WAYNE, NJ - Arden Courts, a memory care community, invited The Very Reverend Tracey Lind to speak of her journey living with frontotemporal dementia (FTD) at St. Michael's Episcopal Church in Wayne.
Since Lind's FTD diagnosis, she set out on a pilgrimage with her wife Emily Ingalls to travel the nation and world to tell their story and help destigmatize the "dementia" diagnosis. Lind was seen on 60 Minutes in May 2019 when they introduced millions of television viewers to Frontotemporal degeneration, the most common dementia for people under 60. [The segment was re-aired on Sunday, Sept. 15, 2019.] Visit her website to follow her blog.
Lind is facing this disease. "Out of pain comes joy," said Lind. "I am going to see what I can do with it. My curiosity is getting me through it. Otherwise, I’m going to roll up in a ball."
She is stimulating conversation with the groups she speaks to.
"I believe that denial isn't useful, honesty is important, early diagnosis can result in a higher quality of life. Transparency makes life easier for everybody involved. I decided to model it myself. I want to be a torch bearer who curses the darkness of dementia and lights the path of grace filled living with this disease," said Lind. She wants to give her diagnosis meaning. -- "Where is the grace of God in all of this? What are the gifts? -- The lessons of dementia from inside out."
We need to destigmatize dementia, said Lind. She compares it to cancer in the 70s and AIDS in the 80s. We need to address the elephant in the room, she said. "Acceptance is one of the most difficult but critical aspects of living with any complicated impairment," she said.
Lind recognized the signs and symptoms of dementia because it runs in her family. "Three years ago [at age 63], I noticed cognitive changes," she said, attributing the changes to the normal aging process. Early signs are gradual, and "we think we are stressed, tired or depressed." However, one day in the spring of 2016, while washing her hands in a public restroom she looked into the mirror and didn’t recognize her own face.
She immediately made an appointment with one of Cleveland's leading neurologists. The results of an MRI and spinal tap ruled out early onset dementia. After further speech therapy and neuro psych exams, on Election Day 2016, she was diagnosed with FTD, frontotemporal deterioration.
"Good news is that you don't have Alzheimers, however, you have early stage frontotemporal dementia," she said of her diagnosis. The relief didn’t last long -- the doctor explained that if her condition followed the usual course, eventually she would be unable to speak, write and understand language. "I would have behavioral, as well as mobility issues."
As devastating as this diagnosis was, Lind felt relief "because we no longer think we are going crazy," she said. "We actually have a reason for our confusion, exhaustion, inertia, memory loss, aphasia or word loss. Our problems with sight, hearing, balance -- and we realize this is not normal aging."
She said, "For people living with dementia, everyday is a struggle." She explained that she uses a lot of energy maintaining normalcy. "My reaction time is much slower than it used to be, I am becoming clumsy. -- My short term memory is very unreliable. -- I also repeat questions and quickly forget the answers and sometimes the questions. Reading is difficult. I can’t recall what I just read. Writing is more difficult. -- Having one on one conversations are challenging. -- I sunset - getting more tired as evening approaches."
FTD progressively shrinks the temporal and frontal lobes of the brain, resulting in a persistent decline in language, behavior, mobility, executive function (ability to organize), and short term memory. Lind said that symptoms of FTD typically occurs in your 50s and 60s. Life expectancy is two to 20 years, average 7 to 10 years. "I have always been an outlier so I'm hoping to be an outlier on the long side of 20, but who knows," said Lind.
Lind is a retired Episcopal priest who served as Dean of Trinity Episcopal Cathedral, a thriving and diverse urban congregation, a center for arts and music, and a gathering place for those devoted to Cleveland and its future. She is a renowned preacher who has spoken in a variety of national pulpits. She is an exhibiting photographer, an enthusiastic folk musician, an avid gardener, and an adventuresome hiker, cyclist, sailor and traveler.
She retired after nearly two decades because she knew she couldn't keep up with the demands of her position in her standards of job performance. She wanted to spend time with her wife Emily before she became the caregiver and Lind the care recipient. She wanted to live the fullest life she could as long as she could live it.
She identified her difficulties. She needs a lot of lists -- to remember to brush her teeth and put her hearing aids in. She can’t handle background noise or vision. She gets tentative and teary. She gets confused and fearful of making the wrong decision. "I am always anxious. Strange anxiety dreams. Anxiety is an undercurrent of this disease. People with dementia live on the edge of panic," she said.
"I’ve limited my number of activities each day. Organized my closets so I have a limited number of items," she said. They also review the menu before going to a restaurant and ask for a quiet table.
She also recommends a review of your advance directives -- write down what you want and "share with those who you share your life. Get your affairs in order," said Lind.
Dementia is a growing and expensive global health issue. "As baby boomers age, we are going to see more and more of it," said Lind.
Arden Courts is very concerned and has a strong desire to educate the community when it comes to Alzheimers, dementia and memory loss. Visit their website to learn more about their facility and upcoming events.