Super Sunday

[Mary Lou Connolly]

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

[Mary Lou Connolly]

Yay for
Abbey!!!! Keep up the good work. Since
I wrote the blog things have been pretty quiet here...hoping that continues. Thanks for the comment Rebecca.



,

[Rebecca R Alley]

I am still praying for Michael and your family.  We all want these seizures to stop stealing our energy and peace. 

Abbey took a class at the community college where I teach part-time.  She made an A!

Celebrate every particle of joy. 

Thanks for sharing your lives with others.

[Sara Pena-Gonzalez]

I decided to go gluten free even though Im seizure free because 4 weeks out of the blue I started being depressed when I thought I was over that. I had depression in middle school and now im back with it so I decided that going gluten free might help me

[Lisa Boylan]

Mary Lou--the strength and power you bring to the table in your commitment to combat epilepsy is inspiring. Thanks for always reminding us we cannot give up on continuing to fund research that will really lead to a cure. One seizure is one seizure too many. I hope things are better for Michael this week--and this year!

[Mary Lou Connolly]

Thank you Sara and Shannon. Ironically a good friend mentioned the gluten free diet this week. As you can imagine after 22 years we have tried many things---traditional and alternative. Appreciate your thoughts and best to both of you! Mary Lou

[Sara Pena-Gonzalez]

I am so sorry and I wish your son could have the same sort of luck as me.I was diagnosed with Epilepsy on September 13th 2011 after having a grand mal on August 4th 2011 which I thought at the time was my first seizure when in fact I had been having absent seizures for a long time.I have been seizure free since my seizure on August 4th thanks to taking lamictal 100mg twice a day and changing my lifestyle. I have been having a hard time with the diagnosis but after reading about your son it made me realize how lucky I am. Has your son tried the gluten free diet I think he should try it because 1 of the symptoms of being allergic to gluten are seizures also I recommend you and your son check out the book called mindsight by  DR Dan Siegel and also go to his website where he has videos to view for free and other cool stuff http://drdansiegel.com/books/mindsight/ if you want to chat about anything at all you can email me@[e-mail]

Sara Pena-Gonzalez

[Shannon Newcomb]

I'm so sorry. I wish things could improve with your son and his epilepsy. I know it is hard. I've been through a temporal lobectomy, 11 medications, I'm on a VNS, and over the summer I will have my 4th EEG. I've had my epilepsy my entire life, almost 19 years and my Neurologist said mine isn't curable. I have auras everyday, seizures 2-4 times a month, and I get double and blurry vision a lot. It is hard watching your child go through the pain but you show how great of a mother you are by just showing your care and concern. I would just do your best to stay strong and continue to keep in contact with your son's Neurologist. I call my Neurologist's office 3 times every week with things going on and the registered nurse is great and always keeping me updated with what my Neurologist says I should do. It costs no money and it is worth the time. I pray for you and your son and as I said, whenever something happens, call your son's Neurologist's office and keep them updated and they can give you guidance and support and let you know what is needed to do. God bless you and I hope things improve for your son.