Any Epilepsy research can be considered good research…
If you’re like me, you’re always wondering not only how can you help yourself through this disease we call Epilepsy, but how can you help others?
Of course, there’s volunteering with organizations like your local Epilepsy Foundation (for me, it’s the Epilepsy Foundation of Michigan, something I hold very near and dear to my heart!! http://epilepsymichigan.org/). But you can also really take that leap and do something bold like take part in a research study. http://www.epilepsy.org.uk/research/participate.html#memoryandvisual
It’s not as scary as it sounds. Really! I did it a few years ago at Johns Hopkins Hospital with the Ketogenic Diet. It was actually very interesting and quite informative. And, you can get so much satisfaction from realizing that you could be helping not only yourself, but thousands of others who live with the very same disease you live with. There are all sorts of trials available, you can speak to your doctor and also you can peruse the web. One good place to start is the website I included above.
There’s everything from speaking about anti-seizure medication side effects to trying new anti-seizure meds to research on memory loss from Epilepsy. Some research studies are long and some take just 20 minutes to complete! It’s definitely something you might want to consider. I’m sure you’ll agree that any and all information we can give to doctors and researchers can only help them in their studies to someday come up with a cure!
2 Responses to “Any Epilepsy research can be considered good research…”
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Jeff Nelson
February 18th, 2010 at 11:32 am
Epilepsy research can be good, but not always. I did volunteer work with some interesting neurologists in Stanford Ca. at the hospital there. They got a journalist to do some writing on my case….which I met with and discussed my issues. After the testing was over, I was on the phone with this journalist for days on end, trying to make sure and get my story right. She had so many things wrong!…..even my age! How can you get that wrong? My interview with her lasted only moments, but seemed to discuss more about how the nuerologists I was working with were ingenious Albert Einstiens rather than how Epilepsy or meds effected my life. Also, for several months I tried to contact the neuro’s at Stanford to see if they had found anything interesting involved in my case, and they kept telling me “They would get back to me.” That was a year ago! Haven’t heard anything since. Anyhow, I’m going to give you the story she wrote on my case. I still don’t think it is up to par, but like I said, I was on the phone with her for days just to get a few things right. Needless to say, don’t think I’ll be doing any more volunteer work! Or, at least wish maybe you could have been my jounralist at that time. Then maybe would have gotten a better and more poinient story. http://stanfordhospital.org/newsEvents/newsReleases/2009/Picturing-Epilepsy-Mysteries.html
Alysse
February 22nd, 2010 at 6:17 am
Jeff,
Very interesting–and I just looked over the story. It’s actually not bad! Honestly, I’ve been there before. I’ve made a few media appearances-some of which were on live TV, and I hate to admit it, but we can’t expect reporters…even medical reporters to ‘get it all right’!! I was a medical reporter once, believe it or not! That was back in my TV days! The way I look at it, these people are reporting on hundreds of different medical situations so epilepsy is just a drop in the bucket to them! They only process 1/100 of what we are telling them. Still, any coverage of Epilepsy is good attention. It gets the illness out there in the press, so that can lead to an increase in funding for research.
Hope you are feeling good and keep in touch!!
Alysse