[epilepsy] Informing about EP

 

Hi everyone,

I have lived in a 3 bedroom with bath apt in a retirement center
for 15 years. Last Tues I was to MC our monthly birthday
party. The MC is to get the program. I had asked quite a
few people -- but I couldn't find anyone to give a program.

So I decided I was going to tell them about my 50 years of
EP. There are 150 apartments in my building and there were
about 80 people at the party.

I told them that my first szs started when I was carrying my 2nd
and 3rd daughters but I was not DXed until my 3rd daughter was
2 years old. My girls were then 2, 4 and 6. They are in their
50's now.

I told them that my szs at first were grand mal but now are more
like complex partials-- and explained both; how much meds I
take daily, and gave some examples of when I had szs. I told
them there are 25 different kind of szs and about that many meds.

I told them to call my daughters living in my town if I don't act
like my usual self -- stare, act like I don't hear them, don't
answer their questions and don't ask questions . I told them
that my daughter's phone numbers are in my Medical Alert on
my right wrist and on the back of my apartment door. I had also
made papers that they could take home if they wanted my
daughters phone numbers.

I also told them about you in this group and how I had learned
so much from you. I told them I feel very fortunate compared to
quite a few of you who are still having szs although you have
tried many meds, have had operations and still have szs. I also
told them about dogs that are trained to know when you will have
a sz.

I told them that the reason I was telling them about my szs is that
they will know what to do if and when I have another sz. I have been
on Dilantin and Phenabarb for over 20 years and my last sz was
5 years ago.

I got a lot of compliments that I was willing to share my story.

I am telling you this because I truly believe we who have EP are the
ones to inform and teach -- if we want people to understand EP.

Millie

[Non-text portions of this message have been removed]

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