Monday, November 26, 2018

Half a Year

I haven't posted here in quite a while and generally that's a good sign. I was up quite early this morning with two airport departures and the 6:30 AM arrival of the painters of our home's exterior. I decided I would write something today and that I should note how long it has been since Michael's last lengthy early morning tonic seizure. I referred to our archaic method of documentation- a simple hand-held size yearly calendar. I turned back pages, many pages and counted the weeks--- 27 plus! Later this morning when I informed him, Barry said, "half a year".

I made coffee, found some room to change in where there wasn't danger of a worker sanding or prepping a window, and found the quietest room to make a call and try to straighten out a gift card mishap. I was leaving a message with the restaurant's General Manager when Katie burst into our bedroom. I was so unaccustomed to her "get help" behavior that my immediate thought was that she needed to be taken out. Then it dawned on me-duh- that she indeed may be alerting me. She and I went to Michael's room where observation of  his breathing and facial motions led to only one conclusion. He had experienced a tonic seizure of unknown length and was in a post-ictal state. He was easily roused and even able to take his morning meds within ten minutes. He slept rather peacefully for the next two hours. And so it goes, this life with seizures that is nearing its 29th year.

I am giddy grateful for the absence of those damned seizures for 27 weeks. It's the longest streak we've had in at least a decade, including that glorious period when we tried Jayden's Juice (THCA) and then Charlotte's Web (CBD) until suddenly, inexplicably, everything spiraled out of control for fifteen months. I am BEYOND grateful that the seemingly endless cycle of emergency room visits and hospitalizations is over and hopefully will never, ever rear it's beastly head again. But----this is intractable epilepsy we're talking about here. And never know. You just never know. 

To my readers who are not my epilepsy peeps: In this month promoting epilepsy awareness---just know it is a condition that ranges from controlled to catastrophic. That 30 plus % of those with epilepsy have seizures that are not controlled by medications, hence the term intractable. That it can be devastating to the person who has it and the family members who care for them. That it can be deadly. Let that sink in---it is responsible for 50,000 deaths a year. That better treatments with fewer side effects are desperately needed. I ask you please---don't let my gratefulness, hopefulness or sometimes, even optimism, fool you. Epilepsy sucks big time and increasing awareness is just a small part of what needs to happen.

Meantime...we begin a new streak.

Wednesday, July 18, 2018

Listen In

Last week I listened to the Podcast "Who Lives Like This".  Elizabeth Aquino and Jason Lehmbeck  interviewed special guest Paige Figi. Among a myriad of other things, Paige is the mother of Charlotte (of Charlotte's Web fame). There is much that has been written and televised about Charlotte's story but little about Paige's journey as a caregiver.

Let me just say Paige and I appear to have little in common except for the critical fact we are caregivers to children with intractable epilepsy; Charlotte, age 11, with Dravet, and my Michael, now 33, with what is described by the professionals as "LGS-like" epilepsy.

I was struck by Paige's zest for life and adventure and her commitment to doing what makes her happy so that she is there in every way for her children and all the other caregivers and children she works so zealously for. I encourage you to listen to the interview.

We've been dealing with Michael's epilepsy for over 28 years. We don't have the constant 24/7 scenarios of so many other caregivers because there have been months, even years, when Michael's daytime tonic or other potentially catastrophic seizures were not an issue. That reminds me of Elizabeth's words to her son Oliver, " And some have it better...". However, even during those times of respite there was anxiety regarding the always present uncontrolled nighttime seizures, the pain of observing how the anti-seizure drugs while effective with seizure control were dulling the mind, the experience of other effects of the drugs including behavior issues, lack of concentration, weight gain, weight loss, word finding difficulties, sleep issues, learning difficulties and so on and on and on...

Dealing with a chronic, sometimes, debilitating condition is so much more than dealing with the medical system. That would be enough for sure. But when one adds school system issues, haggling with insurance companies, bullying and isolation, stigma and discrimination---well---it's a lot. If you've been there, you get it. If not, there's a pretty good chance you don't. But, if you listen to the podcast referenced above, you might.

During our most recent battle with the epilepsy beast, I tap danced whenever I could. Yes. Tap danced---FitTAP to be specific. Those hours (sometimes 5 or 6 a week) listening to show tunes, rock, oldies, and Bruno and other contemporary artists while concentrating on  flaps, shuffles, balls, digs and riffs---well---those hours sustained me.

Caregiving can be exhausting and draining. Find that thing that works for you. Whether it be an activity or a place. Find it. Make time for it. Refresh and renew your spirit.

And one more thing. If you're a caregiver, please tune in to Elizabeth and Jason's podcast You'll be inspired and moved to tears as well as laughter--- and you may learn something that will help you to sustain and renew. Promise.

Tuesday, May 15, 2018

Hopeful Still

This morning Michael had a seizure while asleep-one of the tonics that lasts a couple of minutes. I was alerted by some loud thumping which turned out to be one of his arms smashing the wall next to his bed. Had I not heard that, I'm pretty confident Katie would have alerted me as she was almost to my bedroom as I made my way toward Mike's room. It isn't pretty watching a seizure---hoping it ends soon-swiping the magnet over the VNS which seems pretty useless but nonetheless is part of the routine. Also part of the routine is sitting beside him in bed----waiting for the stiffening motions to subside-then waiting for the heart rate and breathing to decrease to some degree of normalcy---waiting till he can groggily respond to his name. Satisfied with opened eyes that briefly meet my own and a grunt that indicates he hears me, I leave him with Katie beside him, hoping he can now sleep peacefully.

Half an hour later I return to the room with morning meds in hand. Michael wakes to the sound of his name. I ask him how he feels. "Fine". He takes his meds, climbs out of bed for a brief trip to the bathroom. I let him know he's had a seizure. His general grogginess or maybe a headache would have alerted him to that fact eventually. I marvel at how he is amazingly functional just 30 minutes after  misfiring neurons took possession of his brain. Amazing. He truly is amazing.

We have settled into this new pattern which actually was the seizure pattern prior to the hellish 15 months when monthly early AM seizures during sleep stopped and were replaced with  tonic seizures occurring multiple times throughout the day. Blessedly, that pattern stopped in February of last year and now it appears the old is new---1-2 lengthy AM seizures a month. It sure beats the traumatic falls, sutures, hospitalizations and emergency calls made necessary when the seizures simply wouldn't cease no matter the emergency drug.'s better than when every day was hell on earth. But it's not acceptable.

Not Another Moment Lost To Seizures... I believe that's the motto of the Epilepsy Foundation of America. I would add Or The Drugs Used To Treat Them. All of this---this morning- and the past twenty-eight years lead to my current rant. Why the hell can't some brilliant neuroscientist(s) figure out why my son's brain and those of so many others are besieged by neurons gone awry? Why can't someone figure out why one medication or a cocktail of anti-seizure meds are ineffective in controlling 30 % of those afflicted, and I do mean afflicted, with epilepsy?  Why?

I have hoped for twenty-eight years that the mystery of one of the many diseases/conditions that originate in the brain would be solved and that such a breakthrough might positively impact some other neurological condition. I have hoped...and hoped...and hoped. And I will continue to do so of course. I will continue to hope that in Michael's lifetime there is a treatment that does more good than harm, or better yet, a cure. Epilepsy is complicated for sure and in many instances, catastrophic. It takes away moments and hours and weeks, months and years. It takes away lives. But it can't take away spirit and resolve or hope.

It can't take away my hope.

Friday, March 2, 2018

Finished, Not Done

I've been talking, thinking, and writing about my retirement for a while now. While McCoy & Connolly Consulting, Inc. was dissolved before the new year; McCoy, Nancy, and Connolly, Mary Lou, had committed to presenting two seminars that were held last week. The sessions were well-attended and (I think) well-done. It is NOT easy to make government regulations palatable or interesting and for the most part, I think we did so for the better part of the last 16 years; and perhaps more so last week. And why would that be? Passion, I think. A truly strong passion for doing the right thing for the right reason and believing wholeheartedly that one's home is by far the best setting to receive health care---a passion to provide the type of information and encouragement to engage home health providers and clients to ensure that patient's receive excellent services geared to the patient's needs---  a passion to teach--- and a passion to care. Do what you love, love what you do.

I'm pretty sure my nursing career is completed now. The past 16 years of doing it our way were not the most lucrative in my 45 years of employment but they were the most rewarding and the most fun. It would be hard, probably impossible, to derive the  same degree of satisfaction working in some bureaucratic system or even conforming to some other consulting company with their own way of doing things. Besides...45-plus years  is enough.

We conversed a lot last week, as we usually do, Nancy and I. There was a bittersweet realization that this was it; but also much talk about the future and finding something else that ignites a similar passion within us. If you ever read this blog or my posts , you're aware I have a great deal of passion and motivation to spread awareness and understanding about epilepsy. That's not going away. I can get extremely passionate about the mess that our health care system is in and about health insurance companies and Big Pharma. I can get utterly unhinged about the drug schedule status of cannabis. I deplore the injustices occurring daily throughout this land---the disregard for the poor and unfortunate, the disabled, immigrants. I abhor the blatant, unapologetic racism. I am beyond passionate about the insanity of the easy access to guns in this country. I could go on and mention the elephant in the room, but this seems like a good place to stop.

So...there it is. I am passionate about a lot of things and I haven't even mentioned the ones that give me so much joy and pleasure---a well-crafted beer, a fine red wine, a gourmet meal-oh hell- a great burger, horse racing, cooking, family mealtime, reading, writing, planning a getaway, tropical vacations, watching almost any sport but most especially March Madness, my beloved FitTAP class and the great ladies I take it from and with, my girlfriends, my siblings and mom, my soulmate Barry and Meaghan and Michael who I would fight to the death for----that's passion.

So maybe it's not passion at all. Maybe it's purpose. Maybe it's a mindset change. Maybe I just need to breathe in and out as Michael always says. Maybe I just need to seize the day, every day.

Ok. I think I've got this.

Wednesday, February 7, 2018

On the Edge of...

This month marks a year that seizures haven't intruded upon nearly all aspects of our lives. It marks well over a year that we haven't placed a 9-1-1 call. It marks a little less than a year that the "edgy" feeling when Michael's in the shower, on a neighborhood walk with Katie, or climbing the multiple cement stairs on campus has, for the most part, abated. It really has been a very good year.

Michael was napping on the couch today as he does on most days. He had a couple of brief tonic seizures which is par for the course---he has them each and every time he sleeps. Dammit. I said, certainly not unusual. We simply don't get excited about them anymore. Then---a more familiar and fearsome guttural noise and a more lengthy tonic seizure-perhaps a minute, maybe a little longer. There I was as I have been so many times. "Michael, Michael---please stop". (after all these years I still think that will somehow turn the switch? Of course not-but it's so automatic. Wishful, spoken plea. ) DID stop. And he did have a relatively peaceful sleep for a very brief period afterwards. Then, he was up and about walking behind my chair, conversing casually and I told him forcefully enough to surprise myself, to "PLEASE sit down".

When Michael ended up intubated and in the ICU in August of 2016 for the seizure that wouldn't stop no matter WHAT, the afternoon nap and seizures were much the same as today. Except today WAS different. It wasn't going south in the way it had THAT day.

Since Barry was home and all seem settled down I went to Vons's. I bought some groceries. And all the while I was going up and down aisles I was suppressing the urge to vomit. My stomach was in knots. My heart, as the saying goes, was in my throat. The aftermath, I suppose, of the adrenaline rush and  the pure and visceral fear we could end up in that very bad situation again. The reality is-we didn't today. But our reality is that we COULD.

When I arrived home all was well. Michael-an hour post seizure, was talkative and inquisitive-oddly enough, about my blog. I resolved that I won't let that one August day take anymore of today's joy away, or tomorrow's, or the day after that...

Promise to self.