Tuesday, September 22 – It’s off to Rift Valley Children’s Village….

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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.

My crew..Revo, Adam, Christopher, Abdulhamid, and Kitashu from left to right

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.

Revo taking a good history

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.

Revo taking a good history

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.

Adam and Abdulhamid evaluating a patient

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.

A young patient and his mother

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.

A young patient of ours

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.

A severe burn injury as a result of an epileptic seizure and an open fire

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.

Revo doing an exam

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.

Robert and a fan

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.

Arturo, who works with the Rift Valley Women’s Group, and some children

 

Monday, September 21 – The beginning of a new week….

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Despite the fact that I was still battling my nuisance URI from last week, I’ll have to admit that I felt rather rested from my day of R&R yesterday which was the first in a very, very long time here at FAME.  It was the beginning of a new week and we would be heading off to the Rift Valley Children’s Village tomorrow and the day after. I had worked with Dr. Ken last week and this week would be working with Dr. Adam, who I had only just met, but had a great feeling about him as being someone who was looking forward to working with us. Unfortunately, Dr. Anne, who I have worked with closely over many years and was scheduled to work with me for the entire time this trip, fractured her ankle just before I arrived and will be out of commission. It was a significant disappointment for everyone as she has been training as the primary neurology caregiver here at FAME in between my visits and she will be greatly missed during these next weeks. I have no doubt, though, that she will pick right up where she left off when she returns. Dr. Anne had also been scheduled to come to the University of Pennsylvania last May to do rotations in neurology and ob/gyn, but those plans had obviously been sidetracked by the pandemic and will have to wait for another time in the future.

One of my patients

One of our first patients of the day was a gentleman with fairly advanced Parkinson’s disease who was only in his mid 50s and who has already been on carbidopa/levodopa for several years to treat his symptoms. He had been doing fairly well on the regimen of medication that we had him on, but unfortunately, he was often filling his medication at the local duka la dawa, or pharmacy, where they would give him a different formulation of the medication and we not making the conversion between the two correctly. He had been under dosed based on what we had given him previously and he and his family recognized that he had been doing better prior to switching. All it really took was switching him back over to the formulation we had originally put him on and convincing the family, who did not live that far from FAME, to come back here for their refills. When I entered his prescription into the new EMR, though, it calculated out the cost of the medication, which, at the doses he was taking, was extremely costly and something that would be difficult for most families in this community to afford.

One of my patients and his wife

This is a common theme, the inability for patients and families to afford their medications, that we find in very many of our patients who may have been on a medication that was working well, but they either discontinued it or decreased it because of the cost. Though we subsidize the cost of the neurology clinic itself which means that we include the patient’s evaluation, one month of medication and any laboratory testing that may be required in the price of a single visit, we are unable at this time to completely cover the cost of medication when they return for refills. As you can certainly imagine, making a great diagnosis and placing the patient on a medication that effectively treats the problem at hand and then having the patient discontinue the medication due to cost, if not a very effective way to deliver health care. We have been continually looking for ways that we might be able to completely fund the cost of medication or, at the very least, develop a sliding scale payment system that could be determined by assessing the family’s ability to pay for the medication, something that could easily be undertaken by our social workers, Kitashu and Angel.

One of my young patients

Another patient this morning, who had traveled from Arusha to see us, had a very similar issue. Their antiepileptic medication (sodium valproate), which had been working extremely well for them and they were seizure free, was very expensive at the dose required for the patient as it mostly weight based since we are unable to check drug levels here. The monthly cost for their medication at the necessary dose would be 150,000 TSh, or approximately $66 USD, an amount that would be very difficult for most families in Northern Tanzania where annual incomes may be $250 or less. How to structure a program that will also include funding for these necessary medications is the real challenge confronting us today.

One of my long term patients

Despite these challenges, though, we have managed to follow many patients on a regular basis who are doing extremely well with their neurologic illnesses, and many of those include our epileptic patients, who are perhaps the most vulnerable population when it comes to needing their medications to prevent their seizures. For a patient with epilepsy who is well-controlled on a stable dose of their antiepileptic medication, reducing the dose or stopping the medication altogether most often will have very dire consequences in regard to recurrent seizures and risk of injury such as severe burns that I’ve spoken about before.

One of last patients of the day, was a young man with a chronic static encephalopathy and epilepsy who I have cared for over many years with reasonable, though not perfect, control of his seizures. He is severely disabled from his CSE and unable to provide any of his own care, but his parents bring him to see me every six months quite religiously. I remains very comforting to know that you’ve has some impact on patient’s care here and provided some improvement in a family’s quality of life even if that may just be a small amount.

 

 

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.