KENMORE, N.Y. (WKBW) — David and Donna Gonlag have been nearly inseparable since they met almost 40 years ago, saying "I do" just a month after getting engaged.
"We started dating and not very long, I think we went on three dates before I asked her to marry me and we just knew it was right," David said. He continued, "I don't know what I would do without her."
The couple has four kids and had successful careers, holding true their vows, to have and to hold, in sickness and in health.
But it was five years ago David found out the disease that touched his great grandmother, grandmother and aunt, had also touched him. It was in his early 50s that David had been experiencing issues with his memory. At work, he'd forget what went on in a meeting, out of work, he'd forget where he was going and at home, he became irritable and insensitive towards his pets and family.
"There were days he wouldn't do anything at work because it was just confusing and frustrating for him," Donna added.
Doctors diagnosed David with dementia. He was just 55. Now five years later, it's believed David has Amnestic-MCI with FTD Alzheimer's variant. It's a mouthful, but a life changing diagnosis. He joins 200,000 under 65 also battling Alzheimer's in 2019.
By now, doctors expected David to not be able to speak, but he he still can, and gets the message out through the Alzheimer's Association of Western New York.
"I've learned, one day at a time," he said. Both are looking forward to celebrating 40 years together this August, "And many more, I hope," Donna added.
Where are we medically?
Every three seconds a new case of dementia is diagnosed in the world. The World health Organization estimates 47 million live with the memory disorder. In the U.S., the Alzheimer's Association says 5.8 million battle Alzheimer's specifically, which is a type of dementia, in 2019. With the baby boomer generation getting older, experts expect the number of those living with Dementia or Alzheimer's to drastically increase.
"For that to hit ya, it's not something that's easy to deal with at all. You go to one extreme to the other," David said.
The National Institute on Aging ranked Alzheimer's as the sixth leading cause of death in the U.S., adding recent estimates may put the disease as third in older Americans.
"If we do nothing, we are going to be in very deep trouble because the numbers are staggering," Sarah Harlock with DENT Neurological Institute said. She is in charge of the DENT Integrative Center for Memory and has worked with dementia patients for years.
So where are we medically? In the past few years, numerous promising drug trials have failed, including one this past March with a promising drug called aducanumab meant for those with early-onset Alzheimer's. There are drugs on the market to slow the progression of the disease, but none to stop it entirely.
Dr. Kinga Szigeti heads the Alzheimer's Disease and Memory Disorders Center at the UB Jacobs School of Medicine and Biomedical Sciences. She says Alzheimer's is thought to develop about 20 years before symptoms are even noticeably.
"We need more medications in the ideal world and everyone is looking for that holy grail," Dr. Szigeti said. But with every failure, comes something the Alzheimer's community can learn from.
Something that gives patients, like David, hope: "I see within the next 5-7 years, I'm hoping. At least something to slow the progression."
"Even though the treatment is not there yet, we have a lot of drug candidates and we have the tools to measure if they work," Dr. Szigeti said. It's not just drugs that are being looking at to cure the disease. Areas such as lifestyle changes are also being explored. DENT Neurological Institute is looking at many possibilities including holistic approaches.
"Beyond medications there are things we can be doing to change the trajectory of this disease," Harlock said.
The key here, experts say, is early detection.
The toll on caregivers
Since David was diagnosed, Donna has become her husband David's full time caregiver. Before her husband was diagnosed, she cared for his Aunt with Alzheimer's.
While David still has his memory, the Gonlag's are getting household things--like finances--together.
"You ask how you're going to get through this. Well a lot of people say how are you going to get through marriage? You just have to be committed to it and make up your mind that this is the way it is and this is the way it's going to stay and we're going to do it," David said.
"It does take a toll on caregivers," Harlock adds. A million caregivers, including Donna, right here in New York state.
This disease takes both mental and physical tolls on caregivers acting as 24-hour care. Plus, treatment, memory care facilities and changes in employment income since caregivers often have to leave their jobs, add up. According to the Alzheimer's Association, the total lifetime cost for someone living with Dementia tops $350,000 dollars.
"Typically because they do such a good job taking care of the person with the diagnosis of Alzheimer's, they tend to kind of neglect themselves," Harlock said. Often she is the first person to meet with a family after an Alzheimer's or Dementia diagnosis.
"I think that they need to know that there is support out there and available to them." Across Western New York, there are numerous support groups, including one at DENT, as well as classes both online and in person to help through this time.
Donna goes to a caregiver support group every month and suggests anyone going through this to do the same. The Alzheimer's Association has a list of resources for caregivers.
"Hook up with the Alzheimer's Association, they help you keep your sanity," she said. The biggest message to caregivers: you are not alone.
"This diagnosis changes things, but it doesn't have to stop things," Harlock said.
