First Signs of Lewy Body Dementia

When you see someone every day, you don’t notice small changes in appearance or behavior. However, if you only see someone once a year, small changes stand out. That’s what happened in my Dad’s case. For about four years, since he retired at age 65, my Dad had been very tired and was seeing his primary care doctor and a local neurologist/sleep specialist regarding his fatigue, problems concentrating and slight tremors in his hand. My Mom hadn’t noticed anything of significance different with my Dad, just that he was getting older. That’s what his doctors said, too. He was 69 years old at the time, not what one would consider “old.” In July 2010 we had a week-long family get together at their home in Fairfield Glade, Tennessee and that’s when something clicked in my mind that Dad had something serious happening to him.

That summer all of us kids–three daughters–and our spouses and the grand kids got together for a week of fun at their lake house. Mom and Dad had a pontoon boat and we all went out on it for a day of swimming. Everyone was laughing while the grand kids jumped off the boat into the water and the dogs swam around them. Everyone was having a great time except my Dad. I noticed Dad sitting just staring blankly out at space. I asked him if he was o.k. and he said yes, he was having a great time but he said it in a flat tone with no expression. That was so unlike him. He was a happy guy who loved to be with family and make sure everyone was having a good time. In this case, he was totally out of it.

As I sat in the boat watching my Dad not engage in the fun, I remembered back in December when we were all together for Christmas and Dad was having trouble playing games like charades and Uno. At that time, he laughed it off but I made note of it. I also remembered how tired Dad had been which was uncharacteristic of him. Dad had been a runner for decades and loved taking the family dog on long walks. In December it seemed he dragged himself along on our long walks. Now he was sitting on the boat slouched over looking so exhausted he could fall over.

After the week was over and everyone went home, I called my mom and told her something was very wrong with Dad. She repeated what his two doctors had said, that Dad was getting older and probably had some sleep apnea that was causing him to become tired. I told her I thought it was something more serious and it was time for another opinion.

This marked the beginning of when our family began to doubt the medical profession and question how much doctors know about anything. Our long journey of frustration and sadness began.

Dad’s Early Signs of Lewy Body Dementia Starting at Age 65 but Becoming Most Noticeable at Age 69:

–Variations in alertness, sometimes staring blankly off in space–listening but not reacting
–Walking hunched over and shuffling his feet like walking was a huge effort (but actually it wasn’t a big effort, it just looks like it was)
–Dad fell a couple of times while walking
–Poor sleeping, waking up many times during the night, thrashing in bed (mom and dad had already begun sleeping in separate rooms it had gotten so bad)
–Dizziness when he stood up
–Trouble remembering how to do things like use the computer and the microwave
–Taking a long time to respond to someone’s question, having to really think about what he was hearing and how to answer

Dad Running in 2002

Dad Ran the Last 3 Miles of the Chicago Marathon with Us in 2002

Dad Hiking 8 Miles in 2007

Dad Hiking 8 Miles in 2007

WalkWithLewy Lewy Body Dementia Fundraisign

Dad Supporting Us in 2012 Half Marathon

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