I hope everyone has enjoyed a great Thanksgiving with family/friends or colleagues, Black Friday or Cyber Monday or however you celebrate your Holiday season.
It has been 1 week since my last blog post but partly due to family time, baseball for my son and unfortunately some rough spots for myself as well.
Some of you I know are #NFL fans and some I know are NOT:) Either way week 13 of their season I absolutely LOVE! Every player has the opportunity to choose a cause close to their heart to advocate and educate others on. They also donate money to that cause as well as raise funds during that week. It is called #MyCauseMyCleats, because the cleats they wear for these games are specially designed by artist to represent their given cause.
I want to personally thank 3 that have chosen #Epilepsy as their cause to bring awareness to and also donated to the Epilepsy Foundation of America and one donated to Epilepsy Florida (to stay closer to home for him). I messaged each of them via IG, and also to their teams...one just to say thank you from #TeamParmer and also in hopes they will share their personal story of #Epilepsy....might get lucky when season is done & hear back.
*De'Mornay Pierson-El of the Broncos (Follow him on IG dontpunt_15)
*MJ Stewart of the Browns (follow him on IG checkout_marv)
*Sam Eguavoen of the Dolphins (follow him on IG louisvslugga13
OK, the next topic is a very tough one for me because it deals with the mental health aspect of #Epilepsy and those that deal with mental health issues daily, can relate to me there. Just recently my Neurologist feels I might have devloped PNES seizures: defined as Psychogenic nonepileptic seizures according to the Mayo Clinic. PNES Seizures are actually very common diagnosed at Epilepsy Centers 20-30% of the time of those living with #intractableseizures, and 33 per 100,000 of the general population making it as common as sclerosis according to the Epilepsy Foundation. Some people also have compared it to a form of PTSD, because they can be caused by a traumatic injury or memory.
He feels this way because I have lived with uncontrollable #Epilepsy for a very long duration, I have many forms of uncontrolled seizures, on many medications and was believed that my RNS implant was going to be my saving grace to be at least better controlled vs where I am at now. (worse in place of better) He also, feels other factors that play into this could be:
1) I went from working FT through uncontroballe seizures for a long time to basically told, I had to go on dissibility. So in my mind I see myself as a failure or less help to my family financially. Plus following medicall disabilty starting...... I had a 2nd brain surgery, we moved & COVID it all within a short timeframe.
2) I have always been a strong-willed, independent person, (what who me...never LOL), and now I have no job, and haven't driven since 2010.
3) I have always been the person who has helped others in whatever they needed, and not the one that always has to now ask for the help.....which i do not do well at all at
4) I feel a burden as a wife and mom, because they at times take care of me in place of me taking care of them....as in my mind I should be doing
I could go on but I think you get the picture:(
The problem with PNES seizures they are very hard to diagnose because they mimic physically your "true seizures", its just they are psychological in nature.
For now much more research they say needs to be done in order to help those living with PNES.
My care plan by Neurologist right now for PNES is taking daily "brain rest time" from 1:30-3pm approx. (next pill time is 3pm), to shut all things electronic off, and hopefully my brain as well, and just let my entire body rest, and not feel an obligation to be doing things for others. This in turn will not only help with my PNES seizures but also my #Epilepsy, as by having my body rest during the day and not being exhausted.....it makes nights easier on my brain function. The conflict we have ran into this is my nocturnal seizures, that can occur during this time frame and make my body exhausted.
The 2nd thing has been to begin Cognitive Behavioral Therapy (CBT) which I was doing over the phone due to COVID, but it was going anywhere for me. Basically because the person I spoke with daily focused a lot on my negative things going on...the exact opposite of what I needed and it wasn't face to face. The basis of this therapy is talking therapy that can help you manage your problems by changing the way you think and behave. It's most commonly used to treat anxiety and depression or other mental health conditions but just recently in 2019 became utilized for those living with PNES or any forms of #Epilepsy.
So those of you out there with #Epilepsy, #PNES, #PTSD or any #Mentalhealth condition please do not hesitate to DM me, as we can all use someone to chat with that can relate and get positive energy going:)
Please go follow these NFL players or find a NFL Player that supports your cause of choice and thank them for week 13 #MyCauseMyCleats
The calendar changed over November #epilepsyawarenessmonth purple porch light. Now it's December and time to celebrate the joyous Holidays with out red porch light
#TeamParmer #NeverGiveUp #PNES #EpilepsyMeds #EpilepsyWarrior #MyCleatsMyCause #EpilepsyAdvocate #AbsenceSeizures #Simplepartialcomplexseizures #Dropattacks #CardiacSeizures #Mentalhealth #epilepsyawareness #Epilepsyaction #MayoClinic #EpilepsyFlorida #EpilepsyFoundationOfAmerica #EpilepsyLife #EpilepsyStrong #Blessedbymyfamily #Proudofmymen #WeFightEpilepsyAsAFamily