Editor’s note: This story has been updated to reflect the proper first name (William) of Dr. Gael. We apologize for the error.
ROCHESTER, N.Y. (WROC) — Ross Amico says the day he met Karen he called her “The One” and it stuck. Forty-six years later the couple’s friends and family still refer to the petite woman from Clayton, New York as “The One.”
Karen and Ross Amico are among tens of thousands of couples in New York who are struggling to cope with Alzheimer’s Disease. I first met the Amicos October 7 at the annual Alzheimer’s Walk to Remember in downtown Rochester. It was sponsored by the Alzheimer’s Association Rochester & Finger Lakes Region Chapter.
Karen was diagnosed with Early Onset Alzheimer’s at 62.
“She is the most amazing woman I have ever met in my life. You can ask any of her family they will tell you the same exact thing.” Ross says. He adds, despite multiple treatments and clinical trials the disease continues to progress.
During the walk on that rainy Saturday in October he shared that Karen, who is 69, was recently approved to receive a new drug. He said he saw testimony online about how the drug had not just stopped the progression of dementia and read studies that showed that in about three out of four patients the drug actually reversed the damage to the brain. It’s called TB006.
“Will she be the one that shows cognitive improvement, Will she be the one that stops the progression? Will she be the one group that it doesn’t help?” Ross declares, “I don’t know and that’s the honest answer.”
We agreed to meet in late October after Karen’s second treatment. As we take a seat in their living room in their home in Victor their deep love for one another is clearly communicated both nonverbally and verbally. Karen clings to Ross as he takes the lead in our discussion. It’s a request Ross made prior to agreeing to share their story.
Ross goes on to describe in detail a vivacious, caring wife who did most of the cooking for the family of four, retired from Kodak after 34 years, and handled the family finances. He called her an all around sweet human being. Ross says Karen still wakes everyday with this question, “How can I help you Ross?”
“I’d like to give more” Karen softly repeats, “I’d like to give more.” Ross replies “You give me enough believe me.”
At one point, I ask Karen to describe Ross, “He’s just a wonderful man. He supports me. We’re compatible. “she smiles. Ross adds, “We’re more than compatible, we’re definitely in love, “
Karen and Ross fell in love in 1976 during the disco craze. “And so we haver never stopped dancing ever”, explained Ross. “Our kids grew up to us dancing, we dance in the house here.” So they danced for us that afternoon.
Karen’s eyes fill with tears as they dance to the couple’s favorite song “God Gave Me You”. She sings “God gave me you for the ups and downs.” Next they listen to Karen’s favorite song “Let’s Groove Tonight” by Earth Wind and Fire. Karen sparkles with renewed energy, jumps, twirls and teases Ross as they dance. Ross recalls the time Karen danced in the aisles during an Earth Wind and Fire concert. He says Karen is the better dancer.
Despite the limitations caused by the disease, Ross makes sure they go dancing every weekend. For seven years, Ross says he’s watched as his dance partner’s health has declined.
One evening, in a desperate web search Ross found something new. A new drug by the company TrueBinding.
“This is definitely a game changer the drug TB006,” says Dr. William Gael, who practices medicine in Manhattan. He says, so far he’s the only physician in New York authorized to administer the drug.
The California company that makes the IV infusion is still in the process of completing trials so it can be submitted for FDA approval. That could take another six years Gael explains. However, it has received FDA approval to be administered to certain patients under what’s called EAP or Expanding Access Program. Currently, the monthly infusions are not covered by health insurance and can cost up to ten thousand dollars. Gael is charging Karen and Ross $6,000 per infusion.
“How can you put a price on the person that you love?” The retired High School teacher explains, “I said I’ll use up all of our investment money I don’t care.”
“We’re seeing actual reversal without adverse affects,” Gael exclaims during our Zoom Interview. He’s currently treating about seven patients.
Watch part 2
When I spoke to the Amicos at their home they had just returned from her second treatment. “And people are gonna wanna know, ‘Ross have you seen any results at this point?’ and the honest answer is no I haven’t seen results at this point.”
However the Amicos said something interesting as they explained how they met in 1976 and they knew each other was “the one” they’d marry in 1977. The couple say they have relied on their faith since the beginning of their relationship. “And Jesus appeared to her in her dream and said don’t worry because in three months everything is going to be okay,” Ross said. “Something about three months,” Karen added.
Karen’s third month of treatment is scheduled at the end of November. Ross says they plan to pay for four treatments. “We’ll probably go until December and then we’ll see at that point where things are,” said Ross. In the meantime, the couple continues to make memories. And they still dance every chance they get.
In June, Ross plans to host a golf outing in honor of Karen at the Victor Hills Golf Course. He’s seeking sponsors and players. For more details email email@example.com.