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Northwest Herald

Oliver: Yearly neurologist visits mark inevitable progression of Alzheimer’s disease

Annual visits with the neurologist are some of the hardest days for me. As a caregiver for my husband, Tony, who was diagnosed with early-onset Alzheimer’s disease in 2015, these appointments are a painful reality check.

Alzheimer’s disease progressively robs a person of their brain function. Eventually, it creates a situation where a person can die from disease complications, often by falls or aspiration pneumonia.

Researchers know that Alzheimer’s disease causes cell death and tissue loss in the brain, but they aren’t exactly sure how. However, plaques and tangles are the prime suspects, according to the Alzheimer’s Association.

As Alzheimer’s disease progresses, so do those plaques and tangles, and they spread through the cortex of the brain in a predictable way. Of course, every brain is different, so the speed of that progression can vary.

According to the Alzheimer’s Association, a person with Alzheimer’s disease on average lives four to eight years after diagnosis but can live as long as 20 years. A lot depends on the person’s age at diagnosis and whether the person has other health conditions.

One thing that Tony’s neurologist always says is that Tony looks remarkably good for someone who has had the disease for so long. He’s essentially healthy from the neck down. I can attest that Tony remains very strong, which can make his care challenging from time to time.

In the early days, the annual trip to the neurologist was a source of angst because it was proof that my dear husband was losing cognitive function.

He would be asked as series of questions that tested his awareness of where he was, who was the governor, which state he lived in and so on. There would also be a list of words to learn and repeat a few minutes later. He was asked to fold a piece of paper and to write a sentence.

Each year, fewer and fewer of these answers were forthcoming. I even tried my best to prep him on the way to the appointment, as if that was going to make a difference. One year, he did improve from the year before, but that was an outlier.

One of the last years he was able to write a sentence he wrote: I love my wife. I treasure that memory, but it breaks my heart at the same time.

As Alzheimer’s disease progresses, regions of the brain that control memory and thinking develop more plaques and tangles, according to the Alzheimer’s Association. That means more difficulties in handling money, expressing oneself and organizing one’s thoughts.

Often, this is the stage where Alzheimer’s disease is first diagnosed. The scary part of that is that the disease could have been developing years before. The Alzheimer’s Association says that those changes may begin 20 years before diagnosis.

In time, changes in personality and behavior occur, and the person with Alzheimer’s may have trouble recognizing friends and family members. The mild to moderate stages can last from two to 10 years, according to the Alzheimer’s Association.

These days, I’m not even sure Tony realizes who I am. He knows that I’m the person who is with him all the time, but it’s hard to say if he genuinely recognizes me.

The yearly check-in with the neurologist now is trying to determine more than simply cognitive function.

In advanced Alzheimer’s disease, most of the brain’s cortex is seriously damaged. Cell death causes the brain to shrink dramatically. Individuals lose their ability to communicate, to recognize family and loved ones and to care for themselves, according to the Alzheimer’s Association.

This is the stage we find ourselves. Tony has started to have something called myoclonus, which are involuntary jerking movements. They aren’t exactly seizures because he doesn’t lose consciousness, but it does make him unsteady on his feet, risking falls.

Severe Alzheimer’s can last from one to five years, according to the Alzheimer’s Association.

This is a reality check that I find hard to process. Yet here we are. All I can do now is what I have always done: the best I can for the man I love. However long we have left.

Joan Oliver is the former Northwest Herald assistant news editor. She has been associated with the Northwest Herald since 1990. She can be reached at jolivercolumn@gmail.com.

Joan Oliver

Joan Oliver

A 30-year newspaper veteran who has been a copy editor, front-page editor, presentation editor, assistant news editor and publication editor, as well as a columnist and host of an online newspaper newscast.