Five hundred twenty-five thousand six hundred minutes (1 Year). 15 years ago my mom, my sister-in-law and I went to see the musical "RENT" for our NYC girl’s Broadway weekend. We really didn’t know what we were in for..... The show was raw, it was rough and absolutely mesmerizing. It was about a subject the three of us really didn’t know much about. AIDS! A few years earlier when I researched AIDS as a statehouse intern I remember everyone was really scared because no one survived it for long, and no one understood how it was spread. Was it really super contagious and could you catch it like a cold?
Those with AIDS suffered from embarrassment, isolation and lack of touch until advocates started talking, and the medical community began to earnestly search for a cure. It was an awakening! It took time, but almost three decades later, there are meds that help men, women, and children who are HIV positive lead healthy, energetic lives and what's also really cool? We know it’s ok to touch/hug them without fear of "catching it".
Those with AIDS suffered from embarrassment, isolation and lack of touch until advocates started talking, and the medical community began to earnestly search for a cure. It was an awakening! It took time, but almost three decades later, there are meds that help men, women, and children who are HIV positive lead healthy, energetic lives and what's also really cool? We know it’s ok to touch/hug them without fear of "catching it".
In 2006, our
family faced our own unknown when our youngest child, Josh, was diagnosed with
epilepsy. We really didn’t know much about it. What was it? Was it deadly?
Would he outgrow it? How would people react? We knew the public was afraid of epilepsy and thought people with
epilepsy fell to the ground and flailed like a fish on land. I went into research mode and read everything I could find.
Joshua’s partial frontal lobe epilepsy caused gelastic seizures. He would suddenly " switch off" for about 10 seconds, and then he would snap back on with a little giggle. He was very concerned about what his friends would think but thankfully, his classmates watched over him and stood by him during a seizure to make sure he didn’t fall, or get hurt. If only more people reacted in a more caring manner, maybe those living with Epilepsy wouldn't try to hide their battle.
At this time, there are limited treatment options; Epilepsy is neurological and there is no "cookie cutter" treatment. It takes weeks to get the right medicine dosage, and if a medicine doesn't work, or there are terrible side effects like the ones Josh experienced the first time around, it takes several weeks to wean off and wean on. When one med doesn't work they will often try layering meds. It is a long journey.
November is National Seizure Month. It’s a time to bring awareness to the dangers of seizure and need for public education and government research. It’s also the month of Joshua’s death from SUDEP. On November 30th we will remember him in the 2nd Annual Joshua Newman 5K Run/Walk for Epilepsy and SUDEP Awareness.
If you’re in the Washington DC area, please come join us. Click here to register: http://www.events.org/newman5k/cpage.aspx?e=64967
We can do no great things, only small things with great love. ~Mother Teresa
HUGS!
Sherri
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| My sweet boy (1 year old) hangin' with me at the zoo. |
Joshua’s partial frontal lobe epilepsy caused gelastic seizures. He would suddenly " switch off" for about 10 seconds, and then he would snap back on with a little giggle. He was very concerned about what his friends would think but thankfully, his classmates watched over him and stood by him during a seizure to make sure he didn’t fall, or get hurt. If only more people reacted in a more caring manner, maybe those living with Epilepsy wouldn't try to hide their battle.
At this time, there are limited treatment options; Epilepsy is neurological and there is no "cookie cutter" treatment. It takes weeks to get the right medicine dosage, and if a medicine doesn't work, or there are terrible side effects like the ones Josh experienced the first time around, it takes several weeks to wean off and wean on. When one med doesn't work they will often try layering meds. It is a long journey.
A friend recently shared their journey
Fact: Thirty to forty percent of people with epilepsy are severely affected and continue to have seizures despite treatment. Our son tried 20+ meds as monotherapy, & polytherapy, supplements, lifestyle adjustments, chiropractic adjustments, dietary treatments, cranial sacral therapy, vagus nerve stimulator (VNS), and acupuncture...and he continues to have seizures. Some things have offered a little benefit, others have offered no improvement and/or horrific side effects. Our son is not a brain surgery candidate. Our next treatment will be Realm Oil from Realm of Caring. realmofcaringfoundation.org/
We were just beginning to look at our long term options when Josh died. Initially, we were told Josh would likely outgrow it, but three years later it was looking less likely, so we began talking about options. Josh told our neighbor he was going to have surgery to take out part of his brain and he was going to put it in a jar on the mantle. Hmmmmm, don’t think it would add to the mantle decorum, but the fact that we was so willing to remove part of his brain showed me how much he hated epilepsy. Given the uneven treatment we received during Joshua’s testing, initial diagnosis, side effects and ever changing treatment, I don’t blame him.
I would have done whatever it took to help my son even if it meant looking at alternative therapies. One therapy that is grabbing headlines is the promise of a specially bred Cannibis that is free of hallucinogens while maintaining (THC) relaxation qualities. Early results are quite positive. It may help give some of those living with epilepsy a chance to get their lives back. HOPE!
Helplessness: In the last two weeks two friends have endured watching their children suffer a series of seizures . One child was seizure-free for three years, the other has been undergoing extensive testing to try to pinpoint the causes of his seizures and get them under control. Both families feel incredibly helpless…sigh…oh, I know how they feel.
For the last 7 years, my family has been living with epilepsy. Three years ago it took a tragic turn for the worst, and I know those around us are watching and learning. I hope we are educating them, letting them know that people with epilepsy are not to be feared, but loved and encouraged.
We were just beginning to look at our long term options when Josh died. Initially, we were told Josh would likely outgrow it, but three years later it was looking less likely, so we began talking about options. Josh told our neighbor he was going to have surgery to take out part of his brain and he was going to put it in a jar on the mantle. Hmmmmm, don’t think it would add to the mantle decorum, but the fact that we was so willing to remove part of his brain showed me how much he hated epilepsy. Given the uneven treatment we received during Joshua’s testing, initial diagnosis, side effects and ever changing treatment, I don’t blame him.
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| Family lunch outing - 2008 |
I would have done whatever it took to help my son even if it meant looking at alternative therapies. One therapy that is grabbing headlines is the promise of a specially bred Cannibis that is free of hallucinogens while maintaining (THC) relaxation qualities. Early results are quite positive. It may help give some of those living with epilepsy a chance to get their lives back. HOPE!
Helplessness: In the last two weeks two friends have endured watching their children suffer a series of seizures . One child was seizure-free for three years, the other has been undergoing extensive testing to try to pinpoint the causes of his seizures and get them under control. Both families feel incredibly helpless…sigh…oh, I know how they feel.
For the last 7 years, my family has been living with epilepsy. Three years ago it took a tragic turn for the worst, and I know those around us are watching and learning. I hope we are educating them, letting them know that people with epilepsy are not to be feared, but loved and encouraged.
November is National Seizure Month. It’s a time to bring awareness to the dangers of seizure and need for public education and government research. It’s also the month of Joshua’s death from SUDEP. On November 30th we will remember him in the 2nd Annual Joshua Newman 5K Run/Walk for Epilepsy and SUDEP Awareness.If you’re in the Washington DC area, please come join us. Click here to register: http://www.events.org/newman5k/cpage.aspx?e=64967
We can do no great things, only small things with great love. ~Mother Teresa
HUGS!
Sherri
Thank you for increasing epilepsy awareness. It is the overlooked disorder, and every bit of knowledge helps. We feel we learned too little too late, but you are doing the important work of giving hope to others. Blessings on you all.
ReplyDeleteKaren, I take it by your comment, you are living this sad journey as well. It breaks my heart! It is so very sad that the attitude towards those with epilepsy is non-chalant and selective information sharing. It's our personal loss and lack of information that fuels my need to tell others about SUDEP. Hugs!!!
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