We Are Us

We Are Us My approach is informal and nonjudgmental.

I share resources and encourage open dialogue regarding Frontotemporal Degeneration (FTD) and all aspects of this dementia including symptoms, caregiving, relationships, grief, financials, end of life, and more.

Day 7 of World FTD Awareness Week:  For now, THIS is where FTD leaves us:  with loss but also beautiful memories.  It do...
09/28/2024

Day 7 of World FTD Awareness Week: For now, THIS is where FTD leaves us: with loss but also beautiful memories. It does not have to be this way for others. Please go to www.theAFTD.org to learn more and, if you can, donate. Dementia has affected most of us by knowing someone with dementia, caring for someone with dementia, losing someone from dementia, or living yourself WITH dementia. That means, we are in this together. To quote Maureen just 6 weeks before she passed, “We are us.” Bless you all.

Day  #6 of World FTD Awareness Week:  While I miss my Maureen deeply, it has also brought me into a community of friends...
09/27/2024

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...
09/26/2024

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.

What do Terry Jones (Monty Python troop), Glen Campbell (country singer), Charles Grodin (actor in Beethoven), Peter Fal...
09/22/2024

What do Terry Jones (Monty Python troop), Glen Campbell (country singer), Charles Grodin (actor in Beethoven), Peter Falk (title character in Columbo), Bruce Willis (countless films) & Wendy Williams (broadcaster & writer) have in common? They died, or are dying from, Frontotemporal Dementia.

An estimated 60,000 people (just in US alone) have FTD right now.

As you know, my Maureen died from FTD (pictured here today 5 years ago, and just 18 days before she passed). I have lost count of the hundreds that I know have died from FTD since I connected with AFTD just 6 years ago.

DID YOU KNOW, FTD progresses faster than Alzheimer’s?

DID YOU KNOW, today is the first day of FTD Awareness Week? Learn more at www.theAFTD.org 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...
09/16/2024

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.

Flying back home today from a great 2024 AFTD Education & Awareness Conference. One of the highlights for me was catchin...
05/04/2024

Flying back home today from a great 2024 AFTD Education & Awareness Conference. One of the highlights for me was catching up in person with Rachael and Maria of the Remember Me Podcast and participating in their art/writing workshop designed to both release the creative parts of our brains AND to share our FTD feelings of both grief and joy in a safe space. These great ladies interviewed me regarding Maureen in 2020/21 for their podcast. THANK YOU!

I am thrilled and humbled to be co-facilitating AFTD’s National Men’s Caregiver Support Group every month with this fine...
05/03/2024

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.

A great morning for the 2024 AFTD Education & Awareness Conference in Houston.  I am happy to be here sharing a piece of...
05/03/2024

A great morning for the 2024 AFTD Education & Awareness Conference in Houston. I am happy to be here sharing a piece of Maureen’s story.

AFTD’s 2024 Education and Awareness Conference is just starting.  You can still connect virtually.
05/02/2024

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

Sunsets in MazatlánOn a long-overdue vacation, I sat on the beach last night in Mazatlán and listened to the waves crash...
04/10/2024

Sunsets in Mazatlán

On a long-overdue vacation, I sat on the beach last night in Mazatlán and listened to the waves crash over and over, smelled the wind carrying that saltwater aroma, and squinted my teary eyes at the wonder of how much time has passed. It has been exactly 4-1/2 years this morning since my wife Maureen died from FTD. Like the tenth of every month, I light a candle (apparently “la vela”, as I was told when I went searching for one). This routine helps me to manage my still-present grief.

Many of us are managing some aspect of grief, whether anticipatory, just after loss, or much after loss. We find ways to live with our grief, to cope, and to even draw from it when we need to.

Here in Mazatlán, I see my grief as that coastal wind. We were always drawn to the beach, so it makes sense that it talks to me now. You stay in one place long enough, and you get used to the patterns, but gusts can still surprise you and stir things up that you do not expect. Sometimes you can use it to lift you up, sometimes it takes your breath away, and other times it drops something into your eyes, forcing you to have a good cry to flush them out.

Maureen and I travelled to tropical coasts every single year of our marriage – often ending up in Mexico. She liked the laid-back nature of Mazatlán because that was her – easy going and simple tastes. Her fun and passion came from walks along the boardwalk, window shopping (often buying), and gently splashing warm ocean water with her sand-covered toes while I carried her sandals in one hand and held her hand in the other.

While Mazatlán is growing and changing, I barely notice. Grief gives me focus. I partake of the best of our memories:

I dine at the thatched-hut beach palapas chuckling at how Maureen would say the food in those tastes the best. “They catch it right there (pointing to the ocean) and cook it right here - fifty feet away!”

I hire drivers of the golfcart-like palmonias where her hair would blow straight back with her wearing her Maui Jims like a move star. I chuckle every time they slow way down for the topas – severe speed bumps that jolted her into giggles.

I saunter up and down old town’s boardwalk with all the people-watching that fascinated Maureen and see the surprised tourists over the bold seagulls – dive bombing the food out of their hands. All I could think of was Nemo’s gulls, “Mine! Mine! Mine!” Maureen watched that movie a hundred times with her granddaughters – and mimicked those gulls every single time like it was new.

I hang around the Plazuela Machado – taking in the old-world charm of this town square where time stands still. Open air markets and restaurants grow with each hour, only to compress again by morning and do it again. I smile at how many times Maureen just gave me a look and a grin and I knew, with very little Spanish, I had to convince the waiters to make her margarita with blue curacao because, “it just tastes better blue”.

These memories make me both smile and tear up, warm and long for. Again, that is how I process my grief (maybe others do too). I turn and face the wind and let it lift me up, take my breath, or bring me a tear. All is ok – all is welcome.

We need not beat grief. I treasure how it makes me feel EVERYthing.

Last night, I thought on these 4-1/2 years since I held Maureen’s hand as she breathed her last and silently slept forever and stared at the sunset in front of me. I remember those evenings on the beaches with Maureen and have no regrets - no “if only’s”. We did a lifetime’s worth of loving, and grief is part of that promise. It is a happy-sad, a holding tight in absence, a wind whispering soft nothings, and a Mazatlán sunset warming my face and drying my tears for another day.
Best to you all.

This morning, my interview with Pete Hill played on The 'D' Word on UK Health Radio. I was thrilled to speak with them a...
01/30/2024

This morning, my interview with Pete Hill played on The 'D' Word on UK Health Radio. I was thrilled to speak with them about my wife Maureen and our book, We Danced: Our Story of Love and Dementia. The link is here (once at the link, you have to tap the headphones above his picture): https://ukhealthradio.com/.../pete-talks-to-author-scott.../

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Portland, OR

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