Help Tom Spend His Remaining Time At Home

We are Tom Lucente’s Friends (Matt, Alyson, Steve, Olivia, & Indy). We’re raising money for Tom because he is 56 with a terminal disease. All he wants is to be at home with his wife, Cyndi, and their three cats for the time he has left.

Tom is strong, funny, stubborn as hell, and devastatingly handsome. We’ve known him since high school/college. No friend is more loyal. He and Cyndi founded and run the Richmond Fencing Club, a non-profit, where they’ve trained recreational and future collegiate fencers for 18 years. About six years ago, Tom began to stutter and his right hand started to weaken. After years of doctors, scans, and tests, he was diagnosed in February 2020 with Corticobasal Degeneration (CBD). He had to stop working, and began receiving disability in April 2020.

CBD is a rare condition in which areas of your brain shrink and your nerve cells degenerate and die over time, with a life expectancy of 6-8 years after symptoms start. The disease affects the areas of the brain that processes information and control movement. Tom gradually lost his speech and use of his right hand. He can grasp things with his left hand, but his brain has trouble telling his hand to let go. He now communicates with Yes and No buttons. Swallowing is also difficult. His motor skills are very poor, so he needs assistance walking, eating, and bathing.

Tom and Cyndi got COVID in September, and Tom ended up in the hospital. He came home after several weeks of rehab, but was readmitted a week later, for three more weeks of hospital and rehab. The extended time in bed weakened him despite the occupational and physical therapies. Cyndi needs to hire in-home care because Tom is too heavy for her to lift and move on her own. When he falls (sometimes several times a week), Cyndi calls one of us to come over. She is a tower of strength who has managed to provide 24/7 care for her husband while working her full-time job from home. She is also still running the Richmond Fencing Club. But she needs more help than family and close friends are able to provide.

Insurance will not cover in-home care. They say it is a long-term disability item, and Tom does not have a separate policy for that. So the funds we raise will go directly toward in-home care, which is $30-40 per hour. Here is the plan:

Our goal of $50,000 is based on a budget of $1200-2000 per week for the next 6 to 9 months. We have raised $2000 so far. That has gone to the purchase of a power lift recliner and shower modifications. In-home care starts the week of 12/12/22.

Steve, an accountant, will oversee donations and manage expenditures from an account exclusively for Tom's needs.

Your donation will allow Tom to stay in his home for as long as medically possible - hopefully for the rest of his life, however long that may be. He’ll be able to have visits with his grandson, Jacobi, who has autism and does not do well in unfamiliar settings. And as his cognition declines, he will feel secure, comfortable, and loved. We will post updates so that you know where the money is going. Any unused funds raised will be split equally between the Richmond Fencing Club and Cure PSP, a non-profit dedicated to the awareness, care and cure for three neurodegenerative diseases: progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA).

CBD is so rare that it is often misdiagnosed or missed completely. It is considered atypical parkinsonism, in that it shares features of Parkinson’s, but it progresses differently and does not respond to the same treatments. The largest study on CBD had 14 participants, and 7 were not correctly diagnosed until after death.

If you have any questions, please reach out. We are happy to answer them.