A CT man pushing for a diagnosis got a devastating one. Then he learned of ‘amazing breakthroughs’

Hartford Courant – Sunday, October 19, 2025
By Helen I. Bennett

Lee Ross knew there was a problem when he was starting to search for words, or couldn’t finish a sentence.

He was right.

Ross, 61, a married father of two adult sons, was diagnosed with early onset Alzheimer’s disease.

The diagnosis did not come easy.

“Given my background, I had been noticing for a couple years that I could not remember things like I used to,” said Ross, an attorney who has worked for the state judicial branch. “That had never been a problem for me in the past.”

So Ross saw doctors, rejecting suggestions that it was caused by anxiety or lack of sleep, and did not stop until he had a diagnosis early this year, which came after testing and brain scans, he said.

“I kept pushing to determine … I just knew that something wasn’t right,” he said. “They found it. Alzheimer’s is a disease (where) amyloid plaque starts to build up in your brain, the plaque destroys neural connections, it impacts your cognitive ability.”

Ross, a graduate of UConn Law School, who has been married to his wife, Doreen, for 37 years, had to retire, he said. He had been working as the legislative director at the judicial branch for four years, a job that required acting as a liaison with the legislative and executive branches, as well as setting legislative priorities, all of which require relying on memory and reasoning, he said.

It was a difficult time after the diagnosis, he said.

“All of a sudden I am an Alzheimer’s patient,” Ross said, noting that when he first got the diagnosis, he knew nothing about the disease.

Doctors “caught it early,” but there is a buildup of the plaque, he said.

“I am pretty high functioning, (but) the anxiety of having it is hanging over your head,” he said.

Then, Ross said, he “learned pretty quickly of some amazing breakthroughs.”

One of those is the drug Leqembi, a drug used to slow the progress of Alzheimer’s disease.

The drug, made by Eisai in partnership with Biogen, is a prescription medication “used to treat people with early Alzheimer’s disease, which includes mild cognitive impairment (MCI) or mild dementia stage of disease,” according to Eisai .

“The drug slows progression of the disease by reducing the build up of different forms of the protein amyloid in the brain.” Time magazine reported.

“I didn’t hesitate for a second,” Ross said, about his decision to use the drug. “I could stay relatively high functioning for a long, long time; it is amazing what researchers are doing.”

Ross said he, his wife, and their adult sons talked about the treatment and he decided “the benefits of this far, far outweigh the risks.”

Recognizing the irony of his statement as he said it, Ross noted, “It was a no-brainer for us to do.”

“If I couldn’t use this medication … the benefit of this medication is to actually remove some of the plaque from your brain, it helps remove it, so further progression of the disease is slowed,” he said.

The drug is not without risks, as some patients can experience symptoms such as “headache, confusion, dizziness, vision changes, nausea, aphasia, weakness, or seizure,” according to the maker of Leqembi, and it can cause temporary swelling in areas of the brain or small spots of bleeding in or on the surface of the brain.

Ross said he did have some brain swelling, and stopped using the drug for a time, but now is using it again.

“The alternative is just not an option,” he said.

Kristen Cusato director of communications, Alzheimer’s Association Connecticut, Rhode Island Chapter, noted that the drug creates “a whole new world to treat patients” because it is one of two approved by the FDA that “change the course of the disease.”

The two FDA-approved drugs are Leqembi and Kisunla.

“The plaque can start forming up to 20 years before symptoms — it gives families more time together,” Cusato said, of the treatment.

According to the association, there are 80,000 people living in Connecticut with Alzheimer’s disease and twice as many caregivers. There also are about 250,000 people in the United States living with younger onset Alzheimer’s, which is a phrase used for people who were diagnosed below the age of 65. The majority of people with Alzheimer’s disease are over the age of 65, according to the association.

Cusato said that, since his diagnosis, Ross has become connected to the association and has become “an amazing example of … trying to spread the word of early testing and early diagnosis.”

“Lee took himself to the doctor — to get answers a lot of people don’t,” she said. “A lot of people have a hard time getting a diagnosis … getting in this early, and exploring the medications …. clinical trials, there is a lot going on.”

“A lot of people are afraid, understandably so but education is key when it comes to this disease,” Cusato said. “If you are in the early part of the disease, there are a lot options for you. We really want people to take their concerns to a doctor.”

“Take charge of your own brain health,” she said.

Cusato also noted that a U.S. Pointer clinical trial found that there are actions that have cognitive benefits. The “two lifestyle interventions targeting a combination of physical activity, improving nutrition, cognitive and social challenge, and health monitoring improved cognition in older adults at risk of cognitive decline,” according to the study.

Cusato noted Ross started a team for the upcoming Walk to End Alzheimer’s team for the Greater Hartford Walk, has pushed for donations and is speaking out to help others.

Ross said while he is not “the kind of person to jump into a cause,” he became very hopeful after learning more about what was available for treatment and believes it is correct to push and advocate for early testing, so other people also have the opportunity he feels “so thankful” to have.

“By doing that, I found this early enough, and now with this medicine I have the benefit of something, say, somebody five years ago did not have,” he said. “I just felt, if I could do something, if I could maybe tell my story a bit, maybe they would think ‘I should get some testing.’”

Ross said so far on the drug, he hasn’t “really haven’t felt very different. But he noted the treatment takes 18 months and he has had six. “I don’t seem to be getting any worse — that’s OK I’ll take that,” he said.

“I am hoping to stay this way for quite a while,” said Ross, who noted he thinks he will be part of the state dementia task force.

The Walk to End Alzheimer’s Greater Hartford is Sunday, Oct. 19 at Rentschler Field. The site opens at 9 a.m. The moving Promise Garden ceremony is at 10 a.m. You can register at alz.org/walk.

10 Signs of Alzheimer’s, according to the association:
1. Memory changes that disrupt daily life
2. Changes in planning or solving problems
3. Difficulty completing familiar tasks
4. Confusion with time or place
5. Trouble understanding visual images and spatial relationships
6. New problems with words in speaking or writing
7. Misplacing things and losing the ability to retrace steps
8. Decreased or poor judgement
9. Withdrawal from work or social activities
10. Changes in mood or personality

Anyone with questions about Alzheimer’s or any other form of dementia, can call the Alzheimer’s Association 24/7 Helpline at 1,800.272.3900 or go to alz.org/ct.

Access this article at its original source.