The Leader of the pack online/offline

MILEPOST 4—I’M THE LEADER OF THE PACK/ONLINE AND OFFLINE

Epilepsy Support Group

In eighth grade I discovered that there was an Epilepsy Support Group for Saint Croix County, one night a month, to talk out troubles coping, fears, frustrations, on job harassment, domestic strife. At first, I was just a member, and then I graduated to ‘Leader of the Pack’ status. I was leader (co-facilitator) for Saint Croix County’s ESG for eight years. And for two years I was contact-person for the WWEC (Western Wisconsin Epilepsy Center).

Gender makeup and number of the group remained fairly consistent—six to eight people, one male and either five or seven females. This didn’t prove to be a problem until they began discussing “female plumbing issues.” It also gave me an insight into the female psyche that few males could match.

I was leery of writing this MILEPOST, confidentiality wise, but being that it all occurred over 20 years ago, and the situations these women and one man dealt with are important, the way people can help other people in a group atmosphere. I’ve fictionalized names and combined situations, but let me assure you the circumstances these people went through are real, not fiction.

Agnes “Aggie” A. was in her 70s. She began having seizures in her 30s, after the birth of her first child. She was misdiagnosed as being mentally ill; the child was taken away by the State. She was institutionalized at the State Asylum (as they were called at the time) for 40 years. In a complex-partial seizure, there is a total escape from reality, and the person can easily be misdiagnosed. When she had a grand mal seizure (as they were known at the time), she was “acting up” and she’d be strapped down on a table, tongue paddle in mouth, and given ECST (electro-convulsive-shock-treatments). It was barbaric and brutal but thankfully it came to an end after the following.

The director of the WWEC (Western Wisconsin Epilepsy Center) Luanne Coy was being given a tour of this facility, long since renamed—Wisconsin State Mental Health Facility. An elderly woman handed her a note that read roughly—Please help me, I don’t belong here. I fall and shake and don’t know why. Six months later, after 40 years of misdiagnosed hell, Aggie was free and living on her own in a small, two room house, in River Falls, Wisconsin. Even after years of mistreatment, she had a delightful sense of humor, always upbeat, a truly great lady. It would be nice to think that she was still with us but at the time she would have been in her seventies; that would put her in her nineties now so it is possible she’s still alive but not likely. She got beaten up terribly in her grand mal seizures and would attend the meetings with bruises standing out in stark relief from her white skin.

Sally G. was a perky, snippy little gal, preoccupied with a marriage that was quickly falling apart. She was mother of two cute young girls who always accompanied her to the meetings. To describe Sally as hyper would be a severe understatement—today she’d probably be misdiagnosed as having “restless leg syndrome.” And no one could explain why, she was on the drug Phenobarbital, yet it had none of the barbiturate’s usual side effects—slurred speech, lethargy, drug-induced depression, slowed thought and movement. In some people, phenobarbital has the exact opposite side effect, hyper-activity. She was constantly on the move, clear speech, highly active, she could not put on weight, her mind and body worked like a finely oiled machine. I remember talking to her on the phone about how she’d been up at 3:00 am that morning and been vacuuming the entire house. We recommended she see a different neurologist, but for her, phenobarbital worked, so don’t rock the boat, baby.

Depression, she did have, but it was due to her failing marriage and bastard husband. At each meeting, she railed on about him, his inconsistencies, and shortcomings, how she’d opened a savings account in her name and took all the cash that remained in their joint account out and deposited it. There wasn’t much left as he’d been buying presents for his little bit of fluff on the side, a 16-year-old blonde, with the morals of a two-dollar-whore. When he found out he was enraged, but she’d already filed divorce paperwork. We all saw her through her divorce and she was an active member until the group fell apart in 1992.

Kelly I. was a high-school-age girl with verbal diarrhea who came to one meeting. Accompanied by her mother, the girl could not keep rein on her constantly yapping mouth. She monopolized the meeting and discussed various activities I’m sure she had no idea about. The way she was cold-shouldered by the other ladies in the group, most of whom were married brought to mind, been there done that or you have absolutely no idea, girl, while she fantasized out loud. Then two jokes that caused her not to be invited back, I only remember one and include this as an example of the low-class, poor taste jokes we sometimes run into—What does an elephant use for a vibrator? Not funny!

Cora, her mother called me the next day to apologize for her daughter’s behavior, she’d been scandalized not only at the “potty” humor but the mention of sexual matters. The thing is, it was Kelly who had the seizures—had she had tighter control over her mouth, we’d have welcomed her back; the poor girl definitely needed support of some kind.

Megan L. and husband Dave lived about a mile from our home just outside Hudson, Wisconsin. She was a wood worker, a carpenter, but had failing hearing. Fortunately, at the point I’m about to mention, her hearing was fine.

Doctor Penovich decided to try me on a combination of Felbatol (felbamate) and Neurontin (gaba-pentin); I’d been in the drug study for the latter when still a patient at MINCEP (Minnesota Comprehensive Epilepsy Program). It didn’t work and caused major balance difficulties.

I was in the living room and just like a pine tree felled in the forest, Don went KER-BOOM! The back of my skull collided with the chimney hearth and cut a nasty 3-inch gash. Good thing about having been diagnosed with a thick skull (check out Diagnostic Testing). The one thing I remember was taking a cloth and washing the hearth off so it wouldn’t stain blood. It is a funny thing, the memory. I called Meg and she drove over and took a look at the back of my head and said, “We’re going to the Emergency Room.”

Here I’ll introduce a man I’ll call Doctor Payne. As I was lying face down on a table in the ER, he cleaned out the wound. I remember he wore gray slacks and white/red pinstripe shirt. He said they weren’t going to use Novocaine; I should be full of endorphins (natural painkillers) now. It was the first time I had surgical staples without anesthetic and I felt each and every one go in. Sadly this was not the last time I had surgical staples in my 40 year Epilepsy Career. Newsflash to doctors—Just because mentally we aren’t quite with it yet does not mean we don’t feel pain. We stopped by Taco Bell on the way back to her place; I wasn’t hungry. When we got to their place I climbed into a leather-upholstered EZ-Boy Recliner with bath towel under the back of my head and fell asleep, I was exhausted and slept for 5 hours. Meg knew my Dad worked at Oakland Junior High School, called there and left a message. Dad pulled into Meg and Dave’s driveway around 5:00 pm and picked me up. We headed home.

A couple weeks later, the staples came out, but it was a breeze. They used what looked like a reverse tweezers to get underneath each and SPROINGed them out.

Meg was a cool lady and I felt really bad when the group fell apart in 1992. She and Sally G. were smaller-sized women and would exchange clothes, as they were the same size. Meg had been on the drug Felbatol for years and was seizure free. Then she reached that particular time in life, she was 45-years-old, when hormones get caught in a hellish whirlwind called menopause, and I received a call from her husband, Dave, as at this point, Meg was nearly stone deaf, and being that she had female problems, I thought a woman Doctor would be just the ticket and recommended my neurologist, Patricia Penovich.

There was a man named Tim S, who also was on the drug Phenobarbital and it had the opposite its usual effect. He was a member of MENSA (a high IQ society) and he didn’t really like the idea of being on it as it can have some bad long term effects on intellect, memory, etc. We talked him into a new neurologist, and I believe he switched onto a less side effect AED. I’m not certain though as he and his wife stopped going to the group.

Angie S. lived with Don C., a man from the area in which I’d gone to High School, who’d graduated four years before I did. The first time, they both came to the group together. She only came a few times after, always alone. She had issues she dealt with at work—a canning factory. Angie had tonic-clonic seizures and they insisted she work on the line, where she overheated, BOOM! A seizure would strike her. Of more concern were the exposed blades, knives used to cut out the bad or black parts of string beans. There were far less hazardous jobs, but the supervisor, “High-handed Joe Cool,” insisted she work on the line. After a call to the director of the WWEC, and a call from her to the owner of the canning factory, Angie was given a job in a far less hazardous part of the building and a rise in pay. After the change in her employment situation, she stopped coming to the group, maybe venting thoughts and feelings was just not her thing.

Check out the papers for advertisements of Epilepsy Support Groups in your area. If you don’t see any call the nearest hospital—The Saint Croix County Epilepsy Support Group met at the HMC (Hudson Medical Center); the workers there will be most helpful. Try the local library—The Star lighter Writing Group met once a month at the Grantsburg Public Library. Open up the Yellow Pages and let your fingers do the walking to the letter E and see if a regional Epilepsy organization is listed—give them a call. Here I have a link that will help you locate your local Epilepsy Foundation, from which you can locate a Support Group in your area. Find Your Local Epilepsy Foundation—you can search by either ZIP code or State http://www.epilepsy.com/

The key word is epilepsy, the seizural condition that approximately two-percent of the World’s population share. The secondary, Support—It helps you cope with all the pressures life deals you, frustrations with your living situations or as in the case of Sally G., marital problems, it lets you blow off steam, boosts your self-esteem, self-worth, unquestionably help with your depression, and unless hyped up on phenobarbital like Sally G., usually helps you sleep better. The third word is group, it shows you are not alone, I know how it can feel like that sometimes. The first Support group I attended, I was shocked, literally dumbstruck, there were eight people there just like me. It was enlightening, regardless what other people did, and thought, and said, I was part of a group of “extra-ordinary” people.

There were other members of the group, too, but these were the memorable ones. Feel free to email me—I will respond via email, just when is the question, my email address is strangedetour@grantsburgtelcom.net

High Tech Online Support Group

I started an online support group on the Epilepsy Foundation site—check out the link on the About the author page at the end. So I’m counseling people once again, this time in a high-tech way and I love it; I really like helping out other people, if you have complex-partial seizures or are a caregiver of a person that has CPs, you are more than welcome. Our number is 75, although it is actually 74 as one member, a great guy named Todd K. died of a heart attack in August of 2014. His page is still up, his last post was about three hours before he had his heart attack and died. You can think of the Epilepsy Foundation site as Facebook for people with Epilepsy, their caregivers, I know some neurologists are members and a few psychiatrists—they’re the ones who ask; what state of mind were you in after the seizure?

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medicinal marijuana

The Wonders Of The Wicked Weed, Medicinal Marijuana, Cannaboid Oil In The Wildly Racing Engine

As long as we’re talking about marijuana, they have something called ‘medicinal marijuana’ to treat seizures now—cannaboid oil. Call me square or uptight, maybe time has made my attitudes as intractable as my seizures. If the seizures are that bad and you are drug-resistant, then I can see it. I am not inflexible in the way I view things, I saw too many people whose brains rotted away from using Mary Jane, perhaps time has made my attitudes as intractable as my seizures are. Doc Penovich, my neurologist of 23 years gave her candid opinion. She said in some cases, emphasis on some it worked in children—about a 10% efficacy rate, or it worked for one in 10 people. She shared a little tidbit—smoking it won’t do it—so don’t start, if it did she’d have several patients seizure free. She didn’t breach confidentiality because she didn’t name names. Before the appointment you are given two sheets—one is for psychiatric stuff, the other, list your medical record since the last appointment; in the space—Do you use recreational drugs? They’d checked the yes box and listed Mary Jane after Names?

small town girl games

Small-town Girl Games, The Tilt-a-Whirl, and Spin Til You Drop

In my junior and my senior year, I had a girlfriend—Sandy Bachman who had flawless skin, except when she had a bad case of poison ivy from the class one year below me, or was it two, sorry, it’s been over three decades. During my senior year I tutored a well-developed freshman girl named Sissy Sandstorm in mathematics and she taught me how to French Kiss, more than an equitable trade. One guy plus one girl divided by hundreds of kisses equal two happy people with smiles on their faces. Our separate lanes didn’t merge in a head-on collision, thankfully, or if you prefer, we never locked front bumpers and revved our engines to the tango beat, I was 17 and 18 and she was let’s see—15, I had no intention of getting a count of statutory rape against me.

Sissy’s algebra grades didn’t make a drastic improvement, and why had they picked me, my math grades really stunk? Call it conceit, but I think I was a direct request from a freshman girl who wanted to prove to her friends she could take a senior boy away from a junior or sophomore girl. Sandy was a pig farm-girl that lived miles away, in the country. Sissy Sandstorm was a townie like me and her house was just a five-minute walk across town; Sissy had a distinct advantage. I think there was more than a little friction between town and country factions.

Sandy and I had a roller-coaster relationship with more lows than highs, that lasted through my one checkered year of college, and then she discovered another way to get high, someone had introduced her to Mary Jane, weed, grass, pot, roach, reefer or any of the other nicknames for marijuana. I tried it once, way back when, but it didn’t do anything. It was just as well as I had enough neurological problems—I didn’t need a brain made of tapioca pudding.

girlfriends

Foggy Road Ahead and Potential Car Wreck

No Room In The Parking Lot For The New City Kid

In 1975, we moved from Stillwater, Minnesota to Hammond, Wisconsin. I was a city kid confronted not only with dealing with my seizure condition but also with classmates who for the most part were farm-kids. I hadn’t been born there, so I was always considered an outsider.

In 1975—I attended one quarter of 7th grade at Stillwater Junior High, I remember Herr Spreeman was the German language teacher. We moved to a small town in Wisconsin, and I had small town culture shock. You could easily have fit five of the small public library building into the Stillwater Public Library building.

The first day I attended Junior High School there I did not make a good impression. I walked with the bouncing city strut I’d grown up with. Being the new kid that knew all the answers did not make me ‘Mister Popularity.’

In Mister Larsson’s Human Events class, someone passed a note to me, it was from a girl—Dani Nordquist. She wanted to know if I wanted to be ‘boyfriend/girlfriend?’ I had this cockiness, city-kid superiority thing going on and without even asking who she was, I said ‘No.’ Little did I know that Dani was the prettiest girl in the 7th, 8th, 9th, the whole high school for that matter. All through high school I kicked myself. I had a crush on her from the moment I saw who she was back in 7th grade through my one year at UW-RF (University of Wisconsin – River Falls). I still find her the most beautiful woman I’ve ever met and called friend.

Soon, I did have a girlfriend, Shauna, mostly because at that point we were the two most intelligent people in 7th grade. Considering the amount of meds I was on this doesn’t say much for the scholastic level of the small town educational system. Shauna was my girlfriend in 7th and 8th, and then we hit the big time, we were in high school. In my freshman and sophomore years of high school, I had no girlfriend.

Ethanol in the Fuel Tank

Ethanol in the Fuel Tank

Alcohol Abuse and Addiction

Introduction to Fuel Additives

First, I want to say that I’m not proud of what happened, but it is reality, it all occurred. And I promised you honesty so here it is, bared to the bones. Life can lead you onto some really strange roads. I want to emphasize that I do not want to preach to you—Thou Shall Not; I just want you to know if you’re on the same road there are people more than willing to help you. Contact your school counselor or check out the ads in the newspapers or Yellow Pages.

The first time I got drunk was the fall of 1978, my sophomore year of high school. At the time I was an alcohol virgin, I had little drinking experience to draw back on. In the fall of this year, that is 36 years ago. I was a member of the High School Pep Band—attending a football game—and had returned my tuba to the band room. I noticed that some of the cheerleaders had red noses, rosy cheeks, and you could tell by the fumes they were breathing out that something wasn’t kosher. They were also sipping from their lip-gloss bottles; somehow, they had managed to fill them with whiskey.

At half time, the cheerleaders all disappeared, and my friend Stanley S. said, “C’mon, Don, it’s party time!”

We drove over to Twin Lakes, really not much more than two puddles in a farmer’s field outside a nearby town. Big Mike, a large-sized man who had graduated two years previously came over not long after we’d arrived. Big Mike had a police scanner walkie-talkie hung on his belt and was nephew of one of the town cops so we knew we were safe as kittens to get hammered.

He was drinking a can of Mountain Dew. He poured half of its contents onto the ground, pulled a pint of blackberry brandy out of his pocket, and poured it into the Mountain Dew can, filling it three-quarters full. Shaking it a little to mix the two elements, he handed it to me. It was one noxious cocktail, but after I started drinking it, in a little while I didn’t notice the taste anymore. Everything became extremely funny and people and the surroundings began to move in slow motion, then spin—this was my first experience with chemical-induced escapism and it was not all pleasant—in time I grew to like the feeling of not being in control. Both Stanley and Big Mike are now deceased—Big Mike from excess weight, Stanley S., from unknown causes. In respect, both will remain nameless as far as their actual names; people who went to Saint Croix Central know full well the identities of Stan and Mike, how the former had been labeled an agitator and troublemaker, then made good, serving Uncle Sam overseas.

Highway to Hell

The next morning I discovered that there was a price to be paid. I never had a hangover in my life, but it felt as if a giant hand had taken hold of my legs and another my chest and proceeded to wring me out like a washrag. After the initial vomiting, the dry heaves commenced. My abdominal muscles were sore to the touch. This was the first time I prayed to the porcelain goddess, head hung over the toilet bowl, puking, or at least attempting to. Needless to say my parents were not pleased. I thought to myself, only an idiot would make a repeat of last night and this morning.

The next football game was in a town far to the south of us, it was a repeat performance—this continued during the football season, town after town, game after game. This was over 30 years ago and laws pertaining to liquor were loosely enforced—sorry to tell law enforcement that, but it was all too true, I’d say one third of my high school class, maybe as high as 80%, had a serious problem with alcohol.

Wisconsin’s baseball team is the Milwaukee Brewers—need I say more. If I had a beer, the old inhibition switch was turned to the off position. So yes, I had a serious problem with alcohol—time has magnified, rather than diminished that in my memory.

In the Good Old Summertime

I’d graduated high school at this point in time, and I was lying back in my room cutting some Zs. A man named Pete—from my class drove his Dad’s convertible, and pulled up in front of our house on the eastern edge of town. He knocked on the front door, it was a weekend, Good Neighbor Days in the nearby town and the result is that we got hammered, plastered, legally stoned, green to the gills, stewed, or any of the many other idioms for intoxicated. As usual, I paid the price on Sunday morning, Church for me that day was praying to the porcelain goddess—the toilet.

A Party Town

I went to college—the University of Wisconsin, River Falls—for one year. River fall was known as a party town with eight bars—I knew the inside of several of them. When you have classes at 8:00 a.m. and 9:30 a.m. and you sleep in until 1:00 p.m. it does not do wonders for the grade-point-average. That year I blacked out two times, with the amount of prescription medication I was taking in combination with the amount of alcohol, it is a wonder I didn’t end up on a slab in the morgue. My church’s former Pastor, Carol Ann, said she was sure God had another purpose for me.

Country Detox

We moved to just outside of Hudson, Wisconsin, way out in the middle of nowhere, on Highway 35, 6 miles from Hudson, 8 miles from River Falls—I basically dried out. After three years of sobriety, in 1986, I began attending classes at WITI “witty” (Wisconsin Indianhead Technical Institute)—now known as WITC (Wisconsin Indianhead Technical College) for a course called—Microcomputer Accounting Assistant. It promised to be a bad year, one in which I staggered down a twisting turning road that had a faded sign that read—Alcoholic Stupor at the roadside

A group of us went to a dinner/play at the Old Log Theater. I believe the play was called “Lights Out.” At intermission, I wandered out to the bar, some instinct told me no, damned if I was going to lose control again, damned if I was going home unable to remember what I’d seen. Out of instinct I’d ordered a Light Miller Beer, I took one swallow and the taste sickened me and I knew that God had given me another purpose to live for. So, I won’t preach to you.

That was in 1986, it will be 29 years since I drank any alcohol in the Fall of this year, 2015. Oh, there has been the odd shot glass of communion wine, but now at Zion Lutheran—the church I belong to they have grape juice as well as the wine. My mother’s side gets together on Christmas Eve and one Christmas Eve Mom thought I might like to join in and have a glass of wine with everyone else, it tasted like vinegar and I wanted to puke. My body rejected it like I was allergic to it, and I was glad. Christmas Eve, a couple years ago, we had a bottle of sparkling alcohol-free grape juice, and that’s as close as I’ll ever come to wine again. I have had Sharps and O’Douls non-alcohol beer that is not exactly my idea of good tasting; still, it’s better than the alternative.

Leader of the Pack

MILEPOST 4—I’M THE LEADER OF THE PACK/ONLINE AND OFFLINE

Epilepsy Support Group

In eighth grade I discovered that there was an Epilepsy Support Group for Saint Croix County, one night a month, to talk out troubles coping, fears, frustrations, on job harassment, domestic strife. At first, I was just a member, and then I graduated to ‘Leader of the Pack’ status. I was leader (co-facilitator) for Saint Croix County’s ESG for eight years. And for two years I was contact-person for the WWEC (Western Wisconsin Epilepsy Center).

Gender makeup and number of the group remained fairly consistent—six to eight people, one male and either five or seven females. This didn’t prove to be a problem until they began discussing “female plumbing issues.” It also gave me an insight into the female psyche that few males could match.

I was leery of writing this MILEPOST, confidentiality wise, but being that it all occurred over 20 years ago, and the situations these women and one man dealt with are important, the way people can help other people in a group atmosphere. I’ve fictionalized names and combined situations, but let me assure you the circumstances these people went through are real, not fiction.

Agnes “Aggie” A. was in her 70s. She began having seizures in her 30s, after the birth of her first child. She was misdiagnosed as being mentally ill; the child was taken away by the State. She was institutionalized at the State Asylum (as they were called at the time) for 40 years. In a complex-partial seizure, there is a total escape from reality, and the person can easily be misdiagnosed. When she had a grand mal seizure (as they were known at the time), she was “acting up” and she’d be strapped down on a table, tongue paddle in mouth, and given ECST (electro-convulsive-shock-treatments). It was barbaric and brutal but thankfully it came to an end after the following.

The director of the WWEC (Western Wisconsin Epilepsy Center) Luanne Coy was being given a tour of this facility, long since renamed—Wisconsin State Mental Health Facility. An elderly woman handed her a note that read roughly—Please help me, I don’t belong here. I fall and shake and don’t know why. Six months later, after 40 years of misdiagnosed hell, Aggie was free and living on her own in a small, two room house, in River Falls, Wisconsin. Even after years of mistreatment, she had a delightful sense of humor, always upbeat, a truly great lady. It would be nice to think that she was still with us but at the time she would have been in her seventies; that would put her in her nineties now so it is possible she’s still alive but not likely. She got beaten up terribly in her grand mal seizures and would attend the meetings with bruises standing out in stark relief from her white skin.

Sally G. was a perky, snippy little gal, preoccupied with a marriage that was quickly falling apart. She was mother of two cute young girls who always accompanied her to the meetings. To describe Sally as hyper would be a severe understatement—today she’d probably be misdiagnosed as having “restless leg syndrome.” And no one could explain why, she was on the drug Phenobarbital, yet it had none of the barbiturate’s usual side effects—slurred speech, lethargy, drug-induced depression, slowed thought and movement. In some people, phenobarbital has the exact opposite side effect, hyper-activity. She was constantly on the move, clear speech, highly active, she could not put on weight, her mind and body worked like a finely oiled machine. I remember talking to her on the phone about how she’d been up at 3:00 am that morning and been vacuuming the entire house. We recommended she see a different neurologist, but for her, phenobarbital worked, so don’t rock the boat, baby.

Depression, she did have, but it was due to her failing marriage and bastard husband. At each meeting, she railed on about him, his inconsistencies, and shortcomings, how she’d opened a savings account in her name and took all the cash that remained in their joint account out and deposited it. There wasn’t much left as he’d been buying presents for his little bit of fluff on the side, a 16-year-old blonde, with the morals of a two-dollar-whore. When he found out he was enraged, but she’d already filed divorce paperwork. We all saw her through her divorce and she was an active member until the group fell apart in 1992.

Kelly I. was a high-school-age girl with verbal diarrhea who came to one meeting. Accompanied by her mother, the girl could not keep rein on her constantly yapping mouth. She monopolized the meeting and discussed various activities I’m sure she had no idea about. The way she was cold-shouldered by the other ladies in the group, most of whom were married brought to mind, been there done that or you have absolutely no idea, girl, while she fantasized out loud. Then two jokes that caused her not to be invited back, I only remember one and include this as an example of the low-class, poor taste jokes we sometimes run into—What does an elephant use for a vibrator? Not funny!

Cora, her mother called me the next day to apologize for her daughter’s behavior, she’d been scandalized not only at the “potty” humor but the mention of sexual matters. The thing is, it was Kelly who had the seizures—had she had tighter control over her mouth, we’d have welcomed her back; the poor girl definitely needed support of some kind.

Megan L. and husband Dave lived about a mile from our home just outside Hudson, Wisconsin. She was a wood worker, a carpenter, but had failing hearing. Fortunately, at the point I’m about to mention, her hearing was fine.

Doctor Penovich decided to try me on a combination of Felbatol (felbamate) and Neurontin (gaba-pentin); I’d been in the drug study for the latter when still a patient at MINCEP (Minnesota Comprehensive Epilepsy Program). It didn’t work and caused major balance difficulties.

I was in the living room and just like a pine tree felled in the forest, Don went KER-BOOM! The back of my skull collided with the chimney hearth and cut a nasty 3-inch gash. Good thing about having been diagnosed with a thick skull (check out Diagnostic Testing). The one thing I remember was taking a cloth and washing the hearth off so it wouldn’t stain blood. It is a funny thing, the memory. I called Meg and she drove over and took a look at the back of my head and said, “We’re going to the Emergency Room.”

Here I’ll introduce a man I’ll call Doctor Payne. As I was lying face down on a table in the ER, he cleaned out the wound. I remember he wore gray slacks and white/red pinstripe shirt. He said they weren’t going to use Novocaine; I should be full of endorphins (natural painkillers) now. It was the first time I had surgical staples without anesthetic and I felt each and every one go in. Sadly this was not the last time I had surgical staples in my 40 year Epilepsy Career. Newsflash to doctors—Just because mentally we aren’t quite with it yet does not mean we don’t feel pain. We stopped by Taco Bell on the way back to her place; I wasn’t hungry. When we got to their place I climbed into a leather-upholstered EZ-Boy Recliner with bath towel under the back of my head and fell asleep, I was exhausted and slept for 5 hours. Meg knew my Dad worked at Oakland Junior High School, called there and left a message. Dad pulled into Meg and Dave’s driveway around 5:00 pm and picked me up. We headed home.

A couple weeks later, the staples came out, but it was a breeze. They used what looked like a reverse tweezers to get underneath each and SPROINGed them out.

Meg was a cool lady and I felt really bad when the group fell apart in 1992. She and Sally G. were smaller-sized women and would exchange clothes, as they were the same size. Meg had been on the drug Felbatol for years and was seizure free. Then she reached that particular time in life, she was 45-years-old, when hormones get caught in a hellish whirlwind called menopause, and I received a call from her husband, Dave, as at this point, Meg was nearly stone deaf, and being that she had female problems, I thought a woman Doctor would be just the ticket and recommended my neurologist, Patricia Penovich.

There was a man named Tim S, who also was on the drug Phenobarbital and it had the opposite its usual effect. He was a member of MENSA (a high IQ society) and he didn’t really like the idea of being on it as it can have some bad long term effects on intellect, memory, etc. We talked him into a new neurologist, and I believe he switched onto a less side effect AED. I’m not certain though as he and his wife stopped going to the group.

Angie S. lived with Don C., a man from the area in which I’d gone to High School, who’d graduated four years before I did. The first time, they both came to the group together. She only came a few times after, always alone. She had issues she dealt with at work—a canning factory. Angie had tonic-clonic seizures and they insisted she work on the line, where she overheated, BOOM! A seizure would strike her. Of more concern were the exposed blades, knives used to cut out the bad or black parts of string beans. There were far less hazardous jobs, but the supervisor, “High-handed Joe Cool,” insisted she work on the line. After a call to the director of the WWEC, and a call from her to the owner of the canning factory, Angie was given a job in a far less hazardous part of the building and a rise in pay. After the change in her employment situation, she stopped coming to the group, maybe venting thoughts and feelings was just not her thing.

Check out the papers for advertisements of Epilepsy Support Groups in your area. If you don’t see any call the nearest hospital—The Saint Croix County Epilepsy Support Group met at the HMC (Hudson Medical Center); the workers there will be most helpful. Try the local library—The Star lighter Writing Group met once a month at the Grantsburg Public Library. Open up the Yellow Pages and let your fingers do the walking to the letter E and see if a regional Epilepsy organization is listed—give them a call. Here I have a link that will help you locate your local Epilepsy Foundation, from which you can locate a Support Group in your area. Find Your Local Epilepsy Foundation—you can search by either ZIP code or State http://www.epilepsy.com/

The key word is epilepsy, the seizural condition that approximately two-percent of the World’s population share. The secondary, Support—It helps you cope with all the pressures life deals you, frustrations with your living situations or as in the case of Sally G., marital problems, it lets you blow off steam, boosts your self-esteem, self-worth, unquestionably help with your depression, and unless hyped up on phenobarbital like Sally G., usually helps you sleep better. The third word is group, it shows you are not alone, I know how it can feel like that sometimes. The first Support group I attended, I was shocked, literally dumbstruck, there were eight people there just like me. It was enlightening, regardless what other people did, and thought, and said, I was part of a group of “extra-ordinary” people.

There were other members of the group, too, but these were the memorable ones. Feel free to email me—I will respond via email, just when is the question, my email address is strangedetour@grantsburgtelcom.net

High Tech Online Support Group

I started an online support group on the Epilepsy Foundation site—check out the link on the About the author page at the end. So I’m counseling people once again, this time in a high-tech way and I love it; I really like helping out other people, if you have complex-partial seizures or are a caregiver of a person that has CPs, you are more than welcome. Our number is 75, although it is actually 74 as one member, a great guy named Todd K. died of a heart attack in August of 2014. His page is still up, his last post was about three hours before he had his heart attack and died. You can think of the Epilepsy Foundation site as Facebook for people with Epilepsy, their caregivers, I know some neurologists are members and a few psychiatrists—they’re the ones who ask; what state of mind were you in after the seizure?

The start of the epilepsy

MILEPOST 1—A DETOUR FROM THE “NORMAL LIFE”

Gentlemen, Line Up Your Cars, Start Your Engines, Green Flag, Gun Your Engines, Go Go Go!

Genesis of the epilepsy, the beginning of the Electric Highway and the ups and downs of epilepsy and depression:

“I’ve seen this many times before. When adolescence ends, your seizures will stop,” my first neurologist, Noble Jameson, said. My seizures will stop when adolescence ends; that was seven or eight years; seven years seemed a lifetime, eight years seemed an eternity. So began the mounting frustration and exasperation. That statement has echoed in my mind during a 40-year prolonged adolescence. The brain is like a car’s engine—it controls what we do and where we go and some of us have faulty electrical systems. In adolescence, testosterone shifted my brain into overdrive and flicked the seizure switch that controlled the firing of my spark plugs to the off position—it has remained there for nearly four decades. At the end of my sixth-grade-year during the hot summer of 1974 my engine overheated and I had two tonic-clonic—known at the time as grand mal—seizures. At the time I experienced ictal (seizural) amnesia. So began a 40-year-journey on Epilepsy’s Electric Highway.

Glossary of Epilepsy Terms

GLOSSARY OF EPILEPSY TERMS

TYPES OF SEIZURES

  • Absence—more commonly known as ‘petit mal’
  • Atonic—also known as a ‘drop seizure’ I have a partial seizure that in many ways mimics an Atonic, see Superman Seizures below
  • Complex-partial—also known as TLE or temporal lobe Epilepsy
  • Gelastic—also known as laughing seizures (although, there is nothing funny about them)
  • Grand—means big, petit – means little
  • Mal—means sick (so grand mal means big sick, petit mal means little sick, not too helpful)
  • Psychomotor—another name for Complex-partial
  • Reflex—a seizure experienced as a reaction to some outer stimuli, possibly noise or flickering lights, television or video games
  • Superman Seizures—not sure of the technical name for these as Doc Penovich never said, rather than suffering ataxia—loss of control in a major muscle group—the thighs and butt just muscles just give out, in a ‘Superman Seizure’ my thigh muscles contract and butt muscles contract so I’m launched up and out to land with a crash. I was a runner in my youth so I have good muscles in my legs and butt and I fly a considerable distance before touching down with a thud.
  • Tonic-clonic—more commonly known as a ‘grand mal’ seizure

EPILEPSY WORDS

  • AED—anti-epilepsy-drug, it is also known by the term—meds, old terminology—anticonvulsant
  • Aura—a brief warning before a seizure occurs, this might be a sensation, a taste, a smell, a sound; I have never had the good fortune to have an aura, although for 11 years I had a seizure or sensitive detection dog that acted as a canine aura for me, letting me know ahead of time when a seizure was going to occur.
  • E—short for epilepsy, as a single letter is less intimidating than the whole word, we are the E people—if someone questions you, you can say the extra-special or extraordinary people
  • epilepsy—that’s epilepsy with a small E as people diagnosed don’t like putting more value on the word than there is—plain and simple—epilepsy is excess static electricity in the brain, shocking isn’t it? And people can get really uptight about a little extra juice in the generator.
  • Epileptologist—a neurologist that specializes in Epilepsy
  • Marijuana—cannabis sativa (in medicinal marijuana—cannaboid oil, CBD)
  • Neurologist—a doctor that specializes in nerves, my own specialist, Doc Penovich, is a neurologist
  • Neuro-surgery—surgery done on the brain

CATEGORIES

  • Generalized—occurring all over the brain, and thus all over the body
  • Partial—excess electrical activity occurring in only part of the brain

EPILEPSY-SPECIALIST ORGANIZATIONS

  • MEG, PA—Minnesota Epilepsy Group, Professional Associates, my current specialty group, founded by Doctor John Gates in 1990 and still going strong. My current neurologist—Patricia E. Penovich was introduced to me by Doctor Gates in 1992, when she joined the staff of the organization
  • MINCEP—Minnesota Comprehensive Epilepsy Program, was a patient there until 1990, still in existence, founded by Doctor Robert Gumnit and Doctor John Gates

CANINE SEIZURE CONTROL #7

Buddy Miller, Hero

The WVMA (Wisconsin Veterinary Medical Association) selected Buddy to be the Wisconsin Pet Hall of Fame’s 2011 Hero Inductee. So now, Buddy is officially a hero with a gold medal/blue ribbon to prove it. That summer, just after being placed with me, he truly did save my life, so it is an honor he deserved.

Puppy Love

I’d be lost without him and I think he’d be lost without me. It’s amazing how Buddy took over part of my life so completely, that love, even in its most primitive state can pass between man and beast. The Budster-doggy saved my life that time; and thanks to the miracle of antibiotics, Grantsburg Animal Hospital and I have saved his life twice.

Is There a “Dog-tor” In the House?

Some people don’t believe that Buddy knows when my pill times are. At 8:00 am, 5:00 pm, and 10:00 pm Buddy will come over, sit by me, and won’t leave until after I’ve taken my meds. That’s something they couldn’t have trained him for.

Buddy also knows when I’m feeling ill or depressed. At those times he’ll come over and snuggle up close to me. Hugging a warm, living, breathing dog—a dog with nothing but love to give in return—can do wonders to raise your spirits.

On the Job

A Service Dog is a highly trained canine, which assists disabled people in need. As the owner of a service dog I can tell you firsthand about the changes the addition of Buddy to my life brought, he has lifted my self-esteem, boosted my ego, and broadened my horizons. Buddy enables me to overcome the obstacles life has laid in front of me. With his help I was able to locate what turned out to be only short-term work in a computer-related job and have been pursuing a personal goal of mine, creative writing.

End of the Leash

Buddy Miller 01-01-2000 to 01-27-2014 was put to sleep today (01-27-2014), his kidneys had shut down, white count was high, wasn’t producing red blood cells, and the Vet said everything was backing up inside. He was 14 years—98 dog years young and ready to go.

Buddy also had an occasional “grand mal” seizure and had his own prescription for phenobarbital, but I hated to use it on him. His body would experience a minor shudder. I don’t know if it was a sympathetic seizure but he was awful protective of me.

CANINE SEIZURE CONTROL #6

Service Dogs are People Too

One of the first things I was told before he was placed with me was not to treat him like a person. If I did so, it would really screw him up psychologically. Sometimes he acts more like a person than a dog, though.

Buddy can be a real ham. When he rolls on his back and gets his belly scratched, his lips peel back revealing all his teeth. He’ll lie there with a slaphappy grin on his face that disappears only after I’ve finished. He also break-dances. While lying on his back, he’ll curl his body into C’s, wriggling left then right, dancing to a beat that only he hears.

Occasionally, Buddy will get a sheepish grin with a bit of a wolfish smirk to it. This is when he gets a case of room clearing gas. It’s like a combination of sulfur and rotten cantaloupes.

One night, I was watching a DVD and enjoying a bag of microwave popcorn. Before leaving for the next room, I set the bag on the floor. Next thing, I heard “THUMP! THUMP! THUMP! THUMP!” I returned and saw that Buddy had his head stuck in the bag and it was covering his eyes. He was banging his head into the wall. When I finally pulled the bag off, I got a big thank-you slurp to the side of my face.

Buddy has a collection of stuffed animals. They all look like they’ve had some pretty rough treatment. His rabbit has one ear, teddy bear is minus a head, and he has a three-legged teddy dog. He likes picking them up between his teeth, throwing his head back, and letting go. Some afternoons are filled with flying rabbits, teddy bears, and teddy dogs. He loves animals that have squeakers in them. It’s as though the squeaker is the prize in a Cracker Jack box. He’ll chew off arms, legs, ears, or tails and pull out the stuffing to get at this “treasure.”