Tag Archive: Lewy Body Dementia


On a wintry Friday night, I drove along our town’s short Main Street toward the big corner church. There’s not a lot of traffic in town after dark, and I didn’t encounter much, which made me a little sad to think the cold would keep people away from the benefit dinner taking place. But when I turned the corner into the church’s back lot, I suddenly saw row after row of vehicles. “They came!” I said out loud and laughed at the tears in my eyes. “Look at all these people!” Indeed, it looked as if the entire town had turned out.

From far and wide people arrived in order to visit our old Youth Group leader, Jim Gordon, and to donate toward his treatment for Lewy Body Dementia. The place was just stuffed with familiar faces I’d known 20 years ago, now graying at the temples, and it brought back a surge of memories of our Youth Group days.

Years ago, every Thursday night, the senior high students took over Jim and Bonnie’s house for camaraderie, dinner, sing-alongs, skits, and life lessons. After an hour of running around, playing games, starting conversations, and generating fun, I remember we’d pile around the dining room’s picnic tables for potluck dinner. (Yes, wooden picnic tables in the dining room. This was not your ordinary parish house. And 60-some kids wouldn’t fit together in just any dining room.) We’d start out sitting by class, with the seniors on one end of the room and we 9th graders on the other. But there were no rules, so usually by the end of dinner, everybody’d switched seats.

Gordon Bunch IIIAfter dinner, the whole lot of us would grab a spot on the living room floor surrounded by postered walls and memorabilia. The souvenirs that most people lined up on shelves or tossed in a drawer the Gordons put directly onto the walls. You looked for a spot where you’d be comfy, because you’d spend the entire last hour in your spot. Jim, and anyone else who wanted, would start tuning guitars and shaking tambourines. The rest of us would pass around song books–paper binders filled with lyrics in numbered order–and we’d shout out our favorites like, “Let’s sing 88!” and the guitars would start Mellancamp’s “Jack and Diane,” or Jimmy Buffet’s “Volcano,” or Morrison’s “Brown Eyed Girl.” The songs were interrupted by classmates, leaders, and Jim’s wife Bonnie doing skits. Bonnie was always a ton of fun. She was tiny, with beautiful blonde curls that went all over, and she wore pink lipstick and smelled like a powdery fragrance that I’ve never found in any store. She’s got a quiet leadership about her, but had no trouble acting in the skits and getting everyone to laugh.

There were religious songs in the books, too, and we’d save those for last–especially if they were quiet because they’d set the mood for Jim to talk. He’d give us a 15-minute sermon, sometimes more, sometimes less, which always began with random-seeming talk–about music, a band, a recent conversation with a man on the street, a memory from long ago–then related what he was saying to a Bible verse that he or a volunteer would read. We were allowed to shout out questions or comments at any time, and he’d address those. Then it would get quiet and he’d make his point, which was always something you could ruminate on for the next few days as you went back to school and headed into the weekend and into the next week. We’d close in prayer, and then listen to the brass of “All You Need is Love” as we got ready to head on home.

In those days, we lived from Thursday to Thursday. [That line isn’t new. I wrote, “We live from Thursday to Thursday” on a scrap of paper back in ninth grade because it was obvious, even then, that we were living out something to remember.] Back then we truly lived for those three hours where anything could happen and everything was possible.

On Friday after my first Youth Group, I remember walking down the hall in school and I passed a group of football players. Two of them, who had sat at the next table over the night before, made eye contact with me and said, “Hey.” I said hey back. (Hello was way too formal.) I also remember a senior, later on that day–probably the most beautiful girl in school–was standing at her locker with her friends and she also greeted me as I passed by because she’d seen me the night before at Youth Group. Class, age, athletic ability, talent, brains, beauty, clubs… none of it mattered. The barriers were gone.

We weren’t told to be nice to each other. We weren’t told to be accepting and kind and to offer help where we could. We learned it. We saw it in action and we absorbed it for ourselves. Youth Group was not a day of the week but a way of life. As Jim’s sister described us on Facebook on Saturday after the benefit, “You are a force. You learned from the best. Make good things happen.” That’s exactly what it all felt like: A force.

There were years of retreats, and breakfasts, and trips to amusement parks—once when our bus broke down a state away from home–and baseball games in corn fields (whispering, “If you build it, he will come…”), and volunteering—like the times we cleaned the carnival grounds and had a contest to find the weirdest items (you didn’t want to win that one)—and the coming years of change ahead of us. There’s so much that I could fill a book (and maybe I will). Yet hundreds of us, many with spouses and kids in tow, returned to the big church on the corner on a cold winter’s night to see Jim again and to donate and reconnect with each other across the miles and years because we share something in common. Deep within, a force has reawakened.

We were, we are, and always will be the Gordon Bunch.
~

On Lewy Body Dementia
The scientist Frederich H. Lewy discovered the abnormal proteins in the brain (the Lewy Body proteins) back in the early 1900’s during his Parkinson’s research. These Lewy Body proteins can interrupt dopamine flow, resulting in Parkinson’s, or can spread throughout the brain, wreaking havoc in the form of Dementia with Lewy Bodies which causes impaired attention and visuospatial function and can manifest visual hallucinations. Unlike Alzheimer’s, in Dementia with Lewy Bodies, short-term memory is affected later. Treatment involves drawing together a team of doctors, each treating different symptoms according to their specialty and in conjunction with one another so as not to allay the team’s efforts. Research goes on, but as of now, there is no cure.

To donate to the research for Dementia with Lewy Bodies, see the Lewy Body Dementia Association website. To donate directly to Jim Gordon’s treatment, please send a check payable to Saxonburg Memorial Church, Attn: Carol Hines, P.O. Box 466, Saxonburg, PA 16056 and memo “Jim Gordon Benefit.”Jody Brown

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Jody Brown is the author of Upside Down Kingdom, and is a blogger, poet, and traveler.

 

Recently, half the town and I attended a benefit for the Reverend Jim Gordon, to raise money for his treatment for Lewy Body Dementia. We gathered in the lower level of the big church to see Jim again, as many of us had only seen him sparingly since he and his wife Bonnie had been called to foreign shores for mission work. We gathered on this windy January night to donate and eat spaghetti dinner—though many I talked with had come straight from dinner and weren’t even hungry. They donated anyway. And the church still ran out of pasta noodles twice over. We gathered and stepped back to a time thick with memories, and felt the old familiar nostalgia. Even as we lived it, years ago, we felt a happy pining for the very moment we were in, and we longed to hold on to it forever.

Jim and Bonnie Gordon had been our Youth Group leaders, opening their home every Thursday–and probably every day knowing our unannounced-drop-in rabble–to half the teenage population in town. We showed up, wandered the grounds, ran in the house, ate, danced, laughed, cried, hugged, sang, and lived.

Thursday night Youth Group was the place to be. It was a place to explore. This was where I was first introduced to the Dutch [existential] philosopher Søren Kierkegaard, the social unrest of Bob Dylan, and the voice of Robert Frost.

The Gordon Bunch, Part III remember distinctly the time when Jim used The Road Not Taken in a sermon, asking us if we wanted him to read the poem or if we’d rather that Frost read it to us. I had no idea what he meant, but others behind me shouted out their vote for Frost. Jim then obliged with a record—oh, vinyl!–of Frost’s poetry that he put on the stereo. (I also remember another time when Frost showed up mid-skit, thanks to the wigs and makeup from the Gordon’s prop rooms.)

Youth Group lasted three hours, consisting of an hour of unstructured time, followed by a dinner hour, then by a singing and sermon hour. Unstructured time was filled with running about the house, meeting new people and joining a made-up game where the rules changed as you went along on one side of the living room, listening to music on the other side, an intense discussion about school or politics or super heroes in the dining room, sitting outside on the wooden fence, or joining in some sport in the yard, and it was all so carefree that you could join for a few minutes, then wander off and join the next thing. None of it was structured, and it was all sort-of us-oriented. Nothing was led by adults. There were plenty of adults around, joining us in what we were doing, but we got to take the lead on games, discussions, and whatever we wanted to do.

The dinner hour gathered all of us together from far and wide into the long dining room filled with wooden picnic tables. The tables were sometimes separate, sometimes set together into one long table. We’d choose our seats, a blessing was offered, and we’d line up to fill our plates from the potluck set out in a room at the base of the stairs before returning to our seats.

“Man, these mashed potatoes are so good, they’ll change your life!” a wild-haired man at the potluck table said to me on my first day. This place was full of characters, everywhere you looked. Beside me, my friend Danielle introduced me to the man, who was none other than Jim Gordon. I figured, it being my first day at youth group and all, and with the endless numbers of people there, that it would take weeks before I’d meet the famous Jim and Bonnie Gordon, and longer still before they’d ask my name or remember it. I also figured I’d spot Jim in the crowd sooner or later, as he’d be the one in the clergy collar. These pre-conceived notions of mine were all incorrect.

Jim and Bonnie didn’t see an overwhelming gaggle of teens converged in their dwelling. They saw us as the individuals we were. And Jim was a sight to behold: Untamed curly hair, tan, usually wearing jean shorts and a faded t-shirt, always smiling and laughing. This was not a preacher telling you how to live. This was a man with a joy for life, showing you how it’s done.

As for the catchphrase, I still use it. Rarely a day goes by that I don’t find something “so good, it’ll change your life.”

Part III, coming soon… ~

On Lewy Body Dementia
The scientist Frederich H. Lewy discovered the abnormal proteins in the brain (the Lewy Body proteins) back in the early 1900’s during his Parkinson’s research. These Lewy Body proteins can interrupt dopamine flow, resulting in Parkinson’s, or can spread throughout the brain, wreaking havoc in the form of Dementia with Lewy Bodies which causes impaired attention and visuospatial function and can manifest visual hallucinations. Unlike Alzheimer’s, in Dementia with Lewy Bodies, short-term memory is affected later. Treatment involves drawing together a team of doctors, each treating different symptoms according to their specialty and in conjunction with one another so as not to allay the team’s efforts. Research goes on, but as of now, there is no cure.

To donate to the research for Dementia with Lewy Bodies, see the Lewy Body Dementia Association website. To donate directly to Jim Gordon’s treatment, please send a check payable to Saxonburg Memorial Church, Attn: Carol Hines, P.O. Box 466, Saxonburg, PA 16056 and memo “Jim Gordon Benefit.”lines post

~
Jody Brown is the author of Upside Down Kingdom, and is a blogger, poet, and traveler.

gordon-bunch-1On Friday night I attended a benefit for the Reverend Jim Gordon, a spaghetti dinner that called to everyone far and wide to trek home for family time. When I was in high school, Jim (no one ever called him the Reverend Jim Gordon) was one of a team of preachers for one of the churches on Main Street (not mine), and the leader of what seemed to be the town youth group (that adopted me, and everyone else around).

Jim is now living with Dementia with Lewy Bodies, a disease with symptoms similar to Alzheimer’s and related somewhat to Parkinson’s. Details on this will come. But for now, we’ll travel back before all of this, to the early 1990’s and a time when the world was just becoming possible.

I think it was my friend Danielle who invited me to come to her youth group one fall Thursday night. She invited the lot of us, really, and soon, Heather, Carla, Jenny—though it was her Youth Group, too–and both Jackies were all meeting up on the hill at the parish house for three hours of music, dancing, camaraderie, potluck dinner, and a sermon that wove it all together. This was the home of Jim and Bonnie Gordon, and it was not your run-of-the-mill parish house.

The dining room, to me, was always the most striking. It ran the length of the house from the back to the front and was not filled with a stately table but rather a series of wooden picnic tables. The walls were stately, however, covered in old license plates from Pennsylvania and beyond. The living room, which paralleled the dining, was a large, open space with ramshackle couches and pillows strewn about, a stereo system on one side geared toward the playing of records, and posters of the Beatles splashed the walls. The small kitchen, that I remember being yellow/orange but it could have been any cheerful color, really, had a poster of a playground and words that I do remember, “It’ll be a great day when our schools get all the money they need and the Air Force has to hold a bake sale to buy a bomber.” It was right above the stove.

Upstairs, there was a hallway with various rooms jutting off, each so filled with costumes and props that, on any given night, you could put together a skit with cheerleaders, Moses, the T-Birds from Grease, John and Yoko, or all of them at once.

My memory is that it was so cold my second winter at Youth Group, and there were so many people in attendance every week, that the attic was opened up for additional space. It was vast, at the tippy top of the stairs, and contained at least one pool table and virtually no heat. The walls up there were unfinished, so we were given markers and told to add our autographs. This we did, along with poetry, questions, sketches, and the like. We were figuring out who we were, what really counted, what it all meant, and how to get all of it to fit together.

Part II, coming soon… ~

On Lewy Body Dementia
The scientist Frederich H. Lewy discovered the abnormal proteins in the brain (the Lewy Body proteins) back in the early 1900’s during his Parkinson’s research. These Lewy Body proteins can interrupt dopamine flow, resulting in Parkinson’s, or can spread throughout the brain, wreaking havoc in the form of Dementia with Lewy Bodies which causes impaired attention and visuospatial function and can manifest visual hallucinations. Unlike Alzheimer’s, in Dementia with Lewy Bodies, short-term memory is affected later. Treatment involves drawing together a team of doctors, each treating different symptoms according to their specialty and in conjunction with one another so as not to allay the team’s efforts. Research goes on, but as of now, there is no cure.JB

~
Jody Brown is the author of Upside Down Kingdom, and is a blogger, poet, and traveler.

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