We Will Be Back – Faith in FTD

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As the Director of Caregiver Support Services and Public Relations for the MGH Frontotemporal Disorders Unit, it is my happy job to coordinate community events and fundraisers. A family-friendly bowling event, an education day, or even a summer concert for research participants and their families.

I love event planning. I imagine the event from the attendee’s eye and work to make it is as easy to navigate as possible. It energizes me to know that I can help bring people together so they can cope with the unexpected challenges that FTD and dementia can throw their way. And, I like the opportunity to plan events that are beautiful, fun and happy – I think our families deserve the opportunities to make new memories of joy amidst the difficult journeys they are traveling.

Due to the intense health crisis brought upon our global community, in-person community events are cancelled. No registration tables will need to be set up and no tote bags will need to be ordered. But, community isn’t cancelled. I have had the privilege of working with my team of AFTD support group leaders and staff in the MGH FTD Unit to pull together Virtual Supports that include online support groups and webinar-based Community Forums that bring together community experts to share knowledge that will be relevant to our community at this time.

I wanted to call attention to the fact that our FTD Community may be feeling lonely today. April 17, 2020 was supposed to the be AFTD’s annual education day in Baltimore. I was honored to have been asked to be a panel presenter and was looking forward to connecting with so many members of our national FTD community. This morning I ran our MGH FTD Unit Community Forum Friday event with Nicole McGurin from the Alzheimer’s Association and Matt Sharp from the Association for Frontotemporal Degeneration. We talked about the ways that these two organizations are still here for us today. A pandemic isn’t stopping them from offering education, support and connections.

It moved me to think about how much I have benefitted from past education days and I wanted to share a piece that I wrote about the 2016 AFTD conference. Remembering this experience filled me with so many emotions, the biggest one is faith. Faith that we will be back together again. Back in the fight against FTD. Back with resilience and hope that the cure of tomorrow is not so far from the care of today.

*The following essay was written in May of 2016. In January of 2018, Susan passed away after leaving an immeasurable mark upon the world. I am as moved today as I was in 2016 by her words of hope, inspiration and love.

Reflect, Renew and Explore: AFTD Conference 2016

When I arrived in Minneapolis to attend the 2016 Association for Frontotemporal Degeneration’s (AFTD) Annual conference, I had expectations.  I expected to see old friends and make new ones.  I expected to hear scientific updates, an annual report from AFTD and a call to action for volunteerism.  I even expected spring weather, but it turns out that Minnesota is still cold in May.  And then Susan Suchan took the stage. 

Susan is a volunteer, advocate and patient.  She is living with Primary Progressive Aphasia (PPA) and raising her voice for the FTD community.  As she welcomed the audience of over 300 patients, caregivers, medical professionals, industry experts and advocates she issued a challenge and a call to action “Let’s make the lived experience worthwhile.”  Her powerful message made me think about my own message of the power of the authentic voice.  But, I realized that Susan’s words had a much greater meaning. 

More Than Words

For many in the FTD community, the disease itself muffles their ability to raise their voices.  Patients living with behavioral variant FTD may lack the insight to express the impact of their condition on their daily lives.  Those living with advanced PPA may lose the very words needed to express the journey.  Clinical experts and researchers may seem to speak a different language than families when they describe FTD.  But, they all have a lived experience.   At a time when FTD thinks it is unstoppable, when the cure of tomorrow has not yet met up with the care of today, we must learn how to understand each viewpoint of the lived experience. 

Luckily, AFTD was up to the challenge.  This year’s conference offered the opportunity to learn from clinical care and research experts, to register our experience for the first time in an official way, and to make powerful connections with one another.  By exploring the lived experience through the eyes of both presenters and attendees, it validated the importance of each role in our fight for a new conclusion to FTD’s story.

Becoming A Citizen Scientist

Brad Boeve, MD, Chair of Behavioral Neurology in Minnesota’s own Mayo Clinic brought his clinical expertise to the day to help us understand the pathology of FTD.  For new and experienced families, a greater understanding of the disease process can help with the practical aspects of daily interactions, access to public aid for care and long term planning.  It can also inform family conversations about genetics, medical needs and opportunities for research. The care of today is critical.  Yet, our community also needs an eye toward the cure of tomorrow. 

David Knopman, MD, Professor of Neurology at the Mayo Clinic, presented on two large federally funded projects for FTD research; ARTFL and LEFFTDS.  Advancing Research & Treatment for Frontotemporal Lobar Degeneration (ARTFL) and Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects (LEFFTDS) are combining to form the first multi-center effort to pool resources across major research centers in North America.  The goals of the study are to learn more about the biology of FTD, to improve diagnosis and to facilitate efforts to development treatment for FTD.  Fifteen sites across the country, including Massachusetts General Hospital, are participating in the initiative.   

In order for this research to meet its goals and make a difference in science and healthcare, it is not just medical and scientific professionals who must play a pivotal role.  Each patient and family member that participates contributes essential information that cannot be replicated through any other model.  As lay people, we have the power to become Citizen Scientists, contributing information and expertise that is irreplaceable.  It is one of the most powerful examples of our need to come together as a community to solve the problem of FTD.

Registering the Lived Experience

Nadine Tatton, AFTD’s Scientific Director remarked “In the world of FTD, every story advances the sciences, starting with yours.”  In order to fully understand how FTD affects patients and families, a centralized repository of recorded personal experiences is needed.  The FTD Disorders Registry is a secure electronic database that collects information from people diagnosed with any of the FTD disorders and from their caregivers and family members.  Dianna Wheaton, Director of the FTD Disorders Registry, is encouraging everyone whose lives have been impacted by FTD to join the Registry.  The registry will provide a research-ready patient community for scientists and a resource for learning about the natural history of FTD that can be shared within the community.  All research participant information will be made anonymous by removing names and other personal identifiers and replacing them with an ID code to protect identify. 

Go to FTDRegistry.org to learn more about becoming part of the community working to end FTD today. 

Leading the Way

AFTD volunteers flew in a day early to engage in leadership training and support group facilitation workshops.  AFTD Board Members stayed a day later to strategize the year ahead, enhancing the national and global network of our FTD community while sharpening the focus on our shared goal of finding a cure for FTD.  The AFTD community is made up of tenacious, caring, dedicated individuals and it shows in every event, program and initiative they lead. 

I have attended AFTD conferences in Boston, Philadelphia, Salt Lake City, San Diego, Vancouver, British Columbia and even across the pond in Manchester, England.  At each conference, AFTD unites local, national and international members of our FTD community.  They are sprinkling the nation with a trail of breadcrumbs that lead us all back to one another.  Creating connections is the action step that must be taken and AFTD is a master connector.  We may not have a cure for FTD, but we have a cure for the loneliness and isolation that many experience while living with FTD and that is something we can fix.  Today.

If you want to be a part of AFTD to make a connection, sprinkle a few breadcrumbs or take action today, go to www.theaftd.org.

Warmth in Words

Our conference closed where it began; with the patient.  Susan Suchan took to the podium one more time to summarize our day.  Susan remarked that when she awoke that morning, she found the weather to be cold, rainy and gray.  She worried that the conference attendees who had traveled to be here might feel unwelcomed by the dreary Minneapolis weather.  But, when she arrived in the main conference room she saw bright faces, people greeting each other with big hugs and smiles of delight.  She saw new connections being made.  She realized that no matter how cold it was outside or how hard the rain fell, there would be warmth in our conference room today and that was a memory that we could all take home with us.  That was something that wouldn’t change. 

As Susan delivered her closing remarks, her words were broken.  Yet, her message was so strong and clear that no translation was required.  FTD would bring challenges, grief and sadness into our lives.  But, we would bring light and love. 

That was something that FTD couldn’t take away. 

When I woke up the next day to catch my flight, Minneapolis was 34 degrees, cold by most standards.  But as I rode to the airport, all I could feel was the warmth of the sunshine.

Feeling Sure

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The summer that my son, Noah, was two, my husband, Mike, and Noah were the same.  When I say that, I mean that they were entertained by many of the same things and had a similar level of skills.  Noah was much more verbal than Mike.  At the age of two, he had well over 200 words. Because of Frontotemporal Degeneration (FTD), a progressive neurological disorder that caused dementia, Mike’s language had vanished almost completely.  But, Mike smiled and laughed a lot and it was easy to coax a joyful noise out of him, especially when Noah was around.

Mike moved into a neuro-rehabilitation center just nine miles away from us in the spring of 2010, and when the case manager asked me what one of my goals was for Mike, I answered immediately “family time.”  An occupational therapist was assigned to Mike to help with family visits.  Due to Mike’s erratic behavior, inability to communicate or follow verbal directions paired with Noah’s wild toddler energy, it was essential that I had another adult present during visits.

I would arrive with Noah and wait in the hall outside of Mike’s locked unit door until he appeared with his aid or occupational therapist.  By this time, Noah would be yelling to get out of his stroller or running in circles to try to make a break for it down the hall.  I would entice both of them with a snack to lead them into the enclosed outdoor courtyard.

Our routine was set: a short activity, a snack and a photo.  I would bring bubbles, hula hoops or balls to try to engage Mike and Noah in simple play.  Sometimes we would just take a walk.  Mike and Noah had to have the same snack or Mike would want to take what Noah had and vice versa. We always had a staff person with us so that Mike and Noah each had one-to-one support and we had someone available to help try to take a family photo.

It sounds organized, but it didn’t feel that way.  I often felt like I was in some kind of a bizarre version of a ping pong game in that courtyard.  Mike would pace quickly in circles on the brick path while Noah ran back and forth, relentlessly pushing the handicap button to open the door leading out of the courtyard.  Noah would climb in the mulch and in the bushes and plants to pop out and scream “Boo!” at Mike.  This always made him laugh and Noah would erupt in fits of giggles, usually leading to hiccups, because he had gotten such a big reaction out of Daddy.

I didn’t worry about time, a 15-minute visit one day could be a 40-minute visit the next, instead I looked for special moments.

Sometimes Noah would run after Mike while he was circling the courtyard and reach up and grab his hand.  They would walk together like that, not talking, just together for a lap or two and then Noah would go back to playing hide and seek in the shrubbery.  One time, Mike was sitting and drinking ice coffee on a bench watching Noah play with a stick.  Noah brought the stick over to Mike and promptly whacked him on the head with it.  I was horrified and about to reprimand Noah for hitting Daddy when Mike burst out in the biggest belly laugh, making eye contact with an impish Noah.  It was so clear that they were sharing a joyful moment, I had to let it go (and remove the stick).

As summer turned into fall, I started to notice some changes.  Noah and Mike shared a love of a favorite snack, tortilla chips and guacamole, and as Noah was mastering scooping the mounds of avocado onto the chip before popping it into his mouth, Mike was losing that ability.  Noah was becoming interested in potty training and I was having conversations with staff about Mike needing to wear adult diapers at night and even during the day.  Noah was a sturdy, steady runner and we were beginning to worry about Mike’s balance and his risk for falls increased.

I started to get a pit in my stomach before each family visit, finding it harder and harder to grab Mike’s attention and focus it on Noah.  Noah seemed less enthusiastic about going to visit and one time when I was buckling Noah into his carseat before driving over to see Mike, he said to me “Daddy scary.”

That was a turning point.

I realized that a new decision was looming.  A new mile marker in the FTD journey would soon be upon us.  How many more visits would my son have with his father?  I felt an overwhelming urge to protect Noah.  I knew that his memories of Mike would be limited and I didn’t want them to be negative or scary.  I didn’t want him to remember a dad who was sick.  I thought I might rather he not have any memories at all if they were all going to be sad ones.  And, just as fiercely, I wanted to protect Mike.  He had wanted to be a dad for so long and he loved Noah so completely.  I wanted to protect Mike’s position as Noah’s father and try to preserve some positive feelings between the two of them.

This decision is an example of a moment of isolation in my caregiving experience.  None of the other moms in my “Mommy & Me” classes were grappling with this issue.  I felt judged for bringing Noah into the neuro rehab center, and equally judged for thinking about keeping him out.  I was selective about who I would share these concerns with, being unsure of my own decisions.  Wondering if I would ever make the “right” one.

Visits were stretched out across days and weeks and a dual birthday party was planned for that March.  Noah would be three, Mike thirty-two.  We had an ice cream cake and presents.  There were balloons and streamers.  A photographer who I had met through the FTD support group donated her time to take family pictures of us.  It felt like the end of something.  A celebration that was a goodbye.  But I wasn’t sure.

Six weeks after the dual birthday party, Mike was in a wheelchair full time.   He had lost the ability to walk on his own.  Falling frequently and unable to engage in the motor planning necessary to transition from sitting to standing, he was safer strapped into a chair.  I didn’t want Noah to see him that way.  The visits slowed even more.  Until the 4th of July.

Earlier that week, when I was driving with Noah in the car he said to me “I just want to say hi to Daddy.”  It seemed like a request that I couldn’t deny.  So, I made a plan with Mike’s favorite aid to have Mike sitting at a courtyard table with her when Noah arrived.  The wheelchair stayed hidden in the hallway.  I brought ice cream from Friendly’s.  Noah fed himself while the aid fed Mike.  Noah ran around the courtyard and I could see Mike watching him.  Noah sang songs for our applause and laughed when I bestowed butterfly kisses with my eyelashes upon Mike’s cheeks.  We took a family photo.  Noah and I walked out of the courtyard.  Mike stayed seated.  Noah blew him kisses with his chubby 3-year-old hand and yelled a quick “Bye Daddy!  Love you!”  As we walked down the hall to the exit, I knew it was the last visit.  I felt sure.  I just didn’t know if I felt right.

Less than a year later, Noah and I were in the car, just the two of us.  It was one week after Mike’s funeral.  Noah’s 4-year-old voice piped up from the backseat “Mom?  Can Memere talk in heaven?”  I was curious about why Noah was asking about my mom who had passed away 3 years prior, but I answered his question.  “Yes, of course Memere can talk in heaven.”  Noah was quiet for a few moments and then said “Mom? Can Daddy laugh in heaven?”  That got my attention.  “Noah, are you remembering that Daddy didn’t talk, but that Daddy laughed?”  Noah was quick to respond “Yeah, Daddy not talk, but Daddy laugh a lot.”

There it was.

After not seeing Mike for nine months, Noah had a positive memory of his father.  Thinking of him laughing.  Laughing in heaven. That moment was a gift for me.  A gift for Mike.  To know that locked inside our son’s heart there was a memory of joy and happiness gave me hope.  Hope that Noah could grow with memories he would want to keep and remember.  Hope that I had protected his heart and his father’s dignity.  Hope that I had made the right choice

Impossible

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“They’re shouting for you,” she said with a smile. “But I could never have done it,” he objected, “without everyone else’s help.”

“That may be true,” said Reason gravely, “but you had the courage to try; and what you can do is often simply a matter of what you will do.”

“That’s why,” said Azaz, “there was one very important thing about your quest that we couldn’t discuss until you returned.”

“I remember, said Milo eagerly. “Tell me now.”

“It was impossible,” said the Mathemagician, looking at the king…”but if we’d told you then, you might not have gone-and, as you’ve discovered, so many things are possible just as long as you don’t know they’re impossible”

My Christmas concluded tonight snuggled up with Noah as we finished the final chapters of The Phantom Tollbooth written by Norton Juster.  Two hundred and fifty-five pages of literary fantasy, a quest to restore rhyme and reason to a land that had lost both.

As I read the quote above, I couldn’t help but think of my year, my work, and my own impossible quest.  The mountainous mission to raise money for a cure for FTD while juggling work, caregiving and single parenthood with grace.  To redefine my family.  And, to bring it in an even bigger way in 2016.

An impossible quest is exactly where I want to be. No roadmap or guiding star.  A go for broke, balls to the wall, all in with nothing left on the table kind of quest.  In a situation like that, the only place to go is up.

Thankful

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One month after our amazing, incredible, heart burstingly beautiful inaugural gala to benefit The Frontotemporal Disorders Unit at the Boston Harbor Hotel, and only days before Thanksgiving, I am thinking a lot about gratitude.  Gratitude for every pledge of support, every word of encouragement and every congratulatory hug.  Standing at the podium with Dr. Dickerson, I was privileged to a humbling view looking out at a room full of friends and colleagues raising paddles high in the air, banners of hope that the cure of tomorrow is not so far away.

The gala felt big.  Bigger than big.  It felt epic.  For me, it was a turning point in our movement.  A turning point dressed up in tuxedos and sequins with big band music, glasses of champagne and laughter on the dance floor.  Brain images sprinkled with sparkles and research data punctuated by rounds of applause. It was a night where FTD stayed in the shadows and our community was in the spotlight.  I carried that spotlight home with me and tried to tell Noah about the magic of the night.  He listened for a few moments, but I felt pretty sure that my recounting was unremarkable.

Until yesterday.

Noah and I were alone in the car and headed to the grocery store with a mission to find peppermint ice cream.  He always asks me questions while I drive, so I didn’t think too much of it when his little voice piped over the radio “Mom, how do you get famous?” I started talking about athletes and movie stars who worked hard to have important careers when he interrupted me, “Well, you are going to be famous.” That got my attention.

“Noah, what do you mean?” I asked.  “Because of FTD” he replied. “You are working so hard.  You planned a gala.  You made a TV show.  You were on the radio.  That makes people famous.”  By all accounts, Noah was right.  I did make a short film this past spring with four students from Boston University (over 1,000 YouTube views!) and Noah and I were interviewed on our Hometown AM radio station before Rare Disease Day last February (he loved pushing all the console buttons and later telling his friends that he was “on air.”)  While I appreciate Noah’s belief that I will one day find Kardashian-level stardom, it was his acknowledgement of my hard work that felt like my very own academy award.

I am humbled by every donor who supported our gala through sponsorships, online donations and gifts that are still coming in.  Mostly, I am grateful that the biggest little person in my life noticed how much of myself I give to my work.  To every scientist, researcher and clinician who stays up late at night thinking of our community and how to create the cure of tomorrow, I want you to hear this:  Your passion is noticed.  Families know you care.  We believe in you.  We are grateful you are on this journey with us.  Keep going!

With Love & Appreciation, Happy Thanksgiving

Something Rare

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On February 22nd, our family’s journey with the rare disease Frontotemporal Degeneration (FTD) was featured in The Boston Globe, written beautifully by reporter Bella English.  The timing of this article was serendipitous as we are on the precipice of International Rare Disease Day on February 28th.  Even more extraordinary was the act of kindness that occurred when Noah and I went to pick up our own copies.

Our Sunday morning was busy, getting ready for the baptism of my newest Godson.  Ironing shirts, finding matching sweater vests for Dad and Noah and double checking for peanut butter on Noah’s face.  Early in the afternoon Noah and I stopped at our local Cumberland Farms where I asked “Do you have any Globes left?”  I was directed to the newsstand and began flipping through the first copy I could find.  There it was.  The back page of Globe South, above the fold, an article written with heart, accurate facts, and a color family photo.

“Noah!  It’s us! We are in the paper!” which made Noah ask, “How did the paper get our picture?” What I find exciting, he finds regular.  We scooped up the last four papers and headed to the cash register with big smiles.  The cashier looked at my stack and asked if I found what I needed.  I showed her the article and explained that Noah and I had lost Mike to a rare disease, and that on Monday morning I will be at the State House for Boston’s Rare Disease Day event.  For a moment she seemed thoughtful, then looked at me and said “I am paying for your papers.”

Noah and I are not regulars at Cumby’s.  I did not know this young cashier.  Her connection with us, and decision to extend a gift of kindness was immediate and without question.  She would only accept a hug in exchange for her generosity.

I am thankful for the gift that this community member extended to us, not for it’s monetary value, but because Noah witnessed this act.  He will learn that the act of a cashier paying for your items is rare, but kindness is everywhere.  All you have to do is be open to the connection.

Power Play

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On November 13th I had the privilege of speaking at From Care to Cure, an FTD Education Event for caregivers presented by the Frontotemporal Disorders (FTD) Unit at Massachusetts General Hospital. I was also one of the conference organizers. The day encompassed scientific presentations, workshops to manage the practical aspects of caring for a loved one with FTD, and an opportunity for caregivers to connect with one another.  I am proud to say that it was a powerful day, providing us with updates on FTD research and hope for future generations of families.

The following are my remarks from the day.  Sharing my story in a public way is an emotional, and important experience for me.  I hope that by sharing my experiences, I can make the caregiving journey easier for families today.  I am thankful to Dr. Dickerson, director of the FTD Unit, for giving me this opportunity, and for the FTD community for all the love and support they give me every time I speak.

A Campaign for Caregivers:  Taking the Power Back

Good afternoon everyone and thank you so much for coming today!

As I look out at the crowd I see many familiar faces, for those of you who don’t know me, I am Katie Brandt. I am the New England Regional Volunteer Coordinator for the Association for Frontotemporal Degeneration. I am the Patient Family Liaison at the FTD Unit at MGH. And, I am a co-facilitator of the Boston-area FTD Support Group.

What is most important for you to know is that I am a caregiver.

At the age of 29, my husband Mike was diagnosed with behavioral variant FTD. At the time, we had been married for 6 years, and our son Noah was 10 months old.

As if FTD wasn’t enough, 4 days after Mike’s diagnosis, my mother died unexpectedly of a heart attack. Seventeen days after that, a diagnosis of early onset Alzheimer’s was confirmed for my father. He was 59.

At the age of 29, my world was turned upside down. I left my career, let my house go to foreclosure and became engulfed by my new roles as a single parent for Noah and a caregiver for Mike and Dad. Noah and I moved in with Dad and I found an amazing neuro rehabilitation center to care for Mike. I juggled babysitters, home health aides, medical appointments and visits with Mike. Despite dementia’s looming presence, Mike, Noah and I figured out how to be a family.

But, it wasn’t easy. Caregiving tried to take me down. I lost 15 pounds without trying, developed chronic hives due to stress and was perpetually exhausted.

Skinny, speckled and sad, I was almost 3 years into my caregiving odyssey as we approached what would be Mike’s last Christmas. In an effort to overcompensate, I let Noah pick out a 12 foot Christmas tree, thinking it would enhance the magic of the holidays for him.

Late one night after finishing chores and checking on Dad and Noah one last time, I was about to head to bed when I realized that I hadn’t watered the tree. I dreaded this task because I knew I would have to move gifts and wiggle under the thick lower branches to reach the tree stand’s water reservoir. I sighed and filled a pitcher with water, shuffling in my slippers across the living room floor and flattened myself against the cold hardwood to give our monstrous tree a fresh drink.

Just as I was tapping the last drops against the trunk, I saw the base LIFT off the floor and all of a sudden the whole tree tipped forward and crashed on top of me. Ornaments broke. Water and pine needles ran down the collar of my robe and into the neck of my pajamas. My hair was tangled in branches and Christmas lights. The tree was heavy. It was crushing me.

And I just laid there.

I realized that no one was coming. I was alone in my predicament.

I had a choice to make: Lay on the floor until Dad and Noah woke up in the morning, or heave that huge balsam off of me and go find some new pajamas. After a few moments, I became exasperated. After everything I had been through, I certainly wasn’t going to let a Christmas decoration bring on my demise. Somehow, I maneuvered out from under the tree and shoved it in a corner until the next morning when I redecorated it and tethered it to the wall.

A few months later, Mike’s journey with FTD ended.

And, when he left us, I felt crushed. The heavy weight of sadness as palpable as a forest of trees upon my chest. This didn’t surprise me, I expected the tidal wave of grief to try and smother me, what I didn’t know was that I would have the opportunity to make a choice that would change the trajectory of my grief. And, I wouldn’t have to do it alone. The staff of the FTD Unit was there, extending support to help me make a powerful choice. With their guidance, I was able to help Mike give the precious gift of brain donation. For me, this was the first step in taking some of the power back from FTD.

Since Mike’s passing in 2012, I have become an advocate, educator and trainer in the areas of FTD and caregiving. I have given presentations at colleges, conferences, hospitals and skilled nursing facilities. I have spoken in Washington DC and was a featured speaker last February at the Boston Rare Disease Day event at the State House.

And, I didn’t stop there.

Inspired by the experience of sharing my story as a member of the rare disease community, I wanted to share my story in a bigger way. I just didn’t know how I would do it. Around that time, I came across a book my mother had given me the Christmas I was 16. It was a copy of the first edition of “Chicken Soup for the Soul” with an inscription scrawled across the inside cover:

“Katie, I thought you might appreciate the quotes and stories in this book. Some day you will have your own to collect that will give you inspiration. Write them down. We all need to be reminded that love is out there. Love, Mom”

In that moment, her confidence in me felt as real as if she had just spoken the words aloud herself. Mom could never have imagined that I would have this story to tell. But, her belief in me was steadfast. And, I sure don’t want to let her down.

I set out on a 36-day campaign, Love Is Out There, in honor of what would have been Mike’s 36th birthday this upcoming March and mobilized thousands of people through social media, fundraising events, and a letter writing campaign. The goal? To get on the Ellen DeGeneres Show in honor of Rare Disease Day this upcoming February. The outcome? Funds were raised, connections were made, and the requests are still being sent to Ellen. In fact, each of you can go on to my website, KatieBrandt.org, and submit a request to Ellen on my behalf. The website provides all the information you need and it will only take a few moments of your time.

Let me be clear: My drive to get on an afternoon talk show is not because I am hoping to become a reality TV star. This campaign is about sharing the story of caregiving and spreading awareness.

In my early days of caregiving I felt isolated and alone. Many of my friends and family members stayed away because they didn’t know what to do or how to help. But there were others: Girlfriends who showed up with a bottle of wine. Women from my church who took Dad once a week. My best friend’s mother who would bring me dinner, just because.

Love is out there.

We don’t yet have a cure for FTD, but there is a cure for loneliness and isolation! No caregiver should feel alone. They need to know that resources and support exist. Community members need to know that they can help. We can all play a role in making that part of the caregiving journey easier.

Today, caregiving is easier than it used to be for me. Noah and I have a lot of fun together. I have a good system of care in place for Dad.   I go out on Saturday nights! And, I am no longer speckled with hives. I have a strict height limit on Christmas trees and I am hopeful about what might be next in my life’s love story.

You know, even if I could make it rain Benjamins over MGH, even if I shared my story on every media outlet in the country, to me, nothing will ever be as significant as my decision to donate Mike’s brain for research. This was my power play against FTD.

It can be yours, too.

The caring clinicians and expert researchers of the FTD Unit are poised and ready to receive the irreplaceable gifts that only our loved ones can give. If someone you love has a Frontotemporal disorder, you know that life is not fair. We are unwilling members of an elite club. We are also stewards of a gift that is priceless and precious. A gift that can change the trajectory of care and a cure for future generations.

FTD thinks it is all-powerful.

Let’s not be afraid to take that power back.

Thank you!

FromCaretoCure

Thank You

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Yesterday, I went to the post office to mail two donations.  The result of generosity from my community and the fruits of back to back fundraisers.  The first was a wild night at Chili Head BBQ in West Bridgewater.  Outrageous entrees, decadent beer and inspired music met the crowd ready for a fun night out.  The second was a packed house at Crispi’s Italian Restaurant in Bridgewater.  Good friends, family and community members buying AFTD wristbands from Noah, hoping to win a raffle prize and enjoying authentic Italian cuisine.  Both events were a celebration, my community coming out to learn more and show support.  Symbolic of what all caregivers need.

It was very important that the campaign hosted two fundraisers.  The first benefitted the Frontotemporal Disorders Unit at Massachusetts General Hospital, the second The Association for Frontotemporal Degeneration.  Sending out two donations, supporting both entities, was symbolic of what a family needs to navigate rare disease: A Trifecta.

For me, that trifecta encompassed an innovative medical facility, my rare disease organization, and my community.  One piece is never enough.  In order to navigate the maze of information, emotions, and logistics of rare disease care, each element must be in place.  Many families need more help putting these pieces together.

Families need to know that rare disease organizations and caregiver networks do exist.  They need to understand the importance of being with a medical team that understands the specific nuances of their loved one’s condition.  Community members need to know that they don’t have to stay away, everyone can do something.

That is what this campaign is all about.  Raising awareness.  Sharing our stories.  Making the path a little easier for the next weary travelers.  The past 36 days have been an incredible tribute to my husband’s life, the power of our story, and the strength in human connections.  My friends, family and colleagues have astounded me with their passion, commitment and enthusiasm for my cause.  Local businesses have overwhelmed me with their generosity.  Strangers have reached out to me to say “That’s my story, too.”

As I was parking the car before going into the fundraiser last Tuesday night, I turned around to Noah in the backseat and asked him “Why are we doing all of this?  Do you know what this fundraiser is for?”  He replied “So we can give money to a scientist who can fix people’s brains with FTD.”

Today, Noah sees the tangible.  The money going into jars and envelopes.  One day, I hope he sees the bigger picture.  I hope he sees how we kept going, not only for ourselves, but for all the other families who needed to hear that Love Is Out There.

The website has had over 12,000 views.  The Ellen Show has received over 1,000 individual requests.  I can’t quantify the number of connections.  I couldn’t have anticipated the momentum that would build. Today is the last day of our 36 day campaign.  But, it feels like just the beginning.  Keep an eye out to see where the butterfly will land next.

Going for it! …because love is out there.

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A big thank you to Genevieve Wanucha for blogging about my campaign and being a big support through my FTD journey. Dr. Brad Dickerson connected us years ago when we were both caring for our loved ones with FTD. Today we work together – she as the Staff Science Writer and me as a Consultant – for the Frontotemporal Disorders Unit at Massachusetts General Hospital. We are using our passion, education and knowledge to take the power back from FTD. It feels good to do evil to this relentless disease!

Date Night

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My first date with my husband Mike had the potential to rate pretty high on the romance scale for two college freshmen. It was a cool night in September when he walked over to my dorm to pick me up. The lobby was busy with girls coming back from the dining hall, classes or the gym, talking and swinging lanyards with ID cards and keys. Noisy study groups competed with the hum from the laundry room and the crack of balls on the pool table.

Mike was standing near the doorway looking relaxed, his curly shoulder length hair wet from a recent shower, wearing patched jeans and a worn button-down denim shirt. He gave me a small wave when he saw me. The sophomore staffing the reception desk gave me a knowing smile before going back to pretending to study. Mike had a backpack slung over one shoulder with a half-full bottle of red wine hidden inside a fleece blanket. The visible blanket was practically a billboard for the attempt at sex, or at least a heavy makeout session. I was suddenly very aware of my outfit of jeans, sneakers and a gray Saint Anselm College hoodie, worried that it looked more like I was ready for a Biology field trip than a nighttime stroll with a coed. Mike suggested a walk to the soccer field to check out the stars. I smiled, and agreed that would be nice.

The fact that Mike was six foot three, almost 300 pounds, and had just suggested a walk in the dark as our first date should have made warning bells ring in my head. But, Mike was more likely to be described as a teddy bear than a linebacker. He smiled and laughed a lot. His full beard of thick, dark curls emphasized his round cheeks and deep brown eyes. He wore wire rimmed glasses and had a faint pink scar that ran across his forehead from a childhood car accident. He was both strong and gentle. More importantly, he was different from other guys I had met. He looked me in the eye when asking a question, loved to debate about politics and religion, and he seemed comfortable in his own skin.

We laid on the blanket together and watched the stars while talking about all the things we hoped to do that year, throughout college, and in life. I remember talking about my volunteer work from high school and how I hoped to “make a difference” through a career in social services. Mike talked about his love of philosophy, Yahweh (his car) and being part of a community.

The night had all the ingredients for passion; red wine in paper cups, a blanket, the cover of night and the excitement of a potential first kiss. Mike sat really close to me, his left leg leaning against my right, saying it was getting “cold” out. Yet, he didn’t make one move. When I got back to my room that night my roommates were dying to get all the juicy details. I was embarrassed to tell them the truth: we didn’t even hold hands on the walk back.

Twelve years after that first date, I am the one walking into a lobby to pick up Mike for a date. Nancy, the receptionist, knows me and smiles as I pick up a pen and sign in as a visitor. She asks if I have any recent pictures of Noah and I show her the mini-poster hot from the lamination machine that I brought in to hang in Mike’s room. It is a picture of Noah holding up a peanut butter and jelly sandwich that he has made himself. At the age of two he is a little Mike with forever eyelashes and golden blonde hair. She is only able to look at it for a moment before her phone rings “Good morning, Neuro Rehab Center. How may I direct your call?” She transfers the call, hands me back the picture and whispers “He’s beautiful.”

As I make my way down the hall, I juggle Mike’s large iced coffee with the picture of Noah and a rolled up fleece blanket. I press the button to disable the alarm and step into Mike’s unit. We see each other almost immediately and I notice he has a fresh haircut.  The wiffle of his crew cut makes me want to reach up and rub his head, but he doesn’t seem to like me doing that so I hold back.  Mike begins to walk towards me, yelling “Awwww!” and reaching for the coffee. As he puts the straw to his lips he looks at me and keeps walking into the common room where the “Price is Right” is blaring.

I head to Mike’s room, knowing he will follow me eventually, and look for a spot for the new picture. As I am cutting the tape to mount it to the wall, Mike’s nurse Clare comes in and immediately wants to see the new picture of Noah. She exclaims over his round cheeks and impish grin. When Mike walks into the room Clare holds the picture up higher saying “Michael, look at your son! Look! He is eating a peanut butter sandwich!”  Mike’s eyes travel over the picture, but his expression doesn’t change.

I show Mike the bag of cookies I brought for him and start to walk towards the hallway. He follows me and when we reach the unit door I fumble with the key to let us out. He walks by the door and back towards me, finally following me with a little coaxing from the cookies. We walk down the hallway to the doorway for the small outdoor courtyard. We enter and begin to walk in a circle. Mike walking fast and looking around. Everywhere except at me. He eats one cookie after another and when they are gone he heads for the exit to go back to his unit. He doesn’t notice that I am on the other side of the door when it slams shut to lock him in. I leave without saying goodbye.

Mike passed away in 2012.  But, FTD took Mike from our lives years earlier than that.  I think of FTD as a mistress in our marital bed.  Sneaky, conniving and unwanted.  FTD changed the nature of our relationship and forced me to constantly flex and contort myself and the love I had for Mike to meet his ever-changing needs.

The practical aspects of caregiving are difficult.  Bathing an adult can be tricky.  Feeding someone with swallowing issues can be delicate.  Communicating with someone who can not speak may feel herculean.  But, it is the grief and loss, the many tiny deaths that make it all feel insurmountable.  It was in those low, dark moments of sadness when I would draw on the love and kindness of others.  I knew that Mike might not react to Noah’s picture, but the staff always would.  I knew that Mike couldn’t add to my retelling of our love story, but I knew that a nurse would listen.  Even though Mike couldn’t bring me a bottle of wine, I had girlfriends who showed up with Pinot Noir in hand.

Today’s date nights include ice cream sundaes, pajamas, and Disney movies.  Noah and I snuggle in my king-sized bed and I tell him about Yahweh (Daddy’s car), listen to stories about first grade adventures, and we make plans for Saturday morning waffles.  It is a piece of the future I dreamed about.  Now I go to the soccer field to cheer on my favorite goalie.  I am always sure to cheer extra loud, just in case anyone else is listening.

1- 4 – 3

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For as long as I can remember, I was interested in my parents’ love story.  I wanted to know how they met, who liked who first, when my mother knew my father was “the one.” I always felt like that was the real beginning to our family’s story and I enjoyed listening to Mom retell it over and over.

My parents met at a “mixer” on campus at Stonehill College.  My mother was an English major there and my father attended a nearby community college.  He and his buddies heard that there were “cute girls” at Stonehill and so they decided to crash.  Mom said that Dad was wearing a pink button down shirt and she knew right away that he was going to ask her to dance.  “How did you know?” I would ask with genuine curiosity.  “You just know” is how she would always reply.  Mom had funny stories about Dad showing up overdressed for their first date (he wore a suit jacket), or what is was like meeting my grandparents and uncles for the first time (overwhelming).  From here on, their love story may have been common, or unremarkable.  But, life intervened.

My parents were college students in the late 60’s and during my mother’s sophomore year, there was a war draft.  Dad’s number was up.  He was going to Vietnam.  They didn’t get engaged before Dad left.  Mom said that Dad didn’t want to promise something that he couldn’t guarantee.  What if something happened?  Something did happen.  An ordinary love story became extraordinary.  My parents learned how to love each other living a world apart.

My favorite stories were about the phone calls.  Dad was allowed one phone call each week for three minutes.  He would alternate the weeks, calling my mother one week and his mother the next.  Mom emphasized that these calls were very important because even though Dad wrote her a letter every day, there was a big lag time in the letters and when she spoke to Dad on the phone, she knew that at that exact moment, everything was ok.

Mom was living in the dorms at the time and did not have a phone in her room, but there was a pay phone in the lobby that he could call.  The other women in dorm would know when Mom was expecting a call from Dad and they would all pay attention for the ringing phone.  Mom said that when she got on the phone there would be an operator on the line who would ask for $13, which Mom paid by feeding quarters into the phone.  The operator stayed on the phone while they talked and after every single phone call, the quarters would come rushing back out when Mom hung up the phone.

After hanging up with Dad, Mom would call Grandma to let her know he was alright.  Grandma would do the same for Mom when it was her week to get a call.  At the end of every call with Grandma, Dad would say “Tell Diane I say 1 – 4 – 3” the code for “I love you.”

The stories of their time apart always held my attention because it seemed so foreign to imagine my parents not together.  They were a couple that spent a lot of time together.  Sitting together on the couch at night after work, going out to dinner every week, and holding hands on long car rides.  All those letters Dad wrote?  Burned in the fireplace.  Dad said he didn’t want the reminder of time he had to be away from my mother.  Secretly, I was suspicious some of the letters might have been too romantic for his children’s eyes.

When Mom passed away unexpected at the age of 58, my parents had been married for 34 years.  I remember sitting with Dad and talking with the funeral director who commented that my parents had such a wonderful, long marriage.  Dad’s response?  “Not long enough.”

Dad has been living with Alzheimer’s since his late 50’s.  Today he is 65.  He has no idea what day of the week it is, or if he has eaten breakfast today.  But, some memories seem to have superpowers against the build up of amyloid and plaque in his brain.

Two summers ago, my sister was browsing in a souvenir shop with Dad down the Cape.  A salesperson was showing Dad the newest bracelet, called the “1-4-3” bracelet.  It was a simple silver bracelet with two charms.  The first was a circle with a picture of a boat anchor and the second was in the shape of a lighthouse withe numbers 1, 4, and 3 engraved down the front.  Dad was adamant that he needed to buy two, one for my sister and one for me.  He told my sister that is what he always used to say to my mother and so he wanted us to have them.

Dad doesn’t remember that he gave us the bracelet.  But, when I wear it I show it to him and point out the engraving on the lighthouse.  He smiles and loves to reminisce about time with Mom.  He always ends the conversation by saying “I miss her everyday.”

My parents’ love story lives on today.  It lives on in me, my sister and our children.  It lives on in Dad.  Alzheimer’s has taken away so many of his abilities, but not his ability to love or to remember love.  It is as strong and steady as the rays from a lighthouse.  A bright spot in the darkness, calling us home.