Hi Millie,
I went into complex partials (smile) on the tennis court except when I had a grand mal back in the spring of 1976! I only had 3 grand mals in my life (that I know of). This one happened to be when teaching a tennis group lesson. I had 6 people across the baseline working with them on a class about learning how to serve. Well, found myself on the ground with people near me and another instructer teaching the class. But the next 30 years had auras, a few simple partial but mostly all where complex partials. We all have our bizarre stories to tell about what we do when in a complex partial. Simply put, I walked around glassy eyed, unaware of the situation doing odd things like simply walking around. Or walking around picking up a tennis ball or two. One time when playing indoors during the cold winter, tried to walk out a fire exit door with just short pants on! The stopped me from getting out I guess (big smile)! I simply just wondered around. Only fell down once, I still have that ripped shirt. I look at it and remember my seizure (weird I know). But really I simply walked around not doing much, friends would stand near me knowing not to touch me (or I would elbow them good). They would saying things waiting for me to notice a little response. Once that happened they knew I was slowly beginning to come out of it. Never got hurt from a complex partial on a tennis court. I was once in the final of a tennis tournament when going into the seizure. About 75 people must have been watching. I came out of it never really getting my mind back into it. We lost our doubles final (oh well)! So simply put, I wondered around, glassy eyed for about 10 minutes or so (smile). I feel so lucky to have had my complex partials rather than grand mals. Boy did I so much feel so lucky having the complex partials!!! I look back at those years always feeling so lucky that surgery 2 1/2 years ago so far has stopped my seizures (so far). Take care, keep a smile on your face!
Steve
--- In epilepsy@yahoogroup
>
> Steve,
>
> What do you do when you have a sz while you are playing tennis?
> Do you stop playing, walk away or what? Is the game then over
> or do you continue to play?
>
> When I have a sz my brain is scrambled to the point that I can't
> do anything except sleep.
>
> Millie
>
>
>
>
>
> > Hey Jamie (smile),
> >
> > Great ending to your post! I'm not embarassed having seizures in public.
> > Actually prefer it (as long as somebody doesn't call an ambulance). Its
> > my way of educating people about epilepsy (smile). I can't tell you how
> > many people From so many different parks all around over the years have
> > seen me have complex partials when playing tennis (big smile)! What I
> > enjoy so much is when I have a seizure during a competitive doubles match.
> > My partner explains to them about the seizure and epilepsy blah blah blah
> > (smile). Come out of it, was told I had the seizure. Get back into the
> > match after a few minutes and win (big smile)! Thats what I enjoy
> > happening the most when I happen having a seizure. When I ask my partner
> > afterwords about their reaction to my seizure. He says "they looked worse
> > than you did when you where in the seizure." Hey, I feel very lucky to
> > have had my learning disability and epilepsy because others have it so
> > much worse! Take care, keep a smile on your face!
> >
> > Steve
> >
> > --- In epilepsy@yahoogroup
> >>
> >> Sue, Don't be sorry. Have you thought about taking what you wrote on
> >> here and sending a copy to Newsweek? I think I have the mag somewhere in
> >> my crazy house(summer break is coming for my kids along with a 9yr old
> >> b-day the 1st full week of break) But I just wanted to tell you not to
> >> be sorry. Thats whats wrong with alot of epileptics now. We feel wrong
> >> for expressing ourselfs. Anytime I go in for a job interview, the first
> >> thing I tell them is "I have szs." Thats when I find out they have a
> >> loved one or a dear friend who has it. The most I get asked for is my
> >> local grocery store always have an updated emergency contact list in
> >> case I have one there since I usually have my kids with me. I would
> >> stand in the streets with a microphone and let everyone know, "I HAVE
> >> SZS AND AM PROUD"
> >> Jamie
> >> --- In epilepsy@yahoogroup
> >> >
> >> > Re: as many people die from EP as from breast cancer? I think that
> >> has got
> >> > to be incorrect - UNLESS the advent of more surgery has upped the
> >> death toll
> >> > but then, that wouldn't be from EP, that would be from the surgery. I
> >> think
> >> > brain surgery has serious risks. Some with myclonic die from falling
> >> and
> >> > hitting their heads. Like Nathan Milstein, the concert violinist. was
> >> > changing a light bulb, had a grand mal SZ and fell. Bummer. But my
> >> > understanding from a lifetime of this are those are onesies and
> >> twosies. I
> >> > think even WITH perhaps more risk from increased surgeries, the death
> >> toll
> >> > won't be that of breast cancer. Not even close.
> >> >
> >> >
> >> >
> >> > I have complex partial sz also plus "dropout". But fairly sz free. I
> >> feel
> >> > the REAL education never happened with these articles. like how to BE
> >> more
> >> > sz free through lifestyle mods
> >> >
> >> >
> >> >
> >> > 1. no coffee, tea coke or anything with caffeine in it, careful
> >> with meds
> >> > which lower the sz threshold (MANY OF THEM) like anti histamines etc.
> >> Most
> >> > popular meds lower the SZ threshold. Dr's advice has been More EP meds
> >> -
> >> > like big help. One of them suggested tegretol for me when I
> >> complained
> >> > about the allergy stuff I wanted I couldn't get and I said "but
> >> Tegretol
> >> > causes blood dyscrasias" and the doc shrugged his shoulders and said
> >> "so?" I
> >> > guess he didn't care. Not HIS blood. Not a ONE doctor I've had
> >> INCLUDING
> >> > two neurologists, the last with a designer practice (charges a FORTUNE
> >> and
> >> > doesn't take insurance), has been of any help to me. The last
> >> neurologist
> >> > suggested an arthritis med which lowers the SZ threshold and didn't
> >> really
> >> > GET IT why I didn't want to take it. A couple of docs including the
> >> last
> >> > neurologist, when they heard I was mostly SZ free, suggested I lessen
> >> or get
> >> > off meds. Well it's the meds which KEEP me almost SZ free. ** sigh
> >> ** I
> >> > got my help from medical books and that sort of thing and I've read a
> >> bunch.
> >> > Livingston is actually still relevant ..
> >> >
> >> > 2. Handling stress - a biggie in preventing or lessening (non
> >> convulsive)
> >> > SZ - never mentioned. Biofeedback, exercise, yoga, deep breathing,
> >> > meditation. all very helpful.
> >> >
> >> > 3. Wise use of narcotics in small amounts for pain - not socially
> >> > acceptable despite the fact that the rest of the pain stuff ALL lowers
> >> the
> >> > SZ threshold including the NSAIDS by the way. Many would rather
> >> prescribe
> >> > meds with nasty side effects than small amounts of narcotics with
> >> little to
> >> > no side effects. ** sigh **
> >> >
> >> > 4. Aggressive supplementation with Vitamin B12 for everyone on SZ
> >> meds
> >> > because they ALL compromise the digestion of B12 - I mean sublinguals
> >> B.I.D.
> >> > or T. I. D. or shots at least once a week. Vitamin B deficiency can
> >> CAUSE
> >> > SZ! So cannot be good for those already with SZ to be B complex
> >> deficient.
> >> >
> >> > 5. Aerobic exercise - helps lessen (non convulsive) SZ
> >> >
> >> > 6. Help with insomnia often a part of EP -- help which is NOT more
> >> meds.
> >> >
> >> >
> >> >
> >> > NOTE: The folks you meet on the internet in any "health condition"
> >> group are
> >> > those who suffer more severe cases. Most like Millie and me, disappear
> >> into
> >> > the mass of humanity on the streets, take our meds for years and no
> >> one
> >> > knows. I joined here because I was having some SZ activity for the
> >> first
> >> > time in years (other than occasional). I stayed around because it is
> >> a very
> >> > informative group, true. And I love the list Mom.
> >> >
> >> >
> >> >
> >> > For the public, I would like them to learn that EP has nothing to do
> >> with
> >> > insanity, etc. Is not scary. Does not diminish IQ except for one
> >> kind in
> >> > kids which is very severe. People do not have to star at you every
> >> time you
> >> > stop talking, asking if you are having a SZ (like a dropout SZ). grrrr
> >> that
> >> > annoys me bigtime.
> >> >
> >> >
> >> >
> >> > I would rather tell folks just about anything else about me rather
> >> than
> >> > about the EP. Frankly I think being a "lady of the night" is FAR MORE
> >> > socially acceptable than having EP. Or having AIDS. EP is STILL
> >> socially
> >> > totally unacceptable DESPITE MOST of us can fade into the public
> >> > undistinguishable from the so called "norm".
> >> >
> >> >
> >> >
> >> > I understand the need for help for those who are severely affected and
> >> that
> >> > is certainly very important but the articles should have ALSO talked
> >> about
> >> > "the others" who probably number in the millions "out there". Those of
> >> us
> >> > who have had it for many years and are afraid to tell even our closest
> >> > friends. we need the public to be more aware too.
> >> >
> >> >
> >> >
> >> > The one boss I told about my EP, totally changed his treatment of me.
> >> I
> >> > became persona non grata. I left that job 6 months later. I had of
> >> course,
> >> > told the personnel office about it but no one else. Oh, nothing that
> >> I
> >> > could sue the b---d for - just stuff which made my job uncomfortable.
> >> >
> >> >
> >> >
> >> > See, that shouldn't BE like that. EP has nothing to do with insanity
> >> or
> >> > anything like that. It's just a physical thing. I've had EP all my
> >> life. My
> >> > mother was too ashamed to get medication for me! She harkened back to
> >> the
> >> > times when EP's with convulsive SZ's ended up in insane asylums. See,
> >> I'm
> >> > old - I remember those times..
> >> >
> >> >
> >> >
> >> > Those Newsweek articles WERE for one purpose. to get more bucks for
> >> the EP
> >> > researchers and the EP society which is definitely worthwhile but does
> >> NOT
> >> > educate the public. See if the public sees that most folks with SZ
> >> > disorders can merge, they will say "well, they are fine - no research
> >> > needed" which is a crock because as Steve pointed out, most of EP like
> >> sleep
> >> > disturbance etc is not visible to the public but STILL we need more
> >> research
> >> > and better MEDICAL management. badly.
> >> >
> >> >
> >> >
> >> > Sorry to be emotional about this. please forgive. I should delete this
> >> > message but somehow I feel "OUR" side should be known too..
> >> >
> >> >
> >> >
> >> > Hugz,
> >> >
> >> > Sue
> >> >
> >> >
> >> >
> >> >
> >> >
> >> >
> >> >
> >> >
> >> >
> >> >
> >> >
> >> >
> >> >
> >> > ------------
> >> >
> >> >
> >> >
> >> > From: no_seizures_
> >> > stephenpales@
> >> > To: <mailto:epilepsy%
> >> > Sent: Wednesday, May 6, 2009 6:48:14 PM
> >> > Subject: [epilepsy] Re: EP articles in Newsweek
> >> >
> >> > Hi Sue,
> >> >
> >> > Its very interesting how we all have different thoughts about the
> >> articles
> >> > in Newsweek in recent weeks. I felt the articles where very good in
> >> > educating people about epilepsy. One statistic that really caught my
> >> so
> >> > called mind was this. Just as many people die each year from seizures
> >> as
> >> > they do with breast cancer. Does that mean that breast cancer isn't a
> >> > disease that kills also in your opinion? By the way, I only know 2
> >> people
> >> > who I've met through the internet epilepsy groups that died because of
> >> their
> >> > epilepsy.
> >> >
> >> > You mentioned they lumped all types of epilepsy together. What types
> >> of
> >> > epilepsy do you feel there are? How would you separate them all?
> >> Remember,
> >> > you are talking to the general public who don't know much about
> >> epilepsy.
> >> >
> >> > I didn't see any type of scare tactic in any way. I strong felt they
> >> where
> >> > trying to show how major epilepsy is. Just wondering what specifically
> >> did
> >> > they say that made you feel its a scar tactic? Sure they mentioned
> >> 50,000
> >> > Americans die from seizures each year. Its a simple fact. As is that
> >> the
> >> > suicide rate for people with epilepsy is 300% compaired to people who
> >> don't
> >> > have epilepsy. Bringing those statistics forward is nothing more than
> >> the
> >> > truth. I'm glad the public hears those stats!
> >> >
> >> > They also tried to explain that a person with epilepsy is affected so
> >> much
> >> > more than just seizures. For me personally, my 1-7 complex partial
> >> seizures
> >> > each month was a small part of how the rest of epilepsy affected me
> >> 24/7!!!
> >> > I never was scared about having seizures, never embarassed about
> >> having them
> >> > in public. If others couldn't deal with it, its their problem not
> >> mine! We
> >> > all are affected in different ways because of epilepsy. They also talk
> >> about
> >> > the famous statistics in how unfairly funded epilepsy research is as
> >> > compared to other health issues.
> >> >
> >> > I'm extremely glad to have had how and what was written shown in such
> >> a
> >> > popular news magazine as Newsweek.
> >> >
> >> > This would be a very interesting subject to bounce around here. Take
> >> care,
> >> > keep a smile on your face!
> >> >
> >> > Steve
> >> >
> >> > <http://www.newsweek
> >> >
> >> >
> >> >
> >> >
> >> >
> >> >
> >> > [Non-text portions of this message have been removed]
> >> >
> >>
> >
> >
> >
>
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