Core Team Profile: Barney Nelson
BBA, Business Administration
On Acceptance: Accept that you do have dementia and there is no cure as of now. It is progressive. Then you can get to a place of acceptance. There is a lot of power in that! The problem with denial, you end up retreating more and more into a shell and that just makes it so much worse. There are still other things that I can do and accomplish.
On Change: One thing I want to see changed. The whole diagnostic process, I really want to see it changed. So many people I talk to tell me about their diagnosis process, that it is really overwhelming. I have put together a resource to help speed up the process. I have a passion for how to help make the diagnosis easier, quicker, and more effective, streamlined. That would be a real help!
On Lewy Body: Realize that this is the Lewy Body. “I think you’re starting to go Lewy. Lewy is doing his thing.” Making it a third party gives you more power over it, and makes it a little less bad.
Married for ten years, Barney Nelson, 63, and his wife Vicki Quick, live in Portland, OR, where they have a combined five adult children. After spending nearly two decades working for a global technology company, Barney became an entrepreneur and the regional developer of a national company that opened 29 massage franchises in Washington state.
Despite a very successful business, Barney noticed in 2018 that he was beginning to feel overwhelmed. It was more difficult to multitask and keep up with the pace of his business. He saw several specialists, including a neurologist, who after assessing his cognitive function, experience of hallucinations, and experience of those symptoms in combination with REM sleep disorder and tremors, diagnosed him with Lewy Body Dementia (LBD). Not long after his diagnosis in January 2019, Barney sold his company and continued to assist his wife with her business, which coincidentally develops and sells products for the dementia and autism communities.
Barney credits Vicki and her steady presence throughout his disease journey, particularly when she accompanies him to his medical appointments so that she can provide objective input and support, as vital to helping him to cope with his condition. Not only does she help him identify when he is experiencing symptoms of LBD, such as hallucinations, she also helps him to de-escalate the situation by speaking calmly to him and redirecting his attention. They brainstorm ways to cope, which is why they hung blackout curtains in the bedroom to reduce the shadows in the room that can contribute to the onset of hallucinations when waking up at night.
He has founded a company called Dementia Symptoms Tracking Tools, LLC (DSTT), that enables people with possible dementia to collect personal symptom data via easy to use tools that, in turn, aid physicians in the diagnostic process. This enables people to feel more in control over their personal diagnostic process, reducing anxiety and uncertainty and expediting the diagnostic timeline. DSTT are useful tools for physicians too, as they track and evaluate patients’ symptoms.
Barney is dedicated to raising the awareness of dementia so that people understand how it’s possible to live and live well with this condition.
2019 - Present