by Jennifer Lee

When I reflect on my life before FTD, I can say that I was a person who could easily go with the flow. A BUSY mom of a blended family that includes six amazing children, I was also an educator for many years. I loved my career and felt needed and appreciated by my students. So, when I received my FTD diagnosis in December 2018, my world as I knew it came to a screeching HALT, and I was reminded that LIFE rarely goes according to PLAN.

Although several years have passed, I remember that doctor’s visit like it was yesterday. Not only was I diagnosed with something I had never heard of, but I was also told I would not be ABLE to return to WORK. The doctor explained to my husband and me that FTD was the reason I often had trouble finding the right WORD and was struggling with seemingly simple tasks. She explained that FTD is progressive and terminal, and that there is no CURE. She also informed me that along the journey I would lose my ability to TALK.

By the time we got to the car I felt as if my world was about to SPIN out of control. My husband took my HAND and reassured me that together, we would WALK this journey one day at a TIME, and that he would take care of me through the GOOD and the bad.

My temporary three-month leave of absence from work turned into an early retirement. When my children returned to school after Christmas break, I was left at HOME and I FELT LOST. At first, I had no IDEA what to do with myself. Afraid of losing my ability to speak, I talked to my dog so MUCH that she would HIDE in the closet. Most of the time I was in a DAZE, although some days I was so frustrated I wanted to KICK, YELL, and CUSS at the top of my lungs. I felt lonely; with few exceptions, people found it easier to LOOK AWAY.

Then a light bulb went off in my HEAD: I knew I needed to FIND a support group. When I joined a support group for people living with FTD, one of the site administrators contacted me almost immediately, and for the first time since my diagnosis, I felt HOPE. She assured me that the sky was not falling, and that my sense of panic was normal. Suddenly, I had a whole community of people that I could TALK to as much as I needed. And through this group, I found AFTD.

AFTD provided us with such a wealth of information that I no longer felt like I was wandering through a MAZE of misunderstanding. They gave me encouragement, helped me learn to manage my symptoms, and offered the comfort of knowing I was not alone in my journey. I eventually realized that I could either choose to focus on what I had LOST, or focus on who I was now, and FIND ways to adapt and MAKE my life better. Sometimes LIFE takes us down a path we would not have chosen, but we can choose how we WALK that PATH.

One of the things I’m learning to do since being diagnosed with FTD is to ask for (and accept!) HELP. I also make sure to tell the people close to me how much I LOVE them every day. No one knows what the future holds, but we can choose to FIND and focus on the things in our lives that give us HOPE and meaning, no matter what tomorrow brings. In my life, accepting HELP, spending quality time with the ones I LOVE, and keeping HOPE alive for a CURE are the “four-letter words” that get me through each day.