Seeds of Hope

What happens when memories disappear? How does a person deal with forgetting things that they once knew?  Words. Names. Events. All lost in some sort of neurological trashcan. A landfill of memories, buried deep in the soil of the mind. Living with diagnosed dementia can be terrifying, but there are ways to plant new seeds of hope.

Dr. Darby Morhardt is a clinical social worker at Northwestern’s Cognitive Neurology and Alzheimer’s Disease Research Center . It is one of the twenty-six existing Alzheimer’s research centers in the country.

Dr. Morhardt specializes with people experiencing memory loss and dementia. Lewy Body disease (LBD) patient, Natalie Ross was diagnosed with LBD years ago when she noticed she wasn’t driving as fast as she thought.

“I drove slow. My friends said I drove slow. Before, when I was younger, I drove fast.  I started to drive the limit. I remember my right turns were off too, I veered over the right curb every time. That is when I knew something was off.”

Lewy Body Disease (LBD) is not a rare disease. According to the Lewy Body Disease Association it affects an estimated 1.3 million individuals and their families in the United States. 

Because LBD symptoms closely resemble other cognitive impairments such as Parkinson’s or Alzheimer’s it is currently widely under diagnosed. The symptoms of those diagnosed with LBD can range and vary from day to day. The latest clinical diagnostic criteria for LBD include dementia and a diagnosis of Parkinson’s disease.

Ross reacted to her diagnosis with disbelief. “I was filled with pure utter, rage, and terror,” she said. “After the initial shock I wanted to address the stigma. We need people to understand and be able to talk. People don’t want to hear about mental illness or that you’re sick.”

“There are no cultural norms that address these diseases. [There are] No normative ways of talking about dementia, no way of understanding,” she stressed.

Since diagnosis, Ross has had a difficult time coping with LBD.

Natalie Ross in front center, Torey Darin and Shirley Coenen. Photo by: Julianne Hill

“It’s one thing asking for help, and another to be perceived as needing help,” she said.

Living with LBD, or any form of dementia can come along with so many other difficulties, besides just memory loss. “I can’t read or write due to my tremor in my hand and my cataracts,” Ross said.

She focuses her energy on reducing stigma and spending time with her close network of friends and professional caregivers.

Ross’ family lives in Detroit. She has one daughter and a granddaughter. “My granddaughter said the saddest thing to me the other night. I was reading her a bedtime story and I came across a word,” she explained. “She asked me about the word, and I had a hard time remembering. Sometimes I have a hard time remembering the meaning of words. And do you know what she said? She said 'Baba can’t even read.'”

Ross said she wouldn’t be here without her family, friends and professional caregivers. “There are four or five people who’ve been in on this since the beginning. They’ve been critical to my survival. Going to the grocery store, driving me to places, and my friends are my therapy,” Ross said.

Ross got her Doctorate in Social Work at University of Chicago and has worked as a professional for most of her life. 

“For me it’s quality of life, just because I’m sick doesn’t mean I’ll stop living,” she stated.

Ross co-leads a support group with mild cognitive impairment at Northwestern.“Who I am is a social worker, it’s in my blood. I can use this attention in my support group.”

When asked about the future, Ross responded hesitantly. “It’s scary. You imagine the old woman sitting by the window, looking out alone. Not knowing what is going on or remembering anything,” she said. After pausing for a few moments she continued, “I don’t want this to be me.”

She copes by using humor to try and stay positive and this can clash with certain doctors she said. “Many doctors lack personal skills. I’d talk with them for hours about my disorder with no eye contact, they’d just be staring at a computer screen.”

“I’ve met friends in my support group so it’s not all bleak. There are positives,” Ross assured. “Would I prefer we had a chance at going back to normal? That we had never met?” she pondered before saying, “Yes I’d give up these friendships in a heartbeat to have my health. Yes but we don’t have a choice.”

Research isn’t the only thing that gives people with cognitive disease hope. 

There are many support groups that patients rely on and are without funding or financial support. “The memory ensemble is definitely my favorite group,” Ross said with a smile. “As we learn things about improv. we learn things about each other. There is vitality in it, energy, and caring. It is powerful.”

The memory ensemble is a support group with the Looking Glass Theater and Northwestern Feinberg School of Medicine.

Ross celebrated her 70th birthday last November.  “I didn’t need anything for my birthday because everyone already gave me so much,” she said.

“I asked friends to contribute to the Theater. They all contributed enough to run the theater twice. The ceremony was wonderful. Staff did improv. with guests. It was about celebrating life, even when it is bleak. We also addressed stigma. Many of my friends knew [about Lewy Body] but many others didn’t.”

By: Shirley Coenen and Torey Darin