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When is enough enough before your loved one.....

Sun, 02/12/2006 - 21:38
Hello everyone, Since I was diagnosed with seizures I have been over medicated, ignored, treated with little to no respect, given the wrong medication and accused of faking stroke like symptom's by a paramedic. This has become an overwelming issue for me and I was wondering how any of you may feel about this or have been treated in a simular way? I find it concerning that specialists that deal directly with clients that have seizures have little to no real understanding when it comes to other forms of seizures. For example, I have what is referrd to as P.N.E.S., and this type of seizure is just as common as Multiple Sclarosis. I have had to educate myself regarding my disorder due to the lack of knowledge from my own specialists and lack of communication on there part. Once your independance and freedom is taken from you, your world becomes a daily nightmare, at least mine has, days at a time. I have not been able to fully understand why this type of seizue disorder took so long to show its ugly head at me, and I am constantly at a loss for words, how to explain what my world feels like now compared to three years ago. I do my best and accept each new day just as it is, a new day. I try not to worry about what happened yesterday, yesterday is over and we can't change what did or did not happen, and I try to not worry about tomarrow because it is not here yet. I am herre in hopes of learning all that I can and maybe, hopefully even make some new friends. may God Bless you all and keep you safe. Joyce

Comments

Hi Joyce! My name is Brenda.

Submitted by lilseizures on Wed, 2006-04-26 - 11:49
Hi Joyce! My name is Brenda. I'm 41 and have had petit mal seizures since about 12 and grand mal since about 28. As epileptics, I think we all go through dealing with lack of understanding still, even in the medical community. We have to be so very strong, physically and mentally, to put up with all that our bodys and minds have to go through; from convulsions and injury to self- esteem issues and finances. We deal with things that we didn't ask for but have to be strong because of them. You sound like a strong woman to me. Being new to the group, I sure could use a buddy. How 'bout it Joyce! God Bless you and maintain.

Re: When is enough enough before your loved one.....

Submitted by lking1023 on Wed, 2006-08-09 - 13:00
Joyce, I can relate to your comments and feel that I have experience similiar situations over the years since I was diagnose with a seizure condition. The last twenty some years I have had numerous tests, medications, seen so-call specialists and still no one has been able to tell me or show me physically why I have seizures. No medications has been able to control my bouts with seizures or my years spent in therapy. The most productive result I have had was attending a support group and being around others who identify with me on different issue regarding my medical condition. However, I relocated to a smaller town and now I have no support group like AA or drugs, etc. People here don't want anyone to know that they suffer from seizure and in a way I know why. You are looked at as being abnormal or different and that's something I want to change because people who have seizures are no different than people who have cancer, heart disease, diabetes, etc. That's my goal for the rest of my life is to change the general public concept of people who have epilepsy or a seizure disorder. You have a nice and wonderful day.

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