I’m Glad I Was Diagnosed with Alzheimer’s – A First-Person Account

DSC_0096At age 41, Joanna Brooks Fix was a rising academic star. She earned three college degrees. She was the chair of criminal justice and management at a major university…a specialist in organizational psychology who consulted with America’s Most Wanted.

Flash forward eight years. Who could have imagined that at age 49, Joanna would have been out of work for six years? She can no longer drive. The task of loading her dishwasher leaves her totally flummoxed. And she recently put her life in danger by going outside in the middle of the night in a blizzard to check the mail.

Least of all, who could have predicted that Joanna would acknowledge that she is living with Alzheimer’s disease, and is happier than she’s been in years? That last statement requires some explanation, which Joanna will gladly provide.

To understand Joanna’s state of mind today, let’s go back a few years. The daughter of a Marine, Joanna was raised to tough it out…to go to work unless you weren’t physically able. Even though there was a history of Alzheimer’s disease on her mother’s side of the family, it didn’t cross her mind.

The first signs

In 2010, she was living a hectic lifestyle. She even walked away from a serious automobile accident in which the other driver – who rear-ended Joanna’s car – died at the scene. But within a year, the first cracks in the façade of her memory began to appear. The accomplished multi-tasker was exhausted. She’d fall asleep in her work clothes. She began to worry that her students weren’t getting value from her.

Her first visit to a neurologist came at age 43. An MRI showed extreme atrophy in her brain. While there was mention of Alzheimer’s in her medical records, doctors didn’t deliver a diagnosis. Various theories were put forth, ranging from depression to a brain tumor, a parasite or Multiple Sclerosis. Her own family members began to question why she couldn’t – or wouldn’t – keep living her dream life.

“I went years without a diagnosis,” Joanna said. The uncertainty played havoc with family relationships. Still, Joanna pressed on until, after about four years of consultations with doctors, she finally received an Alzheimer’s diagnosis.

“The worst thing is not knowing”

While no one, least of all Joanna, will ever celebrate the onset of Alzheimer’s disease, she did acknowledge that she feels more hopeful now than at any time since her diagnosis.

“When you don’t know what you’re dealing with, it’s like you’re sitting at a red light forever,” she said. “The worst thing that can happen (for a person living with Alzheimer’s) is not knowing. You have to keep going until you get an answer. Life is better when you know what you’re facing.”

The difference now is that Joanna and her husband, Forrest, can plan their lives. He has retired from his chiropractic practice to care for her, and having him present has given her great consistency and comfort.

“His touch calms my brain,” she said. “Nothing else can do that.”

Joanna is quick to dispel the notion that Alzheimer’s is easy to deal with. In addition to the decline of her memory, she has seen her senses of taste and smell diminish, and she wrestles with insomnia. Each creates its own challenges.

“Who doesn’t want to taste their food?” she said. “There’s some depression with losing that. I started spicing my food so much to taste it that I got an ulcer.”

Her insomnia also led her to take an ill-advised, middle-of-the-night trip to the mailbox in front of her house in the midst of a blizzard. Joanna reached the mailbox – a mere 30 feet from the house, but as she turned around, all the houses looked the same. With her husband sound asleep in the house, Joanna panicked. Luckily, she recognized her name on the mail, and was able to match the address to the number on the house, averting a tragedy.

What does the future hold?

The future holds many questions for Joanna and Forrest, but they have found an outlet for their passion of educating people about the disease through the Alzheimer’s Association of Colorado.

“You don’t need to wait to reach out to the Alzheimer’s Association to talk with an expert,” Joanna said. “They have supports in place. They are here to help you.”

Joanna also acknowledges that devoting her energy to the Alzheimer’s cause is a way of paying forward.

“I’m doing this for you, not for us,” she said. “I’ve already got Alzheimer’s. I’m only 49, so people need to understand it could happen to anyone. You don’t get it (Alzheimer’s) because you are a smoker. You don’t get it because you drink too much. You don’t get it because you do or don’t go to church. And you don’t get it just because you’re old…”

Reflecting Joanna’s focus on the importance of an early diagnosis and getting support, the Alzheimer’s Association has several programs that are geared toward helping persons who suspect they may be living with memory loss.

The first is a program for the medical community: Rapid Referral, which directs an individual diagnosed with dementia – or their caregiver – to the Alzheimer’s Association for the full range of services provided at no charge to families. These individuals can also contact the Association directly through its free 24/7 bilingual Helpline at 800-272-3900.

“There is research that shows if people with dementia can be identified earlier in their diagnosis, it can have enormous implications for the individual and their caregivers in terms of quality of life,” said Amelia Schafer, interim executive director of the Alzheimer’s Association of Colorado. “In addition, studies show that it can save up to 15 percent of the eventual cost of care.”

The second program is TrialMatch, a free matching service to connect individuals with Alzheimer’s, caregivers, healthy volunteers and physicians with current Alzheimer’s studies. The continuously updated database contains information on more than 260 promising clinical studies being conducted at more than 700 trial sites across the country.

“I don’t know how anyone can get along with this disease without the help of the Alzheimer’s Association,” Joanna said. “We attended support groups with another couple, which is helpful to understand that other people are going through this too and having a similar experience. The Association gave us so much stability, education and support.”

In the meantime, Joanna and Forrest press ahead with their lives.

“This disease is not my identity,” she said. “There are days I forget that I have Alzheimer’s. I have a whole other life, even if it is different from other people my age.”

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