On January 27, 2014 there is a bike ride/run/walk that starts at KCC (Diamond Head) that benefits the Epilepsy Foundation of Hawaii. It’s called Sharon’s Rideand it honors a woman named Sharon Rosenfeld, a nurse and teacher who cared deeply about epilepsy and epilepsy patients and was killed during a cross country bicycle ride in 1993. The Silva Family does the walk every year – do you want to join us?
The leading non-medical problem confronting people with Epilepsy is DISCRIMINATION in education, employment and social acceptance.
First off, I know I’m a day late. Secondly, discrimination sucks. I believe this is the reason why many people with epilepsy (and their families) feel isolated – they are too afraid of discrimination to share their condition with others. They would rather just “go it alone,” rather than risk negative repercussions. In the end, that’s the whole point of “Project Purple:” to share, reach out and start to knock down those walls. I stand against discrimination and for Epilepsy Awareness. What do you stand for?
I am THANKFUL for our AWESOME Neurologist, his nurses, and The Epilepsy Foundation of Hawaii for the support and care we receive.
There is a strong link between Epilepsy and depression. More than one of every three people with epilepsy is also affected by depression, and people with a history of depression are 3 – 7 times more likely to develop epilepsy than the average person.
Acceptance is, in my opinion, the silver bullet we need. When we feel accepted for who we are, flaws and all, I believe depression is less likely. Not true for everyone, of course. But I can see desire for acceptance in my daughter. I doubt she even realizes, but it’s there. Now to foster acceptance – well, THAT is the million dollar question. And until we do we can remember an d foster these:
Some people with epilepsy go through testing and become candidates for BRAIN SURGERY. When successful, surgery can eliminate seizures in some patients.
I can remember the day when my husband’s new neurologist first suggested that he may be a candidate for surgery. I was torn between panic, amazement, and a strong desire to knock him out. Sitting here now…15-ish years later, it sounds so horrible, but I just could not believe the reality that brain surgery actually could happen and work. It seemed so “in the movies.”
The road traveled was long, with so many tests, appointments, safeguards it’s mostly a blur. Some things are more clear than others. An extended stay in a special hospital room with EEG hookup to record seizure activity. That stay included taking away meds. That stay included more seizures than I think any human being ever needs to be exposed to. There was the anxiety I tried to mask with a brave face and rehearsed words. That anxiety had funny ways of escaping – like rear-ending a car on the “one week until surgery” day. No major damage – just spilled coffee and an awareness that I wanted to freak out, but chose not to. So many nails were bitten…it’s amazing there was anything left.
Surgery was about 11 hours. Eleven of the longest hours I have ever spent. I remember the surgeon coming out giving good news, and all I could see was the tiny spot of blood on his scrubs. I waited until my husband’s whole family had turns in ICU to see him until I went in. I cried. I was so scared…I thought for sure he would wake up with no memory of me and my life would be over….but it was a chance I was willing to take for him. Taking all that medicine and still having seizures was holding him back, and it wasn’t fair. He needed his chance to live without limits. The nurse told me to go home and rest, and I almost fainted on my way out…I stopped to rest in the women’s restroom until I felt steady and drove myself home with more tears.
The rest is nothing short of miraculous. When my husband woke up he was still him…sore and weak and tired, but just the same. In all these years I have never found anything that makes me think that he “lost” something in surgery. Only his seizures. His recovery time seemed fast…soon he was mobile…and as hair was growing back staples were being removed. Time passed, still no seizures. Medicine slowly weaned away, still no seizures. A miracle. A second chance. A life with no limits. So.Totally.Worth.It.
1 in 20 people living with Epilepsy are sensitive to flickering lights (photosensitive epilepsy).
Video games, strobe lights, flashing lights on the big movie screen. These things are everywhere and most of us think nothing of them. Enter someone with epilepsy. Fortunately for my family, flashing lights have not been a problem. I will forever be sensitive to the potential hazard, though, and consider the implications of situations when these things are used. Perhaps sensitivity and awareness in our own lives with friends and children is the way to go. Knowledge and sensitivity can serve us well in many areas of life, come to think about it.
Everyone is born with a seizure threshold. If yours is high, you are less likely to have a seizure. Your seizure threshold can be lowered by alcohol, sleep deprivation, stress and flickering lights.
Just more reason that people with epilepsy need to really take care of themselves and live as healthy a life as they can. And more pressure for us parents to be sure we are creating that healthy balance for our children with and without epilepsy.
Photo credit to Ali‘i Kula Lavender on Maui