We Will Be Back – Faith in FTD

Standard

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

Standard

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