This woman with Alzheimer’s is helping people see the disease through a new lens

Cynthia stands by her masks accompanied by descriptions of her Alzheimer’s journey. (credit: Cynthia Huling Hummel)
Cynthia Huling Hummel takes pride in being a life-long learner. The Presbyterian pastor and author already has a bachelor’s degree, a master’s degree and a doctorate, but in the past seven years, she’s continued to take classes, auditing some 38 courses in subjects ranging from children’s literature to medical ethics. 

Cynthia decided to re-enroll at Elmira College near her home in New York in 2011, after being diagnosed with dementia at the age of 57. As her diagnosis has progressed from mild cognitive impairment to Alzheimer’s disease, she has remained active in pursuit of learning — even if she doesn’t always remember the new ideas or skills she is learning. 

“What’s important is that I’m around people, socializing and sharing my experiences,” she said. “It’s a feeling of being alive.”

Recently she began capturing some of her explorations on camera because she wanted to express herself through art and creativity, she said. One of her images was recently honored as a winner in the “STILL LIVING”  photo contest, run by the Bob and Dianne Fund, an Alzheimer’s awareness organization. 

Cynthia is one of three contest winners out of 75 entrants from eight different countries. Her photo features herself kayaking, something she started doing just a few years ago at a kayaking club she started at the lake near her house. “I wanted a new challenge,” she said. 

By sharing this photo of herself embracing a new challenge, she hopes to change the perception of what it means to live with Alzheimer’s.

“It puts the focus on what we’re still able to do and not on what we’re no longer able to do,” she said.

Cynthia grew up mostly in New Providence, N.J. In high school, she started volunteering at a nursing home and local swim program; this was her first experience with serving others, something she would continue to do throughout her life. 

“Volunteering has always been an important part of my family’s fabric,” she said. “We say that in volunteering we help other people, we help ourselves and we build a better community.”

After attending Rutgers University in the first co-ed class, Cynthia joined the Peace Corps, working in Jamaica for two years.

When she came back to America, she had a corporate job and eventually started a family. Over time she felt a call to ministry. She wanted to return to her roots, helping others, she said.

Cynthia loved being a pastor, but around the age of 49, she started to notice some changes in her memory. She started to forget names, faces, directions, conversations and meetings. 

“I couldn’t remember my people, and I couldn’t remember their stories,” she said. “So that’s hard to be a pastor if you can’t remember the people that you love and you can’t remember what they’ve told you.”

For eight years doctors couldn’t diagnose Cynthia. Finally, in 2011, she was diagnosed with mild cognitive impairment, a precursor to Alzheimer’s. She felt a wave of sadness and some relief at knowing the cause of her struggles. After a while, she embraced advice passed down by her mother to keep her focus on helping other people.

“If I sit at home and feel sorry for myself, it doesn’t serve anybody,” she said.

That helped her move from a mindset of “why me?” to “what next?” she said.

Cynthia’s mask features small playing cards because she “tries to make the best of the hand she was dealt.” (credit: Cynthia Huling Hummel)

Cynthia decided her “what next?” was to advocate for others with Alzheimer’s. Now, she volunteers at a ministry for people with Alzheimer’s, which aims to support people who have been diagnosed and their loved ones — and she speaks at meetings for Alzheimer’s patients.

“I’m not on any medicines, but my prescription is to stay active and to help other people.”

Cynthia also wrote a book called UnMasking Alzheimer’s: The Memories Behind the Masks. The book features photos of different masks she created to help others understand what it feels like to live with Alzheimer’s, alongside stories of her Alzheimer’s journey. She created the first mask at an Elmira art class for people with Alzheimer’s, then enjoyed the activity so much that she made 35 more, she said.

One of her masks depicts small playing cards surrounding the eyes and at the corners of the mouth. The cards represent how people can make the most of the hand they are dealt, she said.

“It’s a wonderful tool for people who are living with the disease and people who love people who are living with the disease, to have a conversation to say, ‘what does it feel like not to be able to remember this or that or what was your greatest joy?’” Cynthia said. 

Over the past decade, Cynthia has also become a forceful advocate for Alzheimer’s research. She runs and swims in races to raise money for research.

She also participates in an observational study called the Alzheimer’s Disease Neuroimaging Initiative. This year will be her 10th year participating in the study, and she encourages others to partake in clinical research.

“It makes me feel powerful against Alzheimer’s,” she said. “It’s my way to fight against it.”

For the past two years, Cynthia has also been part of an Alzheimer’s committee for the U.S. Department of Health and Human Services. 

“I’m always looking for opportunities to weigh in and to be a voice for the people who maybe aren’t as confident or maybe aren’t able to articulate what we’re hoping for,” she said. “We’re all hoping desperately for a treatment, and ultimately a cure for this disease.”

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