The National Institutes of Health in Bethesda, Maryland is the world’s largest center for biomedical research. The NIH is comprised of 27 clinical centers, among them the NINDS, or the National Institute of Neurologic Disorders and Stroke. The NINDS has an enticing tag line for anyone with ALS:
“Solving the Mysteries of the Brain to Improve Health.”
The mission of the NINDS is even more hopeful and specific:
“…to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease for all people.”
When our neurologist at UVA suggested that a visit to the NIH was an absolute possibility, and that he would make the contacts for us, send all of the records, and include a summary note of referral, we were incredibly grateful.
JimBob and PeggO were ready to pack their bags for an adventure at the world famous NIH.
I’m sure someone mentioned this along the way, but the truth of the matter got lost in the excitement: the NIH is purely a research institution. Every patient is part of a research study. Our visit to the NIH would be, first and foremost, our contribution to medical science. Every piece of data would be used to “seek fundamental knowledge”, and “reduce the burden” of ALS “for all people.”
The first inkling that this was going to be an intense 3 days came with the introductory email which contained a secure link requiring the usual sign on and password. Once inside this secure, digital location, I found 8 attachments with lengthy details about security, COVID, parking, getting around the campus, our hotel reservations, and finally the agenda. Our days would begin at 8 am, and end around 4, with 60 minutes for lunch at noon. They suggested in several of the documents to bring snacks.
We already know that PeggO is all about having snacks for JimBob. In an effort to increase compliance and efficiency, PeggO has added salty, roasted pistachios to the snack pack. Genius.
The first small glitch surfaced when we discovered that the NINDS contracts with 2 lovely Bethesda hotels, neither of which is dog friendly. This was news to Carol who handles all of the arrangements for patient visits at NINDS. We suggested the Hyatt Bethesda, 1.4 miles from the NIH main gate, and fully dog friendly.
After a bit of back and forth through the secure portal, Carol agreed to allow us to submit the bill from the Hyatt for reimbursement. Under no circumstances, however, would the NIH cover the $60 doggy surcharge.
Fair enough. And we were off.
As if ALS is not confusing enough, with all of its twists and turns, jargon and choice of paths to follow, the NIH is also a giant campus with a choice of no less than 5 entrances, 2 of them on Wisconsin Avenue.
The Hyatt Regency Bethesda is also on Wisconsin, a little over a mile away from the NIH campus. Our Day #1 schedule starts with a nurse screening, and consent signing at 8 a.m. Peggo hates to be late so we set out promptly at 7:25 a.m. Remember the part about PeggO hating to be late; it becomes highly relevant.
JimBob, liking maps as he does, sits in the passenger seat with a paper map printed from one of the many informative attachments referenced above. JimBob can store and find electronic files with the best of them, however, the maps are quite small on a phone screen, and as it happens not that big on paper. Since they are just headed down Wisconsin, the map seems superfluous, but it adds a degree of importance to JimBob’s day.
Turning into the first NIH entrance on Wisconsin at 7:37 a.m. seems an early triumph, until the handsome, tall, masked security guard waves us to stop well ahead of his guard house. This entrance no longer admits visitors. We will need to proceed up Wisconsin, past the second NIH entrance and turn left on West Cedar for the Main Visitor entrance.
At 7:46 a.m. we arrive at West Cedar. The tension is palpable as we wait in the left hand turn lane. After a full cycle of lights, with nary a left turn arrow, we spot the small white sign that says, “No left turn 7:30 to 9 a.m. weekdays”. It is now 7:52 a.m.
JimBob knows better than to say anything. Lefty and Righty sit quietly clasped and sweaty.
As the light turns green, a most unexpected and glorious event transpires.
Peggo grips the steering wheel firmly, and with a steely eye, puts the pedal to the metal like never before. Our nondescript, 2013 Prius rockets across 4 lanes of on-coming traffic, and sails down the sedate, tree-lined West Cedar Avenue.
Lefty and Righty go wild. Fists in the air, they dance along with JimBob’s conga-line chant, “Go Peggo, Go Peggo, Go Peggo!” It’s 7:53 a.m.
Arriving at the the West Cedar entrance, PeggO is met with yet another challenge to earnest punctuality: TSA type security. Everyone and everything electronic would need to come out of the car. 7:54 a.m.
JimBob is generally cheery, and given his recent brush with Indy 500 excitement, he might be feeling even cheerier, affably greeting everyone and asking about their children and grandchildren. PeggO, shall we say, is more conscious of the time. 7:55 a.m.
On to the parking garage. More security. Open the hatch, wipe things down with the horrible wand that always gets us pulled out the TSA line. This time we prevail and are at the COVID-screening check point by 7:58 a.m. Snacks and schedules at the ready, we have made it.
Top of the list is my first and only COVID test (tears and coughing for 10 long seconds), then we spend a full 90 minutes reviewing and signing consent forms. Lots and lots of consent forms, including consent for a spinal tap, genetic testing, and many lab analyses.
Last stop before lunch: the lab.
Taryn, our nurse practitioner, accompanies us to the lab with a small insulated cooler. She will hand carry the blood samples to their respective research laboratories on ice.
It is worth noting here that JimBob is not fond of getting blood drawn. It hurts and the phlebotomist often needs more than one attempt. Blood draws test JimBob’s cheerfulness.
The phlebotomy lab at the NIH is a warren of small rooms set up for taking blood. JimBob is assigned the “PEDS ROOM” which provides some comfort. The Peds Room has smaller needles, and a phlebotomist with more skill at sticking smaller veins. The Peds Room also has brightly colored balloons painted on the walls.
As the phlebotomist is setting up, JimBob eyes an entire rack of multi-colored vacutainers. Many of these tubes have colors and speckles you would never see in a typical medical office or hospital lab.
Gazing down at the rack full of tubes, JimBob asks quizzically, “Are those all for me?”
“They certainly are,” chirps the phlebotomist without looking up.
JimBob counts 15 tubes. He counts again. Still 15.
Truthfully, what did he expect at the World’s Largest Center for Medical Research?
After lunch, JimBob and PeggO spend the afternoon with Dr. Justin Kwan, a research neurologist who specializes in ALS. He is a tall, thin man, stylish and precise. Dr. Kwan looks too young to have accumulated all of his expertise and titles.
Dr. Kwan (everyone calls him Justin) sits facing us, almost knee to knee, with a legal pad on his lap, and begins to take the history. He listens carefully. No detail is too small. No anecdote is disregarded. He writes it all down, pausing to think about what he hears.
Recounting the unfolding story of ALS is a bodily experience, and it is emotionally fatiguing. Retelling the story illuminates the early hope that thumb weakness is just a bit of arthritis. The story recounts the early speculation that muscle weakness and atrophy in the left hand are due to a narrowing in the spine that is commonly repaired with surgery. Telling the story from the beginning reminds JimBob and PeggO of the anxiety they carried silently. This was always going to be ALS.
JimBob is generally a sunny patient, which poses a conflict when telling the ALS story, which is generally a dark one. The continual slow decline in function, which results from the on-going death of motor neurons, is more naturally told by JimBob from the sunny side. He acknowledges a SLOW decline, hopefully due to the POSITIVE effects of the 23 pills he takes everyday. He often turns to PeggO to fill in the gaps or for her perspective. They are team story-tellers.
Dr. Kwan has elicited a detailed history of ALS from hundreds of patients. He knows how to pace the interview, creating trust with a true curiosity that never feels out of line. He creates intimacy for JimBob and PeggO to be themselves. The three of them share an authentic mixture of laughter and silence. They recount stories of coming up the ranks in training, and of supervising students and residents. They commiserate about being on call and about the honor and privilege of caring for patients. Dr. Kwan knows how to be the doctor’s doctor.
Next up: the familiar neurological exam to document abnormalities in strength, coordination, and dexterity. Dr. Kwan saves Lefty until last. With a rare tenderness, he champions Lefty’s efforts, and comments soley on Lefty’s successes. Dr. Kwan’s exam is thorough and dignified.
At the end of 2 1/2 hours together, Dr. Kwan summarizes his findings and invites questions. PeggO has a detailed list of questions in her bound diary. She goes first. PeggO is pleased to have the time with an expert on ALS. The conversation soon morphs into a mini-journal club, referencing and critiquing scientific studies. Dr. Kwan receives questions with genuine interest. He is engaged in the opportunity to share the finer details of research. JimBob especially appreciates the way Dr. Kwan can describe the limits of knowledge. As always, PeggO writes it all down.
As the mood naturally settles into closure, Dr. Kwan slides his chair even closer to share an image on his iPhone. He has applied JimBob’s data to a nomogram created from thousands of ALS patients. JimBob’s rate of decline is in fact slow, and ranks among the top 85% of slowest progression. Neither JimBob nor PeggO are typically content with 85%, but in this moment they are elated. Could this be true? JimBob asks for more detail about the data. Dr. Kwan confirms the accuracy without interpreting what it might mean for JimBob and PeggO. What it means for JimBob and PeggO is more hope for more time in each other’s arms, literally.
The exit from the NIH clinical center is as circuitous as the entrance, and requires driving 2 floors deeper into the garage to locate the sole exit. The exit is no where near the previous entry, so another masked security guard offers a complicated set of directions which land us, no joke, at the Wisconsin Avenue guard station where we had earlier that morning been turned away. This time the guards wave us through and Day #1 is in the books.