Why We Walk Week 2: To Support Research and Clinical Trils

Clinical trial.

Often when I hear those words my heart sinks and my stomach knots up, as it can imply an underlying sense of despair – an illness without a definitive cure. 

Mom was in a clinical trial for eighteen months, potentially taking a medication that focused on untangling that tau proteins that gum up and ultimately cause a break-down of her neural connections.

During the actual trial, much of the experience felt perfunctory – a constant ‘going through the motions’…answering the same questions –

 rank how your mother is able to do the following  -- 
- laundry?
- hygiene?
- reading a newspaper or book?

Every month I would robotically answer ‘with some assistance’ or try to hide the pang of sadness in my voice as I shifted an answer from ‘with some assistance’ to ‘not at all’. Life felt like a perpetual cycle of idle moments in fluorescent lobbies, halfhearted grins covering our sensed-impotence as we answered survey questions, and brilliant, multi-colored daily pill bottles filled to the brim with dull tan and bland white medicines – taunting us. (Are they real? Or is it just a placebo?)

And then, all of a sudden – the trial ended. I quietly wrote about this previously and tucked it away on the blog. But to reiterate – it was an incredibly painful moment, one that unexpectedly forced me to stare hardship in the face when I least expected it. I remember throwing my sunglasses on during my drive home that day, in spite of the overcast weather, to hide my tears from Mom. I hadn’t realized we’d reached the end of the study. (I thought we’d had another two weeks to a month, so I hadn’t mentally prepared for it to end.) Even worse – our exit appointment was poorly organized and I was pressed for time. This resulted in being told that Mom had tested too low to be considered for any other studies in quick, terse sentences as we were hurrying out the door. It felt like someone was pulling off the proverbial band-aid I’d placed on the much deeper laceration, one caused by the hopelessness underwriting the trajectory of this disease.

So, this year for the walk email I’m about to send out, I can’t include an upbeat or chirpy line about Mom’s participation in a clinical trial.

The reality is she no longer qualifies for any of the ongoing trials in our area.

While that was always going to be the case – that a cure wouldn’t get to market in time for her - having to face this harsh reality has not become less painful over time. I’m grateful for other simpler, fun, and engaging study opportunities. I’m grateful for adult day centers that keep Mom engaged and programs that provide activities for individuals to continue to stimulate their minds.

But, more than anything, I fluctuate between searing anger, debilitating hopelessness, and pat acceptance over the fact that a cure doesn’t currently exist. And so, in the meantime we walk to end Alzheimer’s because a portion of the funds will be applied to other clinical trials and research initiatives. We walk so that other families can have hope in the immediate term, and so that ours can continue to draw on hope that countless others (including our wonderful boys) will be spared from having to grapple with this wretched disease.