A Brief Explainer:
December 12th, 2024 marked my third study visit for a clinical trial.
In essence, this means that two full years passed since I started. My
previous visits are described in past posts linked below:
Visit 1: https://nighttrail.blogspot.com/2023/12/out-of-body-into-mind-updates-on-being.html
Visit 2: https://nighttrail.blogspot.com/2022/12/lying-in-space-my-time-in-clinical-trial.html
The purpose of this is to use MRI (which magnetically
scans tissue) to assess muscle health in people with muscular dystrophy. Scientists
look at muscle integrity in areas like the chest and legs. With that info, they
can provide better medical care for people with muscular dystrophy.
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“Why didn’t we do
the biceps last time?” one of the technicians asked me.
“Study design, maybe?” I answered.
(Keep reading for more info.)
At this very
moment, around 10 AM, my garb was a little different. The date was December 12th,
2024. My maroon Canada shirt posed with periwinkle hospital pants and gray
patient slippers. Apologies to all the metal fans reading this, but the metal
had to sit aside. Including my phone. Astute observers will already realize
this is about an MRI.
After all, this has
happened each year since 2022. This third clinical trial visit for the same trial proved to be
my last one. Much mental preparation went in. So let’s jump back earlier in the
morning.
6:50 AM rolled around on my alarm, prompting a chance for me to confront the
day. With a simple smoked salmon sandwich (bread and salmon and butter). My
simple task: get to the hospital by 9 AM for my final visit.
Spent time getting
ready, picking a shirt without metal but sticking to pants with metal still.
(What pants can you wear outside that lack metal?) Around 8:20 AM, I summoned
the Uber – opting for the cheaper Green option, despite the possibility of a
little more wait. Ten min zoomed by as I collected my coat and bag, including a
library book to continue reading. Now in the car, I fastened my seatbelt and
read a chapter or two of my book.
Arrived at basically the meeting time. Sitting on a couch, I realized that the
meeting spot was the third floor (like the last two times). Correcting
this mistake led me to meet with the study coordinator. We reviewed the Consent
form required for any trial. What wasn’t usual: the mildly awkward urine
collection cup was handed at the start. We went to the MRI Subject Room and I
changed my clothing appropriately. Even pulled out my book …Except the only
thing I conveyed is that I had a book ready. As you might guess, it was time.
The enter to enter the space cave (MRI) had arrived. A chat with a friend, of
all things, helped me pin down the time it started: 9:49 AM or so. Between then
and 12:34 PM, the MRI and I had an intimate discussion about the nature of
existence. There was a third party: earplugs coupled with headphones. The
mechanical being (MRI) probed with alterations of hard-hitting industrial beats
and surreal quiet.
Like last time, classical music helped me through this lengthy lie-down.
Floating by, tunes like Bach’s “Air on a G String”, Pachelbel’s “Canon in D”,
Ravel’s “Pavane Pour Une Infante Defunte” and OF COURSE Debusssy’s “Clair de
Lune”. This little game of “guess the tune” kept my attention for a while.
“How in the universe did you remember these?” you may ask me.
To which I reply, “by mentally conjuring the names to write down later!”
The MRI, of course, was split into four basic components: 1) the right calf 2)
the right biceps (I told you it would be important!) 3) the whole body and 4)
the respiratory system.
The right calf was placed in the holder and wrapped with the magnetic coil,
which was a little familiar. This step was not much of a challenge and gave me
a slight arrogance. During the process, one MRI technician, a jovial guy filled
with laughs and smiles from the previous two trial visits, talked to me fairly
often during this. Checking in and making sure I knew what was going on ahead
of the PULSATING SOUNDS. At the end of
this segment, the other tech, also friendly, asked if I wanted a break.
Next, to my
surprise, we skipped right upper leg straight for right biceps. Body had to be
rotated strangely to capture the biceps with my body slightly pinned against
the left wall of the MRI, with a wedge separating my arm; what made this even
stranger was not moving my right fingers, which could throw off the results.
A break again with
the MRI table being rearranged anyways. Went to the bathroom, to collect that
one item of study, and came back, having completed at least one part.
Subsequent scan
was the whole body with the coil first across my chest, forcing my arms by my
side. This made me a little self conscious about my breathing, trying to limit
my chest’s elevation. The tray moved
inward and outward, with me as a passenger. Warm coil faced off against the
cool exhaust streaming from the MRI end. My head poked out for a few minutes. Coil
moved down to my stomach and to my legs, capturing the full breadth. The
machine made frequent, sustained sounds as I was given some breathing
instructions.
Ensuing and final
scan was respiratory, largely targeting my chest again. I was told to be
especially careful with breathing so respiratory motion “was not visible.” Once
again, the MRI was fully engaged in conversation with me, including with
breathing tasks. During this second half – whole body and respiratory – I was
asked to INHALE as slowly as possible for some scans and another was EXHALE as slowly
as possible for the scan. This was challenging, making my chest sore.
“Maybe this will
be over by 12:30 or so,” me wondering out loud. Surprisingly close of a guess!
On my way out, I asked the main-stay tech about, well, all this. He commented
that my muscles and the scan quality looked good – in spite of my
squirming.
After I changed, I
removed my sweater again. The reason? There was a blood draw (another conserved
part of the trial). Checking a couple spots on my arm, the tech drew blood from
my “classic” vein on my left arm. A seemingly thicker needle was a little more
uncomfortable, but it was over quickly.
With a moment to breathe, I jotted down some notes about the trail in the “0T”
room. Why was the room 0 Tesla (as in the magnetic unit)? Well, the tech
explained that the name is probably facetious. Most rooms are 0 Tesla (not
magnetic) but this one had a mock MRI machine to help young children get used
to the setup.
The study coordinator stopped by and asked about the physical therapist but I
hadn’t met her yet. A while later, I was brought a turkey sandwich and a Coke
(one of my rare requests for soda). Trying to eat and take notes was tough.
Maybe another ten minutes later, the PT came in and realized that a different
form was needed. I finished up the last bite of my turkey sandwich as she
returned. Of course, the PT was here to
perform functional tests with me.
The ”cherry can stacking”, “coin sorting”, and “6 minute walk test” all
returned from before. For those unfamiliar, the 6 minute walk test forces you
to pace back and forth – without running – until the timer runs out. Though
it’s certainly not fun, the test is widely used to look at walking. Many
tasks were in fact not challenging for me, yet were a struggle for people with
more severe forms of muscular dystrophy. That is not to claim perfection. After
all, the balancing on one leg exercises were a bit tricky for me. Our final
test involved, again, breathing. However, this time, I had to forcefully inhale
and exhale, which taxed my chest. With that aspect completed, I finally sipped
the rest of my Coke before it just became diluted.
After collecting my sweater, coat, and all that, the finality set in. I went to
the study coordinator’s area and completed a few remaining questions. (A new
medicine had to be added to the list – the joys of gaining age.) Lastly, I
shook hands with the professor in charge and spoke with him for a few minutes.
Our chat elucidated something simple about the study design. I asked, “why study the biceps this
time” in deference to the question from earlier in the day. The answer was
simple: there was a physical therapist this time, unlike the last visit. Simple
variation reared its head. Last year, I had two days for the trial, and yet
only one day this time. In a trial like
this, many aspects must be flexibly handled. This trial was impressive and
exciting to participate even more so with those changes!
Walked back with the study coordinator, and thanked her one more time. I got
into the Uber (Green again) bound for home. Getting home put me in the awkward spot between
“real tired” and “feeling hungry”. Holding out awarded me a great home-cooked
meal, sealing all this off well.
Now you may wonder, why enroll in a clinical trial? There is a modest money
they give. Hardly a major reason for me. Mom’s cooking is great. Still not the biggest motivation! Muscular dystrophy research is
important to me, especially as someone living with it. Surely you must realize my
motives are loftier, more passionate.
Above all, I felt
excited. To shatter my typical routine. To help the pursuit of knowledge. To
give a high-minded contribution. As I exclaimed to various people, “this is for
science!”