Sunday, September 20 – And on the seventh day….

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Those who know me well, and particularly my family, will be the first to tell you that I am not one who has any intention of sitting around idly when there are places to explore and things to see. This has been the case with me in Africa since the very beginning and I cannot recall for the life of me a day in which I had decided to just stay put and relax. Well, mostly relax I should say. The typical work schedule here has always been six days of clinic and then we would have “safari Sunday” in which I would take all of the residents and whoever else we could fit into the Land Rover to one of the game parks nearby and spend the day on safari. That would typically mean leaving FAME at around 5-6am on Sunday, arriving to the park bright and early so as best to catch all of the animals before the sun was too hot, and then driving around the park typically until late afternoon and then back home. That would mean a 12+ hour day of driving for me along bumpy roads while keeping my eyes peeled for animals the entire time and constantly starting and stopping the vehicle when we were viewing lest the engine noise or rumble distract from any photography or videos. Don’t me wrong, now, for this is perhaps my absolute favorite thing to do in the whole world and it will be a cold day in hell before I ever plan on giving it up. Had anyone ever told me that I’d be doing this at some point in my life, I would have immediately started evaluating them for an encephalopathy (inside joke) or thought they were psychotic with a complete lack of reality testing.

So being here alone, with not only my residents, but no other volunteers as well, for the first time in forever, I had the rare opportunity to spend the day in the Raynes House, by myself, mostly relaxing or at least not spending my day at the wheel of an oversized SUV that seats nine comfortably, or more if needed, and drives a bit like a tank with wheels. The prospect of this possibility, that is to have an entire day to myself in this amazing place, was a bit overwhelming for me, though I knew with firm discipline and planning I could probably pull it off successfully.

I was up quite early, for I wished to text with someone back home who I knew would likely be fading fast in the twilight hours given the seven hour time difference. I knew that I would be able to take a nap later given my lack of a schedule and despite the fact that I didn’t think life was actually possible without deadlines or an agenda, I somehow managed to accomplish all that I hadn’t really planned. I played my classical music and opera that no one I usually travel with would tolerate and after several cups of tea, I finally decided to have my breakfast of avocados, tomatoes and bell peppers with scramble eggs and toast. Yes, it was truly a glorious morning and I was going to make the most of it. I followed up breakfast with my very first nap in one of the three hammocks I have here as I immediately discovered that I wanted a to every just lay in a hammock, there would have to be more than one when living in a household of five or six individuals.

Now don’t get me wrong, a day of total relaxation for me does include some busy work on the computer, but it’s still relaxing for me when it’s not on a schedule and if something doesn’t get done, it’ll just get done later. I managed to work a bit on my blogs, took care of some of my patient messages back home, read, and just basically did some busy work that needed getting done. I had originally planned to go to Gibb’s Farm for lunch by myself, but ended up deciding that even that was more of a chore than I wished and ended up cancelling my reservation. For those of you who know Gibb’s Farm and my love for the place, you can imagine the significance of my skipping an opportunity to visit this spectacular place with it’s fantastic gardens and lovely veranda with view of Karatu and FAME far below. I will admit, though, that part of my decision was also based on the fact that Gibb’s has been particularly careful about allowing outside guests who are not staying there with the hope of reducing  the risk of someone bringing in coronavirus, and I felt a bit selfish going there just so that I could relax and have a nice lunch.

All in all, it was a wonderful day and even though I didn’t leave FAME in search of adventure for an entire day when I had the opportunity to do so, the world didn’t come to screeching halt and life continued on as normal. I was also grateful that I had some time for self-reflection that is all too often missing from our lives. And, oh yes, that nap in the hammock was truly awesome and I look forward to doing it again soon.

Saturday, September 19 – A quiet day and another bike ride…

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Saturday has always been a quiet day here at FAME, though without our normal neurology outreach program, it has been quieter than normal and today was no different. I took the opportunity to come in a bit later than normal as I was still battling my cold, arriving to the normal night doctor’s office, which is doubling as our neurology clinic, at around 8:30, our normal starting time. The fact that there were no patients waiting there for me was a pretty good indication of what the pace of the day was going to be and it gave me a chance to catch up on some of my busy work that had been piling up. Kitashu and Joel were already waiting to register patients and get their vitals, and Revo, who had just graduated from medical school and will be starting his internship in November, was waiting with them for the patients to arrive.

Joel (at the computer), Kitashu (with charts) and Angel checking in patients for neuro clinic

As I believe I had mentioned before, FAME is in the process of implementing a new EMR that will be a huge undertaking, and having just begun on Monday, I am at the front end of the learning curve with all the other doctors here, though I have been through this process on several occasions before. In fact, when I had just started my training as a neurologist at the University of Virginia in 1986, they had elected to install one of the very first pre-EMR systems, which was known as SMS and was from Siemens, though was merely a “physician computer order entry” system that was designed really for capturing charges rather than maintaining a patient’s medical record. I only mention this because, at the time, this was cutting edge stuff that even though it is now nearly 35 years later, the EMR is still the bane of every physician’s existence. Every physician, that is, unless, of course, they are employed in the industry or in some way their job performance is heavily based on using and promoting the system in their workplace. That being said, I have actually become a proponent of these systems which can function very well as long as there is the realization that there are limitations on what they can and can’t do and everyone must have realistic expectations.

At UVa in 1986, I was actually a member of the resident group that organized a strike against the university, refusing to use the new system until they proved to us that it could be used efficiently. I and seven other residents were brought to the Medical College of Virginia, where they had also recently adopted the system, and assured ourselves of its usefulness before we were willing to allow its implementation in our institution. I hadn’t realized at the time, but the event had been written about and published and it was not until years later that I was telling someone the story and they commented that they had remembered it from one of their information systems journals.

Sunset from the veranda

The EMR that is now being installed at FAME will have the means of tracking and recording patient’s history, symptoms, examination, laboratory testing, diagnoses, medications and procedures during their visit here and will be available for recall at any time in the future. There will always be growing pains when implementing these types of systems and it is imperative that feedback from the users be captured and utilized going forward to continually improve upon on operations. I hadn’t gone through the formal training process, but as part of the implementation process, there were IT folks who have been her this week and will also be here the coming week to help with things and, thankfully, they were available to me as well to help with my understanding of the EMR. There were a number of suggestions that I had for them in regard to making data entry more efficient for the doctors and I met with them today to discuss some of things I had noted that would be helpful.

One positive thing for me was already the fact that I found out that the system was web based meaning that, for one, I could use the system on my Mac. This was of huge importance as I had been bothered all week by the fact that the keyboard they were using in my office had an extra key next to the “z” key in the lower left corner, making the shift key smaller. While typing, I would continually hit this key and then have to correct it, greatly slowing my typing down due the frequent errors I would make by striking this key. I could now simply use my MacBook Pro laptop on my desk in the night office and here no issues with mistakes while typing or, at least, they were markedly reduced.

Sunset from the veranda

The other issue that became immediately apparent with the EMR was the diagnoses that were used in the system. When I tried to put in “Parkinson’s disease,” I could not find it, but it did have “Parkinson disease.” The same thing occurred when I looked up “Alzheimer’s disease” and “Bell’s palsy.” I have never seen these disorders referred to before without their possessive apostrophes and I was certain that there must be an error somewhere in how they had been uploaded to the system as there really could be no other explanation for such an obvious omission. I scheduled a quick meeting with one of the IT folks to get to the bottom of this and, when I mentioned to him about obvious error that had made, was told that they had merely loaded into the system the 2015 WHO ICD-10 list of diagnoses. This couldn’t actually be true, of course, as surely the WHO could not have made such obvious errors in their listing of these common diagnoses, but much to my surprise, this was indeed the case that these diagnoses were listed in this manner on the WHO website when researching their list of diagnoses, not only for the 2015 version, but also for every later version as well. I have still not had time to research this issue, but can assure you that I will find an answer. For now, though, I will be using the WHO 2015 ICD-10 diagnoses here at FAME and will have to be appreciative that at least we now have an EMR, with or without an apostrophe.

Having finished with our patients by lunchtime (around 2 pm here), and having met with the EMR fundi (expert), I was able to head back to the house and relax for a bit before heading out for another bike ride. I tried laying briefly in my hammock, but unfortunately, the sun was already high and the limited cover of the roofline had been lost for the day. Given the equatorial rays here with their incredibly intense nature, I decided to spend only a few minutes in the hammock so as not to cook myself. My ride today would be in the opposite direction from town on a back road that we often walk along for exercise. The road very quickly deteriorates into essentially two deep ruts with a small raised section in the middle that works well if your balance is good. The ruts are so deep that they are impossible to pedal, so staying clear of them is essential. I came to a very steep downhill portion of the road which, if I went in the opposite direction, would lead to Caroline’s house on the top of a hill overlooking the coffee plantations that occupy the hills leading up to the Ngorongoro Conservation Area. Remember years ago, taking my then Land Cruiser up the hill and at a very acute angle and Megan Richie thinking for certain that we were going to die. I believe Ray Price had similar concerns last September with my driving, but alas we were all safe in the end which is what counts. As I told him then, that’s what these vehicles are built for.

Riding through the fields outside of Karatu

Taking the downhill section at a fairly rapid pace, I passed three young boys who were playing alongside the trail and one of them chose to run after me as long as he could. Though I have not completely quelled all of my apprehensions regarding this new sport for me (recall that I am normally pedaling at high speed on a flat surface without obstacles such as rocks, ruts or plants), I was able to quickly outpace the young boy which did not require a tremendous amount of effort on my part. At least the boys got a big kick out of chasing after the mzungu, even if it were only for a very short distance. It was a gorgeous day and I had a general idea of where I was heading and, this time, I had brought a water bottle for my thirst along the way. Also, there were no cars to kick up dust as they had yesterday on the FAME road. I made my way along the trails until I happened upon the road to the Manor Lodge which is easily recognizable with its two tall and pure white square columns placed at most of the intersections to clearly identify the route to this high end lodge. There road, of course, is dirt and the intersections are hardly ones that would be identified as such by anyone from home. They are nondescript and, if it were not for the columns, the route could be easily overlooked if one were either trying to get back to the tarmac or heading up to the Manor Lodge for a meal.

Capturing my ride on Strava

I finally made it to the tarmac, though quickly realized that I had several hills to ascend before arriving to the outskirts of town and the FAME road that I would take home. Thankfully, the bike is equipped with all of the gears I had previously mentioned as they were an absolute life saver. To say that I made it up the hills with a minimum of effort would have been a complete fabrication because it actually required everything I had to keep myself moving forward. I would have given anything for one of those newer, fancy bikes with the electric motor assist to have made it look much easier, but that was not to be and, so, I ground it out with anything but the form of a Tour de France rider, eventually finding the top of the hill and none too soon. I coasted off of the tarmac and onto the road leading to FAME, though now had to contend with the dust clouds from the vehicles passing in both direction, though infrequently. Had it not been for the vision of a nice cold shower awaiting me at home, I’m sure that I would have crumpled in a heap somewhere along the road, hoping to have been rescued indignantly by a passing bijaji driver. Instead, I made it safely home, no worse for the wear, and made a beeline for that life renewing shower I had envisioned.

 

 

Friday, September 19 – Still battling my cold….

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It had been a rough night with my cold, though digging through my cabinet I had managed to find some cough suppressant/expectorant in my bag of those “just in case medications” that also includes those for any traveler’s diarrhea or stomach upset of any kind which is not to uncommon here. I will admit that the cough suppressant was outdated by about a year, but those kinds of things have never stopped me in the past, nor would they now, and the very worst would be that it wouldn’t work for me. I will have to admit that I felt a bit better in the morning, even with the rough night, and I was off for another day of clinic as the patients would be expecting me and not showing was really an option that I did not wish to consider at the moment. Having no lecture this morning, I did know that I could sleep in a bit as we wouldn’t be starting and the few extra minutes of sleep were quite welcome to say the least.

I made my way up to clinic as ready as I could be for the day and, thankfully, there was not a mob waiting to see me. It was a smattering of follow up patients as well as few new patients for the day. Again, as I was going to be by myself this trip, we had made the decision not to do our normal outreach to the community, or any outreach for that matter, and to just have patients contacted for follow up or those new patients that were being referred from the other providers at FAME. There were several very interesting epilepsy patient as is usually the case, one of whom was being referred from Dr. Caren and was a young woman with new onset seizures. Dr. Caren has had the opportunity to work with us on only a few occasions in the past, but the assessment she had provided for this patient several days earlier was one that would have easily belied that fact, for it contained all the necessary information for a detailed evaluation of a seizure patient and it was only for my having been here that she did not initiate treatment at the time. To be honest, there was very little for me to ask or add to her assessment and her preliminary diagnosis was spot on so that all that was necessary was for me to choose the proper medication to place her on. As she was planning to have a family soon, we chose lamotrigine as it has the best pregnancy data of all the antiepileptic medications and is reasonably available here. I can’t tell you how rewarding it was for me to have read Caren’s note from the earlier visit as it was a clear indication of the impact we have been able to make here and why we need to continue our work.

Kitashu helping translate for a young boy who is Maasai and speaks only Maa

As I am sure everyone has realized in this time of the pandemic, supply chain issues have been a problem on all fronts and in all regions. I had planned on my return in March to do some work on my 13-year-old Audi that, for those who know me, is a possession that I am very attached to and am very protective of. It has been the most incredibly dependable vehicle that has served me well and, with its manual transmission, can no longer be replaced even if I wished to do so. With now over 165,000 miles, I decided to replace some of its suspension with upgraded aftermarket parts and found that ordering them would be a chore as most of the manufacturers in the US had a very limited stock on hand with reduced manufacturing schedules. In the end, it took over three months for all of the parts to arrive and the project could not be started until everything had arrived.

With the impact that coronavirus has had manufacturing, employment and the economy, it is not surprising that the availability of many common items have become very limited since this all began. Now, consider what effect that same process might have on an already fragile limited supply chain economy that already exists in most low income countries and you can already guess that necessary items such as medications might become difficult to obtain despite the lesser impact the pandemic seems to have had outside the US. This problem has already come up on several occasions with fairly common medications that we use here for our neurological patients. On one such occasion, a patient with epilepsy who has finally been very well controlled on levetiracetam (Keppra) was unable to have his medication refilled by us due to the fact that we have been unable to obtain it, but hopefully will soon. I received a call from our pharmacy regarding another patient with an essential tremor for who I had prescribed propranolol to tell me that they were out of it. Being their typical incredibly helpful selves, they had suggested perhaps choosing another antihypertensive medication that they had in stock though I informed them that we were using the medication for an entirely different purpose. They would check on Monday morning and hopefully it would be available soon.

Kitashu has a way with everyone, but especially the young children he encounters

The supply chain for medications has always been a bit tenuous here and a problem that we have encountered over the years, but is even more significant now. This has been most apparent in some of the medications we use to treat the neurological disorders that we identify here like epilepsy, Parkinson’s disease and other related movement disorders. Between this not too infrequent lack of availability of these medications and their often high prices, maintaining our patients on long term, otherwise effective therapies can often be quite difficult and none of this has anything to do with patient compliance which can be an entirely different matter altogether.

Taking medications on a regular basis for chronic illness is not a fact of life here in regard to societal or cultural norms. Patients are quite familiar with taking medications for a problem such as malaria, worms or a transient GI issues, but when it comes to taking medications for diabetes, hypertension or epilepsy, the understanding that these are chronic disorders that are not cured by their treatment, but rather controlled, is not a general concept here and, therefore, the amount of education that goes into explaining to, and quite possibly convincing, a patient that they will need to quite possibly take their medication for a long period of time can often be immense. FAME has created a recurring clinic for chronic illness that manages many of these patients and education is a huge component of their success in maintaining a patient’s compliance on a therapy.

I saw a patient the other day with panhypopituitarism that Dr. Gabriel had diagnosed and had on thyroid replacement and was feeling completely back to normal and very well. The issue came when he told me that he wanted to stop his medication because it had worked and he was now better. I spent the vast majority of our visit with him trying to explain that the reason he felt better was because he was taking the medication and that if he stopped it, he was quite likely to return to the state he had been in previously when he had originally sought our care. I used every analogy I could conceive of and am not sure I had ever truly convinced him, finally instructing him to see Dr. Gabriel in follow up to discuss the issue further, hoping that Gabriel might have more success than me in keeping him on his medication. Meanwhile, we checked his thyroid studies which were improved from those that had been earlier which was quite reassuring.

My cuddly lunch buddy.

Our clinic ended early in the afternoon and given the nice day out and the fact that I was feeling a tad better, I decided to go for a ride on my new mountain bike. As many who know me, I have become nearly religious about riding my road bike, often alone and sometimes with friends, along the Schuylkill River Trail as long as the weather would permit it and there was still light to be had. During the pandemic, without the opportunity to engage in other social activities with friends, riding has occupied much of my spare time and, in doing so, I have noticed an obvious and expected improvement overall in my riding times as I track my progress on every ride. Prior to leaving on this trip, I was averaging 100-150 miles per week, and the thought of not riding for an entire month was something I did not wish to consider, necessitating the purchase of a bike here in Tanzania. Having only a road bike here would be rather difficult given the lack of paved roads, so a mountain bike made tremendously more sense to me and eventually led to the acquisition of a very nice bike that I would have been thrilled to find in the US.

Not having completely recovered from my cold, I decided to take a gentle ride to town down the dirt road I’ve become so familiar with over the last ten years driving to and from FAME countless times during each visit. Knowing that I was planning to ride here, I did bring some equipment with me, most important of which was a spare helmet that I had at home and would work perfectly for me here. I also brought some riding gloves, tools, a mountable pump (I use CO2 containers at home, but were worried they would allow them on the plane) and riding gear (a few extra bibs and jerseys). So, I suited up, hopped on my new bike and started down the road to Karatutown. It was so nice to finally be riding here and I was thrilled to be seeing the road from a completely different perspective than what I normally do driving Turtle up and down these hills.

I did come to realize several things on that first ride, though. First, it is just incredibly hilly over here and despite the fact that my new bike has 30 speeds and could probably climb a tree in the lowest gear, it was a struggle for me to get up a few of these hills. Second, it is the dry season right now meaning that the roads are terrible dusty and any passing car will leave a cloud of this thick red clay dust for me to inhale into my lungs as I rode along. And third, not having brought a bottle of water with me was a serious error and, had I been riding further this day, could have easily have been a disaster. It was for lack of planning, mind you, as I had a water bottle set aside to bring with me, but was unable to fit it into either of the duffels and had planned to look for one here at some point. So, I continued my ride to town, constantly taking my hands off the handlebar to wave back to children and murmur “jambo” as I passed, struggling up the few hills I encountered heading to town, but knowing full well that the ride home would contain much more of the up than down. I made it to the tarmac, or the main road through Karatu, and continued on towards the center of town, pedaling away often faster than the bijajis, and finally reached the Tanganyika Farmers Association gas station, a common meeting place as it sits right in the center of all the hustle and bustle of this frontier town.

The ride home was uneventful, other than the massive thirst that I had acquired after conquering the many hills climbing up to FAME, but I had the feeling of achievement. Hopefully it was the first of many bike rides that I would be taking here in Tanzania and both my bike and I had met the challenge, though the latter barely so, and I had immediately discovered that this mountain bike riding was tremendously more intense than my rather flat road cycling at home, meaning that I would need work up this more slowly. Oh yes, did I happen to mention that our elevation here in Karatu is nearly a mile high compared to sea level at home. I guess that could also have something to do with at least some of the difficulty I encountered along my way, though perhaps that’s more of a rationalization than a reality. Time will tell.

Thursday, September 17 – Waking up in paradise….

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It has always been difficult for me to convey to others just how incredibly beautiful it is here in the Ngorongoro Highlands where FAME is located. Essentially everyone I have brought with me over the years has been immediately astounded at the shear magnificence of the topography that surrounds Karatu. FAME itself sits high above the town and is reached by a several kilometer road that in the best of times is rutted and bumpy and the worst of times, nearly impassable due mostly to the slickness of the clay here when it becomes wet. Be that as it may, it is this road that has seen fit to bring me back to FAME each and every time I have come and, for that, I am very thankful to it.

My bedroom at the Raynes House. Notice the messy desk – no different than home😂

The very first thing that I do when I arrive here is to open all of the windows of the house or, to be more accurate, the ones that have screens on them so as not to have a houseful of mosquitos in no time at all, though to be honest, the mosquitos here at this altitude are pretty minimal. As we are a bit over a mile high here, the temperature at night can be pretty chilly, but it is crisp and refreshing to be sure. As I wake up for my first full day at FAME, the weather was a bit overcast breezy and cool, which is often the case but will typically burn off by late morning to reveal a beautiful clear sky and a view of the surrounding vicinity with the crater rim on one side and hills dropping off to the Rift Valley on the other. The house is empty, of course, as I have come alone this time without my normal entourage of residents, medical students and an occasional fellow faculty member. We normally have all the bedrooms filled and are often spilling over into the adjacent houses to accommodate extra bodies. But for this trip, with the ongoing pandemic and the limitations that the university has placed on travel in general, I have come alone to provide whatever help I can to our population of neurology patients.

Somehow, though it’s really not surprising considering the traveling that I’ve done, I’ve managed to pick up a rather typical head cold and thankfully not something more severe such as COVID-19. Everyone here at FAME is masked and it has been that way since the beginning of the pandemic for them. Most of the patients, of course, do not come with masks as no one is wearing them in town, so FAME has manufactured a tremendous number of cloth masks that can be worn by patients and visitors and then washed appropriately. Meals for the staff are now eaten outside and social distancing is the norm which is not the case at all in town and which is very unfortunate indeed. Greeting my friends here, some of who I have known for ten years and see only twice a year, is difficult for me to accomplish without my normal bear hug for everyone. I must admit, though, that I’ve sneaked a few in here and there, but only in the proper situation and never in front of patients. I’ll wear my mask when going into town, but I will be the only one doing so, unfortunately.

My two cabinets where I store my clothes and supplies in between trips

Thursday mornings are reserved for an educational lecture for the doctors and when I have the entire group of residents here with me, they are typically giving lectures on some neurology topic. This morning’s was given by a cardiologist who is Muhimbili and he was talking about rheumatic heart disease, a disorder that is caused by a strep infection during childhood and is seen here in low income countries to a tremendous degree more than in than in higher income countries where the infection occurs much less and is treated far more quickly when it does occur. Interesting, rheumatic fever does have an interest in the neurologic world as in certain cases patients will develop a movement disorder called Sydenham’s chorea and though it is something that is rarely seen in the US, we have seen several cases here that have been dramatic. One such case occurred in 2013 in a young woman who presented with chorea and was very encephalopathic and mute. They sent a video to both myself and Daniel Becker and we simultaneously replied “Sydenham’s!” It’s very important to recognize this as the strep infection must be treated immediately to prevent further heart damage from the infection, and the movements can actually be treated acutely using steroids. It was wonderful save for this 11-year-old girl as subsequent echocardiograms demonstrated that though she clearly had endocarditis, it did not do enough damage to require a valve repair in the future and her movements lessened significantly over time until they were non-existent. We followed her for several years ensuring that she remained on her prophylactic penicillin, but we eventually lost her to follow up as she moved away with her family which was unfortunate as the prophylaxis must continue for many years and I am fairly confident that is not happening.

The living room of the Raynes House

Given the absence of the neurology residents this trip, and in general going forward with this new world order in the midst of the pandemic, it’s become clear that we must develop an alternative mechanism to provide some of the educational services, such as our lectures, that were being provided in person in the past. In comes Zoom, which has now become ubiquitous in our new world as everyone is now quite familiar with this technology whether it be in business, education, or among family members. It has now become the standard for delivering synchronous (live) conferences throughout the world and works well in regions without highspeed internet such as here where almost all of the internet is delivered over cell towers whether you have a router or not. Recognizing this need for an alternative means of delivering our lectures, we have now created a neurology series of lectures that will be given by the neurology residents from Penn twice a month with an additional month case conference lecture where the doctors here can present interesting cases to be discussed.

This evening, we held our very first lecture that was given by Mike Baer, who was here last September, and Jess Fan, who had been scheduled to be here now, but was unable to travel due to the pandemic. After some initial technical challenges (basically figuring out who was serving as host as it was my account, but Mike had signed in as me) the lecture got off without a hitch and was being recorded. The topic was “Assessing the Neurological Patient,” and it was done using case examples. We had about 13 or so attendees that were not only from FAME, but also from the district health personnel and we hope that the number will grow over time. The residents at Penn were all incredibly excited to be participating in this new program and a number of our graduates who have been to FAME were also interested in participating which will be a help as a number of them are on the west coast which will work far better with the time difference. Tonight’s lecture was given at 8 pm Tanzania time, or 1 pm EST, but in the future, some of the lectures will occur at 7:30 am our time, when the usual education lectures are given, but would be 12:30 am EST, yet only 9:30 pm PST. I am so happy that we are able to provide these education lectures as it will further ensure that the doctors here are prepared to recognize and evaluate neurological illnesses, which has been the whole purpose of our being here over the last ten years.

Our kitchen in the Raynes House with an incredible view

Our clinic today turned out to be mostly patients with epilepsy and I have spoken many times in the past of the importance of this diagnosis above all as a place where we can make our greatest impact. Ninety percent of the worlds epilepsy exists in low to middle income countries where there are not only the fewest neurologists to treat it, but also the poorest access to health care and the fewest government dollars dedicated to health care in general. It really does provide the perfect storm to have an illness that exists in its highest percentage across the globe and in a region least equipped to treat it. For this reason, epilepsy has become a major focus of ours over the years, both from the standpoint of emphasizing much of our education for the doctors here on the identification and treatment of these disorders as well as educating the community as to the fact that these are treatable disorders. Some of our most rewarding cases over the years have been those in which we have been able to not only treat a patient’s epilepsy successfully, but have also been able to make a major change in their life.

One such patient was returning to clinic today to see me in follow up and I was greatly looking forward to seeing her. Paula (not her real name) is now a lovely 17-year-old young woman who I had first met in 2011 during one of my visits. She has a history of a perinatal insult, very likely a stroke, and she has severe weakness on one of her sides such that her arm is useless and her leg is only strong enough to allow her to walk, though with severe impairment of her gait. As is so often the case, she had essentially overcome the issue with her weakness and was able to function reasonably well, but her limited problem was her frequent seizures that were occurring as a result of the injury to her brain. They were occurring daily and, because of this, she was not able to attend school which would be a major impediment to her becoming self-sufficient in the future. I see this so often here, children that are otherwise normal developmental and cognitively, who are not able to attend school because of an otherwise treatable problem that just hasn’t been addressed in a fashion that would be successful.

The view out the bedroom window

Not only is there the matter of social and cultural stigmatization surrounding seizures and epilepsy, there is the issue of injuries. Patients can fall and injure themselves severely, but the injury that we see here that has the greatest impact both on mortality and morbidity as well as stigmatization are severe burns. Almost every home here in Tanzania uses open flames to cook, whether it be an open fire or a propane tank with a burner, and it is these open flames that pose the greatest danger to our patients with epilepsy. Frequently, patients will have seizure and fall into the open fire pit or onto a pot of boiling porridge, causing burns over much of their body or just a single limb and leaving them permanently disfigured and disabled. These burns can not only be life threatening from the burn itself or the infection that follows, but when they involve any joint, they will often cause contractures of the skin and soft tissue, making the joint functionless and disabling the patient. I have seen this so many times, both in the acute phase when the patients are in the ward here, but also the aftermath when they come into clinic to see me with their story of having fallen into a fire as a child.

Thankfully, Paula had not suffered one of these burns, for I believe that her attentive family likely prevented this from occurring, but her seizures were occurring so frequently that I had no doubt she would suffer some injury if we were not able to get them under better control. It wasn’t easy, as this was in the early days of my work here and I hadn’t yet spent enough time with the doctors here for them to have felt totally comfortable with seizure management, but we were able to at least make a major impact in the seizure frequency early on to the degree that she was able to return to school. Early on, she was still having an occasional seizure as we were adjusted her medications and it took some effort to make her school understand that she was perfectly fine for her to attend with an infrequent seizure necessitating a few notes from me, but in the end, we were able to keep her in school and her seizures were eventually well controlled. It has now been a number of years since her last convulsion.

One of my roommates. A delightful gecko

Today, Paula is a bright and successful student who is currently in Form 2 (the British system of school) and plans to go on in her studies to become a teacher. I can’t think of more appropriate profession for her as she will be able to make the greatest difference in that role considering the hurdles that she has overcome already in her young life. I am totally confident that she will succeed in whatever goals she wishes to pursue and I look forward to continuing to follow her for many years into the future.

Wednesday, September 16 – Arriving back to FAME….

Standard

I awakened to the sounds of the roosters crowing and dogs barking outside, such an unfamiliar sound for most of the year, but quite commonplace here. It’s either the roosters and dogs here in Arusha at the Temba home, the numerous birds that inhabit the region around FAME, or, when I’m in the Serengeti, often the sound of the male lions trying to locate their pride. These are all sounds I would never have imaged hearing in my previous suburban life, or even my life now in downtown Philadelphia, where the most common sounds for me seem to be the freight trains that run alongside the Schuylkill River and always insist on blowing their horns across the street at the Locust Street crossing. Each and every sound, though, are a part of our lives and make up part of that massive barrage of stimulation our auditory senses receive each day. As for the freight trains, they have become so familiar as not to distract, unless of course I am doing a telemedicine visit from my apartment in which I have to explain to my patient just why it sounds as though a train is about to travel through my den.

It was necessary for me to leave just after sunrise from the Temba’s in order for me to make it to FAME with some hope to fit all of the patients in for the day. I had packed the night before and carried all of my bags, more numerous than I care to admit, into the living room in preparation to load them into Turtle for the next leg of my trip. A long standing tradition here has been for Pendo to get up at whatever time is necessary to make me breakfast despite the fact that I always tell her that it is not necessary. Knowing that it’s a lost cause, though, I certainly did not refuse the eggs, mandazi (small breakfast pastries with little sugar and very tasty), watermelon and small, sweet bananas that she prepared for me in addition to her tea masala that is the absolute best I have ever tasted. Leonard, Pendo and I sat at the table enjoying a quiet breakfast prior to my departure as all of the kids were still asleep, save for Gabby, who joined at some point, but so quiet that I can’t quite remember when that was.

A small house gecko scurrying across the floor after having just eaten a cricket

Ten years ago, on my first return trip to Tanzania, having decided to volunteer at FAME and not knowing how it would change my life forever, I had contacted Leonard to ask him for assistance with my transportation. As you may recall, Leonard was our guide for two weeks when I came over with my children in 2009, and is the one who had actually introduced me to FAME. Leonard had worked, and still does, for one of the best safari companies in Tanzania, Thomson Safari, and over the prior 10+ years, though he had been contacted by past guests, it had never been with the intention of a visit. I don’t recall the exact details of how it occurred, but at some point, Leonard asked me to his home to share a meal with his family and to meet his children. I may not recall the details of how it occurred, but I still remember that first visit like it was yesterday and the fact that at one point, Leonard told me that I was the first white person to have ever eaten a meal in his home and with his family. It is these instances, that come along all too sparingly during our lives, that not only shape who we will become, but will most often also have an equal impact on the others who we share them with.

One of the many hand washing stations placed around FAME

This theme has repeated itself over and over again during the years that I have traveled here and it has not been the result of any long range plan, but rather merely showing an interest in others who we share this planet with and having compassion and empathy for those we meet along the way. For it is through these actions that only good will come and the path you will follow will lead only to success and goodness. Of that, I am certain.

I had intended to leave by 7 am, so a departure 30 minutes late was something of a conquest and I rolled out from behind the walls of the Temba property, as all of the homes here have here, and began my journey to FAME, a route that has now become as familiar to me as any commute I’ve taken in my life.  They live on the east side of Arusha, and to get through town with any semblance of expediency was always an iffy proposition, but in the last year, they have built a much needed bypass around the city for which I am quite thankful for on this morning. Arusha is pretty much like any commercial city you would imagine in a third world country with men pulling wagons alongside the road amidst the congestion of the safari vehicles, busses and trucks that ply the roads. Of course, there are the piki piki drivers also, and the bijajis, the three-wheeled vehicles that came over from India and are an incredible nuisance here, at least to me. And then there are the pedestrians, who far outnumber the vehicles by orders of magnitude, and cross the roads wherever they might find a small opening in the traffic that then quickly disappears. As much as I love the colorful views of Arusha, it is not something that I miss to the degree that I’m willing to take twice as long to get out of the city, and, so, I will be taking the bypass this morning.

FAME’s isolation ward

In the past, there was little in the way of speed limits on the highways, but over the last several years, they have spent a great deal of effort trying to create something close to an organized and, more importantly, safe means of travel on the roads. There are few paved roads once outside of Arusha, and few paved roads in Arusha for that matter, but the one highway that travels in the direction of Karatu, heading west skirting the Great Rift Valley, travels through numerous villages where the speed limit is 50 kph (30 mph) and is strictly enforced these days, and probably for the best. In a region where the domestic animals outnumber the residents, huge herds of cattle, goats and sheep being grazed by the Maasai, are constantly crossing the road and it is not at all uncommon to stop several times in a short stretch to make way for livestock. The same is often true in the villages where herders will be moving their animals back and forth from one side of the road to the other, most often heading to some market to sell some of them.

A pretty blooming bush

The weather was overcast at the start of my drive, but once in the Rift Valley, the clouds parted and a beautiful blue sky loomed overhead inviting me to ascend from Mto wa Mbu (mosquito river) up the steep rift and into the region of Chem Chem (springs) where the village of Manyara overlooks the lake down on the valley floor below. After ascending another steep grade, I reached the village of Rhotia and Rhotia Valley that always so lush and inviting. After passing through Rhotia, I begin the steep descent into the valley and up the other side to reach the town of Karatu where I will be staying for the next month. It has become so familiar to me over the 20+ visits that I’ve had here and the town has grown as well. It is still the dusty frontier town that I first remembered, though, only now there a few three story buildings here and there that weren’t present in the past. Karatutown is the gateway to the Serengeti and Ngorongoro Crater, two of the most famous game parks in the world, known not only for their sheer beauty, but also for their raw and rugged nature.

I drove through town to the turn I know so well and up the dirt and rutted road to FAME Medical that sits outside and above town on the border with the Ngorongoro Conservation Area. I drove past the outpatient department and the reproductive and children’s health clinic on my way to our home, the Raynes House, that sits at the back of the property with the most incredible view that one could ever imagine. Having arrived a bit late, I ran inside, opened my lockers to get my neurology tools and made my way to clinic with unloading a thing from my vehicle. That could be later after clinic. I started right in as I had never left, with Kitashu and Angel checking in patients, Joel taking their vitals, and Dr. Ken and Dr. Revo assisting me with seeing patients.

A hand washing station

We were able to squeeze in twelve patients and still make time for lunch. The big news here, besides all of the changes with COVID-19, is that today was the first day of their EMR implementation. As those of you in the medical field will quickly recognize, EMR stands for electronic medical record and is something that many of us, if given the chance, would run as quickly as we could from as it is an incredibly painful process to make this transition from written charts to a computer based record. Having had the unfortunately luck of being involved with several of these implementations all the way back to residency, in fact, it was something that I viewed with mixed emotions without a question. Many of us in global health long for the days when we can get to our remote clinics so that we can handwrite only what’s necessary and nothing more, but there is little question that this will be a huge advance for FAME and will make things so much more manageable in the long run. Seeing a return patient only once when their paper chart cannot be located is enough to make anyone realized the benefits of having an electronic medical record. In the end, I am looking forward to helping FAME make this transition.