{"id":49029,"date":"2025-09-28T23:12:21","date_gmt":"2025-09-28T23:12:21","guid":{"rendered":"https:\/\/www.newsbeep.com\/nz\/49029\/"},"modified":"2025-09-28T23:12:21","modified_gmt":"2025-09-28T23:12:21","slug":"couple-faces-frontotemporal-dementia-together-turning-diagnosis-into-advocacy","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/nz\/49029\/","title":{"rendered":"Couple Faces Frontotemporal Dementia Together, Turning Diagnosis Into Advocacy"},"content":{"rendered":"

\u201cI used to be Sean 1.0, now I’m Sean 2.0,\u201d explains the loving husband and father of two as he reflects on his diagnosis of frontotemporal dementia (FTD)<\/a>. Once the life of the party, Sean Durbin is finding his role in social settings shifting after learning he has the progressive brain disease<\/a> that can affect behavior, speech and the ability to understand others.<\/p>\n

\u201cI love my family, and I used to always be in the middle of all the craziness that was going on with them, but there are times now I need to step back,\u201d says Sean, 58, of Mentor, Ohio.<\/p>\n

\u201cSean was the biggest extrovert, and he has started changing into an introvert a little bit. You kind of have to relearn this new version of him,\u201d says Sean\u2019s wife, Lisa Ihnat-Durbin.<\/p>\n

Leading up to his diagnosis, Sean noticed subtle signs something was off. He found himself getting distracted more easily and struggling during conversations at times.<\/p>\n

\u201cI couldn’t always get my words out the way I needed to, and I had never struggled with that before,\u201d says Sean.<\/p>\n

Lisa adds, \u201cI wasn’t necessarily picking up on anything obvious. He came to me and said, \u2018I think something\u2019s off, and I\u2019m not sure what\u2019s going on,\u2019 so we talked about it.\u201d<\/p>\n

From communication challenges to behavioral changes, like leaving lights on, Sean began documenting his symptoms. He eventually brought these up to his doctor, and that\u2019s when the journey to receive his diagnosis began.<\/p>\n

\u201cFirst, they thought it might be a sleep disorder<\/a>, so we did a sleep study<\/a>. Then they considered an autoimmune issue<\/a> or something endocrine<\/a> related \u2013 but nothing was conclusive,\u201d says Lisa.<\/p>\n

Sean was eventually referred to Cleveland Clinic neurologist Jagan Pillai, MD<\/a>, who determined further investigation for FTD was needed. Based on the symptoms and testing, which included neuropsychological testing<\/a> and an MRI<\/a>, Dr. Pillai diagnosed Sean with FTD.<\/p>\n

\"Brain
\nSean’s MRI showed frontal lobe atrophy, or shrinkage, a finding commonly associated with frontotemporal dementia (FTD). (Courtesy: Cleveland Clinic)<\/p>\n

\u201cI saw the picture of my MRI up on the screen, and it didn\u2019t look good to me. I was shocked and didn\u2019t really know what to think when he said it was FTD,\u201d says Sean, recalling the day he was diagnosed with the disease at 57 years old in March 2024.<\/p>\n

\u201cEverything shut down after we got the news. I just looked at Dr. Pillai and said, \u2018I don’t know what to do. What do I do? What do we do?\u2019 I was panicked, but Dr. Pillai talked us through it,\u201d says Lisa, who adds they had heard about FTD when it became public that actor Bruce Willis has the condition.<\/p>\n

FTD refers to a group of diseases that affect the brain’s\u00a0frontal<\/a> and temporal lobes<\/a>. As these areas deteriorate, people lose the abilities those parts of the brain control.<\/p>\n

\u201cEssentially, FTD is a term used to describe a syndrome characterized by changes in mood, thinking, behavior, personality, judgment and the ability to solve complex problems. It’s caused by the accumulation of abnormal proteins in the brain, which leads to the degeneration of the frontal and temporal lobes. FTD is one of the leading causes of dementia<\/a> in people under the age of 65,\u201d says Sean\u2019s certified nurse practitioner, Matthew Zgodinski.<\/p>\n

Most people develop FTD conditions between the ages of 50 and 80, with the average age of onset being around 58. While the cause behind every case of FTD isn\u2019t clear, about 40% of cases involve a family history of the disease. And although there are currently no treatments available, an early diagnosis is still important.<\/p>\n

\u201cHaving a clear diagnosis helps the patient and their family understand what they\u2019re facing. It allows them to anticipate the support they may need in the coming years and prepare for it. Even though there are currently no treatments for FTD per se, there are resources available to help the patient and caregiver navigate the disease,\u201d says Matthew.<\/p>\n

After receiving Sean\u2019s diagnosis, Sean and Lisa began sorting through how they were going to tell their family. To make the condition easier to explain, they referenced Bruce Willis\u2019 diagnosis to help others understand what Sean was facing.<\/p>\n

\u201cIf you say Alzheimer’s<\/a>, people know immediately what that is. If you say FTD, people just kind of give you a blank stare. It was so helpful to follow up and say it’s the same thing Bruce Willis has, and then people were able to ask questions based on what they know from that,\u201d says Lisa.<\/p>\n

While it was difficult news to share, opening up about it allowed Sean and Lisa to tap into their community of friends and loved ones for support. Receiving the diagnosis also connected them to resources, like Cleveland Clinic social worker Grace Knorr.<\/p>\n

\"Sean
\nSean with two of the friends he volunteers with. Finding ways to stay social is important for patients with FTD. (Courtesy: Cleveland Clinic)<\/p>\n

\u201cWe\u2019re grateful for Grace and this network of support because otherwise we\u2019d be trying to figure all this out on our own. You need helping hands and other people bringing you different perspectives and ideas. Don\u2019t be afraid to ask for help, and don’t wait to find the people who are going to support you throughout this journey,\u201d says Lisa.<\/p>\n

With a community of support behind them, Sean and Lisa have found life more manageable by starting each day with a plan and using a calendar to stay organized. Sean’s routine also includes doing the activities his care team has suggested to promote cognitive health.<\/p>\n

\u201cPatients with FTD should get regular cardiovascular exercise because that has been shown unequivocally to be associated with better brain function and health. Doing cognitive stimulation exercises, like puzzles and word games, is also important. Socializing and not being isolated is crucial as well for those with FTD,\u201d says Matthew, who continues regularly seeing the couple for follow-up appointments.<\/p>\n

\"Sean,
\nSean and Lisa review their personalized calendar with close friends who\u2019ve become an essential part of their support system. The calendar has helped bring structure to their days and ease the transition following Sean\u2019s diagnosis. (Courtesy: Cleveland Clinic)<\/p>\n

\u201cDuring our appointments, I\u2019m asking if Sean or Lisa have noticed any changes in Sean’s cognitive abilities. I\u2019m also reinforcing those healthy habits that will help Sean stay stable for as long as possible. I\u2019m checking in on Lisa as the caregiver as well,\u201d says Matthew.<\/p>\n

\u201cWhen Sean was first diagnosed, I thought, \u2018Oh my gosh, I wish there was more known about this disease.\u2019 The only way to change that is through advocacy, so I\u2019m appreciative of the awareness Bruce and his wife, Emma, have brought to this disease,\u201d says Lisa.<\/p>\n

\"Sean
\nHand in hand, Sean and Lisa are learning to navigate life together following the FTD diagnosis. (Courtesy: Cleveland Clinic)<\/p>\n

Highlighted in an Innovation in Aging article<\/a>, Dr. Pillai and colleagues found the news coverage of Bruce Willis\u2019 diagnosis drew a significant amount of attention to the disease and showcased the public\u2019s need for more education about it. That\u2019s because FTD symptoms can often be overlooked or mistaken for Alzheimer\u2019s or other conditions.<\/p>\n

\u201cSymptoms of FTD and Alzheimer\u2019s can overlap, but FTD primarily affects the frontal and temporal lobes, leading to early changes in judgment, behavior and language. In contrast, Alzheimer\u2019s disease mainly targets the temporal lobes and hippocampus, causing memory loss<\/a> early on while behavioral symptoms may appear later,\u201d says Matthew. He adds if a person begins noticing any cognitive changes, it\u2019s important to document what they\u2019re experiencing and share them with a friend or loved one, who can also observe and help explain these changes to a healthcare provider.<\/p>\n

The couple now continues learning how to navigate life with \u201cSean 2.0.\u201d Although he may struggle at times to focus or find the right words, he\u2019s still able to enjoy the things he\u2019s always loved \u2013 even if that looks a little different now.<\/p>\n

\u201cI’ve found it’s easier for me to have conversations with just two people at a time. It’s been a learning curve for me,\u201d says Sean.<\/p>\n

\u201cWhen we went to Punta Cana with some friends recently, there were two pools: the party pool and the quiet pool. Before, we would’ve been at the party pool \u2013 but this time, we were at the quiet pool and couldn’t have been happier,\u201d says Lisa.<\/p>\n

\"Wedding
\nNow in their ninth year of marriage, Sean and Lisa say their relationship has only grown stronger. (Courtesy: Sean and Lisa)<\/p>\n

\u201cRight now, we\u2019re trying to do everything we possibly can while we can. I\u2019m still me, just to a little bit of a lesser degree. We\u2019re learning to adapt,\u201d says Sean.<\/p>\n

\u201cWe recently had our wedding anniversary and Sean said, \u2018You know, I think we\u2019re stronger than ever together.’ I guess sometimes adversity helps you out. I’m grateful for every day and moment I have with Sean and that will never change,\u201d says Lisa.<\/p>\n


\n Related Institutes:
\n Neurological Institute<\/a>
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