by Karry Forsythe
My mom, Sandra Nentwig, is a loving mother, wife, grandma, and so much more. She is the most creative and artsy crafter I have ever known. Mom was 63 years old when we first started noticing the changes that marked the beginning of our journey. Mom started making small changes in the bows she makes for her Christmas presents. Her beautiful cursive handwriting became large and loopy. We encouraged her to see a doctor, as the changes continued to grow. Mom started losing her train of thought and became less mobile.
We finally got Mom to start seeing doctors in the months after her 65th birthday. After many weeks of seeing multiple doctors, enduring lots of tests for everything under the sun, and seeing several specialists, we received the diagnosis – corticobasal ganglionic degeneration (CBGD).
Initially, we were glad to finally know what she had. But only after I did the research and discovered the horrors of this disease did I realize what was in store for our family. We soon began noticing many more changes – Mom’s handwriting became illegible loops, she stopped cooking entirely, no longer drove her car, and began falling more and more often over the following year.
Mom is still functioning, speaking, and mobile for the time being, so we are hoping she’ll be able to participate in an upcoming clinical trial. My mother is enjoying everything she has and doing the most she can do. On the other hand, Dad is taking this really hard. He’s trying to learn how to do what needs to be done to keep their lives moving in the right direction.
If you are a caregiver, I encourage you to research the disease and try anything to help your family member or friend. Some of the things that have helped my mom include water aerobics and motor skill therapy.
Our family hopes that current research will find something to help the victims of this horrible disease. Please support CurePSP and Rare Disease Day to help find a cure for these rare diseases that mean so much to those who have to witness them first hand.