About Lewy Talk and Me

Five years ago I unsuspectingly started a walk. It was down the Lewy Body Dementia road. I didn’t know it then, but there were inklings of signs. Little things, like him not knowing how to install a window shade or not remembering the name of a hardware store. There was no diagnosis yet, just signs.

Also five years ago we moved from a busy, exciting city in the western part of the United States to a city in the Midwest, where most of my adult children live. One reason for the move was that healthcare is so much better here. Top rated hospitals and doctors are here and we thought it would be better for issues he was having with epilepsy that developed just a few years prior.

When my husband was diagnosed with Lewy Body Dementia, I had no idea what to expect. I knew that it would be a long and hard road, but I had no idea just how difficult it would be. Five years later, we are still on this journey and it has been the hardest thing I have ever done. But even though it has been tough, I would not change a thing.

My husband is the most important person in my life and I will do anything for him. When he was first diagnosed, he was still relatively independent and able to take care of himself. But as the disease progressed, he has become more and more reliant on me. And even though it is sometimes overwhelming, I would not have it any other way.

This journey has been eye-opening for me in so many ways. I’ve learned so much over the years. I’ve learned from doctors and support groups. His neurologists are extremely knowledgeable and they are also involved in LBD research. The support groups have taught me an infinite amount of practical knowledge.

I’m here to share what I’ve learned, some real-life examples, and ways to get through this a little bit easier.

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