A Week in the Life

It's been a pretty busy week around here. One of these past few days---- and I honestly can't remember the exact date--- marked 25 years we have been dealing with the  epilepsy beast. 25 years. A quarter of a century. The majority of Michael's life. Last night I was with one of the YOUNG Mom's in our Realm of Caring  community and she cried and told me she didn't know how I did it because she was such a disaster for the year her beloved Robbie's seizures were out of control. My response was pretty simple. " You just do it--- you would have...." Yeh, you just do it.

Michael turned 30 yesterday. Aside from a couple small gifts and "Happy Birthdays"all around it was a pretty routine day for him. It's the end of the semester and he's writing a 15 page research paper on how the media can influence societal change regarding marijuana. He 's been doing LOTS of research ---watching WEED and other documentaries, reading many articles, purchasing The Pot Book and really putting it all together in his head. Yesterday he talked to me at length about the Scheduling issue--- he got it. He's read about Charlotte and yesterday he read about Zaki Jackson's journey. "Mom, I couldn't stop tearing up." He gets it. The paper gets turned in Thursday. A very stressful semester will be over and we'll celebrate that and the 30th milestone at a restaurant of Michael's choice. We will celebrate his resilience. We will celebrate over 3 months of the absence of the early morning seizure monster. And we will celebrate our great fortune to have one another. But first--- finish that damn paper.

The annual holiday fundraiser Gingerbread City was held this week. It benefits the local epilepsy foundation. We have been going as a family for about fifteen years. It has grown exponentially in that time as have the cost of tables and tickets. It's a beautiful gala and in past years as a foundation board member I have always worked the room--- profusely thanking celebrity chefs and schmoozing big time donors and bidding on auction items to up the price ( yeh, that always worked out well when no one saw fit to bid after me)! Anyhow--- I resigned from the board recently. We decided we would not purchase a table this year. I released all friends of any obligation to attend ( to support us) which so many did for so many years-- for which I am very grateful . After much vacillation re whether to go at all, Meaghan and I ended up donning our little black dresses and stepping out with the glittery crowd. I felt so liberated! No need to kiss up to anyone--- just enjoy. We had a great time, chatting with people we WANTED to talk with, admiring the structures and staying quite far away from the auction tables.

Friday  night Barry and I attended an event that honored Ray Mirzabegian of CA Realm of Caring. The organization holding the event is called the Alliance for Responsible Medicinal Access (ARMA). The price tag was modest ( $100) and it included dinner, live music and a couple of drinks. It was in a building called Tango Del Rey in San Diego----- very interesting venue and attendees. It was an honor to be there for Ray and to be with his wife Arsineh and his family, Cindy Mitchell and the wonderful young Moms--- Allison, Alisha, Olivia. I would have paid a lot more than that to see Ray honored. He has influenced our lives in a way that can only be described as in those commercials --- priceless!

Tomorrow Meaghan and I are having a bridal shower for Katharine who is Meaghan's best friend and the daughter of my best friend Anna. We have a couple of surprises in store. I think it's going to be special--- a celebration of a wedding to come but also a warm embrace of the past 33 years our families have intertwined and friends have widened and joined our circle of love. I'm looking forward to it. It should be a happy day.

Tomorrow is also my Dad's birthday. He's been gone now nearly 20 years. I still miss him desperately. I am glad we will be doing something family- centered and loving on his birthday. He'd like that.

Well--- time got away from me. It's now Monday morning. The shower WAS lovely. There was so much history of family, friendship and love that was present. Katharine was genuinely moved and well--- it was all just so happy. It was a wonderful cap off to a hectic week full of celebration and remembrance. My heart is full.

City of Chance

I went to Las Vegas last week with two of my colleagues to teach a seminar about starting a home health agency. If you hate Vegas and want to stop reading now--- don't! This is a good one. Not so much good as extraordinary.

During a break prior to the start of my portion of the session on Thursday morning I was approached by a gentleman who had a question regarding something one of my colleagues had said. He prefaced his question by sharing his motivation for wanting to enter the home health field. He told me he had a disabled daughter who received home care but he knew that it could and SHOULD be better. I don't know why---- I don't often share with strangers--- certainly not in a professional seminar, but I told him I have a son with intractable epilepsy. "So does my daughter" he replied.

In whispered tones in the front of the classroom he related his family's struggles over the previous 13 years. Countless medications, the diagnosis of LGS, the plummet into seizure and pharmaceutical hell. The physicians who recently told him there was nothing more they could do. The recommendation to place his beloved 13 year old daughter in hospice care. The desperation to find something to help. I was at once transfixed and horrified. My mind jumped to Charlotte and Zaki--- also placed in that hopeless, heartbreaking, hellhole of modern medicine's failures.

We whisperered breathlessly then.  Me asking if he had considered Charlotte's Web CBD oil. He saying he knew about it. He was willing to move his family to Colorado. ( he shared he lived in Southern California.) He had made contact with RoC Colorado but was unclear what his wait list status was. I told him there was no need to go. Realm of Caring CA was up and running. He was unaware. Last he knew was when the center was shut down. By then I was in the I'm on a mission mode. "I will put you in touch by the end of the day!" Finally he told me that his daughter's Orange County physicians were against CBD even saying that it had done harm in some cases. No need for
me to name the hospital--- anyone in the know...knows. I said simply " you must go elsewhere".

The next hour was a flurry of activity. I did my portion of the presentation of course and then proceeded to text and email Cindy Mitchell and Ray Mirzabegian. I just had to be sure that this desperate father was thrown a life preserver. A life preserver----- a potential life SAVER for his dear daughter. It didn't take long. The preserver was tossed. A chance for healing and ultimately, perhaps saving, offered and accepted. Chris (Dad) is, so to speak, on the way to ROCCA.

Chris said he almost didn't make it to the seminar. He'd never been away from home that long and he vacillated about attending until the last moment. I texted Cindy," he came for a reason----- he just didn't know what it was".

I went to Vegas for a reason. I just didn't know what it was until I was there.

Hey Adrian

It wasn't discipline. It was abuse. You broke his skin. You bruised him. You stuffed leaves in his mouth. You hurt your son. What could he possibly have done to deserve a beating from an NFL football player? Sorry---- that's rhetorical. Nothing. He's 4 years old. 4!!
Your team purports there is a delicate balance they must navigate regarding disciplining children. C'mon Vikings. You just got your butts kicked by the Patriots so you're putting your star back on the field next week!
Hey Adrian. Hey Vikings. I repeat. It wasn't discipline. It was abuse.

The Quiet

It's so quiet after a seizure. We've all retreated to our corners. Me, in my bed, down the hall, making sure the post ictal period is a restful sleep. Well ---- I can't really " make sure"--- just hope and listen. Meaghan getting ready for work. She'll carry the image most of the day. It'll probably color her interactions, observations. Will she grow impatient with some client's whining? Maybe. Barry's reading the newspaper downstairs. He recorded the seizure in the calendar we keep. The calendar. Me: " how long since the last?". He: "three weeks". Quiet.

I read a comment on Elizabeth Aquino's post on Facebook today. It said "fuck a duck". I was so surprised. I have never heard anyone say that except for me when I am just exasperated beyond --- beyond.

Fuck a duck.

About Them Buckets

I like the ice bucket challenge. I'm happy that ALS is getting so much exposure. And I'm thrilled they are bringing in so much money! Do I wish that someone had thought of this for epilepsy? Sure I do. But no one did.
I watched the short video of Pete Frates, the young Boston College graduate and baseball player who got this started for ALS when he challenged a couple of friends to do the challenge ( which had been around for sometime with athletes doing it for various charities). Well---- they did it for Pete and ALS and so it went.
 I just can't get worked up and cynical about this. So what if celebs are getting their mugs all over social media? So what if some people are "showing off" ? It's fun to watch for the most part and the end outcome is that it IS spreading awareness and raising more money than The ALS Foundation dared to hope for even in their wildest dreams.
ALS is horrific. It's described  as a progressive neuro degenerative disease that affects nerve cells in the brain. As I often think about all the neurological  disorders such as MS, Alzheimer's---- wouldn't it be wonderful to unlock the mystery of one so that perhaps we could eventually unlock the mystery of all the pathologies of the brain and cure some of these monsters?
Such as ---- epilepsy?

A Brother A Friend A Seizure

We had such a nice visit with my brother Gerry. The day after he arrived we took in a Padres game. They won! They played well. We were more than mildly surprised and especially pleased with how the current management is supporting local restaurants and breweries. We just may go again before they end the season--which will be soon given that it appears they will not get into the post season. Nope--this year the Pads are truly "Boys of Summer" (only).


The rest of Gerry's visit we explored various lunch and/or brunch spots, studied the Racing Form, went to the track and stayed up late into the night sipping (oh okay---drinking) red wine and trying to figure out the craziness going on across the world, in our own country in Ferguson and within our circle of family and friends. No solutions---just discussion.


Michael was especially looking forward to the week-end because his childhood buddy was returning home after an absence of several years. He was so looking forward to getting together. Maybe it was the late night discussion, maybe it was a restless night anticipating seeing Trevor the next day, maybe it was just the capricious nature of this stupid, vile condition. Whatever the reason , at 8:13am Sunday Michael had an unusually violent seizure. It lasted less than a minute (good) and cast a pall on the household (bad) and warranted the inevitable discussion about altering plans. I wasn't for altering. I moved a brunch reservation back a half hour and I woke Michael an hour later and filled him in about the seizure. Michael soldiered through. No seizure, no headache, no aches were going to keep him from proceeding with his day. We thoroughly enjoyed a brunch with family friends and their baby and Trevor arrived at our home later to get his friend and enjoy a day at the track. It was a good, good day. Seizure be damned!


A family dinner. Gerry's last night until he visits again in December. More wine, more discussion. A restful sleep for all.


Take that epilepsy. Take that!

Insurance Incompetence Ineptitude and So On

I like health insurance. I'm all for everyone having it. I hate the rantings about Obamacare that suggest everything was just fine until it came along. The private sector was doing just fine we are told. Well--- let me tell you---as a provider and a consumer the private sector has never gotten it right folks.

I'll take you with me on a little journey through our experiences with the insurance company my employer chose for us retirees  and our dependents since January  2014. The company isn't new to the insurance business. They just happened to land the contract for my former employer.

January : Imagine our shock when we arrived at the pharmacy to pick up Michael's meds, to be told he was no longer covered on our plan. Heart palpitations, hyperventilation. Gasp! What happened? I signed Michael and Barry and I up during Open Enrollment in November 2013. I am excruciatingly detailed, timely and accurate about doing so. I KNOW the importance of insurance.

I call the insurance company concierge line. Yes, a special line just for me and thousands of others! No sign of a Michael Connolly under my name/plan. So sorry. You'll just have to contact your employer's HR Department I was told. OK. Dial. Hold. Menu. Person!!! Of course Michael Connolly is on your plan. We'll get right on that. OK. Confirmation call: it's done. This four sentence recounting took about half a day to accomplish. No matter. Done. All set.

February : Yours truly has an ophthalmology appointment to rule out glaucoma. Insurance information given. Eye clinic bills insurance company and receives notice the "plan not in effect when service provided". Eye clinic tries multiple times to straighten situation out but has to call me to explain to the insurance company I am not on Medicare as they maintain. Make no mistake. I'm not that far away from being covered by Medicare but I know the year I was born and the fact I am not eligible and I KNOW I did not receive nearly constant reminders by multiple insurance companies to










 " sign up for Medicare" as my husband did last year. So....I called the insurer. Another two hours of hold, menu, hold. Person. Wait. Clarification. Account righted. Or so I thought.

May -July : Second ophthalmology appointment on May 9. July 31 I received letter from the eye clinic. " Dear Mrs. Connolly..... (Insurance co) still has not paid for the visits you had in Feb and May. They (ins co) explained you were automatically enrolled in Medicare...tried calling (ins co) three different times...tried whatever I could..... including hours on the phone with (ins co).... They said nothing else we can do and must be resolved on your end......." And on and on. They tried. I appreciate their efforts.  More on this one later. Just one more little glitch.

July: received letter from insurance company informing me my dependent Barry Connolly "reached the maximum age for coverage as a minor dependent under the terms of ... Current policy. ..... coverage will be cancelled on 01/01/14! Yes, that 's the date. Yes, letter dated 7/17/14! Yes DOB under Barry's name reads October 1948. The letter goes on to explain all Barry's options now that his insurance was cancelled 7 months ago.

Today: Barry begins the process by calling the number on his cancellation letter. After holding for about 10 minutes he speaks to someone. Explains he received letter. Explains HE IS covered by Medicare since last October. Receives another number to call. Calls number. Puts phone on speaker. Hold. 20, 30, 45 minutes. Person!! Tom: "Sorry , you're not in our system at all". You'll have to straighten that out with the HR department of your wife's employer". Barry: "Let me put my wife on. She has another problem. I take the phone. I relate my billing issue. ( see Feb - June above). Me : "I do not have Medicare. Do you see my birthdate?" Tom: "Yes. You are not eligible for Medicare. Let me look at another screen. Oh yes, they did say you had Medicare. I'll have to change that and send the change to that department" . Me to Tom: " I've been through this once before Tom. No offense intended but should I be talking to someone with more authority?" Tom assures me he's taking care of this as we speak. I hear the click , click , click.  Is that his computer keys? Or is he just pretending to fix my problem as in that commercial. I almost laugh. We spend another ten minutes Tom assuring me he'd make this happen. Me obtaining his phone number and extension. Tom remembers something : "oh if you call after next Friday I'll be on vacation for a month" . I encourage you to get to know one of our other representatives. Anything else can I do for you today? " Whaaaat?


Almost the end I promise. So by now I am starting to doubt myself just a teeny bit. I go to my former employers website and look up my family's health coverage. Under Michael: Medical-Yes. Dental-Yes. Medicare-No. Under Barry: Medical-Yes. Dental-Yes. Medicare-Yes.  I briefly describe our situation and look forward to them intervening with the insurance company.


Curiosity propelled me to look up the salary of my nonprofit insurance company's CEO. Last year: a cool 4.2 mil. BS! Pun intended.

Hey Roger

Roger Goodell states, "The league is an entity that depends on integrity and in the confidence of the public..."  Per Merriam- Webster integrity: "Firm adherence to a code of especially moral or artistic values".

Well Roger, as a member of the public that you depend on and as a woman---you know-- that segment of the public you want to attract more to your game/league----THIS woman has little confidence that you actually value integrity before--- well--- let's see--- the health and well- being of your players who are routinely sent back on the field post concussion or injury; or the health status of countless retired players who have physical, mental and emotional issues ranging from loss of memory, seizures, depression, suicide and multiple severe and debilitating physical ailments. It took years and lengthy and costly legal haggling to get the league to assume any responsibility for these unfortunate outcomes and even then, not nearly enough to account for the suffering and loss of life! It's a well known fact that players are routinely injected with Toradol before games so they can play pain free through their injuries. After all, what value are they on the side lines? It's not a narcotic. It's legal. Therefore it's okay. Integrity?

And now Ray Rice. While we don't know for sure exactly what went down in that casino elevator most of us out here in the public that you depend on believe an NFL trained and conditioned football player knocked a woman around then dragged her limp body out of that elevator seemingly without regard. In the court of public opinion Roger you are being slammed because the measly 2 game suspension SEEMS to send a message that in the scheme of things (domestic abuse-wise) if it's a first offense and you're thought of as a "good guy"  you'll get off a little lighter in your system that you claim strives for "consistency" in the fines and suspensions (sentences) that you the commissioner (judge) hand down.

 The list goes on and on about incidents off the field of play. Ray Rice's woman- bashing  will be replaced by the next shooting, murder, DUI or domestic violence case. Integrity? Nah.

A Wink and a Smile

That's what I'm grateful for today. A small joke--- then a look my way, a wink and a deliciously big smile. Michael has re- arrived!

I know our situation is not nearly as devastating as so many. And in the moment when I acknowledge this, I feel an emotion of my distant Catholic past---- guilt! And then... I let it pass.

It's okay that I want Michael to have a better life. It's okay to be upset when the seizure beast returns during the day after a 5 year absence. It's okay to not want to settle for what I have but to want more, much, much more for my handsome, smiling son.

ONFI, Seizures and Cars

Let me just get this out of the way first--- ONFI SUCKS! Okay. Moving on.

I returned from working locally yesterday to a glum faced husband announcing it had been a tough day. Michael was sleeping upright on the couch. Barry related that Michael had a seizure at the gym in the morning. "A seizure? In the day? While awake? Was he climbing the wall?" All fired at him in rapid succession as I tried to control the urge to scream at the top of my lungs. I' m sure I managed to use the F word in some shape or form to vent my anger. "No, he was --- in between climbs--- so he fell on the floor, which is soft", he added. He went on to say the seizure was relatively short- a minute and a half, that he declined the gym attendants offers to call 911, that Michael recovered well meaning he was alert enough after the seizure stopped to stand up on his own and walk out of the gym.

A little bit of salt was added to the wound when they arrived home. Afternoon meds were taken as usual. Then Michael announced he was going to take some Advil because he had a headache. Fair enough. However, instead of Advil he took his nighttime meds. Hence the groggy, drugged up guy I saw at 4 pm.

I can 't lie. I panicked. We haven't had one of these seizures in over 5 years. I placed a call to Ray at ROC, then one to Michael's epileptologist (in that order). Ray was pretty certain it was the ONFI wean, later confirmed by the doctor and Cindy Mitchell who had pretty much broken it down to the day and hour the drug we started weaning a week ago Sunday would be out of his system, effecting a rebound seizure. This sounds so methodical and calm but trust that it was a flurry of texts, emails, Facebook messages and lots of hand wringing. What to do now?

This is our dilemma: Michael has achieved some degree of normalcy in his life. Though he has to be driven there he is able to attend classes at Cal State San Marcos and he is on a pathway to getting a degree in Mass Media. While he would like to take more than one or two courses a semester, the cumulative effect of 4 prescription seizure meds and nightly seizures during sleep prohibits him from doing so. Recently he took up rock climbing at a local gym. When he was more coherent last evening, bordering on fairly alert actually, he told me had some of his best climbs yesterday. No need to examine what was going through my head when I realized he could have been suspended mid wall.

Anyhow- so we want to maintain this degree of normalcy as we embark on our cannabinoid journey. I love the changes we have seen with THCA and look forward to adding CBD at some point in the future. We chose to wean ONFI because of the experiences of others. I wanted it gone or at a lower dose before we move to CBD. So---- what to do? We 've decided to add back that  ONFI dose and wait till the full dose of THCA kicks in, things have a chance to settle, and by that I mean we're back to a baseline of no daytime seizures, and then --- we'll try again.

What have we learned from this latest incident? Well--- I know that ROC is aptly named. I truly felt cared for and it was ---well--- comforting and reassuring. I know that Michael's epileptologist is fully supportive of our cannibinoid journey.She immediately placed the blame on benzo withdrawal and discussed WITH me, not talked TO me, about the next step. Some may feel we should have continued with the wean but I'm not willing to take the risk right now. Timing is everything, right? Now is not the time. But when we DO tackle this wean again, we'll be doing so using a pediatric suspension so we can go REALLY low and slow.

It's the day after. The sun is shining brightly. We are keeping  him "close" today as the neurologist advised. We are wounded , not beaten. We hit one of those "potholes in the road of life" my Dad used to talk about. Michael had two questions for me when he came downstairs a few moments ago: "When can we start the liquid ONFI? " Followed by, "IF not ONFI can we start weaning another drug?" And just now, "So yesterday probably eliminated a car in my future?"

Normalcy.

It's Official: I'm Addicted

It's practically the first thing I think about after waking, second only to checking that Michael is NOT seizing and IS breathing. I definitely think about it often throughout the day and sometimes a family member points out smugly that they knew what I was just doing upstairs.
My name is MaryLou and I am a tapaholic. That's right- a tapaholic.
I have never in my adult life--- oh hell--- my entire life, been a fan of physical exertion otherwise known I suppose as exercise. I failed miserably at playing softball in my youth. My mother, an  excellent softball player, so much so that all her contemporaries say she could have played professionally, told me I threw like a girl. Yes. She really did say that. As an adult I tried it again when Barry and I moved to Michigan. I wasn't recruited for a second season. There have been multiple gym memberships, home exercise programs from Jane Fonda to Janet Jones to wii Zumba, and multiple contraption purchases including a stationary bike. Nothing lasted. I either was ill equipped for the sport, bored stiff with the routines or sick of working out next to the toned and buff.
But tap--- ahhhhh---- that's a different story. One hour of mixed music that transports me back in time to high school dates, college concerts, broadway shows, my wedding day, my kids childhoods and keeps me current with today's music as well. One hour of constantly changed up dance steps. Shuffle- heel-heel-pull-heel-toe-heel. That's the one I have been obsessively thinking about and practicing the past few days. What has happened to me? FitTAP: "the benefits of fitness, the joy of dance". Indeed!

Changing Paces

 So Michael had a seizure yesterday at 5:37 AM---- in his sleep. Nothing extraordinarily different about it though it did come less than two weeks after the last. Once he was settled and sleeping I just went back to bed resisting the urge to write about yet another stupid seizure in some kind of violated and madder than hell state. Does all my ranting really do any good I asked myself?  Am I preaching to anyone other than the choir of desperate, despairing and depleted parents who just want their kids to stop seizing and have a shot at living some semblance of a normal or just a better life? 

I don't know the answers. I know I am beginning to think I need to do something different or do what I do differently. I know in our personal situation we have a long ways to go before we can determine if cannibidiol products and fewer pharmaceuticals will change Michael' s life. I remain hopeful though.

I'm thinking it might be a nice change of pace to practice "breathe in...............breathe out" as Michael has often instructed me. Or maybe, heed my father's long ago words, "MaryLou don't wear your heart on your sleeve". Maybe. I'm thinking. 

THE TALK: About the BIG Dirty Secret

December 1, 2012

I’ve been at this for a while---dealing with seizures and an epilepsy diagnosis for many years----27 since the first, a febrile seizure, and coming upon our 23^rd anniversary of an epilepsy diagnosis, though in THOSE ancient days the conventional wisdom was to label the condition a “seizure disorder” so as to avoid the stigma of epilepsy. Ha!! How did that work out?

Anyhow, I digress. The point of this blog is THE TALK. First, a little history. When Michael was diagnosed I immediately contacted the local Epilepsy Foundation. They were able to supply a great deal of information for which I was very grateful though I certainly didn’t anticipate any need for their support services. I became acutely aware of anything involving seizures. A People blurb that mentioned the death of some sport figure’s 10 year old son who died as a result of a seizure. A colleague whose 23 year old daughter was found dead in her bed (she had a significant seizure disorder), Florence Joyner’s death, and several others. I, unlike some of the parents who say their doctors never discussed the potential of death related to epilepsy, was pretty well aware death was very much associated with epilepsy. While it is true Michael’s pediatric neurologist never discussed it with us, I couldn’t avoid reading about it, hearing about it. As Michael said the other day when I brought up the “you know people that have epilepsy can die from a seizure or a complication from a seizure right?” “I KNOW Mom, that’s why you go up and down the hall fourteen times a night”!

Good for Michael. He knows. Now for the next part. I have been feeling guiltier and guiltier over the last several years as I read about the work of several Foundations dedicated to spreading awareness about SUDEP (Sudden Unexplained Death from Epilepsy). They promote monitors----motion, audio, and video. They promote service dogs to alert to seizures and “get help”. They promote full disclosure by MDs because with the knowledge death could occur, people could take preventative measures. We have our service dog, Katie, who seeks help from us when Michael’s nocturnal seizures become lengthy. I surmise she may alert us about 75-80% of the time but that’s a mere guess since we DON’T have an audio or video monitor other than yours truly. How can we really be sure?

So…about the guilt. If other people have defibrillators ( oh, sorry---didn’t mention that) motion, video and /or audio monitors are we being remiss? Should we be doing more to ensure Michael does not succumb to a prolonged seizure we cannot hear and Katie fails to alert us to? 

The dilemma: Keeping Michael alive while preserving his privacy and right to make his own decisions.

So…last night we had THE TALK sitting around the table after dinner. My mother was there, so I guess we’re  not “protecting” her anymore. We had a frank discussion. 50,000 lives each year are lost to epilepsy. 50,000!!! More than breast cancer!!!  We talked and talked and talked. I told Michael of the options available to monitor more closely, to possibly prevent the unthinkable from happening. He was clear, adamantly clear; no audio, no video, no motion monitors!! He wants to preserve what little privacy he has. I respect that. I respect the Foundations’ that force those of us who love someone with epilepsy to confront the cold hard fact----the dirty big secret of 50,000 deaths a year that our national organizations and many physicians tend to minimize, sanitize or ignore. The BIG TRUTH that people die from epilepsy.

 

 

 

Super Sunday

February 5, 2012

 

Dear Michael,

It wasn’t really necessary that on this most over-hyped week-end, you took it upon yourself to have several super-sized seizures. Dark humor aside, of course you didn’t take it upon yourself--- nothing about this fickle, callous condition is a result of anything you did, do or don’t do. But this morning after the third seizure in 24 hours, all of us in this household are feeling just a little bit broken.

After you slept restlessly for a couple of hours you gamely came downstairs, took your meds, ate breakfast and announced “no naps today” even as your eyes were at half-mast.  I insisted otherwise even when you told me “if tomorrow is a repeat of today it’s on you”. You and I both know that sleep is a culprit in your case. Most often your sleep is disturbed by abnormal discharges in your brain and we can’t even see a clinical sign. Sometimes during sleep you bolt upright three, four, five to countless times and settle back down after just a few seconds. And once, twice, sometimes three or four times a month one of those seconds long tonic movements turns into minutes of intense stiffening impacting all limbs, causing you to bite lips, cheeks, tongue, bringing tears to your tensed eyes. And bringing tears to us who watch--- unable to stop the despicable misfiring neurons. Whoa…………………..that sounds AWFUL.

Yes, it is.

I hate that you can’t even get a decent hour’s sleep. I hate that in spite of being on multiple drugs and a VNS, that in your case, seizure control is something we can only dream about and hope for at some point.  I hate the fear that grips me at night because I am so aware that epilepsy does take so many lives in the darkness. I hate epilepsy with the same tenacity as I love you, your sister and your dad.

I will continue to speak out about epilepsy Michael. Because until the stigma is gone, until people understand and view this condition for the havoc and destruction it can create in so many lives, epilepsy will not receive the funding for research and treatments that individuals who have it so richly deserve.

All my Love,

Mom

 

 

 

 

The 30th Year

Today, the first day of his 30^th year, started out with a seizure. Katie came to get me (good doggie!) and I watched my handsome son seize for about a minute. Afterward, as I sat on his bed holding his hand,  rubbing his arm, weeping silently (yeh, sometimes it gets to me in a kinda overwhelming way) I took a little trip down seizure memory lane----the one in the shower, the one in the bathroom when the lock broke and I slammed the door open with my shoulder, the one in the bathroom where his head was jammed between the toilet and the shower stall, the one in fourth grade when the teacher and nurse thought he was “sleeping” but was in status and ended up in the hospital for a week…….and on and on and on. When you’ve been dealing with uncontrolled epilepsy for 24 years there’s lots of seizures that come to mind.

Michael has been on about twenty drugs in his lifetime; none effective at controlling his seizures. Not one---none! He has tried the ketogenic diet---failed. Neurofeedback---failed. Vagus Nerve Stimulator---failed. And by failed I mean these treatments may have reduced seizure frequency somewhat for short periods of time but he still has them whenever he sleeps; every day, every night. That’s my definition of failure. Oh….side effects must be mentioned: increase in seizure frequency and intensity, confusion, rage, lack of concentration, word finding difficulties, insomnia, fatigue, pancreatitis (a seven day hospital stay with that one), weight loss, and the list goes on.

There is one thing I like about the national epilepsy association and that is their motto/slogan “not another moment lost to seizures”. It is so fitting as there are so many moments, days, weeks, even years lost to the effects of seizures and the drugs used to treat them.  And there are so many lives lost too. Up to 50,000 deaths annually in this country due to seizures and related injuries. Enough losses!

OK----that’s it. End of pity party. Onward to seeking something that may REALLY work.

We are through waiting for the next big pharma drug with a litany of side effects to be Michael’s miracle. We are waiting though----for Charlotte’s Web/Realm Oil. We are part of a movement--- a growing group of parents who want nothing other than a chance at making our children’s seizures stop through use of a natural product with no contaminants and minimal/no side effects!  We are waiting for Michael’s plants to flower in California. We are waiting and we are hopeful.

Sometime in this his 30^th year of life and approaching a quarter century of living with uncontrolled epilepsy Michael will try the oil that may forever change his life. He is hopeful. We are hopeful. For now….that is what we have.

If you are interested in learning more please visit www.realmofcaringfoundation.org.

Ranting

September 16, 2011

Oh yeh. It’s described as neurons misfiring, an electrical storm, and an interruption of connections. We constantly hear about people being able to lead perfectly “normal” lives in spite of it. I’m sick of hearing that, sick to death of trying to make people understand, be more aware, be a little more empathetic---give a damn! Its epilepsy----- and it’s ugly and ruthless and I hate it.

Sure, life chugs along for a while kind of uneventful. Like this past month for example. And by that I mean, nothing (seizures) approaching two minutes or more. The other nasty “brief” (5-15 second) seizures continue of course throughout any nap, before entering a deeper nighttime sleep, before waking in the morning. And sometimes, like this morning, the nasty brief one extends to a full blown oh-I’d say- 4 minute one, where I watched the clock and began to wonder if I’d be calling the paramedics.

That one was at 6:37. After twenty minutes Michael seemed to settle into a fairly restful sleep.   I was pretty shocked when at 7:37 I heard the sounds of yet another. This time, two and a half, maybe three minutes-intense, scary.  This just doesn’t look like a couple little innocent neurons “misfiring”. It looks like there’s a damn explosion in the brain and the body is totally disconnected-stiffening, flailing around, shades of blue. Breathe----breathe!!  Whew. Big gasp for air. Still.

Ten minutes later I hear a rustling. When I enter Michael’s room, he’s sitting up. He looks at me. I assure him he’s okay. “Go back to sleep”, I say. He mumbles. I make out he has to go to the bathroom. He’s unsteady. I help him get out of bed. At 5’9” he’s got lots of inches on me and his skinny body is just barely able to stay upright. He’ll fall if I don’t hold him. “Do you mind Mike? I think I need to stand behind you to keep you up”.  He pees. I hold him up---I cry. This sucks!

Oh sure. I’ll recover that positive attitude. I’ll reply “everything’s fine” when people ask” how’s Michael?” But really---- really and truly----it’s not fine, not at all.

Not Saying Out Loud

May 17,2012

 

I’m not particularly superstitious, but I always hesitate to say how long it’s been since Michael’s last extended tonic seizure because I’m afraid I’ll put the jinx on things and somehow by just saying it out loud this current peaceful spell will be broken. So…shhhhhhh.  It’s been over three months!! Wow. I think this is the longest stretch in several years.

 

Mind you, epilepsy still hasn’t taken a back seat in this household. Michael still experiences frequent, milder tonic seizures during sleep so his brain and body are still assaulted on a daily basis. The ingestion of Felbatol, Zarontin, Zonegran, Lamictal XR, Diamox and Clobazam every day often causes fatigue (duh), makes it difficult to focus and remember and alters  mood just to mention a few of the med’s effects..

 

Michael is finishing up another semester at Cal State San Marcos today. I remain amazed that he can concentrate on any course at all, never mind two. It takes just about every spare moment of nearly every day for him to study, prepare papers, post to education blogs, and generally just be ready to attend two courses two days a week.  

 

I know we are luckier than a lot of families dealing with epilepsy. After all, Michael IS attending college. He WILL graduate someday and hopefully secure a job in media; so he has a good chance of realizing his dream. If his seizures eventually are controlled---and I just have to believe that they will be---he may be able to live independently one day.

 

On the other hand, as I have previously ranted on many occasions, no matter how much better off Michael may be than others with epilepsy or for that matter, other chronic health conditions, the current status remains absolutely unacceptable to me!   

 

I will not- cannot- stop talking about this fickle, callous condition which takes moments, days, weeks, and years from lives with reckless abandon.  How can I possibly stop when I know EPILEPSY KILLS MORE PEOPLE ANNUALLY THAN BREAST CANCER yet receives a mere fraction of that cause in research dollars, public awareness and compassion and understanding? I am NOT saying we shouldn’t pay attention and  promote funding to obliterate breast cancer. What I AM saying is that somehow, some way- one by one and united together- individuals with epilepsy and their parents, spouses, siblings and friends must work diligently to raise epilepsy awareness to another level.  We must.

 

I may not want to say how many days since the last seizure out loud, but there is no way this voice will be silenced until the motto of the Epilepsy Foundation is achieved.

 

“Not another moment lost to seizures”.

 

Again- “NOT ANOTHER MOMENT LOST TO SEIZURES”.

 

Again………………………………..