Support Larry as he lives with ALS

To Our Dear Family and Friends Who Have Given Us So Much,

Larry continues to bravely face all of the ravages that ALS forces upon him. Though it is difficult for him to respond to texts and emails he does appreciate receiving them, hearing about your lives, perhaps with a picture, and a good bawdy joke or story.

Larry spends his days playing New York Times word games, trying to achieve Queen Bee status on Spelling Bee, keeping up with free agent signings and trades for The Mets, watching dark and compelling shows, playing weekly Euchre games, and visiting with family and friends. We sometimes go for strolls in the neighborhood or on paved trails nearby.

Larry has a small cadre of Caregivers that help to change his gauze, give him showers, set up his feeding tube nutrition, and ready him for the day or for bed. He still flashes his beautiful smile daily and it still lights up the room. He also has a team of Home Health providers who manipulate his limbs to keep them flexible and teach us, his Caregivers, how to improve our skills.

On January 24, 2025 it will be 3 years since Larry was diagnosed with ALS. The journey so far has been different for Larry, Michael, Daniel, and me as we each have our own obstacles and perspectives. It has been difficult, as one can imagine, tortuous at times, with anguish even. But also, we have felt Love, generosity, thoughtfulness, and kindness we never could have expected from many friends, family members, neighbors, and even strangers.

Thank you, our GoFundMe Angels, for all you have done and continue to do to help us in our “Life with ALS”. GoFundMe contributions pay for Caregivers as this is an out of pocket expense not covered by insurance of $7,000-$10,000 per month. The only equipment we need is an upgrade to Larry’s eye gaze computer. His current system is buggy, slow to respond, and apparently more frustrating to use than most other brands. So, we would like to try to find something that will make it easier for Larry to communicate. These computers cost about $13,000.

If even one candle is lit, there is no darkness. Your light continues to sustain us.

Many thanks for all the Love and Support. In Gratitude,

Larry, Roxane, Michael, and Daniel

Larry and Roxane at Selby Gardens

Daniel's Recital

Family Support

Family Pic

Bobka discovering how good baby's head smells

In October 2021, Larry Solowey noticed that while playing the French Horn, he no longer had his usual dexterity in his left hand. This realization prompted doctor visits, referrals, and tests. All the while, Larry, a professional classical musician, continued to play—and to experience more and more difficulty doing so. On January 24, 2022, Larry’s neurologist stated, “You have Lou Gehrig’s Disease”—also known as Amyotrophic Lateral Sclerosis, or ALS.

Even today, despite global efforts and awareness, ALS is a horrific, degenerative neurological disease—and is still 100% fatal. It is gradually eating the neural connections between Larry’s brain and his muscles, and will eventually leave Larry paralyzed. It won’t stop until he can no longer walk, write his name, speak, or swallow—and, finally, until he can no longer breathe.

With the help of many professionals and the support and love of his family, friends, colleagues, and neighbors, Larry is living bravely with ALS, in dignity and grace. Even though he can no longer walk on his own, speaking has become difficult, and he tires easily, Larry still laughs infectiously, makes bawdy jokes, and watches Mets games with hope and despair (like all Mets fans).

The ALS Association has provided Larry with a motorized scooter so he can still go for “walks,” as well as a powered wheelchair so he can move around his home when he is too exhausted to use his walker. He and his family are also currently waiting for the Florida Blue insurance company to cover the cost of an expensive, FDA-approved medication that could slow the progression of his disease—and give them a few more months to spend together.

Despite federal benefits available to ALS patients and the extraordinary generosity and support Larry has received from his employer, the Sarasota Orchestra, there are expenses that will inevitably fall to Larry and his family. These expenses—including the cost of home health care, which is $28 per hour on average ($20,000 per month for 24/7 care), $39,000 for a used van with a power wheelchair lift, and the cost of retrofitting their home to be wheelchair accessible—will only continue to mount as his disease progresses.

If you are able to help out Larry and his family—his wife Roxane and his sons Michael and Daniel—they would be incredibly grateful. Please consider donating whatever seems right to you.

Your gift, however large or small, will truly help Larry continue to live his life with humor, lightheartedness, and peace for as long as possible—and give him the knowledge that his family will not be left financially insecure.

Whether or not you are able to help financially, Larry and his family would also be deeply thankful if you would consider sharing this post.

Thank you—and Love to you all.

This page is being administrated on behalf of Larry and his family by his childhood friend, Amy Hersh. All donations go directly to the Solowey family.