Fighting Parkinson’s Disease in America’s Largest Retirement Community
Gary Ingram battles a disease that will eventually take everything from him
JULY, 2016: Gary Ingram takes the stage in a generic ballroom. He stands with a microphone shaking in his hands. It looks like the microphone is possessed, bouncing and wobbling as he speaks into it.
“Hello,” Ingram shouts. A chorus of muffled “hello’s” rattles back. “Margarita,” Ingram says. The crowd of almost one hundred people repeat his calls. This goes on for almost three minutes and ends with a final shout of “Tequila.”
Ingram grabs a pair drumsticks off of a small table at the edge of the stage and descends down a set of stairs, his body bounces as if his limbs are attached to strings being controlled by a novice marionette. He walks to the left of the group and stands behind a table. He raises his right hand and places it over his heart. The group follows his moves and in unison with Ingram they recite the “Pledge of Allegiance.”
Ingram returns to the stage and his blue eyes stare out at the crowd. The nearly seventy-year-old wears summer retiree attire — khaki colored shorts, white sneakers and black t-shirt — because this is a retirement community. Plus, it’s July and a sweltering one hundred plus degrees outside. Everyone else dresses similarly. He grabs a pair drumsticks from the table and explains a marching beat to the group.
Everyone will follow Ingram’s lead — they’d grabbed a pair of drumsticks when they arrived and placed them on the square banquet tables they sat behind, waiting for this moment. Elbows pointed out like the drummer in a high school band, the group gets set. Ingram bangs the table with his sticks, it’s the classic marching band beat. He goes through the three different sections and the group repeats. These aren’t professional drummers and a few voices can whisper under their breath that the beat is impossible. Ingram doesn’t worry about that. He’s only interested in the possible. Ingram begins banging faster and louder. Everyone in the room follows. Sticks crash on tables, echoing in the hall to create a perfect beat that reminds me of hearing a high school band practice from a different room. It’s a perfect sound despite all the imperfections.
From outside, it would be impossible to know that Ingram and the men and women in here suffer from Parkinson’s Disease. For many, it’s impossible to do basic life skills like going to the bathroom or take a shower without help. Their caregivers — spouses and nurses — stand behind or next to their partners as they slam drumsticks on the table in a rhythm unimaginable for people suffering from an incurable disease that takes control of the body’s motor skills. The reason they’re all here doing the impossible is Ingram. And he’s here because he knows the pitfalls of Parkinson’s and wants to help his fellow sufferers. Plus, he’s trying to save himself.
What started out as a Monday afternoon Parkinson’s meetup has grown into a support group called the Parkinson’s Fight Club. It’s one of few times a week that people in this group connect with people like them. It gives them a chance to vent and feel what life used to be like when they could control their bodies.
On one wall of the room there’s a collection of photos of active retirees smiling and doing activities like kayaking, fly-fishing, softball, rollerblading, biking, swimming and archery. There’s not a care in the world on any of their faces. In the middle there are the words “Florida’s Healthiest Hometown.” It’s easy to see the Parkinson’s Fight Club members as once inhabiting one of those photos. Now, though, they’re not out rollerblading or kayaking. They’re here trying to fight back a disease that wants to take over their lives. Parkinson’s disease slowly takes away and destroys the body and mind, and it’s here, in this ballroom with those photos on the wall, where Ingram stands and preaches a gospel of limited salvation, because, as I’ll come to find out, the disease always wins.
One of the people here is my grandfather. He’s gone to the meet-ups in the Villages for a few months. My grandmother, his caregiver, has to lift him from his bed, wheel him to their little red Ford sedan, help him get in and drive a half-hour each way to this room inside a meeting center at America’s largest retirement community. They live outside the community on a nearby golf course. She has to help him in and out of the car, both of their arms shaking from the amount of strength it takes to get his aging and limp body up and down.
My grandfather had been bedridden for a few years at this point. It happened without warning. One week he was playing golf, drinking and being the cheerful jester everyone knew him as. The next, he was injured and letting himself slip into a depression that forced him to live in a bed in the living room of my grandparents’ home. The man who graduated from MIT as a teenager, hitch-hiked across the country after being discharged from the Navy, and who enjoyed flirting and laughing with everyone he met, became a skeleton. His perpetual smile disappeared behind shrinking skin and a slack jaw.
My grandfather spent his days sleeping while my grandmother, a determined woman who runs her home like an army barracks, took care of him and their bills — fighting with the insurance companies for any help she could get. The social butterfly of the country club had become a recluse. His strength disappeared. He developed symptoms of Parkinson’s, either from his medication or because of one of the many internal and outside factors that hotwire the brain and drive it towards the disease. After hearing about the Parkinson’s Fight Club, my grandmother decided to get her partner out of the house, to join something to see if it could motivate him. Plus, it gave them a destination to go to together, a pair, like they use to do. They met Ingram and became Fight Club regulars for a time. It seemed to help, and, at the very least, got my grandparents out into the world for a few hours each week.
According to the Parkinson’s Disease Foundation, more than 60,000 people are diagnosed with Parkinson’s every year and over as many as one million people live with it. Parkinson’s disease is a movement disorder that gets worse with time. It can take many forms and is hard to diagnose because the movements can be difficult to attribute. There isn’t a universal identifiable tick.
After the drumming, Ingram walked on stage and invites one of the members of the group to read a poem. Five people from the crowd are on stage and they stand in front of a chair. Ingram hit a few buttons on his iPad and “Uptown Funk’ bumps from a PA system. He leads the group in a series of rapid movements. His arms flail as he slides across the stage and everyone follows along.
The Fight Club is an exercise class geared towards getting people out of their comfort zone. The fast moves and loud music pushes people to keep up, not be left behind, to fight back against the physical restrictions put on them by Parkinson’s. Ingram slides and shouts, his feet move and his arms flail. It’s a strange sight to see. The choreography wouldn’t pass a dance class exam, but it’s filled with joy and pain and it’s beautiful in the way that the most honest art is.
Ingram began the Fight Club after moving to the Villages, a retirement community of more than 157,000 people, 45 miles northwest of Orlando. When he arrived, he went to a Parkinson’s support group and felt it didn’t go far enough to push people suffering from the disease.
“The old way to look at Parkinson’s, when it came to a support group, was everything was in slow motion, protect the individual, don’t have them move fast, they might compromise and fall,” Ingram says. “And I knew that was exactly the opposite [of what you wanted to do].”
Ingram took it on himself to start his own group focused on what he found worked for pushing back the effects of Parkinson’s. That’s the kind of person he is: a go-getter.
Born in East Los Angeles on May 10, 1948, Ingram was the youngest of three children. His mother, Verda Doris Sutton, left the family shortly after his birth. His father, Eugene Rex Ingram, was a police officer with the Los Angeles Police Department. In May of 1954, Ingram’s mother died in a car accident, eerily similar to how his father’s mother passed away.
As a child, Ingram was curious and studious. When he was nine-years-old, he was handed a key to the school because he showed up two hours early every day. He got his pilot’s license by the time he was sixteen — the youngest pilot in California. As a seventeen-year-old Ingram says he flew solo, transporting planes from Florida to California. He was a prodigy. But what he really wanted to do was be a cop.
“I wanted to be like my dad,” Ingram says. “I thought, yeah, that’s my guy. And I liked to talk to people. There is nothing more boring than to be at 10,000 feet in an airplane.”
Ingram graduated from the LAPD Police Academy as a twenty-one year old. One of Ingram’s brothers, Eugene, was also on the force, but was dismissed in 1981 from the LAPD after allegations he ran a prostitution ring and supplied a drug dealer with information. While working in the police department, Ingram met his wife Maria. Maria’s younger sister would hang out in front of Ingram’s station and one days he asked her if she had an older sister. It turned she did and introduced her to Ingram. A few weeks laters, the couple married.
Seven years after joining the LAPD, Ingram was forced into a career change when a rookie cop shot him with a shotgun, putting him into a coma for a year. When he awoke, Ingram’s doctors began giving him clay to aide in his recovery. He was a natural. Soon, the paint brushes came out and Ingram’s passion for art germinated. After his release from the hospital and rehab, Ingram and his family, which now included two young children, moved to a home in Yellowstone National Park where he painted.
“We showed up at 6,000 feet where we bought this 900 square foot A-frame house,” Ingram says. ”A five year old and a three year old, a wife, a man from East L.A. [I] didn’t even know what a snow shovel looked like and there is about five feet of snow on the ground heading up to this house that we had bought.”
Yosemite holds a place in Ingram’s heart. As a child, his father would take him and his brothers there every year for vacation. It was a way for the family to get away from the dangers of East L.A., the gunshots, the gangs and the murders. His father needed that time away with his sons to recuperate and live life on the street behind. As Ingram’s dad drove the family 1955 Ford station wagon through the mountains, light shined down from the heavens and broke the trance the difficult life they lived.
When he moved his own family to Yosemite, they lived off the grid. Ingram left his previous life behind and shut out the world, trying to only live in his personal heaven and leave the past behind. The home didn’t have a telephone and most of the home’s outside contact came from the school Ingram’s kids attended in the valley. Ingram sold his first painting, according to him, for $15,000.
It was in the shower in Yosemite where Ingram first fought Parkinson’s. After being initially diagnosed with a stroke, Ingram found Parkinson’s has begun to ravage his body and mind. There is no way to know how Parkinson’s chose him. The disease is not selective and there is little known about where it comes from.
“In most cases it is sporadic, which means it doesn’t run in families. But the suspicion is that it is probably a combination of some genetic factors as well as some environmental factors that cause a person to have Parkinson’s” Dr. Albert Hung, assistant professor of neurology at Harvard Medical School and a staff neurologist at Massachusetts General Hospital, tells me.
Doctors can only diagnose Parkinson’s. There is no blood test or scans to determine if someone has it. Doctors look for a series of symptoms, which include tremors, stiffness, slowness of movement, and a change in posture and balance. Without a surefire way to identify Parkinson’s, the disease can be misdiagnosed, like in Ingram’s case. As people get older, the symptoms seem to become great. The disease has become more mainstream after the diagnosis of Muhammed Ali, who could barely hold the Olympic torch at the 1996 Olympic games in Atlanta, and after Michael J. Fox semi-retired from acting in 2000, because of the disease.
After the diagnoses, Ingram began researching Parkinson’s. His first breakthrough came while showering. Ingram’s arm became unresponsive as he tried to wash his armpit. He couldn’t raise it. “I went, what the fuck is wrong with me?” Ingram says. “I was frustrated.”
Out of that frustration, Ingram was able to move his arm high in the air. It wasn’t the desired result, but he figured out how to go around the blockage caused by the lack of dopamine in the brain, which is what Parkinson’s does. Dopamine sends signals to nerve cells in the brain and controls the release of hormones, which allows the body to operate its motor skills. Because of the lack of Dopamine, Ingram needed a detour on the road map to getting his arm raised, so he needed to command another motion. He needed to tell his brain to do something other than wash his armpit and then use that freedom of movement to coerce himself into the motion he needed. He needed to reroute the dopamine he had available. The trick worked. Ingram decided at that moment that he could get better, which is the first step to living with Parkinson’s.
What Ingram discovered was a way to getting his body to send the correct signals where he needed them. Maybe it would be the long-way round, a secondary motion, but it worked better than the alternative of having only involuntary movements. He discovered that quick motions worked best and that muscle memory was now more important than because it gave him a base.
Nine years ago, Maria and Ingram saw a commercial for the Villages. While Ingram is a self-proclaimed isolationist, he knew it was about time they move somewhere his wife wanted to live. The couple packed their bags and moved to central Florida, joining the retiree migration to the Villages. Ingram joined a Parkinson’s group, but was not impressed.
“It was totally backwards from what was getting me better,” Ingram says. “It was run by a caregiver by caregivers and there was no one up front with the disease.”
Ingram started his own group, Parkinson’s Fight Club Monday Morning Donuts. It was men only at first and an exercise class mixed with an open therapy session, kind of like Alcoholic Anonymous minus the steps and God. Everyone had to talk during a meeting.
Exercise is important for people suffering from Parkinson’s, but the mental side of the disease is what drags people into depression. People become self-conscious and afraid when Parkinson’s takes hold. Their spouses, friends and caregivers can’t get them out of the house. There is no answer, so people hide from the world, feeding into the diseases’ desire to control every aspect of life.
“Anxiety and depression are common with Parkinson’s Disease. Part of that anxiety and depression comes with recognizing they have a chronic condition and thinking of the impact Parkinson’s will have on the rest of their life,” Dr. Hung says. “There is also possibly a biological component to the anxiety and depression because many people will notice some change in their mood or their anxiety level even before they notice a change in their mobility or receive a diagnosis of Parkinson’s.”
“Parkinson’s is physical because that is what the patient feels, but it’s strictly neurological because everything going wrong with us is up here,” Ingram tells me as he points to his head. “The muscles aren’t the problem. The part that kills people with Parkinson’s is the psychological.”
The anxiety and depression has claimed more than 100 of Ingram’s friends at the Villages. The disease swallows you and there is no way out.
“I have had several people kill themselves, including my best friend,” Ingram says. “I had a guy go home and get his Glock 40 out and blow his brains out.”
Monday morning meetings grew to thrice a week meetings. Word got out and more people showed up. Recently, though, Ingram has started thinking about what life would be like if he wasn’t so dedicated to the disease. His family has dispersed across the globe. He’s a grandfather now and wants to see his children and their children. He knows this life has to end at some point and he doesn’t want to look back and think he’s missed out on being with his family.
“I feel I have so much time left,” Ingram says. “Talk about a legacy, but who the hell has a legacy? Kennedy has a legacy. Most of us it’s oblivion,” Ingram says. “But I think I’d like to leave my grandkids a painting. Most of them have paintings that I’ve done for them but the young ones don’t.”
Every morning, Ingram wakes up at two to go for a walk. He has to uncurl his body, which has wound itself into a ball. He unwinds and stretches, which takes roughly fifteen minutes each morning. With the sun is still down, and most people have gone to bed, but Ingram gets himself set for the day. His internal clock has reset thanks to Parkinson — he goes to bed at four every afternoon. Once he’s set, Ingram puts on his clothes and starts walking. He walks eight miles, one foot in front of the other, the gate and struggle seemingly gone as he drifts out into thoughts, his muscles taking over. But if his trance gets disrupted by an oncoming car, he has to start over again. He goes back to Parkinson-mode. It’s a remarkable thing. Often he hallucinates on the walk, his brain playing tricks on him.
When he gets home, Ingram writes a few things, trying to be creative. Then he’s ready for the day. He and Maria go out to lunch, which is really their dinner, five times a week. But what he wants to do is paint again. Maria got him a canvas and a new easel recently. It’s been untouched. The creative spark hasn’t been there. His mind’s been preoccupied with Parkinson’s. He’s had the groups. He’s helped so many people. But maybe, just for a bit, he’ll help himself and pick up a brush and create something new, like before, in the face of another obstacle. There’s an easel sitting at home with a blank canvas on it that needs painting.
In October, my grandfather died. It was after Hurricane Harvey forced him and my grandmother out of their home in Lady Lake, Florida for almost a week. They spent the time holed up in a school being used as a shelter. My grandmother had opted out of going to a shelter designed for people with disabilities — it was a half-hour further away from their home.
My grandfather’s fear of hospitals dated back to his childhood. He had spent too much time in one while growing up in East Boston. One of his legs was shorter than the other due to some medical complications that I never got an explanation for. He was scared of going into a nursing home, opting instead to request death before being placed in one. A shelter designed for people with disabilities would have been torture. Thankfully for my grandmother, one of the people in their shared room was a nurse. But soon after arriving home from the shelter, his health declined to a point of no return.
Eventually, my grandfather, affectionately known as “Nono”, gave into his demons. He’d spent nearly all his time in his bed for a few years. He needed my grandmother to take care of his most basic needs. As a result, he became distant and more like a vessel than a person. He’d received a hospital bed, some exercise equipment, and weekly visits from a nurse courtesy of Medicaid and hospice at one point. But during a meeting with a doctor, he somehow pushed away those benefits that helped my grandmother by claiming he didn’t have Parkinson’s and could begin exercising and regain his strength.
I was there for the meeting in my grandparents’ living room with the doctor. I sat out on their lanai with the sliding glass door cracked open. I worked and read as my grandfather showed his stubborn side. He would never recover and the perks of hospice, including cheaper medication, disappeared. My grandmother couldn’t afford two nurses. She kept the private help, a wonderful woman named Vee. Without Vee, my grandfather would have never been able to take another shower. She was the only person strong enough to lift him out of his bed and stabilize him and wash him at the same time.
When I visited Florida in July of 2016 with my wife and newborn daughter, it was a goodbye in a way. We knew my grandfather’s time was short and I wanted him to meet my daughter. I wanted her to hear his beautiful laugh one time in person instead of only over infrequent FaceTime chats. That same trip I met Ingram. He spoke warmly about my grandparents. He hoped my grandfather would recover and make some progress. He could see how much my grandmother cared for him and how much she wanted him to gain something of his past life back.
My grandparents moved to Florida so they could retire and play golf year round — like so many other retirees. They wanted to do it together. They wanted to enjoy their twilight years in the warm sun. Plus, they couldn’t ski or travel as much as they wanted because my grandfather had a hip issue. But I always felt it was also a move to get away from their pasts.
I was a teenager when they moved. We saw them sporadically through the years, but my grandfather, who was really our step-grandfather, became a larger than life figure. He could take over a room with his boisterous voice and story-telling. He never shied away from self-deprecating humor and often laughed and smiled so loud and large that he would cough and wheeze in pain and love. He had his stubborn side of course. He could be difficult to move and when he came to our house he claimed the big leather chair in our living room and made it his home. But he also cared more than anyone I’d ever known. He had a side to him that exuded love and at times I wondered how someone could have so much empathy. When my brother was diagnosed with Diabetes as a a five-year-old it was Nono who wanted to learn about his medicine and diet and spent time learning how to administer insulin. He would spend his free-time reading about diabetes, keeping up on research and advances in care, always hopeful for a cure.
My grandparents had a beautiful bond. They met under strange circumstances: both in search of a new partner after failed marriages to difficult spouses with their own issues. They were in search of something different this time. It wasn’t love or family, but a partner to enjoy. While their personalities could clash, they seemed an ideal pair who complimented each other. My grandmother’s intensity and seriousness played well against my grandfather’s desire to laugh. Plus, he enjoyed how my grandmother took care of everything for him save cooking dinner. They connected in ways I couldn’t see or understand. They seemed so different, but I came to realize that a partner isn’t a copy of yourself, but someone who compliments you. And they complimented each other.
After a fall, my grandfather became someone almost unrecognizable. Depression and old-age captured his soul. It seemed, from a distance, that he had micro-strokes that stole the life from him. He lost mobility. His jaw became slack and his mouth stayed open at all times. His face sunk in and his arms and legs, always on the skinny side, shrinked to the size of his bones. His hair thinned and the man who was always sharp and playful became a mummy in bed, wrapped in blankets even in the middle of the summer. He barely spoke or ate. Eventually, he retreated deep into a dark cavern inside himself and stopped going to the Fight Club. He was never diagnosed with Parkinson’s, but it seemed the most plausible reason for his quick decline.
One day, my grandmother became worried and took him against his wishes to the hospital. It would be their last trip together. And the most trying days of their lives together.
I found out only a few days later that he was there. I called my grandmother and told her we’d FaceTime soon so my daughter could say “hi.” But, my grandfather died a few days later. We never made the call. He kept fighting the hospital staff, pulling the cords and tubes from his body. He begged for morphine to dull the pain. He wanted to go home, but he knew he was never going back.
On his last night, he and my grandmother got in a fight before she left. She wanted him to stop pulling the tubes out and asked the doctors to do something about it. He fought back with the few words and actions he could muster.
That night, he fell asleep and never woke up. It’s how he would have wanted it. He loved my grandmother and didn’t want her to see him like that. Parkinson’s had taken everything from him and he wanted to be alone. It’s what Parkinson’s does. It takes a person and turns them against themselves. It forces them into the inner-reaches of the mind and makes them regret and wish they were alone. It’s a disease that destroys from the inside. And usually it doesn’t take people as softly as it took my grandfather.
After I started reporting this story, I got a strange set of emails from Ingram. I started writing the story after months of reporting. I struggled to understand the differences between the various stages, causes and types of Parkinson’s. I began fact-checking his story because it seemed impossible. But, he sent me documents, newspaper clippings and photos and I began to see the picture of a man struggling to stay alive and look forward. Ingram didn’t like talking about the past. He only wanted to see the light in the future.
In September of last year I got this email from Ingram:
The basal ganglia are particularly associated with movement disorders such as Parkinson’s and Huntington’s disease. In terms of cognitive disorders, basal ganglia abnormalities have been found in individuals with schizophrenia, and may explain habit learning deficits associated with the disorder (Keri, 2008). The basal ganglia may also contribute the neuropathology of depression, particularly in relation to the limbic system !
Thank you for understanding ‼️ As my Basal Ganglia increasingly malfunctions with time, an article about me may not have worth. I truly do not want to squander your time.
Immediately I asked Ingram if he was OK. The email had signs of someone looking for help. He wrote back:
Parkinson truth; Depression, little sleep, lack of sleep, 3 incurable diseases under attack 24/7, becoming a moaner groaner etc etc etc. My now geriatric feelings of worth now in doubt. Today’s class ? Progressive Incurable Degenerative Disease, I’m not the exception.
1:41am, time to untwist my Dystonia with my nightly 2 1/2 hour walk! I Hope I haven’t depressed you, sorry!
That’s the last time I heard from Ingram. He disappeared from my radar and never returned an email or phone call. The only website for the Parkinson’s Fight Club is an inactive Facebook page that has one post on it from June 2013 and there have been no responses sent to public posts on its wall.
This year, after my grandfather died, I decided to try reconnect with Ingram. For the previous year, I kept an eye out for his obituary and set up Google alerts for any information about the Fight Club that might pop up. Nothing ever did. I emailed and called Ingram and never heard back — the phone number I had for him doesn’t seem to be his anymore. I asked my grandmother to find out if he was still leading the group. She called around and found out, that yes, in fact he was. He hadn’t left it behind, yet.
I remember thinking back to the initial conversations I had with my grandmother about writing about Ingram. She kept saying the same thing: that maybe a story, any story, will help a young doctor see the light and start some groundbreaking research started or some more money go into Parkinson’s research. I can only hope.