Neurology

The Strength in What Remains

 Dr. Michael with a little patient, Photo by Ali Mendelson

Dr. Michael with a little patient, Photo by Ali Mendelson

By Neurologist, Dr. Michael Rubenstein

I am taking today's blog title from an amazing book by Tracy Kidder about a young medical student who survives the genocide in Burundi to find himself in the United States. It's a true story and so as not to give away too much I will suggest that you find a copy and read it. The inspiration for today's blog, though, is another amazing story of strength and hope here in Northern Tanzania.

Our very first patient of the day was a young woman who had recently been diagnosed with epilepsy and was on a medication that she was not taking on a regular basis. Thus, she was continuing to have seizures. After taking our history and examining her, though, we had some concern for the type of epilepsy she had and felt that an EEG would help to sort it out as the medication one uses is often dictated by the type of underlying epilepsy the patient has. We brought her over to the ER which is serving as our makeshift EEG lab for the time being and the epilepsy team hooked her up for a study. She was patient No. 1 for this groundbreaking technology at FAME. Amazingly, she had exactly the type of epilepsy that IS NOT well treated by the medication she was taking and she was converted over to a medication more effective for her condition. In fact, the medication she was on can sometimes worsen seizures for patients with her condition. This could certainly make the difference between well controlled and poorly controlled epilepsy which would make all the difference in the world for this young woman.

We saw an early tremor dominant Parkinson's patient who we had not seen before - Dr. Thu was incredibly excited since she will be going into a movement disorder fellowship next year and this was right up her alley. We saw another stroke patient who I first saw in 2011 and continue to follow up with on a regular basis even though he has continued to do well. The hardest thing here is to get patients to remain on their long term medications, though, as it is just something they aren't used to doing. We had wanted him to remain on aspirin but he had unfortunately stopped it several months ago after his prescription ran out. It is not due to non-compliance, or lack of adherence as they now refer to it, but rather that it's just something that isn't build into their culture at the present time. We'll continue to work on that.

So now for the story that inspired the title for today. A woman was brought to FAME today by her friend and eldest son. She is 47-years-old and the single mother of five children and the primary caregiver for her elderly mother. One year ago, during the night and for no apparent reason, people came into her home and threw acid onto her face. Those responsible have never been caught and there was no clear motive to suggest why it may have happened in the first place. She spent two days in a local dispensary (about three hours from FAME) before they realized that she needed more extensive care. She was then transferred to another hospital where she spent only three days. Antibiotics and bandages were applied and she was sent home. When she arrived home she found that many of her possessions there had been stolen. The acid has disfigured her face to such a degree that she has lost both of her eyes and is now blind and all that remains of her nose are two small holes for nostrils.

Despite this horrendous injury and disfigurement, she has persevered and has a remarkable attitude. When asked about any sad thoughts, she does admit to some concerns as to how she will continue to care for her children and her elderly mother, but says that she has accepted what has happened to her and is ready to move on. Her only complaint to us was a minor headache. She was an incredibly lovely woman and when she spoke it was quite easy to forget her disfigurement or the ordeal that she had been through. At the end of our visit, she asked if she could have a photo of her with Thu and myself. I think all of us wondered if we would have that amount of strength had we been put through a similar situation. And, almost to add insult to injury, we found today that she also has diabetes as her blood sugar was extremely elevated and that this will also need to be dealt with. As I walked beside her to the lab for her blood work, I could feel the strength and livelihood emanating from this woman who made me realize that in the depth of our struggle for survival, there are always those unlikely individuals who have demonstrated an even superior strength to have risen from further depths and will always give us eternal hope that we may do the same. It is these unlikely encounters that remind of us of our internal strengths. 

African Mornings

By Pediatric Neurologist Volunteer,

Doug Smith

Remember the days when you didn’t need an alarm to wake up?  When you woke with the sun rise, and your body was so anxious to rid itself of sleep that it was insufferable to stay in bed?  The song in your head is not one you heard on the radio and can’t shed, rather it’s the background music of your life.  You knew that the day ahead was one to remember.  One where you will experience the payoff of weeks, months, or perhaps even years of planning and anticipation.  Possibly one in which you will meet challenges or opportunities you have never had before, ones you feel prepared to overcome, with meaningful experiences as your reward.

That’s what this morning was like.  That’s what nearly every morning has been like during my time in Africa.  At night, the darkness is absolute, an almost palpable heaviness to the air.  The lack of sensory input gently and slowly turns the brain off.  It is disarmingly relaxing, and I find myself in bed and asleep well before I had intended to rest.  Come morning, the energy of the world changes with the sun rise.  The light calls to action dozens of songbirds and crowing roosters.  You can nearly feel the world waking up, and the call is hard to deny.  Then you remember what you’re here to do, and it really is impossible to stay asleep.

  This is my view while I eat breakfast.   I can literally see where my morning coffee was grown.

This is my view while I eat breakfast. I can literally see where my morning coffee was grown.

The medical experience thus far dwarfs my time in Botswana.  Morning starts with 8:30AM rounds.  FAME Medical has just 6 general inpatient medical rooms, each with 2 beds.  Despite the low numbers, the acuity and complexity of patients is impressive.  Currently, over half of the admitted patients are children.  We spend a particularly long amount of time with one child who became neurologically devastated over the past three months; I come up with some answers, but without significant testing abilities, I’ll never know if I’m actually right.  The father, a proud warrior whose stretched earlobes and traditional garb could just as easily grace the cover of National Geographic, tears up at my explanation.  He will not be the last person to receive bad news today.

  5 kids from a nearby orphanage, awaiting their turn  to see me.    

5 kids from a nearby orphanage, awaiting their turnto see me.

 

The rest of the medical load, while significant, is African-casual paced.  Today, two orphanages delivered half their children to our doors, having heard that for the first time ever, a pediatrician has come to town.  I see five of them today.  The experience is exactly what I have come for.  

For two of the boys, I can make a diagnosis: muscular dystrophy.  They will never walk again. It is not all bad news, though.  A large percentage of families here do get the answers they've been seeking for a long time.  Down syndrome, Ohtahara syndrome; in these cases, I can offer a somewhat clear picture of the future, even if it is not the one they had hoped.  For others, they get confirmation of what they had suspected: that their severely weak, "disabled" child in fact has a full mind, capable of learning.

This is no small reward.  You see, schools here are very limited in their resources.  Any child with any somewhat significant problem is refused entry to school.  As an example, one 10 year-old boy was refused entrance to school his whole life because of a very subtle tremor, and they came to meet me to get a note saying he was medically cleared for school.  After TEN years!  In a more heartbreaking example, a boy with severely dystonic cerebral palsy, where he has basically lost control over all of his muscles (including his mouth and face), has a very full cognition, as far as I can tell.  When I asked his caretaker what I can help with, the boy replied, "I am a cripple."

Where schools have failed, the generosity of others have succeeded.  He was taken in by a Norwegian man, whose name I can't pronounce, let alone spell (it sounds like Skroli, but I'm sure there's an umlaut or two in there).  He has spent every cent he owns and has raised money from Norway to build an orphanage of sorts for children like him, children with significant physical handicaps but a lesser extent of cognitive impairment.  He takes them in and teaches them, not just basic schooling but also life skills, with the hopes of one day reintroducing them to their families.  So far, I have seen 7 of his sickest, and have given him half the money in my wallet to continue doing what he's doing.

Were it not for the FAME clinic here in Karatu and for Dr. Mike Rubenstein, the Penn neurologist who introduced me to the facility and is here with me now, none of these neurologically impaired children would have ever found the care they need.  Thanks to their charity, they are on appropriate medications now, and being cared for by people with the right mentality towards disability.

Skroli will have many more children for me in the coming days.  I hope I have the emotional wherewithal to handle them, and that I brought enough money to leave with a clear conscience.

Tales From the Bush: Michael Rubenstein, MD

It’s so strange to sit here writing to you - everything in Karatu still seems so close as though I’m going to wake up there tomorrow and walk to clinic.  It’s hard to explain, but I’m sure you’ve had others describe some difficulty making the transition home, even after such a short visit.  I think it’s obvious that my time at FAME Medical and in Karatu was an experience unlike any before it and it’s been difficult to put it into perspective with the world here - they are so different.  Everyone here asks me how my trip went and I don’t really know what to say to the - I tell them “fantastic,” “wonderful,” or maybe “amazing,” but none of those can really capture or even come close to the true magnitude of the experience.  I haven’t been able to really get my arms around it yet.

So I’ve found myself telling everyone now that it’s really impossible to describe because it’s so different, so foreign, so unlike our lives here.  Perhaps because every moment is so meaningful there, I really can’t explain it.  I’ll tell someone what it was like walking up to the clinic in the morning for a new day, but it doesn’t capture the real emotion of that moment on the other side of the world in such a different land.

To tell you that I’ve thought about the clinic, Karatu, red clay and dust, the smell, the sun, every single person there, those whose names I knew and those who I never really did, every day, if not every hour, since my return would be the truth, but it would still not express the full extent of the impact my visit had.