The Importance of Research & The Real Real on What to Expect!
I feel like I should start with a gentle disclaimer. Maybe it’s unnecessary but I feel like I need to point out that I’m not a doctor, MD or otherwise (I don’t even play one on TV). My understanding of science and genetics and biomarkers and mutations is minimal - think 8th grade science. But what I can speak on, quite confidently, if I may say, are feelings. I can talk about feelings and emotions until your eyes will slowly begin to cross and you will mentally begin to check out. So, now that I’ve told you all that, I want to tell about what our (ok, mostly MY) experience felt like. Sure, I’ll give you a little lowdown on what we did, but I really want to focus on what we felt.
I’ll set the scene and share a shameless plug and share a few “quick ones” for you to wrap it up.
Maria and I ventured east/south to meet each other at UPenn (our ol’ stomping grounds with our favorite team of angels) for their annual FTD Caregiver Conference. We were asked to speak as their keynote address and … man, it was so special for us. We spoke about Lia and Frank, about Remember Me, about grief and our experience as caregivers. But mostly, what filled the room, was the feeling of understanding and compassion. It was beautiful and it felt bittersweet to honor our parents in such a remarkable way.
*That was the shameless plug.
The days that followed, we spent our time at the Upenn FTD center participating in their Unicorn study. We worked diligently with the coordinators beforehand (they made everything literally seamless) and we were in constant communication leading up to our visit. We had a timeline schedule, we had our questions answered - we felt welcomed and part of the team! They walked us through what we could expect, how they could make this experience as easy as possible and continually thanked us for participating in research. We continued to reciprocate the “thank you’s” … it was alot of gratitude, y’all. With their preparation and advance planning., we felt ready and eager to get started. We felt brave and ready. We also felt scared. It’s ok to feel it all that.
We arrived early, and we were greeted right in front of the hospital by three smiling faces, ready to lead us in to our respective areas. One thing I really want to highlight is the three smiling faces never left us. They administered some of the tests, they walked us from place to place and they were always checking in, making sure we were ok. You don’t get that kinda love everywhere!
Over the course of two days, we did cognitive testing (both mini and full!), went through a 55 minute MRI, finished speech tasks and participated in “wearables” (where we wear a “watch” that tracks certain bodily functions). We gave vials of blood and answered questions about our family history, we had the opportunity to ask questions and - I want to emphasize - we were handled with such care. It was extraordinary. The days were jam packed (we wanted them that way!) but for some reason, the draining nature of this experience didn’t seem to phase us. We forged on, through cognitive questions that made you feel dumber than rock, in hopes to move the needle forward. We often looked at each other and wondered what this process felt like for our parents. Some of the tests we partook in lead to their diagnosis. We felt a pit in our stomach during some moments and victorious in others.
Steps on to her soapbox*
Without sounding too preachy, I want to highlight a few “quick ones for you” we have heard or been asked…
No, you don’t need to find out your genetic status if you participate in research
Yes, the cognitive tests are hard, but you’ll get through them. You may feel like you need to go back and relearn a few elementary things, but it’s nothing you can’t handle.
Most sites will provide Ativan for the MRI if you’re nervous.
You can stop participating at ANYTIME.
You can set your schedule with each site. if you want to knock it out in a day or two, it’s possible. If you’d like one activity a day, that is potentially possible too.
The coordinators are your guides. Tell them when the trail seems murky. They’re there to help.
It feels emotional. Very emotional for me the second time around. It’s ok that it feels that way. It’s a bittersweet moment that it so impactful. Let it be so.
Find you a Maria + Bri. Those two girls can rule the world.
Stay hydrated during your testing. It’s imperative.
Go at your pace.
As I remain up on my soapbox, I want to address the importance of this experience. No, I don’t believe that Maria and I single (or double?) handily will find the cure for FTD. However, I do believe we have made a small dent. And if you make small dent, and your sister makes a small dent and your grandmas blood is used to make a small dent, and you encourage other family members to make a small dent of their own…. the small dents will move us forward.
The feelings that surround this experience range and they definitely ebb and flow. The heart behind the “why” is strong and we believe in strength in numbers. Although this is a personal choice, I urge you to try it.
You may, in fact, like it.
