VOICES with Dementia – Where are they now?

With people being diagnosed earlier and still able to speak about their experiences, The Caregiver’s Voice launched a new column called VOICES with Dementia in July of 2015.  Since then, we featured 38 people in written and/or video interviews.

In December of each of the last two years, we overviewed what we learned about people living with Alzheimer’s, Lewy bodies, and rarer causes, including frontotemporal dementia.

The Caregiver’s Voice Reflects on the Voices with Dementia – 2016

Voices with Dementia – What We Have Learned – 2017

Where are they now?

This year, I randomly chose five people. While I was unable to reconnect with some for this column, (read why below), we’ve kept in touch over recent months, except for the last person.

Click on each person’s name to read their feature on VOICES with Dementia.

Mick Carmody – Brisbane (Australia)

Mick Carmody knows how to have fun despite living with seizures caused by frontotemporal dementia. He takes off his padded helmet (see helmet image in video below) and shows off a whole new look. This kind man who keeps sharing his knowledge and time suffers greatly each time he has a seizure. He drops to his knees, which are bad already, and then to his left side, further injuring his rotator cuff.

Click on video to view the five-minute update below.

Phyllis Fehr – Ontario (Canada)

Phyllis and I have kept in touch via Facebook Messenger and Zoom video. She was not feeling well and limiting her activities. It’s no wonder, she has been presenting at conferences around the world, including her most recent, in New Zealand. This humble Hamiltonian lives with Alzheimer’s and Lewy bodies dementia. A former medical professional she shares a wealth of knowledge. She’s finishing her term as a board member for Dementia Alliance International, an organization lead by and for people with dementia. She plans to remain involved as an online facilitator.

Joe Potocny – Nevada (United States)

Former Californian, moved to Pahrump within the past year. Joe is a witty and feisty guy. While he’s slowed down since we featured him in January 2016, I was happy we were able to reconnect. In October 2018, he posted a notice about closing down his accounts. [Updated 6/8/2021: Recently, he has terminated his “living-with-alzheimers” website.]

We were able to talk by phone after I reached out via his contact page on his website.

When I mentioned I wanted to write an update, he asked, “Why?” While the tone and meaning of his question is lost in print, I smile knowing his humor. He’s the kind of guy who would invite Death in for a cup of coffee and a cigar. (I never know what he’ll say!) He admits he doesn’t know what will come out of his mouth, either. Still, our conversations are often punctuated by my pauses to digest what I thought I heard.

At 74, he lives with “the trifecta of frontotemporal dementia (FTD), atypical Alzheimer’s, and bi-polar.” He adds, “I’m supposed to be dead!” He’s lived with Alzheimer’s for 14 years and even longer with FTD. He adds that the disease begins well before diagnosis.

He tells me about the connection between some cases of FTD and head trauma. (I recall reading something about this earlier.) He believes his symptoms began after he hit his head.

It’s getting extremely difficult for me now. I can’t follow more than one person in conversation. And I really have developed my own language. I don’t even understand it. My wife looks at me and I have to start pointing with my hand, so she knows what I’m talking about. She eventually figures it out.

Joe is planning a farewell post. He doesn’t know when, but that will be his final blog entry.

Nancy Williams Nelson – Nevada (United States)

Following an Alzheimer’s diagnosis in 2013, Nancy keeps active with a positive attitude. Her smile alone lights up the room. While we were unable to connect for this update, we’ve kept in touch. She was named 2018 Nevada Senior Citizen of the Year. At 74, she remains a strong advocate for Alzheimer’s awareness. She actively participates in the Las Vegas community and speaks regularly as a published author-poet living with dementia.

Susan Suchan – Oklahoma (United States)

Tulsa-based Susan and her family are the subject of Susan’s Story, a documentary filmed during the last two years of her life with Alzheimer’s and FTD. I learned about her from Dementia Mentors. Her candor was compelling and I found her equally engaging by phone. Her philosophy gave hope to others. “Between diagnosis and death… there is LIFE!” Her advocacy and shining light earned her the 2017 DAI Richard Taylor Memorial Advocates Award, a few months before she died at age 60 in January of 2018.

VOICES with dementia was inspired by Dementia Mentors and the late Richard Taylor, co-founder of Dementia Alliance International who wrote “from the inside out” about his living with “probable Alzheimer’s.”