For our family navigating the challenges of Ed's disease seems to be ongoing.  Ed, affectionately known as Big Time had a diagnosis of FTD confirmed in April of 2016.  It's now 6 years later and FTD is as slippery and elusive an enemy as it was when we first learned of it.  If you are just learning about Ed and our story he is the 5th of 8 children, an uncle and great uncle to dozens of nieces and nephews, a Marine and the strongest and hardest working guy on a job!

The blows seemed to come so fast once we had an accurate diagnosis.  Loss of independence, impaired abilities, the vision of his future.

Only weeks after Ed's diagnosis we had a chance to join in on an educational day sponsored by MGH FTD (https://ftdboston.org/).  This was an eye opening experience and so key in helping our family get on the right track.  We learned what we needed to do right away as well as what we should expect to do in the very near future.  Elder law specialist & long term care facility were just 2 of the topics we never thought we would be facing with our 53 year old strong Marine brother.  

We are taking this opportunity during the AFTD 2022 With Love campaign to take time to think about our brother Ed - a gentle giant. Big Time loved to laugh, to cook and to eat good food. He loved to listen to music and ride his Harley.  We're thinking about where he is with his disease and where we are as a family and individually with our lives.  

The pandemic has played an enormous role in our ability to connect with Ed.  With limited, visitation which has sometimes gone on for months, it is very hard to get a clear picture of how Big Time is doing!  Really tough.  On a future update on this site I will share an essay from AFTD's Help & Hope newsletter which describes how we were able visit with Ed during lockdown!  Pretty unorthodox but extremely creative idea hatched by our brother Chris!

Our updates during this campaign may run the gamut from favorite old memories and pictures to song lyrics and crazy inside family jokes.  Although we are so saddened by Big Time's plight (especially his inability to speak and therefore not add to this page) we have so, so many loving and fun memories to share.  

We have chosen to support AFTD's With Love campaign because we love our brother Ed. Will you choose to support us? Please consider making a tax-deductible donation to our fundraiser, the process is fast, easy and secure. Thank you in advance for your support and please share our page with your contacts via email, social media and/or text message.

About FTD: Frontotemporal degeneration (FTD) is the most common form of dementia for people under the age of 60. It strikes in the prime of life, gradually eroding an individual’s personality: their ability to speak, make sound decisions, control their movements, behave within social norms and relate to those they love. FTD devastates familial relationships, finances and even the health of family caregivers themselves. Currently there are no approved treatments, and most providers lack knowledge of appropriate care. Average life expectancy is 7-13 years after the start of symptoms.

Big Time and best friend Johhny Saliba at Ed's 50th birthday party

Biggie's biker vest

Ed's bike

Big Time's 55th birthday