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Brian and Sandra: Care Partners Through Alzheimer's Disease
June 11, 2018
Brian was 60 when he first noticed having memory issues. He was on the road a lot, managing a mortgage sales group. “I started having trouble multitasking,” Brian said. “If there were any distractions, I couldn’t remember what I was doing.” He had never had any problems like this before.
His wife, Sandra, did not worry at first. “Brian’s job was stressful and demanding,” she explained. “It’s not uncommon to sometimes forget names or appointments but remember them later. I became concerned, however, when Brian became concerned.”
Later, Brian repeatedly locked himself out of his Blackberry because he couldn’t remember his passcode. He then started having trouble recognizing people when they were out of context. “I didn’t recognize my longtime dental hygienist when I saw her at the grocery store,” he recounted. “And when I didn’t recognize my own brother standing next to me in a restaurant bar when I was there to meet him, I knew I needed to seek medical help.”
Brian’s family has a history of Alzheimer's disease, a condition that causes a slow decline in memory, thinking, and reasoning skills. Brian knew that those who have a family member with Alzheimer's disease are more likely to develop it themselves. Being aware of this, he became concerned and began to seek help.
Brian saw at least six different doctors in his area. “I was diagnosed with everything from chronic fatigue syndrome and sleep apnea to depression,” he recalled. “I was told that I was too young to have Alzheimer’s Disease.” Desperate for more concrete answers, Brian researched more about memory problems — and found the Weill Cornell Medicine Alzheimer's Disease and Memory Disorders Program and Dr. Michael Lin.
When Brian and Sandra met with Dr. Lin, they were told that Brian’s symptoms were consistent with Alzheimer’s. Dr. Lin then suggested a test to confirm or rule out Alzheimer’s disease. Brian recalls, “None of the other specialists I had previously seen had told me about this test.”
Dr. Lin ordered a lumbar puncture (also called a spinal tap) to check for two proteins (tau and beta-amyloid) strongly linked to Alzheimer’s disease. Soon after, Brian had his answer. Unfortunately, the spinal fluid amyloid and tau levels were consistent with Alzheimer’s disease. “I was shocked, but I was also relieved to finally know what was wrong with me,” Brian shared.
Coping with the diagnosis
For Sandra, it was heartbreaking news. But Sandra agreed with Brian that it was a relief to now know the truth. She recalls, “I told Brian, ‘I am so sorry. We will get through this together.’”
After the diagnosis, Sandra got to work researching information about the disease and resources for Brian and their family. Brian qualified for disability benefits (which were easier to obtain given objective biochemical confirmation of diagnosis), and he and Sandra moved to a retirement community. Brian began taking medications, which he feels has helped his memory.
Brian is now 68, and he’s happy to say that his cognitive deterioration has been slow. He sees Dr. Lin every six months. At Dr. Lin’s recommendation, Brian and Sandra are now taking part in a global Phase 3 clinical trial for Aducanumab. He goes to Weill Cornell Medicine once a month for an infusion and gets an MRI every few months as part of the study.
He is still in the early phases of Alzheimer’s disease — often incorrectly labeled “early-onset” Alzheimer’s disease. “Early phase” indicates that symptoms are still very mild, whereas “early-onset” indicates that symptoms began at a young age (less than 60).
Medication, staying active, and careful monitoring has helped Brian maintain a high level of cognitive ability. “The slow progression of Brian’s disease is a blessing,” said Sandra. “The changes are very slow, very subtle. Brian remembers stories a little differently. But the essence of the story is still there.” Sandra continues, “Brian becomes frustrated when he can’t find something or remember something. My remaining calm helps his frustration pass more quickly.”
Enjoying the present, preparing for the future
“We live more in the present now — which is nice,” she said. “It’s a comfort knowing that the connection and intuition we have with each other are so strong. That will always be there no matter what happens down the road.” Because they are managing the disease together, Sandra calls herself a “care partner,” not a “caregiver.”
Sandra and Brian have prepared for the worst-case scenario — the final stages of his disease. Sandra has made a list of agencies that will provide in-home help when they eventually need it. They have prepared living wills. “All of our finances are in order,” Sandra shared. “Because all of this is out of the way, we can just enjoy our time together.”
“Everyone in Dr. Lin’s office at the Memory Disorders Program is so helpful and dedicated to their jobs,” Brian praised. “They have gotten to know us, and we have established a personal relationship. We feel welcomed every time we’re there.”
“When you know you have a problem,” Brian advised, “go to a competent place.” He recommends going to a teaching hospital because they have access to the latest research and clinical trials. “Do your research,” stated Brian. “That’s how I found the Memory Disorders Program at Weill Cornell Medicine. There’s no cure for Alzheimer's disease, but if you catch it early, you can manage the symptoms and possibly slow down its progression.”
Learn more about the cutting-edge treatments and services offered at the Weill Cornell Medicine Alzheimer’s Disease and Memory Disorders Program.