First…my apologies for skipping out on you for the last two days! I was under the weather…I mean REALLY under the weather. I don’t think I can ever recall feeling that sick. Call it the 24-hour flu bug, Montezuma’s revenge, my girlfriend Robin thinks I shake too many hands and caught some major germs, my husband thinks it was the neurological gods punishing me for not always taking my meds on time. Either way, I thought I was seriously near death…and it had nothing to do with my Epilepsy!
But, I’ve risen from the dead, and I feel 100 times better today. Ironically enough, today was a check-in day with my epileptologist and as we typically do, the three of us, Dr. Shah, my husband and I drifted into a very deep conversation after he ‘juiced up’ my VNS. The topic: what’s on the horizon in terms of treatments for Epilepsy. As my husband put it…you begin to wonder, where do we go from here? Very good question from the guy I happen to feel is the world’s best caregiver-and the most patient. And, Dr. Shah put it quite bluntly…not too much. And suffice to say, I was quite disappointed.
No new drugs in the pipeline, to speak of…no real shot at a cure. And, it’s generally because the funds for Epilepsy research are insufficient. A great read, if you have about 20 or 30 minutes, is the first ever CURE State of Epilepsy Research Report: http://www.cureepilepsy.org/news/state-of-epilepsy2010.asp. It’s both eye-opening and enlightening. I am going to try to get beyond my disappointment and frankly my fear of having to live with this disease for the rest of my life…and look to the future. What can we do to move the needle?
Jeff Nelson
January 22nd, 2010 at 12:46 pm
Definately disappointing, but there is always a way to move the needle. Got to get the message out there in the open! I see lots of things on T.V. about how individuals can help in support for things such as brest cancer (which is also less common than E), Parkensons, and Alzhimer’s. If only they would put an add out there for E! Concidering how many people have it, or know a relative or friend that does, it might boost some inspiration to get more folks to try a hand at helping with support or become a neurologist. Just wish I knew how to get the message out there.