were either dealing with a metastasis or primary brain tumor like a glioblastoma multiforme. She was also HIV positive and without knowing her CD4 count it was difficult to tell whether she was immunocompromised or not as that would certainly impact our differential with things such as toxoplasmosis if indeed her CD4 count was low.

Based on the description of the CT scan, I was pleasantly surprised to find her awake, though she had significant left hemispheric deficits indicating that most of her hemisphere was not functional. She had a left gaze preference, complete right visual field loss, was globally aphasic, had a dense right hemiplegia and, finally, complete loss of any response to painful stimuli on the rights. The fact that she was still awake given her examination with such extensive involvement of the left hemisphere was quite remarkable. I wrote up my consult making the recommendation to place her on steroids given the extensive amount of edema that was seen on the CT scan and we packed up for our departure to RVCV. Later in the morning, I was able to speak with Gabriel about the patient and learned that they were transferring her to Dar es Salaam at the family’s request, but that he would be certain to give her the steroids before she left. The following day, I finally had a free moment to review her scan for myself and was again very impressed that her level of consciousness had been as good as it was prior to her transfer. That is typically an indication that the process has been more of a chronic one as the patient is able to “tolerate” the edema without significant change until one day it just becomes too much and is the straw that finally breaks the camel’s back, resulting in a sudden neurological change in status that appears to be more acute even though the process had been going on for a longer period of time.

The drive to RVCV is, of course, one of my favorites and some of the most stunning landscape one can find everywhere. The region is populated primarily by the Iraqw, one of the two most common tribes that we treat here in the Karatu district, with the other being the Maasai who are most populous in the Ngorongoro Conservation Area where they graze their large herds of cattle, goats and sheep. This morning, the clouds have burned off my earlier than yesterday and the warmth of the sun was a welcome addition and harbinger of another wonderful ahead of us. We arrive quite early, so much so that Katie, the nurse at RVCV, had just prepared her breakfast and coffee thinking that we must still be in transit. There was absolutely no rush for us to get started, of course, and we had the entire day in which to see our patients at a very comfortable pace. Though we had planned to see a greater number of patients today, we were under no deadlines such as the board update call I had from the day prior and we could stay until we were finished.

We again decided to use the two rooms and two teams that we had done the day before and which had worked out incredibly well. For the day, we had about an equal split of epilepsy and headache patients, though we also saw a Parkinson’s patient who had quite significant impairment and was off his medications as they had run out. I was devastated when I learned that somehow our carbidopa/levodopa (Sinemet) supply had been left out of the box of medications that we had brought, but realized that it wouldn’t be difficult to send the medications to him on the following day. This morning, we had actually met one of our patients from yesterday along the road to give her a supply of fluoxetine (Prozac) that hadn’t been available to pack, but had arrived while we were gone. The handoff went without a hitch and is often how things are done here on mobile clinics as no matter how hard we try, there is always the chance that something might be left behind or still on order as we set out for clinic that might only be an hour away by vehicle, but often many more hours by public transport or on foot.

We once again took our break for a delicious lunch made by the house mamas and one of the volunteers had even baked some delicious chocolate cookies that were the perfect dessert for such a day. After we had made it through our day of patients and before leaving, we had decided to visit the duka (shop) where the Rift Valley Women’s Group sell most of their merchandise through. This program is one that has been around for some time in connection with the RVCV and has been a mechanism for training and marketing of items that are made by the women of Oldeani for sale in many of the lodges throughout the Northern Tanzania. Arturo has been helping to manage and grow the group for the last three years and has done a remarkable job, though will be leaving in the near future. I always bring the residents here to buy gifts for home given the excellent cause that the money is going towards and the fact that all of the items are remarkably well made and very affordable for what they are. We had visited the duka yesterday and done a fair amount of shopping, though it was a unanimous consensus that we all visit the shop again today for there were still a few items calling our names. It is such a wonderful project that it is almost impossible not to want to find something there.

Driving home, we all stopped to take a few photos at a spot that not only overlooked the beautiful fields that seemed to go on endlessly into the distance, but also that mountains that formed the eastern rim of the crater and Mt. Ngorongoro, the tallest of them that also lays to the east of the crater. It was a really glorious afternoon with the sun shining strong and a stiff breeze afoot. It was the kind of afternoon that reminds one of all the reasons for coming to East Africa in the first place, and, for me, Tanzania specifically. I was driving a vehicle full of Tanzanians and we were all here for the very same reason, which was to help the residents of Northern Tanzania with their neurological issues while also leaving behind a legacy that would continue to provide this care in my absence. With the group of doctors, nurses and social workers I was transporting this day, there was little question in my mind as to the security of that dream.

Having arrived home at a decent hour with plenty of daylight remaining, I decided to head out for another of my mountain bike rides exploring the environs of Karatu. I have been trying to take a different route each trip just to learn the various areas, many of which I have never been to previously during my many trips here. There is a short cut that I always take to get to Gibb’s Farm and also to Daniel Tewa’s home, so I had set my mind to taking this short cut, but knew that there would be one steep downhill section that might pose a bit of an issue. As I approached the section, I slowed to a snail’s pace and thought that I would just cruise down it slowly, but apparently that was not the tact I should have taken. Shortly after starting the descent, my front tire promptly slipped in some loose soil and down into a rut that crossed up my handlebars and threw me over the front. Thankfully, I was traveling extremely slowly and found that my greatest injury was too my pride, though I did get a rather nasty road rash (though I was not on tarmac) on my right thigh and right forearm. Surely it was a badge of honor for having taken my first spill in my incredibly short mountain bike career, but I was no worse for the wear and got back in the saddle to finish my ride.

 

Our neurology mobile clinics have become a fixture at FAME over the years as I have been doing them since 2011 when I come for my second trip. Unfortunately, due to both the pandemic and the elections here this year, it had been decided long before my arrival that we would not be holding these clinics as usual, the former reason being obvious while the latter reason is a bit subtler and has to do with the fact that FAME must remain as politically neutral as possible in anything that it does and any appearance otherwise could easily be misconstrued by someone. The loss of the mobile clinics would be a blow to the normal work we do here, but then again, I had no residents to share the work with me and the number of patients that could be seen would have been particularly limited compared to the amount of resources required to for the clinics. I was quite thrilled, then, when I found out that we would at least be make the trip to Rift Valley Children’s Village while we were here, one of my absolute favorite places on this planet.

I have long ago lost count of the number of times that I’ve visited RVCV for clinics over the years, but it easily dozens. I’ve told the story of the Children’s Village a number of times on my website, but suffice it to say that it’s a magical place founded by India Howell and is one of the reasons that FAME is here today for it was India that suggested to Frank and Susan that they build their clinic in Karatu and, as they say, the rest is history. The Children’s Village is not an orphanage, but rather a home to about 100 children at any one time, all of who have been adopted by India and her business partner, Peter. The children are her children and they live in the village until they are old enough to go away to college after having received an excellent education at the school next door where India has partnered with the community to create a better learning environment with more teachers. The children have a phenomenal record of passing the national exams and advancing in the educational system here.

FAME has been providing regular medical clinics at RVCV until only the last couple of years and I have been providing neurology care to children there as well as residents of the nearby village. Over the last two or so years, with limited manpower at FAME, it has made more sense to transport patients here than to hold the general medical clinics at the village, but I have continued the neurology clinics as part of our mobile clinic program and it has been very successful. RVCV has always had a nurse to run a small infirmary there and in the recent years, the clinics have been incredibly well organized and efficient such that it has been a pleasure for us to visit and see patients. One other huge perk is that we’re fed a delicious lunch whenever we’re there as they have a number of volunteers of their own who are fed every day.

The village is in the middle of some very large coffee plantations and the drive there is beautiful. We travel in Turtle with all of supplies and head in the direction of the Ngorongoro gate, leaving the tarmac just before beginning the climb up to the entrance to the park. We travel along a ridge top with Iraqw thatched roof houses scatter along the hills heading down into the valleys. As we take a sharp turn, we begin to make our first descent and then up the other side of the valley only to descent again in the direction of a small creek that is crossed before rising sharply up to the coffee plantations that surround the children’s village and school. The village that we used to pass just before entering RVCV has been abandoned as the government is apparently going to build new buildings, but the brick skeletons of the old homes remain and it remains a question of how soon them is going to occur. As we drive through the gates, our patients are all sitting on benches in from of the dispensary portion of the main building, patiently waiting for us even though we have arrived much ahead of schedule.

Not knowing the total volume of patients and being seriously under manned for this visit, I decided to have Dr. Adam and Abdulhamid work together, as I felt that they would most easily complement each other, and then Revo and I would work together so that we would have two rooms working for several key reasons, one of which was that I had a FAME Board phone call that I wanted to participate in at 4 pm. On most of our visits here, we will break into at least three rooms given the number of patients that show up and we typically will have a pediatric neurologist with us to see the younger children that might show up. Today, I gave Dr. Adam and Abdulhamid the task of seeing the young children, after I which I would staff every patient, of course, and Revo and I would tackle most of the adults.

Only just having graduated from medical school and ready to start his internship, Abdulhamid has become incredibly proficient in neurology with his decision to pursue this as a career and I would stack him up against anyone at the same level of training in the US with similar interests. I had no doubt in his ability to teach Dr. Adam the necessary skills of obtaining a thorough neurologic history and performing a detailed neurologic examination, and as they would be presenting every case to me, we would work on the differential diagnosis part of the equation together as a team. While they were seeing their patients together, I chose to allow Revo to essentially evaluate his patients with me sitting in the room while he took his history and then also observed his examinations. Though Revo had decided on a career in ophthalmology, his abilities in the world of neurology have also become amazingly sharp and it was clear to me by the many comments he made that he was finding neurology equally fascinating and rewarding in regard to the ability to use only the history and examination to develop a detailed differential. Watching his reaction when everything suddenly clicked while evaluating a patient would have filled any educator’s heart with joy. I have no doubt that wherever his career leads him, he will always remember these lessons in neurology fondly and they will serve as a great foundation for him in the art of medicine and the differential diagnosis.

We saw a mix of patients from the children’s village and the surrounding community today as well as a mix of new and return patients. So often we see patients with new diagnoses such as epilepsy and are able to begin treatment that will allow them to lead a productive life or finally be able to go to school. Occasionally, though, we make diagnoses that have no treatment and must tell a patient and family that their condition will only get worse over time. This morning, Revo and I evaluated a young boy with Duchenne’s muscular dystrophy who we have seen in the past and have done what we can to make his life a bit easier, but with full knowledge that he will become progressively weaker and eventually succumb to the illness long before he will have had the chance to experience some of life’s pleasures that we all wish for our children.

Despite his illness, he is a normal sized young boy who can no longer walk on his own and is unable to sit unless he is propped up in a chair and, even with that, has a difficult time mustering the necessary body control to stay upright. When doing so, his arms are so weak that he is mostly unable to raise them for any length of time though his mother has assured us that he is able to eat on his own. As is most often the case with these degenerative disorders, patient succumb to medical complications that occur as a result of the progressive weakness such as aspiration pneumonias or infected bed sores from sitting in a wheelchair for long periods of time. The latter is not a problem for this young man, though, as a wheelchair would be very difficult to use here as there are no streets or paths that would provide accessibility, so instead his mother carries him on her back and he thankfully has enough strength to clasp his arms around her neck. Given that he is almost the same size as his mother at 12 years of age, it quite obviously not a tenable situation for much longer. It is very unlikely that he will reach the age of 20. Amazingly, neither he nor his mother really have any complaints to voice to us at this time and we did what we could for them to answer whatever questions they had regarding the present and the future. There was little consolation in the fact that they had clearly accepted this young boy’s fate, which was certainly not as bright as his mother would have wished for him, and if there had been anything that any of us could have offered to change the course of history, I have no doubt that each of us would have done so, but it was not to be.

Many years ago, on one of my solo trips here if I recall, or at least I had seen the young boy by myself before anyone else had arrived, I made the same diagnosis in a young Maasai. I had just arrived into Kilimanjaro when I received a message from FAME that a patient had arrived with a neurologic problem and that they had put him in the ward for me to see whenever I arrived. They told me that he couldn’t walk and had lower extremity weakness making me worry about Pott’s disease, or TB of the spine. What he had was something completely different, though equally devastating. He was a tall and gangly Maasai boy of about 11 years of age and his mother, who was the only family member accompanying him, was incredibly young. I remember taking a detailed history using a Maasai translator and once I went to examine him, realizing that it was not only his legs that were weak, but his arms as well. With his examination being consistent with a muscle disease and given his age and progression, there was little question as to the diagnosis of this young boy.

Later in the day, I sat in another room with his mother and tried my best to explain the genetic disorder that I felt her son had and from which he would continue to worsen and eventually die. Despite everything we have now have in medicine, there was no treatment to provide to him that would alter the course of history. In the Maasai culture, young boys grow up to be warriors, and what I explained to her that morning was that her son would not grow up to become that warrior she may have dreamed he would be. She sat, incredibly stoic on the bed across from me, never once allowing her emotions to get the better of her, though I knew full well that she had understood every word I had given her. I knew that this had to be tearing her up inside more than it was me and that eventually she would need the benefit of someone to talk with, but clearly that was not me. I sent in one of social workers after I had spoken to her and it was a short while later that I had heard the muffled sobbing that I knew would eventually come and I was grateful not only that I had the opportunity to assist in the care of this young boy, but also that his mother had the chance to grieve on her own terms.

Our return drive from RVCV was quite uneventful, other than the fact that we were again traveling through some of the most gorgeous terrain in this already spectacularly amazing country that never ceases to amaze me in it diversity. I made it home in plenty of time for my 4pm Board update call and after that, took off on another bike ride to end my day. I spent the evening reading and doing busy work, preparing for another day tomorrow as we would be heading back to RVCV for a second and busier day.