Tom Burgess

First post: Sep 9, 2019 Latest post: Apr 3, 2020
Thank you for visiting!

We (Tom's daughters) set up this site to keep people updated on how he's doing and what he's up to.

In October 2018, Tom was diagnosed with Frontotemporal Dementia and Primary Progressive Aphasia. Currently, what this means for him is that he has lost a significant amount of his speech, which makes it difficult for him to communicate. His ability to read and write has also been affected.

Here's a little background on how we got here.

Tom moved to sunny Texas in 2012. In August 2016, he was back in Minnesota for a visit. Almost right away, we noticed that he wasn't as talkative as usual, and when he did talk, there was some slurring in his speech. We took him to the hospital, fearful that he was having or had had a stroke. They conducted an CT scan and an MRI, but nothing seemed out of the ordinary. He was told to follow up with a neurologist when he got back to Texas.

He did follow up and had many tests run, including a memory test which he passed with flying colors at the time. The neurologist concluded it was possible he had some mini strokes, but it was still unclear. At that time, the neurologist diagnosed him with Mild Cognative Impairment, which is connected with normal signs of aging (e.g. senior moments) but also a precursor of dementia or Alzheimer's. We were told that it could get better, worse, or stay the same.

Unfortunately, over the next two years his speech continued to decline. In addition, in August 2018 he got a severe foot infection, setting him back further.  In October 2018, he made the move home to Minnesota.

He misses Texas very, very much. But he finds comfort being near family and living back in Richfield where he spent more than 30 years raising us kids. We are so fortunate to be able to visit him and take him out daily -- he's been especially loving the massive amounts of time he gets to spend with his grandkids: Grant (8) and Cora (6).

While he faces struggles with communication, the good news is that he still very much "Tom." He laughs at all our dumb or sarcastic jokes. He's quick to quip "Horn works, try your lights" if you blow your nose. He remembers every North Minneapolis address of his childhood friends. He insists on getting birthday cards for family members weeks before their big days. He understands everything and is still independent in many ways.

When people hear this story, they often ask "What can I do?" 

So, please feel free to leave a note, story, or question for us to read to him. He loves hearing from friends! If you'd like to visit him, he would absolutely love to see you and we'd be happy to help make that happen. He's all smiles when he sees old friends.

Finally, if you're curious, you can read more about his condition here: https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia/frontotemporal-dementia

Also, this past spring, 60 minutes did a special on his disease, which you can read and watch here: https://www.cbsnews.com/news/frontotemporal-dementia-devastating-prevalent-and-little-understood-60-minutes-2019-05-05/

Again, thank you so much for visiting. We're so thankful that Pops has so many people who care about him.

~ Sarah & Caitlin
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