Update Video (16/05/24)
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- Опубликовано: 12 окт 2024
- I suffer with temporal lobe epilepsy and I’m just putting them up as some support and awareness 💜💜
Any questions just leave them in the comments and I’ll get to them in the next update video. Can’t thank you all enough for the support it means the world 💜💜
#epilepsy #seizures #mentalhealthmatters
I also make music let me know what you think 🙂💯🔊
/ @dj.shawzzz
Alfie.. we admire you for making this update video..
We know from our own devastating experience how hard it is to do anything when you are besieged with the fear ..
The horrible fear that goes with the anxiety you feel..
We who share these feelings with you totally understand..
We want you to know how much we appreciate you talking to us so honestly.. and so bravely.. even though we can clearly see how it hurts you to do so,, Dear Lord.. watching you cope best you can.. we feel so proud of you.. and so thankful for you..
We wish we could hold you.. and hug you.. and tell you everything will be OK.. how we wish we could!!!
Some day all this pain and fear will go away.. that is what ALL of us who know this fear pray for..
You are such a fighter.. such a strong and beautiful lad.. you are not one to quit or give up.. you give us hope.. just seeing you in these updates..
We see your heartbreaking seizure videos.. and seeing you after in these updates gives us hope..
For all you have done.. for all you continue to do.. we thank you Alfie..
In your darkest and saddest moments.. when you courageously face that fear we all do..
Please remember you are not alone.. we are here too..
Thank you for giving us the courage and the strength to keep going.. by providing us the beautiful example of yourself doing that..
You help more than you may ever know Alfie.. just by being.. you..
We love you with all our hearts 💜💙🤗
Recently diagnosed myself last winter after a proper scare that i thought i grew out of from childhood and its been a fucking nightmare. Nearly lost me teeth hitting the deck last week from a seizure. Keep it going boss, we all can do it! Good man alfie !
Drop a lot of comments on your update videos.. here is why…….
A sweet guy as brave as you are.. who makes a channel to help others in the fight against epilepsy deserves to be thanked…
A caring young man who puts videos of himself suffering the agony of epilepsy out there for everyone to see .. has earned respect…
A considerate lad who ranks the needs of others before his own deserves appreciation..
Thanks.. respect.. appreciation.. this is the bare minimum for an incredible lad who does all this is entitled to..
Yet.. Alfie .. you do all of these things and ask only that people educate themselves about epilepsy.. and learn how to support each other.. and help each other survive.. so no one feels lost and scared and alone..
Over and over.. you state your purpose is to ensure no one has to go thru this agony alone..
The fear of being alone in dealing with this horrible disease is something we all face.. and thanks to you.. we have somewhere to go.. and someone willing to listen to our stories.. answer our questions.. to be a friend to help us navigate the troubling and fearful sea we all must guide our boat thru..
And there are you Alfie.. in that same boat.. making us all feel better.. because you are there ..
Thank you, Alfie.. we pray for you.. we send you hugs and hope.. we offer you our support.. and our love.. forever💜💙xxx
as a fellow epileptic this channel gives me a sort of comfort and security, dont stop posting these updates and all ur videos, love you so much alfie hope u could find a way to be seizure free soon and i also hope u are able to get ur anxiety under control too, wish u all the best and healing💜💜💜
Nice to hear from you. Your story moves me a lot. I like you just being you, all open and honest. It is of value to me. Just love you mate. Take care ❤😊
Your courage and your strength to make these videos is commendable… getting before a camera.. and talking about the most frightening thing that has ever happened to you is way beyond difficult to do..
Watching you.. we can see your anguish as you struggle with talking about the relentless auras that you are suffering..
Epilepsy is devastating.. and like you say.. demoralizing and depressing.. and the aloneness is crushing..
Seeing you there breaks our hearts.. because.. like many who watch and comment.. either we have been there ourselves.. or we care for and love someone dear to us who is..
These videos you make are more valuable to us than we have words to express properly.. we know just how. much this costs you to do these..
Means the world to see you in these update videos, Alfie.. just to see you there.. alive and continuing to fight..
You not only share your own experience and your understanding with us.. you also share your own courage and strength.. especially for those who are going thru this horrible situation for the first time..
When you talk about that you thought you were going die when you had the aura that first time.. right there by doing that.. you helped someone.. fear is horrible.. and when you know someone else went thru this and felt that way.. and lived to tell about it.. means so much.. we cannot find the words..
Thank you ever so much for making these videos.. people talk about caring.. they talk about unconditional love.. they talk about wanting to help others..
You do more than talk about it, Alfie.. you do it.. every time you share a seizure video.. each time you make an update video..
Most of all.. by making this channel.. you are doing more for us than you may know.. just by being here with us..
Thank you seems way too little to say to a wonderful guy who cares so much..
Even so.. we thank you Alfie.. we send to you our prayers and our hugs.. we send you our hope that you may find relief from your own suffering.. and we send you our love..
You have more than earned a forever place in all our hearts Alfie.. and we just want you to know.. and to remember that.. 💜💙🕊️
Alfie.. so good to see you.. we are so sorry for all you go thru each day.. and we believe in you.. we know you are doing your best..
Please remember we are here for you.. we love you.. we understand how hard this is to do..
We are so proud of your efforts to keep going on .. no matter
how hard it gets.. you fight against a brutal disease.. and you fight hard.. with all your courage and strength..
This update means the world.. we wish we could be there to hug you.. to tell you how much we care.. to be right there so you are not alone..
We love you like a dear son.. we pray for you each day.. we hold you in our hearts.. we love you, Alfie..💜
Seeing your update today shows how much you care.. we are here to support you in your journey.. we want the best that can be for you..
Alfie.. you are in our life now.. and sure we are there are so many others who care about you just as we do..
Please hold on, sweet lad.. please fight on.. we cannot imagine this world without you in it..
You matter to us Alfie.. more than we have words to say.. as music is your life Alfie.. we have made you ours..
Please remember that.. you are never going to be alone Alfie.. we.. ALL of us who love you.. we are here.. for you💜💙🤗🙏🕊️
I wanted to thank you for sharing this vulnerable part of this story. 💜 Far too many people are blissfully unaware of epilepsy.
These videos are so educational for people , don't stop posting .The realities of epilepsy need to be seen . As a fellow sufferer if these videos help one person they are so worth it . I pray that you find a medication regime that brings you good seizure control .❤
We understand how hard it is to keep going.. we’ve been thru this ourselves..
You are strong, Alfie.. giving up is not an option..
You are a brave warrior.. keep fighting!!
There is always a bit of light in the darkness.. you can find it..
You are not alone.. and you are loved..
Remember that..💜💙
Just read a comment berating the negative comments you get.. we have been subscribed for a while and we have not seen too many really bad comments..
Yes.. there are a few nasty grams.. what you would expect.. as some people get a dopamine rush by hurting someone else with their words.. these are best ignored.. as you do..
Most of the comments we see are pretty much genuine requests for help.. or people sharing their stories.. or those who offer encouragement or advice..
We always feel very comfortable on this channel.. because most comments are positive and very much try to make you feel respected.. looked up to.. and loved..
In our opinion.. these people care about you Alfie.. they want to see you get better and find meds that help you do so..
There are only a few bad apples and you deal with them well..
We love seeing all the nice comments you get.. most of those on this channel really appreciate you and your efforts to help others in the same boat.. us included..
This channel was made by you to offer education, understanding and support for those with epilepsy and those who love and care for them.. you do an excellent job with it.. and we are grateful..
There are many kind people who care out there.. and many of them comment on your channel., because you and your well-being matter to them.. again, us included..
Thank you for all you do.. and most important.. for who you are.. a kind and courageous young man.. doing his best to help others with epilepsy.. so that no one will have to go thru this alone.. we offer you respect.. hope.. prayers.. and love, Alfie.. along with our support💜💙
Here for you brother I am praying for you Always. Your awesome brother and enduring. Love ya as a friend and brother. Stay encouraged bro . Don't give up Alfie hugs to you brother. Bro the" unorganized videoes" are genuine no need to apologize.
You once said in another update video.. that an aura is fighting for your own consciousness.. we think that is the best definition..
And your videos on auras prove this to be true..
You fight so hard to hang on.. to fight off another seizure from coming on best you can..
Auras before his awful nocturnal seizures completely terrified my sweet husband.. he wanted me to hold both his hands and talk to him.. said this helped him focus,. helped him fight ..
Sometimes we lost.. even so .. many times we won.. any time you win with epilepsy is a good thing..
You and many people commenting mention the fear.. my William was so scared he cried.. not just a little.. he sobbed .. like wee babies do, he would get hiccups from crying so hard..
When you love someone deeply.. you feel what they feel.. you fear what they fear., this horrible fear he had was so real to me it was palpable.. soon we were crying together..
William used to say that helped him so much.. knowing I was there.. that somehow I could share his pain.. so he could bear it..
This is how it was for us.. everyone is different.. all have a story to tell..
Sharing these stories with you.. someone you truly understands.. is more comforting than we have words to explain..
To help us not to feel alone is the greatest gift you can give us.. thank you Alfie💜💙🤗🙏
For Alfie… Just so you know…
Sitting here we are.. watching you do this update video..
You have done these before.. many times right after getting home from hospital..
Or still recovering from a horrific series of seizures..
Or after so unfairly being let go from a job..
Each time.. you bravely sit before us.. in your gentle honest way.. you tell how your life is.. how you are getting on..
And here you are again.. apologizing for the disorganized video.. thanking us for our support.. again and yet again..
About half way thru your computer screen topples .. you say oops and smile and put it right.. and you go on..
At the end.. as always you do.. you hope everyone is ok.. and you will see us in the next update..
You hope a seizure won’t happen between.. Dear Lord.. we hope not too..
And you are gone.. and we are crying.. what a beautiful young man you are.. gentle and kind.. yet brave and strong.. 💜💜💜
Oh, Alfie.. who could not love you after watching that?! 💜💙🤗✨🕊️🙏🦋
… it is what it is… it’s been a bit disorganized.. it’s still a video..💜💜💜
Alfie.. your kind and gentle words are breaking our hearts💔😭🤗💜
God Bless you for making this honest.. so appreciated.. so beautiful video, Alfie..💜
We are the ones to be thanking you.. for your raw courage.. for your incredible strength.. for your determination to get this done.. even as your anxiety is shredding you from the inside out..🙏💜
No apology needed, dear lad.. we are thanking you.. for your gentle words.. for thanking us for our support over and over again..💜🙏
We support you because we respect you.. we believe in you.. we appreciate you.. we want to hug you.. sure wish we could, Alfie💜🤗
We feel safe and heard.. we feel understood.. most of all.. we do not feel so alone because of you…because of all you do for us to make this so 💜
Thank you for updating us so openly and so bravely this day.. 🙏💜
Always remember.. we love you Alfie.. we always will.. stay strong, dear lad .. please remember.. how so very much you matter, dear Alfie.. 💜
With all our hearts.. it is us who be thanking YOU💜💙🕊️
Alfie you have have right to post your seizures take no notice of rude people telling you shouldn't do this and that am sure it helps other people how have seizures keep it up Alfie form Kerrie 💜
Hey Alfie! It's a lot worth it to still apply for jobs that require a driver's license - you can always explain why you don't have one! You might not realise, but you're a good, eloquent speaker!!!
Love from Vancouver Canada 🇨🇦♥️
Aye, my sister is also suffering from seizures and your videos really help me with coping with her condition,, thank you.
Alfie.. you did a grand job making this video..
And the way you described the aura is perfect.. that is exactly what my husband felt..
And thinking you’re going to die.. he felt this way too., William’s greatest fear was dying alone in the dark.. 🖤
And that is another horrible fear for many of us.. being all alone..
So my sweet guy was terribly afraid of both.. when he said he was most afraid of dying alone in the dark..
That is why these updates are so important Alfie.. we can see you are alive and fighting hard as you can..💜
And you can know for sure you are not alone.. just like the stars we are.. cannot see them in day.. and clouds may cover at night..✨
Still.. they are there.. shining bright.. with all the love we have for you dear lad.. always there.. to shine light into the darkness..✨
When you see the stars Alfie.. remember that✨💜💙✨
Thank you so much 💜💯💜
@@alfiesepilepsychannel we need to be thanking you, Alfie.. few of us.. if any.. could do these updates as well as you do.. your courage and strength is so beautiful to see.. we send you our prayers and hugs.. we love you as a son.. always we have your back.. 💜💙🤗✨
I hope you’re doing okay Alfie
Alfie what a handsome young man with a heart of gold. Would your doctor know what hospital that only you could go to that only deals with epilepsy. I just saw a parapalegic young man they put a chip in I think his brain. Elon musk had something to do with his serious problem. I will pray for you. You are a special young man thanks for the great video. I knew a young guy with this. Yes it is horrible.
I haven't even listened to the whole video yet but I'm so irritated with some of the comments you're getting!! You shouldn't need to defend your or your moms actions to anyone. There are so many people who appreciate the fact that you out this out there! Just ignore those people who have nothing nice to say. Don't take it to heart Alfie. I'm so so grateful that you film and put it out there. I also recorded my daughter's seizures. For myself, the doctor and for her as well. It's a good thing to do. Because of the recording the doctor could medicate her before even doing tests. Keep doing what you doing and know there are more people who appreciate it than those who leave stupid comments. Please know you are also not alone and keep on keeping on. You got this!
No matter how bad it gets sometimes Alfie..
Please remember a couple things..
One.. you are strong and courageous.. doing your best to fight this..
Two.. we who love you will support you.. with our prayers and hope.. with our hugs.. with our love.. no matter what..
You matter to us, beautiful lad.. always know you are loved 💜💙🤗
I hope he recovers