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………………………………..