We Are Us

Day #6 of World FTD Awareness Week: While I miss my Maureen deeply, it has also brought me into a community of friends and advocates for a better world. Governor Kotek signed a proclamation for Oregon acknowledging the World FTD Awareness week this week, and we presented that today. KATU was there filming and interviewing this morning at the Portland Memory Garden - a year-round garden designed for those with any cognitive challenges but also a SE Portland oasis for those needing respite. Everyone here shared an FTD story - THIER story. There was laughter and tears and remembrances as we held our loved one's pictures and spoke of what raising awareness for FTD meant to them. A good day. Please go to www.theaftd.org to learn more, and, if you can, donate.

Day #4 of World FTD Awareness Week:
I can assure everyone reading this, that FTD is real and devastating to those with the disease and everyone around them. As such, it warrants our attention. I counted it up, and I, myself, have attended twelve funerals for FTD loved ones and their caregivers in just the last two years. This does not even scratch the surface of the numbers of others that have passed in that same time.
I get asked by some, "how does someone actually die from dementia?" How does someone die from a heart attack or a collapsed lung? Our anatomy is all inter-related. We cannot live without the brain.
FTD is a progressive deterioration of the brain - starting at the frontal and temporal lobes. While it may start out affecting our language, behavior and/or movement, it progresses into our more automated systems. Most commonly, our brain "forgets" how to interpret food in our throat, causing us to swallow wrong and develop aspirating pneumonia. There are other studies on all the senses too. Eyesight is not lost or diminished, just the brain's ability to tell the eyes to look peripherally and to interpret that information. That was the case for Maureen.
In my Maureen's case, her body simply started shutting down because her brain stopped telling her body to "do things". We were spared the violent convulsions of aspirating pneumonia. Hers was a quiet passing.
I have heard studies of our brains staying active 9 minutes after our death where our life "flashes in front of us" for that precious 9 minutes. I do not know if this is true, but I hope Maureen is in all of MY last 9 minutes. Please go to www.theaftd.org to learn more and, if you can, donate. Thank you.

World FTD Awareness Week starts in one week, Sunday, 9/22. The more you know, the more you can support others with this disease. For more information, please go here: https://www.theaftd.org/what-is-ftd/disease-overview/
In Maureen's memory, I thank you.

I am thrilled and humbled to be co-facilitating AFTD’s National Men’s Caregiver Support Group every month with this fine gentleman, Jerry Horn.

AFTD’s 2024 Education and Awareness Conference is just starting. You can still connect virtually.