Dear Craig,
I do believe that something is up and coming. I believe this because
Obama's Chief of Staff or something like that, he's a pretty higher up
official, this gentleman has a daughter with epilepsy.
I can't remember if I posted to the group about CURE, which I thought
was going to be a help. (the higher up's wife founded the group) But, I
found out through emailing the woman (someone else responded a while
later) that this CURE was only for children and pretty much their
mothers. I was outraged. Only children? I was less than a yr old when
I had my first seizure. They went away and so did the meds after a few
yrs and returned from 16-18. At 33, they returned with a vengeance.
Currently, I'm 37, still with 'refractory' seizures. I explained in
detail how I felt when I cracked my skull or experienced Status and saw
my parents' cry. At this point, I should be caring for them. To see my
dad's eyes tear up, when he saw the blood all over my head ~ doesn't
that count as being a child, having parents who deal with their child w/
epilepsy. They also informed me that all the super expensive tickets to
their events would not be lowered or even free to epileptics or their
caregivers.
It makes no sense. They mention how the research MAY help epileptics
that are older, but I'm not sold on that. Children are allowed some
different meds and can't take some others and the same with adults, who
basically, to my knowledge and experience, can take most.
I certainly don't have an issue with them promoting research for
children ~ I wish that was the case when I was a child. My poor folks
dealing with doctors, who by no fault of their own, just didn't have
training for epilepsy, let alone childhood ep. So, I'm thrilled that
parents have a resource and champion behind them. But, why not all
epileptics and their caregivers? They are contributing, IMO, to the
stigma that so many of us adults endure.
My friends and family, w/ the exception of my folks and sometimes one
brother ~ when he's at their house, these people I was so close with,
have
quietly removed themselves from my life. I'm homebound ~ no buses or
taxis or anything here ~ and the isolation makes anything, a dentist
apptment, haircut, anything ~ dependent on whether my parents can take
me.
I'm recovering from multiple jarring seizures and two huge GM's (they
are getting worse) one I fell in the kitchen and one on the concrete
floor ~ yet the CURE's research might help me. I told them to remove me
from emails, snail mail, etc. Help all of us. I try to have a positive
attitude towards ep., I really do, but I feel that if you are a parent
of a child, join the group. Maybe you could mention the adults and
caregivers of them ~ if enough people do that,
Craig, I believe we will have a better quality of life.
And long story longer, I most certainly will contact my senators and
reps. I think it is so important. I'll mention everything you've said
and my experiences, as well. (mold, flashing lights ~ yes as an adult ~
other smells ~ stress, particulary arguments w/ family, where I always
cave and never voice my opinion, and lack of sleep, I'm sure there are
others) I'll mention the places I've been, the treatment I've received,
and how dramatically my life has 'transformed.
username; I want a good, no great, transformation to take place. So
far, the new neuro I see, has transformed me. I am still having
seizures, really horrific ones, but he knows his stuff. Taking me off
of Felbatol, he did it slowly. Now, he is working on Phenobarb.
I can't wait for my appointment next week!
--- In epilepsy@yahoogroup
>
> Rhonda I too seem to be quiet when I would know I am going into a
Grand Mal seizure. I was thinking in my head in those times that this
can not be happenning again as I am thinking. What did I eat now ? This
wasn't to be happenning since I had surgery. Sometimes I can think all
of that before it happens and sometimes I can't. In saying that, I feel
I am fighting a battle all alone as I know how David had thought when he
fought against Goliath. WE ALL need to fight the battle I am fighting as
some of you know about. For those who do not, I am trying to get the
congress, FDA and EFA who I really wonder about, to get
MonoSodiumGlutamate
everywhere in the U.S.A.
> MSG I know by experiances I have had, causes me to go into a Grand Mal
seizure as will nitrates in ham and other pork products. Not all pork
products affect me but the MSG and all its forms does cause GM's with
me. I have called my congress woman in WV along with the minority leader
in the house to get all MSG and its replacement additives out of our
foods. MSG not only can cause seizures, but it can cause other
neurological conditions along with other illnesses like asthma, high
sugar levels can spike up and OBESITY. MSG is the number one cause for
THAT. Our government reps, along with the FDA, AMA & drug companies have
been decieving us for over 50 years in telling us our foods are safe. No
doctor has ever told me or my parents what caused my condition at 5
months old in the past 48 and a half years. Doing my own investigating I
come to the conclusion that MSG in 1960 caused and created my condition
at 5 months old. MSG I know today are in baby foods
> and all other foods we buy daily that are in the freezer,
refrigerator, or shelf at your home. Junk foods and candy has MSG in
them and most people eats those foods on a daily basis. Sugar free
sodas are bad in that area too and the sweetners used can cause
seizures. All of this should lead to everyone who has a health problem,
needs to call congress and do it now. www.house.gov Find your state rep
and also contact congresswoman Capito from WV and minority leader R John
Bonnier and tell them to get all MSG and its replacement MSG forms out
of our foods now. They want to have a healthcare bill forcing us to be
insured yet our foods are to still make us sick as I can have a GM
seizure among others who know not why they have seizures. This is not
about me as the whold medical industry would not be making money from
MSG as less people would stay home instead of going to their doctor. I
am proof, if I have NO MSG in my foods, I have no G M seizure to
> happen. All anyone here can do it dectect things for themselves or
child they have that has seizures. Other conditions MSG creates among
seizures has made trillions for the doctors, drug companies, and food
companies that WE ALL PAY FOR. YES THAT MAKES ME MAD AS OUR GOVERNMENT
HAVE DESTROYED MORE PEOPLES LIVES, THAN WANTING TO STOP ALL ILLNESSES
THAT MSG CAUSES.THAT IS INSANE ! Ok I'm relaxed now. Everyone should
contact DC and the FDA www.fda.gov if they have reactions of any kind
from MSG seizures or no. Racheal Harrington would be who I suggest you
speak with as she was kind to me about MSG. Then contact the EFA and
pray they will act for us. Joe LaMountain is whos ears you need to ache
and do not be afraid to ask him what EFA is doing about MSG. I am still
waiting for a reply from 3 weeks ago when I called him about the FDA
meeting I had with Cynthia Harris out of Martinsburg WV. I beleive we
all have the power to make these people
> act for us. One can not do it all. My goal in all of this is to
prevent innocent infants from being diagnosed with a seizure disorder
that MSG can cause. It did with me in 1960 and there was less MSG in
foods then compared to today. Get those phone lines and emails working
asap. These sites will help you all know more about MSG. These are
facts not myths as your doctor may tell you there's no truth to it. My
neuroologist now believes 50% of what is in this information. I'm
convinced he'll believe it all soon. www.truthinlabeling
www.sellingsalesman
>
>
>
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