Yes, I’m Happy!
Arriving in Rochester, I landed before Maria. It was overcast and cold (and we all know how I feel about the cold..) I waited in the airport, feeling overwhelmed, excited and a bit nervous. My legs were jittery and foot tapped the brown, slightly shagged carpet. I can’t believe Ii’m doing this, I thought to myself as Maria approached me with her phone on, videoing my reaction (a tradition of sorts!). “You ready?” She asked, smiling?
“To do it? Or to go out in the cold?” I joked back. We grabbed our bags and we were off. All the prep, the planning, the coordinating… the emails, the phone calls - it’s all coming to fruition now. Holy Smokes. Soak it in.
The alarm buzzed as I opened one eye. Where the hell am I…? Oh, right. I quickly remembered.
Today was the first day of my 5- day research study with the ALLFTD.
“Wow, we are doing this,” I said out loud as I bounded out of bed to get ready. It’s all for you, I thought.
Maria knocked, I grabbed my stuff and we were on our way. No turning back now.
Participating in research was one of the best decisions I made after my dad’s FTD diagnosis. I’m hopeful I made good decisions for him along the way, but for me, this one takes the cake. Why? Great question, I’d love to tell you.
Contributing to the ALLFTD study really made me feel like I was making a difference in the FTD community by aiding in research! My blood, my spinal fluid, my MRI will be used for years to come.
It gave me time with and a chance to speak to experts in the field that were readily available to me to answer any questions I had.
I felt extremely close to my dad.
Participating really combatted feelings of helplessness, and I left feeling very empowered.
After all the tests were complete, I felt like I was taking an active role in my health and my future healthcare.
Those are just the top 5. I can go on. 6 would definitely be getting to spend time with Maria! (Psssh, that would be number 1!) After all is said and done and it’s been months since my study, I can honestly say I am happy that I took the first step. I made the leap even though I was scared.
I am also happy to report that I will continue to be a research participant and that I feel lucky that I get to do so. With science moving at a much faster pace now, it’s time to take the leap you guys!
LearnFTD.com is a great place to start to obtain facts and get an understanding of the genetic side of FTD. Learning your genetic status does not have to be part of your research study, as it wasn’t mine, but this website is a good place to start understanding your options.
Take a look and as always, reach out to me if you have any questions.
