Our Frontotemporal Dementia Journey
A long, hard road . . .
Do I start from 22 years ago when I first met my husband, and he shared that his dad had passed from early onset Alzheimer's (incorrect diagnosis but the closest the doctors could get to the real disease at the time)? Do I start from 10 years ago when my husband started exhibiting embarrassing child-like... Continue Reading →
For the last few weeks (months), I've been excessively tired. The doctor ran blood work. All is fine. The tiredness has been stressing me, but then, I started a list of all the reasons that might be contributing to my tiredness. Exercise aside (I really should have a cardio routine in place), my husband's disease... Continue Reading →
Oh, dear. There are not words. Knew this was a progression that would eventually occur, but I was so not ready for it. My husband seems so high functioning in some ways. He still goes to work. He still goes to the gym. He still walks. The walking may have to come to an end.... Continue Reading →
I'm sitting at a soccer field in the middle of the Great Smoky Mountains in Tennessee. A text message pops up on my phone. It is from my mother. "Bless your heart." That was all it said. My response, "What do you mean by that?" My husband has been diagnosed for over two years with... Continue Reading →
So, a week ago a new Facebook Challenge emerged. It was a challenge to post your first Facebook profile picture from 10 years ago (or so) and the most recent one. The profile photos of friends popped up on my timeline. They all made me smile for various reasons. It may have been the hairdos,... Continue Reading →
It is easy to wallow in the negative emotions. There are many. It happens often. But, in peeling back the layers, there are many blessings as well. We've been on a journey of self-discovery. One that has reshaped our family's priorities. One that has bonded us through grief. Finding and embracing the blessings have pulled us through the firestorm of the first two years post-diagnosis.
My understanding of love has changed in nineteen years. It's no longer the simple shared emotion of young people with a life full of promise, the wonder at starting a family.
Sixteen years ago today, my beautiful first-born son came into the world. He was an enormous 9 lbs 1 oz baby. He never seemed fragile almost toddler like from the beginning. At only a day old, he found a way to un-swaddle himself and kick the covers right off. He's never liked being hot running... Continue Reading →
Yesterday was another trip to Vanderbilt Hospital in Nashville. It's a two hour drive on a good day. It's two hours to reflect on the limited conversational abilities of my husband. It's two hours listening to comments about the passing billboards and buildings that have no real relevance to our lives. Yesterday, the trip was... Continue Reading →
