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Do You Ever Wish Other People Could Spend A Day Walking In Your Shoes?

Do You Ever Wish Other People Could Spend A Day Walking In Your Shoes?

A couple of months ago it was confirmed that the surgery which was done to repair my knee after a bad fall (unrelated to epilepsy) didn't work. As a result I have to have part of my knee replaced due to this accident. It has left me on the door step of a very dark place that I haven't been since being diagnosed with epilepsy in 2011.

I'm coping a lot of flak from my sister and brother-in-law who think that because I can walk around the house without a crutch I should be able to so when running… read more

A MyEpilepsyTeam Member said:

Every time I hear about somebody having bad experiences from the mainstream people say something negative, discrimination, harassing, disrespectful, and caring. Many people can be very ignorant and it makes me frustrated, and angers.

I admit that a lot of the time, I would wish those people would become diagnosed themselves with Epilepsdy. At the same time I know that they just don’t understand Epilepsy. It would make it so much easier if they would teach this K-12th grade schools, to help them understand better about Epilepsy. Help reduce this ignorance.

posted 5 months ago
A MyEpilepsyTeam Member said:

It is not actually the epilepsy but the tablets that cause the tired ness make you drossy all the time an sleepy an dissy

posted 5 months ago
A MyEpilepsyTeam Member said:

I do that a lot of times I wish I people could stand in our shoes like to Marcus be an epileptic and it’s not I think it’s funny to be left at the seams and everything and it’s not I think it’s easy and it’s not and our shoes and everything I had a daughter that had epilepsy he didn’t like it at all he has a daughter that had epilepsy I need it like mocking her teasing her nothingBut he didn’t care but hurt me at all because he was the one being teased most of the time they decide not to have any children further we have as much as it is now nobody could possibly pass on it in the 50s and 60s at that time Marker is an every one of us in all of our DNA just when it gets activated is what makes it happen at that point have a great day buddy and a happy new year.

posted 5 months ago
A MyEpilepsyTeam Member said:

I don't wish that they could spend a day, but I would like for some of them to understand what it is like to have a seizure (though none of the dangerous parts of it from damage from a potential fall or a dangerously long full seizure) and the some of the after effects --recovery time period and what comes with it--so they could really understand what we are dealing with (especially for those who believe that we are "faking it" for attention).

Lucky for me, I have a great local support system from my large family with my parents still living, six biological siblings and some very close family friends who we view as sisters an in-laws of my married siblings and their children and even a pair of grand children to my older brother (I am #3 and he is #1 in the birth order of our parents 7 children). However, I know that too many of my friends in my team are not so lucky and thus have little or no local support system, but lots of friends here who are there long-distance support system of friends who know exactly what it is like to experience a seizure or are caretakers of children who are experiencing those seizures who I have been able to advise about the fact that if we are exposed to their sadness from our experiences of witnessing our seizures that we just feel guilty and sad that we are bringing that sadness to them. I am especially sad and guilty for those who the worst of my seizures (especially when they were out of control and put fear that I was dying into my mom in 2003 after the pharmacist's major error and that and a series of errors by my first neurologist (due to Alzheimer's stealing his exceptional up-to-date knowledge of Epilepsy, all neurological disorders and everything that can come along with it resulted in major sleep apnea and thus a darker personality change from severe sleep deprivation). I also had the huge advantage that I was working at Massachusetts General Hospital Treadwell Library (2000-2014), thus at one of the best hospitals in the world during the worst period of my Epilepsy and the arrival (and should have been deadly) sleep apnea. However, God performed miracles to keep me alive then. Part of the reason is so that I am able to share up-to-date information from the top sources in the world using the experience that I have from my 14 years as the Interlibrary Loan person for MGH Treadwell Library. And to also share hope through sharing the stories of the miracles of God that kept me alive and sustaining no major damage while medical experts have no answer as to how it is possible.

posted 5 months ago
A MyEpilepsyTeam Member said:

All to familiar I had 6 botched surgeries on my left knee. It wasn't until exactly the day after statute of limitations expired that an orthopedic Surgeon told me the facts that the original surgery was done wrong to begin with and I could have sued for mal practice. So in essence they all covered for their peer sadly. And yeah the frozen leg syndrome is not fun especially when you fall down stairs without warning because leg shuts off with no warning. And after the 6th surgery I walked like the hunchback. So after extensive research I found a surgeon to hear my story and he volunteered to take my case and said he would rebuild my knee. In short he didn't he did an impromptu modification and videoed the whole procedure. And I was walking normal the same day. I still had the short circuit issue until During Covid I had a screw removed that again doing some research came across how damaged nerves can cause it. Well the screw was compressed against the one that shut my leg off very weird. Once the screw was out I have not had one short circuit fall. Hope there is light at the end of your knee issues. Took 24 years to resolve mine to a satisfactory level not perfect of course.

posted 5 months ago
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