About Team Lousers

On January 13, 2019, after a quick surgery to have a clot removed from his basilar artery, Lou was admitted into the Neuro ICU.

It was at this time that Lou was diagnosed with the devastating prognosis of “locked-in syndrome.” It was also at this time, we decided that this diagnosis would not stop us from living. Lou has too many good years ahead of him and HE didn’t want to give up. Lou was involved in every decision being made even though he was only able to blink. After weeks in the ICU, he was moved to a step down floor and then finally to a regular room.

In early March of 2019, Lou was accepted into an acute rehab on the other side of the city. Arriving in rehab, one of the first people we met as Lou was getting settled into his new home for the next few months, was the floor psychologist. With her compassion, it’s no wonder we became fast friends. It’s also not surprising she was awarded Humanitarian of the Year by the United Spinal Association NYC the following year.

Lou made progress in rehab, like holding his head up on his own and his eyes started to gain more movement. He would track us moving about the room and rolling his eyes anytime David Putrino, of Putrino Labs, would walk into his room. We would have David visit as often as possible because this was good exercise for Lou! David put us in touch with some amazing experimental devices to help with Lou’s pain, help us to communicate better with Lou and so much more.

As Lou’s stay in rehab was coming to an end, we prepared to move him home. We were trained by the staff to administer medications, feed, bathe, dress, transfer Lou to his chair along with other essential tasks. We said good-bye for now to many of the staff and went on to hire private PT, OT and Speech Therapists to come visit Lou at home. As long as Lou wanted to fight, we would provide everything he needed. We would hit plateaus, but then he would surprise us and clench his hand or wiggle his foot. Thanks to all the eye-rolling, his eyes were the strongest muscle in his body.

When the Pandemic started to hit NYC in January 2020, we discontinued all of Lou’s in-home services as we went into quarantine. After doing research on top therapy clinics around the country, we found The Miami Project, which had just built a state-of-the-art facility. We found an apartment in Miami, signed a lease and planned a move. Unfortunately, this when the pandemic ramped up and travel bans were put in place. We were delayed for 3 months, but finally made the move to Miami.

Currently, Lou’s condition is stable. He is able to clench his left hand, move his left arm, roll his head around and control his motorized wheelchair. We have an eye-gaze communication device he is learning to use to communicate better with others. Lou’s personality continues to shine through as he laughs when he thinks he is funny and pushes buttons at any chance he can get.

Being a caregiver to a family member like Lou is a tremendous role and brings new challenges to navigate. We are blessed to have Lou with us and he is blessed to have us. Our journey will continue on in a very positive and productive way. In creating Team Lousers, its mission and each of the posts, it is important to know that all content is approved by Lou himself. He will be contributing to blogs in the future, by writing his own with his communication device.