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

Standard

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….

Standard

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…

Standard

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….

Standard

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….

Standard

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.

 

 

Tuesday, September 15 – And Turtle gets some much deserved repairs….

Standard

I’ve spoken quite often in the past about “Africa time,” but it’s a topic that is always worth revisiting as it encompasses so much of life here on this continent. This concept, of course, is not unique to Africa, nor was it likely conceived here, though I do suspect that if there were ever a World Cup of something akin to nonchalance, we would rank right up there with the best. The antithesis of this, to be certain, is the schedule we keep at home where everything is timed to the minute and to be late for a meeting or an appointment could be considered downright sacrilegious. That’s not to say there are times for that, but in a society where things are tremendously more laid back and travel can be a particularly difficult proposition, it only make sense that one would use a different system to make plans.

I recall a visit to FAME a number of years ago with Danielle Becker when just a few days prior to our leaving for home, there was a massive wall of water that washed down the side of a mountain at the entrance to Lake Manyara National Park, completely severing the only highway, and the only road of any kind for that matter, to get from Karatu back to civilization. And not only from Karatu, but also to the main road to the Serengeti for there was an alternate route to get there, but it would have been at least two days of driving or more to have bypassed this “inconvenience.” Travelers were having to exit vehicles parked on one side of this newly formed ravine, carrying their luggage or, if they were lucky and part of a tour company, have someone else carry if for them to awaiting safari vehicles and buses on the opposite bank of this disaster.

Danielle and I were essentially stranded, as I had a vehicle that I did not wish to abandon, and it wasn’t clear when the government was going to elect to make the necessary repairs to enable us to return. I will have to admit, though, that neither of us was overly concerned about the potential situation of being stuck in paradise as that could never truly be considered a consolation. In the end of course, and perhaps as much to our disappointment as the alternative, the road was mostly repaired enough for us to make our passage and be on our way.

Equally frustrating, and at the time quite frightening, I am sure, was the episode that Glen Gaulton and Sarah Tishkoff encountered when traveling from a remote region of the Ngorongoro Conservation Area, where Sarah was doing research at the time, to FAME to overnight and drop off Glen to spend the week with us. I should preface this by telling you that the single gate leading into or out of the NCA closes at 6:30 pm without exception so that for all practical purposes, missing the deadline means that you get to extend your visit by a day and either find lodging (which is not readily available in the NCA at a reasonable price) or look forward to sleeping in your car on the rim of an extinct volcano at approximately 8000 foot elevation.

Glen and Sarah were scheduled to be here by dinner time and had planned to leave the NCA by closing time, so when the sun was setting and we had no word from them, we began to worry just a bit. Several hours later, we did finally receive some word from their group that they were still coming, but it was not until nearly 11 pm when they did finally straggle in with some incredible stories of having been stuck in several swollen rivers due to flash flooding from unexpected downpours in the area and having had to literally push their vehicle across the river on several occasions. They were all completely covered in mud as was their vehicle and it had turned out that they were granted special permission to pass out of the conservation area after the gate had closed. I have raced towards the gate on several occasions and am quite certain that had I asked for a similar dispensation for my group, we would have just as likely been sleeping with the rhinos in the crater.

I had planned to spend only one night in Arusha and was scheduled to be at FAME today so that I would be well prepared and rested for my first solo neurology clinic in many years. The evening before, though, I had learned that Leonard had actually thought I would be there for two nights and that he had intended to have some work down on Turtle today. Turtle is actually a bit of a hybrid having taken the best parts out of several Land Rover models and, in particular, the engine and gear box are from an older model as they are more dependable, but in the transformation required to fit them together with the remainder of the vehicle, there were some engineering feats that could be more appropriately referred to as patch work. Some of you may recall the episode of driving to dinner at one of the lodges outside of town and having the entire stick shift disconnect in my hand while driving. Yes, that was a result of this engineering marvel and, though frightening at the time, we managed to limp to dinner (we had been invited to dinner at one of the nicer lodges in area and I was not going to pass that up) and then home using on third gear low and third gear high as all I could use to shift was the transfer case.

Leonard informed me that he had planned to have Turtle’s gearbox swapped out for one in better condition, but that it should be finished sometime around noon today. Having been in this position many times in the past, I knew it was likely to take much longer than that and so informed FAME that I was not going to be leaving until early Wednesday morning, but would still plan to see my schedule that day. Sometime around noon I received word that the mechanic felt it would be best to also replace both the pressure plate and clutch while doing the gear box work, which was certainly fine with me, but I knew that this was like to delay getting the vehicle back. So, without a vehicle at home to run errands, I spent the majority of the day with the Temba children and taking a rare midday nap for me. At one point, Leonard’s brother, Jones, and a good friend Vitalis, who has guided me several times in the Serengeti, came by to help me find spare tubes for my new mountain bike as I knew I was bound to get flats. We went to a small bicycle “shop” which was really a small cubby that had a tiny indoor area to work on bikes, but many very classic old frames and bicycles were there and you could tell that there were enthusiasts lurking around in the area based on the number of kids who cruised in on custom bikes that they had obviously built themselves.

The owner of the shop didn’t have my tubes in stock, but, as is usually the case here, made a few quick calls and after perhaps 20 minutes, two new tubes of the slightly odd size I needed appeared to materialize on the street, brought by piki piki (motorcycle) riders and ferried from who knows where. Regardless of how they arrived, I now had my new tubes and was fully prepared for whatever I may encounter on the roads and trails of Karatu. As you can probably imagine, bike shops and supplies are not readily available once I leave Arusha and having someone put something on the bus to get to me is always a questionable proposition as you never know whether the right thing is going to arrive when it finally does. Having these tubes in my hands on leaving town would make all the difference in the world for me.

So, Turtle went off to the “fundi,” or specialist in Swahili, and, in the end, spent the entire day at the shop for repairs. They were able to swap out the gear box, but had then discovered the issue with the clutch and pressure plate as well as a noise in the water pump. These Land Rovers, though simple to work on and fix, and far less expensive in repairs than the alternative Land Cruiser, so need quite a bit of upkeep which I have learned over my years being here. Turtle didn’t arrive back home until about 11pm which meant that I didn’t have much time to test drive it prior to my departure early in the morning as I had patients at FAME to see, but the entire process was quite necessary and, as I’ve mentioned, this is Africa time. Though I was not entirely happy about the situation, my patients would wait for me and we would make do as that is how things are done here.

I had wanted to attend our 4 pm neurohospitalist conference back home which wouldn’t be difficult as it was at 11 pm my time, and though I was a few minutes late, I was able to join in from across the ocean and another continent since all our conferences are now on Zoom or Bluejeans or whatever platform one uses, making life much simpler to be honest. As the mosquitos were particularly thick in the house that night, I sat in my bed under my netting while I watched and listened about the management of patients back home in the hospital, who were undergoing tests that would be beyond comprehension here and using medications that were completely unavailable due to costs. The contrast was quite stark and only reminded me of how far the concept of health equity still has to go. That’s not to say that the medicine that is practiced in the US is the end all as it really can’t be supported financially in the direction we are going, with common therapies costing hundreds of thousands of dollars, but rather we have to develop standards of care that can be justified worldwide, where treatments are available to those who need them and that is not just the “haves” and “have nots.” Considering we haven’t yet settled that question in our own country, where there are many individuals completely without access to healthcare, the quest to do so on an international scale can be seen as a daunting task. Yet, it is this dream of health equity that continues to drive many of us on a daily basis.

Monday, September 14 – Home again…

Standard

It’s always so hard for me to describe the feeling I get descending the steps from our plane in Kilimanjaro. Though I certainly recall the very first time I had done so in 2009, stepping out into the bright sunshine and the densely hot and humid air that is so typical of this tropical region, it has become a far different sensation now on my 22nd visit to this land that has become my home. Had anyone suggested to me at the time that I would continue returning after so many years, I would have thought them quite daft for certain. Yet, here I am, stepping into that very same bright sunshine with all the other visitors, most of who are excited as they are about to climb Mt. Kilimanjaro or depart shortly for their week in the Serengeti, having come for a different reason altogether. Though my travel this time has been quite different than it has in the past, now with the pandemic looming all about us and wearing my mask and face shield during the entire journey, a fact of life that this year will become known for, it has also been the same for many reasons. I have again left behind the familiarities of life as I have known for some 60 plus years to travel here to once again join not only my new-found colleagues at FAME, which has been my primary mission, but also to once again join my new friends and family here.

As is so often the case, I have traveled here with two large duffels not only filled with medical gear that is unobtainable in Tanzania and necessary for the work that we do, but also with items that I have brought for my family here. The Tembas have become my true connection to live here in this country and, along with the work that I do at FAME, the reason that I have continued to return twice annually for the last ten years. It is these connections, that along with the those that I have at Penn and my family in the US, have given purpose to my life, filling any voids that I hadn’t even realized existed.

My new mountain bike

Not only had we arrived to Kilimanjaro International Airport early in the day due to the schedule changes that have occurred as a result of the pandemic, our flight was ahead of schedule and Leonard and Pendo were not yet at the airport. Thankfully, my Tanzanian SIM card worked seamlessly the moment I placed it into my iPhone, accessing the local network and still having airtime left over from my last visit, allowing me to immediately alert them of my early arrival. They were still on their way from Arusha in the early morning hours to pick me up as they have done for all of my prior visits and are my lifeline here as simply getting a ride in this country is not as easy as it may seem. The bulk of my fellow travelers on the flight are meeting up with their safari companies for the very first time and the drivers all have signs they are holding up representing either their company name or the names of the travelers they have intended to meet. I do remember this event vividly from our very first visit, that feeling of surprise and expectation. Leonard hadn’t picked us up at the airport, but we had met him that very next morning at our lodge, and we had instantaneously bonded at our very first meeting, a friendship that has now lasted a lifetime and I have become an honored member of his family.

Gabriel and med

Many of the visitors here have similar experiences with their guides, forming long term relationships that are as more of a patron, but the Tembas have truly taken me into their family and much of the success of my program here has been accomplished with their unfettered assistance. One good example of this has been how they have opened their home to host each and every team of residents I bring, no matter how large, on arrival for their first night in Tanzania. This is not an easy task, to accommodate a group of four residents and a medical student along with myself in their home and prepare dinner for the entire group of weary travelers having just arrived after a full day of travel. Yet they have done so for the last number of years and would have it no other way, for each time that I offer to either compensate them or consider other arrangements, they look at me with the appearance of unimaginability (I believe that is a word) as if I were asking them for something that was entirely unthinkable to them. That is their culture here, for the opportunity to assist is the highest honor that one can be given, and that is readily apparent each visit here, not only with the Tembas, but also with Daniel Tewa, my Iraqw friend, and Kitashu, our Maasai social worker, and every other Tanzanian who we have encountered along the way. To have it any way is virtually unthinkable for them and to even suggest it can easily be taken as an insult. This is what my residents experience on their very first night in this country and it is a lesson that is not only comforting, but it is also never forgotten. Having gone into medicine, it seems only obvious that each of them would be completely receptive to this concept, and though that is true, it is something that can often seem easily overlooked in this fast paced and stressful world of ours.

Over the recent months, I have found that biking has become a welcome release for me and considering that our social lives have become non-existent in this new reality of masks and social distancing, it is an activity that has fit well into my schedule. Not wishing to give them up while here in Tanzania, I decided to search for a bicycle here and was directed to the Arusha Bicycle Company, a business that imports mostly used bicycles from Europe and refurbishes them for use here. Though a road bike would be something nice to have here, the lack of paved roads would make the utilitarian nature of a mountain bike to ride on the myriad of dirt roads and trails a much better choice for me at this point. Through some friends, I was introduced to an incredibly helpful gentleman with ABC, who sent me photos of various bikes and we were able to narrow it down quite well so that upon my arrival to Kilimanjaro, we were planning to head to Moshi, the town at the foot of Mt. Kilimanjaro and where most outdoor enthusiasts visiting here make their home base. It is the opposite direction from Arusha as the airport sits equidistant between the two towns, but Leonard and Pendo were happy to help me out by taking care of this chore now so I wouldn’t have to travel back here tomorrow before departing for FAME.

The house ware shop – Pendo on the left

Despite Joseph from ABC having sent me a message with a map of their location in Moshi, it took a bit of detective work, and a few phone calls, to locate them as there was no sign and their stable of bikes and workshop resided behind a completely non-descript metal door inset in a large solid metal gate, quite typical of businesses here. Once found, though, we were led into a large courtyard that contained dozens of bicycles and an indoor workshop where the bikes are refurbished when they arrive. The bicycle I had chosen was quite perfect and I immediately hopped on the saddle for a few laps around the courtyard to make sure the derailleurs were working perfectly and they were. When they had originally sent me the photo of this bike, I had never heard of the company, but with just a quick googling, discovered that they were a highly respected German company from Bavarian known for their mountain bikes and also having a solid stable of road bicycles. This was just bike I was looking for and I as eager to get it to Karatu where I already imaging my plying the back roads and even taking a ride up to the Ngorongoro gate. I had brought an extra helmet of mine, some riding gloves and several sets of bibs and jerseys to wear. I could not imagine a more perfect place to explore while getting in my exercise, though would have to do my best to avoid any unfriendly Cape buffaloe that I might encounter during my travels (that is not a joke!).

Pendo’s shop

A selection of non-stick frying pans

Once successful in my quest for the perfect bicycle and having loaded it into our vehicle, we were on our back to Arusha and the Temba home. Waiting for me at home were the Temba children who I have known for their entire lives. When I first came to their home in 2010, Lennox was four and Lee was two and both were typical children, never giving me a moment to myself unless I retreated to the solitude of my room. Now they are incredibly well-behaved and mature young boys who are top students in their school in Nairobi, though they are now both home due to the pandemic as their schooling is virtual. Gabriella is now five years old and is a very special child who has always struggled with her weight and speech, only to discover that the tonsillectomy she had done when she was younger had no removed nearly enough tissue and she was still mostly obstructed. Thanks to the help of Dr. Dan in pursuing the issue and having the opportunity to have spoken with Pendo, sight unseen, he was convinced that this was the problem, and in January of this year, she underwent her second tonsillectomy in Nairobi that appears to have been successful as she is gaining weight and her speech is thankfully slowly improving. Meanwhile, Gabriel, the baby of the group and who is now three, is the smartest and most outgoing young boy and who is a total charmer. The four children are just a delight and reason enough to make the journey here.

Pendo’s shop on the second floor of small strip mall

Pendo’s shop logo – Brielle comes from Gabriella

Pendo’s newest venture here has been to open a house wares shop for the local residents of Njiro, the suburb of Arusha where they live. Upon visiting the shop, I was incredibly impressed with the number of wares that she carried, most of which were not even available here when I had first arrived ten years ago. Blenders and mixers, coffee makers and microwave ovens were on the shelves along with a wall full of various and a sundry kitchen utensils that would place any similar shop at home on anyone’s list of places to visit. Of course, my immediate attention went to what I could find for the Raynes House at FAME, or, more importantly, what could I find to make my life more livable over the next month spending it alone in the Raynes House. I promptly chose a very nice non-stick frying pan to make my breakfast in along with a nice flexible spatula. I am more than happy to share my things, but admit that very often these items seem to either wander into the other houses at FAME or simply disappear, so I think I’ll store this frying pan in my locker during my absences. Next were a few nice tea mugs and a set of low tumblers that will be perfect for me to enjoy my gin and tonics on the veranda in the evenings while watching the sun set. I know that it’s a thankless job, but someone has to do it.

All the children sitting around with the new computers (Allan, a close friend sits to Gabriel’s right)

The highlight of the day for me was delivering two well-needed gifts to Lennox and Lee. Their mom had texted me some time ago inquiring into the cost of a laptop computer for each of them so that they could do their home studies as there was only one computer in the family and they were currently doing their schoolwork on iPads that made it difficult for them to do their work. Knowing that it would be an incredible financial hardship for them to purchase these, I quickly realized that I would like to do nothing more than to help the two boys with their ongoing studies and there was no more worthwhile thing for me to do for them. I began to search for two affordable computers, knowing full-well that they had to be identical as the two boys would otherwise fight over what they thought would be best. Leonard and I came home in the evening form an errand and Pendo arrived home shortly thereafter so that it was really perfect timing to give them the computers. Earlier, Lennox had asked me if his mom had conveyed their request for football (soccer) shoes and was clearly disappointed when I told him that she had not. Shortly thereafter, I brought the two computers out of my room and presented each of them with one of the computers, making completely certain to tell each of them that they had earned these devices with their hard work and devotion to their studies. They were speechless and spent the rest of the evening on the couch, each sitting not only in the glow of their computer screen, but perhaps more brightly, the glow of their faces, beaming with a sense of pride and accomplishment and both incredibly grateful. Though these are only small things, they have the potential to change other’s lives, and it is important that we take these opportunities when they are presented to each of us. For it is without charity that the world becomes a dark and inhospitable place and one far less worth inhabiting.

The older boys with their computers

Sunday, September 13 – Flying in the time of COVID-19….

Standard

We are sitting on the tarmac in Doha at the moment, about to depart for Kilimanjaro. I must admit that I was entirely unsure of the what travel would be like during this monumental time of the pandemic, but so far things have been pretty straightforward, albeit very different from the other 21 trips here that I’ve taken. And as usual, there are always some silver linings that we look for amidst all of the natural angst that most of us have nearly become accustomed to at this point. First of all, most of all the normal flight times and routes have become non-existent. The Philadelphia counter for Qatar, once a hub of activity for their daily flights to Doha, has become a ghost town as they haven’t flown there since before we had returned in March. That, of course, was the first of many changes that I encountered while arranging my flights. I had the choice of either leaving early and spending 8 hours in the Boston airport waiting for my connection, or flying west to Dallas, a slightly longer flight, and only spending a few hours in the airport. I chose the latter as once I’m settled on the plane, I’m fine.

My flight to Doha was going to be 14 ½ hours and though I had a chance to upgrade to business class at the counter, I resisted the temptation of a lay flat bed and a premium menu as I was pretty certain that the flight would be under booked. Thankfully, I was correct, and ended up having an entire row of three seats to myself. Not quite as comfortable as a lay flat bed, but it sufficed, and I was more concerned about being able to spread out rather than sleep as many of you may know that I like to work on my flights, which includes writing my blog, rather than sleeping. Though quite long, this leg of my trip was a breeze with a number of meals and plenty of time to catch short cat naps and work in between.

A view of the empty Qatar business lounge in Doha

We arrived to a nearly empty airport in Doha, the hub of the national airlines of Qatar and home to the upcoming World Cup. The airport has been heavily upgraded and has more shopping than a dozen large malls in the US combined. On arrival in Doha, you normally have to trek a half a mile or so to go through security ENTERING the airport, but this has been scraped due to COVID, making the arrival here tremendously smoother, though perhaps less safe for those of you who may a significant concern for these matters. After some quick duty-free shopping (dates, cashews, raisins and a bottle of gin for the gin and tonics I’ve become accustomed to on the veranda after busy day work), I made my way to the airport lounge that I normally take advantage of while I’m here. My normal Qatar lounge was closed in lieu of the much nicer business class lounge that I now had access to and this was a plus as it is much larger and spacious and includes a premium restaurant on the second floor. The lounge was empty and I believe that the employees outnumbered the guests by easily two to one. I showered, worked a bit, and then had a lovely dinner before making my way back down to the business area to do some more work, or, to be honest, mostly texting with a friend and a bit of work on the side.

My dinner at the lounge

As most of you who have followed my blog know, our trips to Kilimanjaro typically include an overnight visit to the market place in Doha, a very classic middle eastern market that reminds one immediately of Aladdin. Qatar Airways has for several years allowed travelers to enter the city without a visa and have provided a five star hotel room for a pittance for all those with layovers that were longer than 8 hours. This was always a highlight for me as it was for the residents as they were all able to spend the night in Doha together and, occasionally, I was able to join them when our flights overlapped. There is also a wonderful locals restaurant I found a few years ago that is outdoors and serves kabobs, yogurt sauce, tahini and the like for very cheap and it’s as good as it gets. Unfortunately, with the changes made for travel in this age of the pandemic, no one is allowed to leave the airport and go into the city for the night any longer. It’s a huge loss for both the traveler and for Qatar with the absence of tourists in the market place, but one consolation is that they have rearranged all of the flights so as to do away with the overnight layovers, no longer necessitating the visit to the city. It’s a loss of culture, but a gain of time as I will now be landing in Kilimanjaro at 7:10 am as opposed to after 2 pm in the afternoon.

I’ve always had a sweet tooth…

So, if you’re into empty planes, empty airports and empty lounges, I guess you’re ahead of the game at this point, but to be honest, I’d rather have it back the other way, even it weren’t for the pandemic, as it just doesn’t feel like the same travel. OK, maybe the empty planes are a huge plus for the traveler, but how long can these companies or our economy sustain this? Qatar, a country with immense wealth, and Qatar Airways, a nationally subsidized airline, is unlikely hurting in the long run, but all of the shops at the airport and market place, the taxi drivers and hotels are undoubtedly significantly impacted by this loss of revenue and I am sure that many of these businesses, just like those in the US, have been unable to sustain themselves in the midst of this ongoing global crisis that seems to have no end.

An empty main atrium of the Doha airport

So now I am on my way to Kilimanjaro International Airport and I will home again in less than six hours. Yes, Tanzania has become my other home and this is now my 22nd trip home to visit my friends, return to FAME and spend time with the Temba family, who children I have watched grow like my own. I guess you may ask what ever possessed me to travel back in this turbulent time, and I would merely ask, rhetorically, how could I not? I have been here every six months for the last ten years and the thought never really crossed my mind that I wouldn’t return this fall. That’s not to say there weren’t hurdles as I now travel under the auspices of the University of Pennsylvania, to the trip had to comply the rules set by the university, which, though not particularly harsh, weren’t necessarily inviting either. Thankfully, the powers that be were all in agreement that my work was considered essential and approved my trip for, had that not occurred, I would have been in a bit of a pickle. I am also a bit of a control freak when it comes to travel and I have always booked all of my own flights, that is, until now. The new rules of travel for the university require that all travel be booked through their contracted travel agents and, in the end, I was able to come to grips with the fact that this would just have to be. I quickly found out, though, that I was the first university employee traveling during the pandemic which meant that the process was entirely new, but after several days of some back and forth to make sure that all of the appropriate boxes were checked, I was approved to fly and my tickets were books.

Some of the shopping and electronic billboards in the Doha airport

With my flights all booked, I only had a few other hurdles to overcome to ensure that I was ready to travel. The first was something that I’ve had to deal with since the beginning and had to do with packing. Simply ordering things from Amazon and having them shipped, something that we all take for granted, is not a possibility in Tanzania, nor, for that matter, is having absolutely anything shipped. There is no postal service to speak of and delivery of a package, let alone intact, is virtually impossible. When I have to send paperwork to FAME for the resident’s permits, I do so by courier and it costs over $100 for a business envelope. So, as you might imagine, I have become somewhat of a mule for things that are needed at FAME, often bringing supplies that are unavailable in Tanzania. The weight of these items can be a bit excessive at times and packing under the weight limits can be a challenge. When we have a group of five or more of us, there’s no problem, but when it’s only me, it can be more a game of Tetris while throwing in the weight limit just for fun.

 

The other hurdle I encountered on this trip, and quite unique to the pandemic, was the need to get a PCR test for coronavirus within 72 hours of my travel. This is a requirement to Tanzania, and probably rightly considering the mess that exists in the US right now. I’ve been working in the clinic essentially full-time since May, as well as a few stints it the hospital on the ward service, but have really not encountered, or been exposed to, COVID-19. That’s probably a testament to the measures that have been taken at Penn, which is certainly a good thing. How I would get my PCR test prior to travel was a bit of challenge, though, and in the end I was able to get it done two days prior to my travel with the results being released literally two hours prior my leaving for the airport. Thankfully, it was negative, as a positive test, whether I was symptomatic or not, would have been the end of my return, at least for this trip.

 

No one ever said that it would be easy and I’ve been up for the challenges over the years, from bringing in a complete EEG machine, to medicines in the past, and now to the pandemic. This journey for me has been exciting and tremendously rewarding and has always brought me far more than I could ever have hoped for along the way. I am a very lucky person to have worked with those who I admire so much and have had the opportunities I have in life and for all of these I will be forever grateful.

Saturday, September 12 – Heading back to FAME…alone

Standard

It seems like it was only yesterday that we were returning from our mobile clinic in Mang’ola and, having received the news from our State Department that we must either shelter in place (not really an option for either I or the residents, though it was quite tempting) or return home immediately, quickly scrambled to find new flights home safely and together. Shortly after returning, the discussion began of how each of us in the global health world had made the decisions we had and, for the global neurology community, the AAN Global Health Section became a forum for not only these discussions, but also how the structure of global health education would go forward into a future where travel was now heavily restricted. Here is the post that I submitted on the forum on April 4, 2020:

From: Michael Rubenstein
Subject: Torn between two homes

As many of you know, I have been traveling to a clinic in rural Northern Tanzania for the last 10 years and have developed a neurology program there training the Tanzanian doctors in the art of evaluating and treating neurological disorders in the community as well as bringing residents from both Penn and CHOP to help with the training and to experience working in a resource limited setting themselves. We have traveled there twice a year (March and September) for a month each time with residents accompanying me since 2013. The experience has been incredibly rewarding on both sides and we now see well over 700 patients a year. The impact on the epilepsy community has been the greatest as you might expect.

We left for our March trip on February 28, in advance of the full force of the pandemic, with plans to spend the month there. As our trips are supported by Penn and CHOP, we had registered with ISOS and had conferred with our global health resources prior to leaving with the expectation that we would be in constant contact and would monitor the situation on a daily basis. As you can imagine, once in Tanzania, we were far safer there than we were in the US in regard to exposure, though that situation changed very quickly at the end of our visit. Once it was apparent that the Covid-19 was going to become a pandemic, and certainly after the WHO declared it, we had to make decisions on a daily basis of whether to return to the US.

I have spent 10 years developing the trust of not only the Tanzanian community, but also the Tanzanian caregivers and clinic that we work with and our clinics are announced well in advance such that neurology patients travels for days to see us and from as far away as Dar es Salaam. In addition to our clinic that we have at FAME (Foundation for African Medicine and Education), we also do a week of mobile clinics in surrounding villages to see patients who are unable to travel to FAME or are unaware that they may have a treatable neurological condition. The mobile clinics are always equally busy our clinics at FAME and I knew that they would be expecting us.

It was with the worsening worldwide pandemic that we had to make decisions not only about our own health, but also those patients that had expected to see us during our clinics, many of who had waited six months to see us in follow up or for the first time. Every day, I checked with our global health center back home to ensure that we were still making the appropriate decision to stay and continue our work rather than come home before it was completed. As the group leader, these decisions were obviously mine to make, though I met daily with the group to make sure that no one was uncomfortable with what we were planning. For the residents and our one medical student, there was the obvious disappointment of possibly having to go home early, and I needed to make certain that disappointment didn’t cloud their decision making in any way.

In the end, we were able to complete our week of mobile clinics from March 16-19, though it became increasingly clear that we were not going to be able to finish our last week there which is usually to see follow up patients and any stragglers who hadn’t come the first two weeks at FAME. The good news was, that I have doctor there who I have now worked with for five years and who we have trained as our “community neurologist” who could see patients for us that last week and communicate back with me for any questions she had regarding their management. Ultimately, when we received word that there was the plan to announce that US citizens either needed to return home or “shelter in place,” it became clear that we needed to return home not necessarily for our own safety, but because the airlines were in the process of cancelling flights to the US and it would eventually become difficult to get home. We were never under the disillusion that being in Tanzania, a country with essentially no available ventilators or ICU level care outside of a very few hospitals, was necessarily a good place to be during a respiratory pandemic, but there was little Covid-19 there at the time, nor is there now, though we knew it would be coming.

Getting home became a bit of a difficulty only from a logistical standpoint as the airlines were impossible to reach by phone from where we were and the websites were all useless in trying to change flights. Thanks to our wonderful Global Health Center, they were able to change our flights for after speaking with the airline, though I did have to purchase a grossly overpriced ticket for one of our members as she had originally planned to fly on a different airline at a later date and there was no way that we were flying home without her being on the same flight with us. Our flights to Philadelphia were ultimately cancelled and the airline flew everyone through JFK, where we rented a car and drove home as none of us was interested in getting on another plane at that point.

Ultimately, we completed the most important three weeks of our work in the face of growing concern for everyone’s safety, but we did so successfully and, I believe, made the correct decisions at the time. There is no question, though, that having remained in Tanzania, or South Africa or Zambia, was not an option given the limited resources there in regard to respiratory support in the event of its need. When I left, it was incredibly sad for me given that I was leaving a medical community and friends that I have worked with for 10 years in the time of crisis and felt as though I was abandoning them, I am sure much as Omar and others have felt in having to return “home” to the US. It once again only underscores the need for health equity in the world when those of us who spend our careers for this purpose have to make these tough decisions for our own health and leave those we love behind in a resource limited setting. My heart breaks for my other family in Tanzania and I am communicating with them on a daily basis, though I know that I can now only my thoughts and prayers.

Michael Rubenstein, M.D., FAAN

 

It was quite clear to me at the time, full well knowing that travel for residents and medical students would be heavily restricted for the foreseeable future, that I must return to FAME if at all possible in the fall. Our neurology clinics have become a fixture at FAME and in Northern Tanzania over the last ten years and, although perhaps varying by a month here and there, have occurred every wet and dry (for us it is spring and fall) season so that our patients have come to expect our return as have the doctors at FAME. It was truly difficult for me to imagine traveling back in the fall to my other home and the patients, families and friends that have become such a part of my life. It won’t be the same without my wonderful residents, who have so masterfully become a fixture there both seeing patients and teaching at the same time as only residents can do so skillfully as they are the ultimate educators in my mind. I merely supervise them and make sure that things keep running smoothly.

It has been seven years since I was there on my own, back when the neurology clinic at FAME and our mobile clinics were first taking form and were a dream of mine. Since then, I have brought countless residents, a handful of medical students, and a few colleagues with me to this amazing place that is a Mecca of healthcare and Shangri La all mixed into one. In their absence, I will make do as I have in the past, though, on a much smaller scale than we have in the past years where we have topped on average 700 patient visits each year. Still, I feel that the trust this visit will instill, not only in the community, but also in the clinicians at FAME, will go a long way towards the continuation of a program that I could have never dreamed would come of my first visits there.

So, it is on this background that I am now traveling back to FAME during the middle of this historic pandemic, facemask in place and loads of sanitizer in my bags, to pick up where I had left off in March, at the very beginning of this monumental crisis. The world has changed forever, as have we, and though we must find new ways to provide global healthcare and global health training both here and abroad, the basic premise remains the same. To develop a system of education in country, whether in person or remote, to train local doctors to work within their health systems to better the health of their communities. This has been FAME’s mission from their conception.