Celebrities with Epilepsy

Celebrities with Epilepsy | April 9, 2020

There are some people who don’t turn a deaf ear to what everyone else doesn’t want to hear. The phobic fear of epilepsy.

For example, Greg Grunberg is a true “Hero.” Not just as a TV star but also as the spokesperson for the Epilepsy Foundation of America. He is joined in his support by:

Harrison Ford of Star Wars fame, auctioned off his “The Force Awakens” signed one-of-a-kind leather jacket for $191,000 to benefit NYU’s non-profit Langone Medical Center in light of his daughter’s successful treatment. He is quoted as saying: “This is a cause near and dear to me.”

Courteney Cox — who achieved fame for her role as Monica Geller on the NBC sitcom “Friends”.

Leonardo DiCaprio — internationally famous for his performance in “Titanic”, “Gangs of New York”, and “The Aviator,” to name a few.

Jennifer Garner — famous for her T.V. role as CIA agent Sydney Bristow in the thriller “Alias”, which aired for five seasons

Chanda Gunn — USA Olympic Women’s Ice Hockey goaltender, and bronze medal winner of the 2006 Winter Olympics. She is also the proud spokesperson for the Epilepsy Therapy Project and Epilepsy.com.

Larry King — recognized in the United States as one of the premier broadcast interviewers, winning an Emmy, two Peabody Awards, and ten Cable ACE Awards.

Sarah Jessica Parker — the unforgettable Carrie Bradshaw from “Sex in the City” which aired for 94 episodes!

Mike Simmel — (Mighty Mike) of the Harlem Wizards — now a national spokesperson for various epilepsy awareness campaigns, and helping children at camps with special needs.

Geoff Pope — an American football cornerback who earned a Super Bowl ring with the Giants in Super Bowl XLII.

Don Rickles — American stand-up comedian and actor — one of the most respected talents in entertainment.

Charlie Sheen — noted movie and television actor, recently donated 10K for epilepsy

Jason Snelling — American football running back for the Atlanta Falcons of the National Football League.

Neil Young — Canadian singer-songwriter who is widely regarded as one of the most influential musicians of his generation.

And, on the other side of the pond there’s:

007’s Daniel Craig. (The only blonde to play Bond!) He Supports Epilepsy Action in England. Along with:

Dame Judi Dench CH, DBE, FRSA — honored and famous for her contributions to British film and stage.

Hugh Laurie — the most watched leading man on television in his role as “House M.D”

Sir Roger Moore — debonair as Simon Templar in “The Saint” and James Bond in “Live and Let Die”.

Jonathan Pryce, CBE — versatile and accomplished Welsh stage and film actor and singer.

Claudia Schiffer — one of the world’s most successful models, having appeared on over 500 magazine covers.

Emma Thompson — winner of Hollywood’s Oscar twice, and three-time BAFTA award winner for her witty stage and screen performances…

Can you name some others?

To subscribe to Epilepsy Talk, simply go to the bottom of the right column, enter your email address and click on “Follow”.

Resources:

https://www.looktothestars.org/charity/epilepsy-action

http://www.looktothestars.org/charity/398-pediatric-epilepsy-project

https://www.epilepsy.org.uk/about/blog/2019/celebrities-supporting-epilepsy

https://www.youngepilepsy.org.uk/about-us/who-we-are/celebrity-ambassadors-and-supporters/

29 Comments »

Phylis, this is an impressive list of talented and generous people! Do you suppose that we could find some of them who would be interested in a talent show? I’m thinking, once or twice a year…for epilepsy. The talent would be, of course, the stars viewers are expecting to see…and people who happen to have epilepsy! Some could even be stars who happen to have epilepsy, as well. If it raises money for research and assistance for whomever needs a hand up, that would be great! But if it shows that epilepsy isn’t a boogeyman coming to steal souls in the middle of a dark, moonless night, even better.

LikeLiked by 1 person

Comment by catsissie — April 9, 2020 @ 1:52 PM

Reply
- That’s a brilliant idea. But I already tried to contact Neil Young — who has epilepsy and is a generous contributor — and couldn’t even get past his agent.
  
  Plus, his website said he wasn’t touring this year. So, I don’t know what’s up. 😦
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — April 9, 2020 @ 2:07 PM
  
  Reply
  - I wonder if a “CANADIAN” would be able to get ahold of him?
    
    LikeLiked by 1 person
    
    Comment by Kathy S.B — April 19, 2020 @ 7:21 PM
  - Good question. But I do know (I think for personal reasons), he’s not available at all this year. 😦
    
    LikeLiked by 1 person
    
    Comment by Phylis Feiner Johnson — April 19, 2020 @ 10:37 PM
Over the past several decades, I had tried to connect with a few of those who had made it in the public eye & how everyone idolizes those who have a name & status attached to it as if seizures were nothing to them in their career. Be it as it is, the epilepsy advocate groups that they are connected with, are all the same mind thought, to where if you are just at the least different from an average person who lives with seizures & does everything by THEIR BOOK in the HOW TO COPE living with seizures & alike, and if you do all that they suggest, then you are then 1 of them. But if you say what your experiences have been for 30+ years, now over 59, you are never going to be able to connect with them especially if you are to them A LOSER because they HAVE MADE IT, & while they had everything to work out fine for them, for the most part, then all you may be doing is crying the blues since you are of a drag to the rest of those who made it living with seizures. I KNOW THAT IS TRUE as the advocate worlds who claim they work for US, is never interested in you as I learned that again 3 to 4 months ago taking to a VERY INTELLIGENT REN researcher at the EFA, who was very concern of all I knew about Epilepsy & all the triggers that I KNOW for over 55 years has effected my brain & I know it can harm other brains in the same ways, to maybe 1 more person on earth & that person maybe is YOU. So that did not matter to this REN seizure researcher, who has NO COMPASSION for me or anyone living a life of HELL after you understand those things that you have known for over 55 years has effected you, and that COULD NEVER EVER HAPPEN TO ANYONE ELSE,, says THEM AT EFA. Oh REALLY ? Everyone’s brain is different, not all brains are alike, is what I ALWAYS HEAR,, but when maybe 20 people get into a group & there are say 19 of them can see how EACH ONE ARE SO MUCH ALIKE,, then you say a few words about some odd things that THEY CAN NOT RELATE MUCH WITH,, & they say,,, ”’well your are different”’ that makes you wished & feel like you are suddenly NOT ONE OF THEM as they reject you instantly. That is like saying to some people who have HEART ATTACKS. I would never say that ANY HEART HEALTH GROUPS would reject 1 person out of 20 where all are prone to have a HEART ATTACK & 1 of them get rejected from a group & the other 19 live on happy & jolly until their next meeting & the see each other 2 months later without seeing that 1 of the 20 who was there before & wondered what happened, but at the EFA meeting NOBODY ever called on me to ask WHY I never returned back to any of their meetings. Sadly THAT’S HOW IT WOULD BE if I tried to connect to a famous person again as I did last time around 20 years ago. IT’S A JOKE to think there are a few more people outside you own family who actually believes they CARE FOR YOU. when they can never understand what you can have happen to you, can easily happen to them THE SAME WAYS, in many ways in how ALL brain chemistry WILL BE effected in a period of time, while that period of time may be in weeks, months, seasons, or years later in life.All I mean to say if LIFE CAN CHANGE IN A SPLIT SECOND, If you are not worried about being prepared for it, the you should not be surprised when it happens. I asked those questions back when I was around 8, & kept asking when I was 10,13,16 & 20, & NOBODY SEEMED TO CARE TO LISTEN TO MY QUESTIONS THEN. Now that I know more & never ALL THAT IO NEED TO KNOW, people still think I am brain dead, and THEY are the more intelligent walking on the face of this earth. Oh well more college for them will never help if they can not use Common Sense to first start LISTENING TO OTHERS, who may know a little more than they do, especially if THEY HAVE NEVER LIVED IT having seizures in their life. So clean out all WAX in the ears & get in the habit of listening to YOUR BRAIN FIRST, before ignoring what others may be saying that might relate to your brain, which you find hard to listen to, after a meal loaded & saturated with MSG & other toxins in that meal. Remeber too that ALL foods from the microwaves may make your brain get fired up & seize sooner than later.

So WHO from any walk of life relates to ”’some or all”’ here that I have mentioned ? One thing I do know, WE ALL ”or most will” EAT for the most part 3 meals a day. Neurologists & BIG PHARMA know that too.

LikeLike

Comment by James Davis — April 9, 2020 @ 3:36 PM

Reply
- I think you’re generalizing and being a bit harsh.
  
  LikeLiked by 1 person
  
  Comment by Phylis Feiner Johnson — April 9, 2020 @ 4:23 PM
  
  Reply
  - Nooooooooooo I call it ”reality”. Of course when you are called out by phone or face to face & hear the words,, “”WELL YOU ARE DIFFERENT FROM MOST WHO HAVE SEIZURES””. So wait !! ? I ask anyone who says that to me,, Aren’t we all suppose to be INCLUDED, and ACCEPTED by anyone who is to GIVE SUPPORT to anyone who lives with Epilepsy ? Their answers suddenly goes UNEXPLAINED & you hear ”babble & excuses” because there is NO PROOF of how I realize my seizures can happen, so I am just cast aside from everyone else, like I am nothing to them except a thrown away piece of toilet paper. << THAT is their attitude towards me from EVERY SEIZURE ADVOCATE GROUP OR PERSON ON THIS EARTH. & until I get excepted, then many younger & middle age people with seizures who have the same or similar conditions as I have are being rejected as well, because I AM NOT the only person who's seizures are triggered by NITRATES< NITRITES, ASPARTAME's & MSG's. So people who ignores this & HAVE seizures, take the AED's with METALS, MSG'S ASPARTAME'S ALUMINUM LAKE which is ALL VIMPAT except for 100mg tablet form. Maybe I should had not mentioned that, but I will not take it if the tablet changes. Go for ONFI, KEPPRA, PARAMPANEL, FYCOMPA, ONFI, ZONEGRAN & the CBD AED that the name I can not think of right now. At least God is always at my side.
    
    LikeLike
    
    Comment by James D — June 3, 2020 @ 2:30 PM
- It’s called “learning how to humble yourself without being cruel or “humiliating or degrading another person for what they have and who they are”, and willing to be open enough to always want to learn more and help more with your own life experience”. Not everyone is of the same mindset and beliefs as other. When a person (any person) is made to feel “less than” or even “foolish” or “uneducated” then why would they even want to listen to anyone else? On the other hand what if “ANY FOOD OF ANY SORT” is ALL A PERSON COULD AFFORD to eat? Especially after paying for the medications we have to take just to be able to even be alive and well. Not everyone can afford the food that has no “MSG’s” and if they could once their told “they can’t have MSG’S TRUST ME THEIR GOING TO WANT ONLY MSG’S!! Thank you for you compassion
  
  LikeLiked by 1 person
  
  Comment by Kathy S.B — April 19, 2020 @ 7:40 PM
  
  Reply
???

Get Outlook for Android

________________________________

LikeLike

Comment by Janet Deardorff — April 9, 2020 @ 8:52 PM

Reply
It’s impressive to note that Hollywood is producing caring heroes just like great films & actors.
Thanks to the inspiring gallant heroes lending their voice, speaking out in support of the voiceless victims of Epilepsy, helplessly trapped in the centuries old ancient neurological disorder & medical struggle to gain normalcy in their lives, it’s great to know & uplifting to see the light across the tunnel in a world of total void & deprivation to cure Epilepsy since eternity.
If we only had the same caring heroic souls in the very hierarchy that claims to represent, serve & protect the wellbeing of human kind, we could possibly had found alternative options to cure for the millenniums old ancient neurological disorder Epilepsy, by now.
It’s comforting to know the support of these courageous selfless gallant heroes, will come to benefit many people in need of moral & material support to continue with their lives under the shadows of Epilepsy.
Hopefully, these inspiring heroes are leading the way to make this world a better place to live for ALL the peoples who has been trapped in medical hardships.
Cheers to the gallant heroes!
Gerrie

LikeLiked by 2 people

Comment by BahreNegash Eritrea — April 10, 2020 @ 12:21 PM

Reply
- Yes, I believe it is these selfless people who will step up long before the government cares.
  
  I think there’s a difference though. Most of these celebrities either have epilepsy or a loved one with epilepsy.
  
  And the only one who was able to help was Tony Coelho, who authored the Americans with Disabilities Act (ADA) during his time in the House of Representatives. This legislation provides people with disabilities equal access to employment, public facilities, and transportation and makes it possible for them to become a full participating member of society.
  
  As far as man in a powerful position (with epilepsy), he’s the ONLY ONE who has been able to push through legislation and he is a real hero.
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — April 10, 2020 @ 12:37 PM
  
  Reply
  - While you may say the subject is totally different & unrelated to Epilepsy but watching the global panic over corona virus flue (COVID19) & the search for remedy of the novel pandemic totally driving the whole world into total hysteria, I would like to think one does NOT need to be inflicted with corona virus or epilepsy to help find support & remedy to cure for the pandemic or Epilepsy.
    Therefore, it’s the passion for doing something right & worthy for the good of ALL of human race that makes these selfless heroes stand out from the rest of the whole world who chose to suffer in denial, deprivation, silence & total isolation.
    Therefore, these gallant heroes deserve Nobel Prizes for their passionate drive to make this world a better place to live for the victims of epilepsy, ignored to suffer in silence since eternity.
    I admire & respect their committment to speak out for the good of millions of voiceless people silenced by the neurological disorder, social, indifference & medical negligence.
    Salute to the gallant heroes!
    Gerrie
    
    LikeLiked by 2 people
    
    Comment by BahreNegash Eritrea — April 10, 2020 @ 6:41 PM
  - I agree. If I could or if I had an opportunity to give those hero’s a statue, a hug or simply a “THANK YOU FOR LOVING LIFE AS IT IS WITHOUT BOARDERS OR DOLLARS AND FOR SIMPLY HUMAN COMPASSION AND CARING” I WILL AND DO ALWAYS MAKE SURE TO THANK THEM!!!!!!! Especially when their simply DOING THE BEST THEY CAN WITG WHAT THEY HAVE AND WHAT THEY’VE BEEN TAUGHT!!!!! I personally have again been on both sides of the fence in more ways than one!! And I have to admit “THANK YOU WAS ALL I CAN GIVE AND NEEDED!!”. ❤️🦅❤️
    
    LikeLiked by 1 person
    
    Comment by Kathy S.B — April 19, 2020 @ 7:51 PM
I’ve always had high hopes for Susan Axelrod and CURE .I’ve not lost hope, but science is simply moving too slowly in the realm of epilepsy research and new meds. I also had high hopes for Kurt Eichenwald who wrote a fantastic book about his experiences with epilepsy and working as an author and journalist with the New York Times. Gosh, I somehow thought people of that caliber could do something! lol

LikeLiked by 1 person

Comment by skolly9 — April 10, 2020 @ 5:07 PM

Reply
I wrote to Susan Axelrod saying I would walk to Chicago on my knees just to help her. But I never got a response.

I fear it want into her Junk mail or Spam.

Kurt Eichenwald is a riveting speaker and I had the pleasure of meeting him in person and getting a signed edition of his book “A Mind Unraveled.” I highly recommend it.

I bought three copies. One for our local Epilepsy Foundation library, one for myself and one extra.

If you’d like, Skolly, I could send you the third copy (as long as you don’t mind the inscription “To Phylis….etc.)

Just email your address to me: pfj@pfjohnson.com and I’ll send it on to you.

LikeLike

Comment by Phylis Feiner Johnson — April 10, 2020 @ 5:22 PM

Reply
wonderful, thanks, Phylis! He’s really an incredible man.

LikeLiked by 1 person

Comment by skolly9 — April 10, 2020 @ 6:03 PM

Reply
Hello to all
In this difficult time, I love you all
Esteem your relations and friends

LikeLiked by 1 person

Comment by Amarabusly — April 10, 2020 @ 8:32 PM

Reply
- We could start a mutual admiration society this way. 🙂
  
  Love and Easter blessings to you, Amarabusly.
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — April 10, 2020 @ 10:22 PM
  
  Reply
I had a close family member who actually became friends with lots of “influential people”. Even that family member was one. I remember someone saying to me one time “WOW YOUR RELATED TO THAT PERSON?!” Honestly at that moment I looked at that person and said to that person “Ya. Unfortunately I am. However please remember every famous or important person is still human and feels just like us, breaths like us, bleeds like us, and everything like us!! We are celebrities in our own way, shape and form. It’s up to others to see that for themselves, but ya I am related to that person”. Then left as they were all trying to get to that person!! The funny part was as they all seen someone else “MORE INFLUENTIAL” everyone shifted to that person and that person was trying to get to me!! Lol I KEPT WALKING AWAY! As long as we all keep trying the ones who matter will always be the real celebrities 😊🦅💗. Thank you Phylis and EVERYONE IN YOUR GROUP!

LikeLiked by 1 person

Comment by Kathy S.B — April 19, 2020 @ 8:03 PM

Reply
- I love what you said, Kathy: “the ones who matter will always be the real celebrities”.
  
  So true and so poignant.
  
  LikeLiked by 1 person
  
  Comment by Phylis Feiner Johnson — April 19, 2020 @ 10:34 PM
  
  Reply
  - Thank you and it’s SO VERY TRUE!! 😘
    
    LikeLiked by 1 person
    
    Comment by Kathy S.B — April 19, 2020 @ 10:45 PM
FYI: I do actually watch/listen to the “LET’S TALK” podcast and I really enjoy it, but I also read “Epilepsy Talk” and I REALLY APPRECIATE IT EVEN MORE!!!!!!! Because even though I may not see Phylis or all of you I DO GREATLY APPRECIATE ALL OF YOU MORE!!!!!!! 😊. It feels MORE REAL AND MORE FAMILY for me anyways 😊🙏🏼🦅😇😘

LikeLiked by 1 person

Comment by Kathy S.B — April 19, 2020 @ 8:14 PM

Reply
We ARE family!

LikeLiked by 1 person

Comment by Phylis Feiner Johnson — April 19, 2020 @ 10:35 PM

Reply
YES WE ARE!! 😊🦅💗😘

LikeLiked by 1 person

Comment by Kathy S.B — April 19, 2020 @ 10:43 PM

Reply
I didn’t know this information. This is real, real cool. I’m glad that they are helping out. It has done me a lot of good. My seizures are under control now. It took 59 & 1/2 years, to finally get my seizures under control.

LikeLiked by 1 person

Comment by Dondi Carol Bailey — June 3, 2020 @ 10:54 AM

Reply
- 59 1/2 years is a long slog. But congratulations!!!
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — June 3, 2020 @ 10:56 AM
  
  Reply
Thank you so very much for the support. Very much needed by so many people around the World. I am the Founder and Administrator of Epilepsy Awareness Worldwide. Means A LOT to all of us battling the stigma and our Epilepsy Condition. 💜💜💞💞

LikeLiked by 1 person

Comment by Stephen Leuenberger — June 3, 2020 @ 3:05 PM

Reply
- It means A LOT to me that you wrote in with the compliment. You made my day!
  
  LikeLike
  
  Comment by Phylis Feiner Johnson — June 3, 2020 @ 4:30 PM
  
  Reply
A special Thank you to everyone who supports epilepsy awareness It is much appreciated by all of us that wholeheartedly put our hearts and souls into it Spreading the word is Awesome!!!

LikeLiked by 1 person

Comment by Barbie Ligibel — December 19, 2022 @ 12:12 AM

Reply

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Phylis, this is an impressive list of talented and generous people! Do you suppose that we could find some of them who would be interested in a talent show? I’m thinking, once or twice a year…for epilepsy. The talent would be, of course, the stars viewers are expecting to see…and people who happen to have epilepsy! Some could even be stars who happen to have epilepsy, as well. If it raises money for research and assistance for whomever needs a hand up, that would be great! But if it shows that epilepsy isn’t a boogeyman coming to steal souls in the middle of a dark, moonless night, even better.

LikeLiked by 1 person

Comment by catsissie — April 9, 2020 @ 1:52 PM

That’s a brilliant idea. But I already tried to contact Neil Young — who has epilepsy and is a generous contributor — and couldn’t even get past his agent.

Plus, his website said he wasn’t touring this year. So, I don’t know what’s up. 😦

LikeLike

Comment by Phylis Feiner Johnson — April 9, 2020 @ 2:07 PM

- I wonder if a “CANADIAN” would be able to get ahold of him?
  
  LikeLiked by 1 person
  
  Comment by Kathy S.B — April 19, 2020 @ 7:21 PM
- Good question. But I do know (I think for personal reasons), he’s not available at all this year. 😦
  
  LikeLiked by 1 person
  
  Comment by Phylis Feiner Johnson — April 19, 2020 @ 10:37 PM

Over the past several decades, I had tried to connect with a few of those who had made it in the public eye & how everyone idolizes those who have a name & status attached to it as if seizures were nothing to them in their career. Be it as it is, the epilepsy advocate groups that they are connected with, are all the same mind thought, to where if you are just at the least different from an average person who lives with seizures & does everything by THEIR BOOK in the HOW TO COPE living with seizures & alike, and if you do all that they suggest, then you are then 1 of them. But if you say what your experiences have been for 30+ years, now over 59, you are never going to be able to connect with them especially if you are to them A LOSER because they HAVE MADE IT, & while they had everything to work out fine for them, for the most part, then all you may be doing is crying the blues since you are of a drag to the rest of those who made it living with seizures. I KNOW THAT IS TRUE as the advocate worlds who claim they work for US, is never interested in you as I learned that again 3 to 4 months ago taking to a VERY INTELLIGENT REN researcher at the EFA, who was very concern of all I knew about Epilepsy & all the triggers that I KNOW for over 55 years has effected my brain & I know it can harm other brains in the same ways, to maybe 1 more person on earth & that person maybe is YOU. So that did not matter to this REN seizure researcher, who has NO COMPASSION for me or anyone living a life of HELL after you understand those things that you have known for over 55 years has effected you, and that COULD NEVER EVER HAPPEN TO ANYONE ELSE,, says THEM AT EFA. Oh REALLY ? Everyone’s brain is different, not all brains are alike, is what I ALWAYS HEAR,, but when maybe 20 people get into a group & there are say 19 of them can see how EACH ONE ARE SO MUCH ALIKE,, then you say a few words about some odd things that THEY CAN NOT RELATE MUCH WITH,, & they say,,, ”’well your are different”’ that makes you wished & feel like you are suddenly NOT ONE OF THEM as they reject you instantly. That is like saying to some people who have HEART ATTACKS. I would never say that ANY HEART HEALTH GROUPS would reject 1 person out of 20 where all are prone to have a HEART ATTACK & 1 of them get rejected from a group & the other 19 live on happy & jolly until their next meeting & the see each other 2 months later without seeing that 1 of the 20 who was there before & wondered what happened, but at the EFA meeting NOBODY ever called on me to ask WHY I never returned back to any of their meetings. Sadly THAT’S HOW IT WOULD BE if I tried to connect to a famous person again as I did last time around 20 years ago. IT’S A JOKE to think there are a few more people outside you own family who actually believes they CARE FOR YOU. when they can never understand what you can have happen to you, can easily happen to them THE SAME WAYS, in many ways in how ALL brain chemistry WILL BE effected in a period of time, while that period of time may be in weeks, months, seasons, or years later in life.All I mean to say if LIFE CAN CHANGE IN A SPLIT SECOND, If you are not worried about being prepared for it, the you should not be surprised when it happens. I asked those questions back when I was around 8, & kept asking when I was 10,13,16 & 20, & NOBODY SEEMED TO CARE TO LISTEN TO MY QUESTIONS THEN. Now that I know more & never ALL THAT IO NEED TO KNOW, people still think I am brain dead, and THEY are the more intelligent walking on the face of this earth. Oh well more college for them will never help if they can not use Common Sense to first start LISTENING TO OTHERS, who may know a little more than they do, especially if THEY HAVE NEVER LIVED IT having seizures in their life. So clean out all WAX in the ears & get in the habit of listening to YOUR BRAIN FIRST, before ignoring what others may be saying that might relate to your brain, which you find hard to listen to, after a meal loaded & saturated with MSG & other toxins in that meal. Remeber too that ALL foods from the microwaves may make your brain get fired up & seize sooner than later.

So WHO from any walk of life relates to ”’some or all”’ here that I have mentioned ? One thing I do know, WE ALL ”or most will” EAT for the most part 3 meals a day. Neurologists & BIG PHARMA know that too.

LikeLike

Comment by James Davis — April 9, 2020 @ 3:36 PM

I think you’re generalizing and being a bit harsh.

LikeLiked by 1 person

Comment by Phylis Feiner Johnson — April 9, 2020 @ 4:23 PM

- Nooooooooooo I call it ”reality”. Of course when you are called out by phone or face to face & hear the words,, “”WELL YOU ARE DIFFERENT FROM MOST WHO HAVE SEIZURES””. So wait !! ? I ask anyone who says that to me,, Aren’t we all suppose to be INCLUDED, and ACCEPTED by anyone who is to GIVE SUPPORT to anyone who lives with Epilepsy ? Their answers suddenly goes UNEXPLAINED & you hear ”babble & excuses” because there is NO PROOF of how I realize my seizures can happen, so I am just cast aside from everyone else, like I am nothing to them except a thrown away piece of toilet paper. << THAT is their attitude towards me from EVERY SEIZURE ADVOCATE GROUP OR PERSON ON THIS EARTH. & until I get excepted, then many younger & middle age people with seizures who have the same or similar conditions as I have are being rejected as well, because I AM NOT the only person who's seizures are triggered by NITRATES< NITRITES, ASPARTAME's & MSG's. So people who ignores this & HAVE seizures, take the AED's with METALS, MSG'S ASPARTAME'S ALUMINUM LAKE which is ALL VIMPAT except for 100mg tablet form. Maybe I should had not mentioned that, but I will not take it if the tablet changes. Go for ONFI, KEPPRA, PARAMPANEL, FYCOMPA, ONFI, ZONEGRAN & the CBD AED that the name I can not think of right now. At least God is always at my side.
  
  LikeLike
  
  Comment by James D — June 3, 2020 @ 2:30 PM
It’s called “learning how to humble yourself without being cruel or “humiliating or degrading another person for what they have and who they are”, and willing to be open enough to always want to learn more and help more with your own life experience”. Not everyone is of the same mindset and beliefs as other. When a person (any person) is made to feel “less than” or even “foolish” or “uneducated” then why would they even want to listen to anyone else? On the other hand what if “ANY FOOD OF ANY SORT” is ALL A PERSON COULD AFFORD to eat? Especially after paying for the medications we have to take just to be able to even be alive and well. Not everyone can afford the food that has no “MSG’s” and if they could once their told “they can’t have MSG’S TRUST ME THEIR GOING TO WANT ONLY MSG’S!! Thank you for you compassion

LikeLiked by 1 person

Comment by Kathy S.B — April 19, 2020 @ 7:40 PM

???

Get Outlook for Android

________________________________

Comment by Janet Deardorff — April 9, 2020 @ 8:52 PM

It’s impressive to note that Hollywood is producing caring heroes just like great films & actors.
Thanks to the inspiring gallant heroes lending their voice, speaking out in support of the voiceless victims of Epilepsy, helplessly trapped in the centuries old ancient neurological disorder & medical struggle to gain normalcy in their lives, it’s great to know & uplifting to see the light across the tunnel in a world of total void & deprivation to cure Epilepsy since eternity.
If we only had the same caring heroic souls in the very hierarchy that claims to represent, serve & protect the wellbeing of human kind, we could possibly had found alternative options to cure for the millenniums old ancient neurological disorder Epilepsy, by now.
It’s comforting to know the support of these courageous selfless gallant heroes, will come to benefit many people in need of moral & material support to continue with their lives under the shadows of Epilepsy.
Hopefully, these inspiring heroes are leading the way to make this world a better place to live for ALL the peoples who has been trapped in medical hardships.
Cheers to the gallant heroes!
Gerrie

LikeLiked by 2 people

Comment by BahreNegash Eritrea — April 10, 2020 @ 12:21 PM

Yes, I believe it is these selfless people who will step up long before the government cares.

I think there’s a difference though. Most of these celebrities either have epilepsy or a loved one with epilepsy.

And the only one who was able to help was Tony Coelho, who authored the Americans with Disabilities Act (ADA) during his time in the House of Representatives. This legislation provides people with disabilities equal access to employment, public facilities, and transportation and makes it possible for them to become a full participating member of society.

As far as man in a powerful position (with epilepsy), he’s the ONLY ONE who has been able to push through legislation and he is a real hero.

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Comment by Phylis Feiner Johnson — April 10, 2020 @ 12:37 PM

- While you may say the subject is totally different & unrelated to Epilepsy but watching the global panic over corona virus flue (COVID19) & the search for remedy of the novel pandemic totally driving the whole world into total hysteria, I would like to think one does NOT need to be inflicted with corona virus or epilepsy to help find support & remedy to cure for the pandemic or Epilepsy.
  Therefore, it’s the passion for doing something right & worthy for the good of ALL of human race that makes these selfless heroes stand out from the rest of the whole world who chose to suffer in denial, deprivation, silence & total isolation.
  Therefore, these gallant heroes deserve Nobel Prizes for their passionate drive to make this world a better place to live for the victims of epilepsy, ignored to suffer in silence since eternity.
  I admire & respect their committment to speak out for the good of millions of voiceless people silenced by the neurological disorder, social, indifference & medical negligence.
  Salute to the gallant heroes!
  Gerrie
  
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  Comment by BahreNegash Eritrea — April 10, 2020 @ 6:41 PM
- I agree. If I could or if I had an opportunity to give those hero’s a statue, a hug or simply a “THANK YOU FOR LOVING LIFE AS IT IS WITHOUT BOARDERS OR DOLLARS AND FOR SIMPLY HUMAN COMPASSION AND CARING” I WILL AND DO ALWAYS MAKE SURE TO THANK THEM!!!!!!! Especially when their simply DOING THE BEST THEY CAN WITG WHAT THEY HAVE AND WHAT THEY’VE BEEN TAUGHT!!!!! I personally have again been on both sides of the fence in more ways than one!! And I have to admit “THANK YOU WAS ALL I CAN GIVE AND NEEDED!!”. ❤️🦅❤️
  
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  Comment by Kathy S.B — April 19, 2020 @ 7:51 PM

I’ve always had high hopes for Susan Axelrod and CURE .I’ve not lost hope, but science is simply moving too slowly in the realm of epilepsy research and new meds. I also had high hopes for Kurt Eichenwald who wrote a fantastic book about his experiences with epilepsy and working as an author and journalist with the New York Times. Gosh, I somehow thought people of that caliber could do something! lol

Comment by skolly9 — April 10, 2020 @ 5:07 PM

I wrote to Susan Axelrod saying I would walk to Chicago on my knees just to help her. But I never got a response.

I fear it want into her Junk mail or Spam.

Kurt Eichenwald is a riveting speaker and I had the pleasure of meeting him in person and getting a signed edition of his book “A Mind Unraveled.” I highly recommend it.

I bought three copies. One for our local Epilepsy Foundation library, one for myself and one extra.

If you’d like, Skolly, I could send you the third copy (as long as you don’t mind the inscription “To Phylis….etc.)

Just email your address to me: pfj@pfjohnson.com and I’ll send it on to you.

Comment by Phylis Feiner Johnson — April 10, 2020 @ 5:22 PM

wonderful, thanks, Phylis! He’s really an incredible man.

Comment by skolly9 — April 10, 2020 @ 6:03 PM

Hello to all
In this difficult time, I love you all
Esteem your relations and friends

Comment by Amarabusly — April 10, 2020 @ 8:32 PM

We could start a mutual admiration society this way. 🙂

Love and Easter blessings to you, Amarabusly.

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Comment by Phylis Feiner Johnson — April 10, 2020 @ 10:22 PM

I had a close family member who actually became friends with lots of “influential people”. Even that family member was one. I remember someone saying to me one time “WOW YOUR RELATED TO THAT PERSON?!” Honestly at that moment I looked at that person and said to that person “Ya. Unfortunately I am. However please remember every famous or important person is still human and feels just like us, breaths like us, bleeds like us, and everything like us!! We are celebrities in our own way, shape and form. It’s up to others to see that for themselves, but ya I am related to that person”. Then left as they were all trying to get to that person!! The funny part was as they all seen someone else “MORE INFLUENTIAL” everyone shifted to that person and that person was trying to get to me!! Lol I KEPT WALKING AWAY! As long as we all keep trying the ones who matter will always be the real celebrities 😊🦅💗. Thank you Phylis and EVERYONE IN YOUR GROUP!

Comment by Kathy S.B — April 19, 2020 @ 8:03 PM

I love what you said, Kathy: “the ones who matter will always be the real celebrities”.

So true and so poignant.

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Comment by Phylis Feiner Johnson — April 19, 2020 @ 10:34 PM

- Thank you and it’s SO VERY TRUE!! 😘
  
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  Comment by Kathy S.B — April 19, 2020 @ 10:45 PM

FYI: I do actually watch/listen to the “LET’S TALK” podcast and I really enjoy it, but I also read “Epilepsy Talk” and I REALLY APPRECIATE IT EVEN MORE!!!!!!! Because even though I may not see Phylis or all of you I DO GREATLY APPRECIATE ALL OF YOU MORE!!!!!!! 😊. It feels MORE REAL AND MORE FAMILY for me anyways 😊🙏🏼🦅😇😘

Comment by Kathy S.B — April 19, 2020 @ 8:14 PM

We ARE family!

Comment by Phylis Feiner Johnson — April 19, 2020 @ 10:35 PM

YES WE ARE!! 😊🦅💗😘

Comment by Kathy S.B — April 19, 2020 @ 10:43 PM

I didn’t know this information. This is real, real cool. I’m glad that they are helping out. It has done me a lot of good. My seizures are under control now. It took 59 & 1/2 years, to finally get my seizures under control.

Comment by Dondi Carol Bailey — June 3, 2020 @ 10:54 AM

59 1/2 years is a long slog. But congratulations!!!

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Comment by Phylis Feiner Johnson — June 3, 2020 @ 10:56 AM

Thank you so very much for the support. Very much needed by so many people around the World. I am the Founder and Administrator of Epilepsy Awareness Worldwide. Means A LOT to all of us battling the stigma and our Epilepsy Condition. 💜💜💞💞

Comment by Stephen Leuenberger — June 3, 2020 @ 3:05 PM

It means A LOT to me that you wrote in with the compliment. You made my day!

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Comment by Phylis Feiner Johnson — June 3, 2020 @ 4:30 PM

A special Thank you to everyone who supports epilepsy awareness It is much appreciated by all of us that wholeheartedly put our hearts and souls into it Spreading the word is Awesome!!!

Comment by Barbie Ligibel — December 19, 2022 @ 12:12 AM

Epilepsy Talk