Higher Education Guide: Talk to your Care Team

Your Care Team

Let your specialist (in my case, my neurologist) know that you are planning on going to college.  They have been to college themselves for many years, and know how stressful it can be.  They may also want to change your medicine slightly to compensate.    However, try to keep them in the loop as much as possible.

My neurologist did not try to discourage me at all from getting my graduate degree.  She was particularly happy to hear about some of my accomplishments.  While attending graduate school, I was particularly vigilant about maintaining my epilepsy diary.  I could then tell the difference between the number of seizures before I started school, and how many I’m having now.  My neurologist found this kind of information to be very valuable.

As a side note, some colleges have a student health insurance program.  You should investigate it and find out if it will let you see your current specialist with minimal out-of-pocket costs.  If you don’t like the program, you should be able to opt to use your own health insurance.

Back to the “Success Guide to Higher Education for the Chronically Ill



Upcomng Webinar – Introducing WebEase

This webinar is coming up soon!  There may still be time to RSVP.  Here are the details:

What: WebEase: A Webinar for People With Epilepsy

Who: Presented by the Managing Epilepsy Well (MEW) Network in partnership with the Epilepsy Foundation and the CDC Epilepsy Program. Special thanks to American Epilepsy Society, to the Epilepsy Therapy Project and to UCB/Epilepsy Advocate for their assistance in promoting this event.

When: Tuesday, November 13, 2012, 2:00-3:00 pm (Eastern Standard Time)

Where: On-line

Speakers: Sandra Helmers, MD, MPH (Emory University)

“WebEase (Web Epilepsy, Awareness, Support and Education) is an interactive, on-line self-management program for people with epilepsy. WebEase is different from other Epilepsy websites because it does not tell you what you should do.  Rather, it guides you to think about what is important to you in managing your epilepsy through taking medications, managing stress and getting a good night’s sleep. WebEase is for anyone living with epilepsy and who is interested in improving their self-management skills regardless of where they are in life, or how long they have lived with epilepsy.”  (http://www.epilepsyfoundation.org/resources/Webinars/Introducing-WebEase-A-Webinar-for-People-With-Epilepsy.cfm)

If you want to attend, click on the link above for more information.


Texting 4 Control

Texting 4 Control


Texting on a qwerty keypad phone


“A new texting initiative from the Epilepsy Foundation and Care Epilepsy to assist in seizure management

Trying to take better care of yourself, but sometimes you forget to take your medication? Want to be able to track your seizures in a patient diary and send it to your neurologist? Need some motivation to get you through your day? … Texting 4 Control is a new system targeted to users aged 13 and older with mobile phones that allows you to receive reminders via text messaging about when to take medications, as well as receive motivational messaging if you are having a particularly tough week managing your epilepsy. The program also allows for recording of seizures in a patient diary, as well as tracking emergency room visits, rescue medications, and/or injuries. The system allows you to see your seizure pattern in graph or calendar form, as well as share that information with your neurologist or epileptologist.” (http://www.epilepsyfoundation.org/livingwithepilepsy/healthandwellness/Texting-4-Control.cfm)

Although I was not able to find much information on Texting 4 Control, this sounds like a great way to manage your health.  It sends reminders to you and even records some information into a patient diary.  I fully encourage anyone who has used this already to leave a comment to this blog post.  Your local Epilepsy Foundation may be able to provide more information.  You can sign up at Texting 4 Control.



My Epilepsy Diary

I had several problems over the years with doctors switching me to different medicines whenever I moved somewhere.

Part of the problem was lack of information.  I should have been recording the following information: ALL of my medicine changes, hospitalizations, seizures, and any relevant information that would help a neurologist figure out what is going on.  Many people who have epilepsy keep an epilepsy diary in order to record this information.  I was not doing this and my doctors were having problems with my treatment as a result.

My spouse and caregiver had the brilliant idea of organizing all of my medical records and recording it in a spreadsheet.  They were spread out over several states, so this was a massive undertaking.  We then organized the epilepsy-related information from my medical records into tables, graphs, and charts.  If my epileptologist needs it, I can print it off or email it. (Not being sarcastic, my epileptologist loved the spreadsheet!)

Has my diary been successful?  Absolutely!  My care team has often used it to find out what medicines I have taken and why I stopped taking them.  I have also used my diary to find out other useful information.  I feel more empowered when going to visit members of my care team when I bring it along.