Quick Update Video (20/11/23)
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- Опубликовано: 12 окт 2024
- Life’s been up and down lately, still having frequent seizures and depression and anxiety has been kicking me down but I’ve been making songs and remixes and music videos to take my mind off it. I know the video is a little unorganised again with the stuttering and thinking what to say but just wanted to upload to let everyone know I’m okay.
Next video I’m going to write questions from the comments down and answer them all on video so it’s a bit more organised.
If anyone is interested here’s the link to my music channel: / @dj.shawzzz
#epilepsy #seizures #mentalhealthmatters
You do not sound weird to us.. you speak with the courage and strength inside you.. what you do each day .. takes immense strength.. and courage is feeling scared .. but doing what you need or want to do anyway.. you are an inspiration to us out here.. that word inspiration means to breathe.. and all of us know just how hard that can be at times.. you inspire.. us.. to breathe.. and to keep on doing so .. and we are grateful.. thank you, Alfie..💜💙🤗
On this update you mentioned your music channel.. we subscribed there after seeing your seizure video before Christmas..
Wanted to thank you for allowing us to share your music.. has helped us immensely.. in ways we cannot describe with words..
Takes courage to fight epilepsy.. also takes strength.. both physical and mental..
Also takes perseverance.. and that’s where your music comes in.. music is your focus.. your life.. your driving force to keep you fighting..
For those who haven’t been there.. your music is phenomenal.. having listened for a long time.. we know how well organized it is.. you can find the genre of music you like easily.. we find it amazing to try what we know nothing about.. many favorites we have made that way..
Our top choices are the ones you make yourself.. in our opinion these are absolutely unmatched ..
We are trained in classical music.. have loved making music since before we could walk.. we truly understand what you mean by saying .. no music? No life!!!
We are your fans.. and your friends.. for life Alfie .. we have gotten to know you thru these beautiful updates you do.. and also come to love you same…
Stay strong, beautiful warrior.. keep fighting..cuz that is how this war will be won..
Thank you for all the music you have made… and for all that is yet to come.. we will be here to listen..
We love you, brave lad💜💙
You are so brave it breaks my heart to see you going through this ❤
Trying to find a med that works is hard.. basic trial and error..
Epilepsy is no walk in the park.. you are doing better than you think…
Like an aura.. everything else is different…
Coping strategies work.. keep making your music..
No one knows what something is like until they are in it…
Keep fighting, brave warrior.. attitude is everything…
Alfie.. you can do this💜💙xxx
Thanks so much for sharing your a great inspiration i am from Botswana in southern side of Africa. I was diagnosed with grandmall epilepsy as well from i was 17 died twice in my life one time a needle to my hart with adrenalin saved me and second time adrenalin and a electric shock in Africa we not often have close hospitals closesd to me was 120km away dr could not answer the question of why i am alive because the two of those seizures did not stop till my body gave up lucky im still here. Thank u for beaing such a beautiful and brave man all my love respect ill like to send you and those you love and that are by your side may all blessings come your way.
Thank you so much for your support always here if you want to talk about it sorry I was abit late replying I get alot of comments always here if you want to talk about it 🙏💜
Just read your comment.. the answer to why you are alive.. we believe.. is because of a miracle of God.. my husband suffered from a rare form of epilepsy called refractory nocturnal clonic tonic epilepsy since childhood.. complicated by severe diabetes that caused loss of his left leg at age 15.. both of these caused brittle bone disease in him.. twice they could not stop his seizures and he went into a coma like state.. once 5 days and again 3 days.. his lung collapsed and he coded.. both times they wrote him off.. telling us to make funeral prep.. both times he survived.. he took several months to recover.. but he was alive and to me that was what mattered.. always considered these miracles.. as the doctors could not figure out why .. William said it was because it was not his time.. that made sense to me..
Thank you for sharing your story.. so glad you survived.. Alfie’s channel is wonderful.. and meeting you on it is a very important reason why.. please stay safe🙏🏻💜💙
I’ve been having many minor and some major epilepsy-related issues recently. Including some seizures and many auras. So I was glad to see this video today as they definitely help me feel less alone in this harsh world ❤️✌️. And I’m defo gunna check out ur music at some point my g.
nice to see you back brothah😊.Sending you lots of positive thoughts and support🙌
Hello dear Alfi...was just on your music channel...that's not bad at all. I like it. I definitely hope that you find the right medication for you that will at least reduce your seizures. All love🥰
We cannot appreciate you enough Alfie.. we watched your latest video.. and at the end of that we cried.. felt so bad for you…
This video was listed at the end.. so we are watching again..
Please do not worry about your stuttering .. we know how anxiety works.. many of us.. if not most.. suffer from depression too..
Even if we do not have epilepsy.. anxiety .. depression.. but we love someone dearly who does.. and care for them.. this affects us hard.. to see the one you love more than life suffer as you do.. is the hardest in the world to handle..
Following you on your channel helps more than words can say.. we love you Alfie.. thank you each time we watch and try to comment best we can .. to help you.. we pray for you too..
Wish we could help you more.. because you deserve it so., send you our prayers.. hugs.. and every day our love💜💙
❤❤❤❤❤ you got this love 😢 I know it’s hard I also deal with depression and other issues and I appreciate you educating people ❤ I respect it a lot thank you so much love take care ❤
Thank you so much for your support and I’m feeling it hard at the minute they started me on meds that gives you worse depression and mood swings and it’s okay always here 💜💯
@@alfiesepilepsychannel Hun I hope nothing but the best for you
I love your update video ❤️ It’s like hanging out with you and getting to know you personally. One of my commenters asked if I could do something like this. I might. You are a very impressive person ❤️ and your so cute! Stay true and stay strong
Alfie.. your suffering is apparent in this video.. only four months ago..
As we watch you bravely talking to us best you can.. as you sit there changing your socks.. you completely win our hearts.. all over again..
Please never think your videos are disorganized or all over the place.. because that is not what we see..
We see a strong and courageous lad.. bravely fighting against a faceless merciless enemy.. against whom most of us would tremble with fear..
And yet there you are.. trying to cope .. fighting against anxiety so fierce it is palpable to us sitting here.. trying to see you clear thru our tears.,
These update videos are precious to all of us who love you Alfie.. they are your link to those you love you..
You are the bravest most beautiful lad we know.. and you have our support and our prayers..
Never in our lives have we wanted so badly to hug someone.. as we do right now watching you..
God Bless you, dearest lad.. may He keep you safe and grant you freedom from this horrible scourge..
We send you all the love and hugs we wish we could be there to give you💜💙🤗🙏
Great to see you Alfie look don't worry yourself just upload your videos when your ready your Amazing I hope you have good week from kerrie 💜
Buenas tardes Alfie de mi corazón. Te queremos mucho. No tires la toalla nunca. Eres un GUERRERO😊
Hi there, just found your channel and it’s so great to find someone else sharing our epilepsy journey! I know it’s tough to film the seizures, and manage to get any kind of upload schedule, but any video you put out is important and appreciated! I look forward to more and hope you are feeling better and seizure free soon! 💜💜💜
Alfie, don't put too much pressure on yourself. Upload when you can.
The most important thing is your wellbeing. That's a priority.
We are here for you 💖
I Wish you well chap,my hart goes out to you,I had epilepsy and bad anxiety as a young kid,not nice at all,take care of urself. X
Good luck with your music Alfie...I'm listening to it.. silent fan here😂
beautiful boy ☺ be strong 🤗. You are a normal person like everyone else. These seizures are not your fault.
Nice to see you back , glad you are keeping busy. Missed you lots ❤
So helpful these updates are.. talking about how you feel and what you find helps.. like your music.. is what makes us feel better.. we care about you., and feel your pain.. anything we can do to help.. let us know..
Question we have is maybe hard to answer.. when you are going through a seizure.. is it helpful to be touched gently.. not holding you down.. but just a gentle touch.. or is it easier for you not to be?
And in some of the videos we hear people constantly calling your name or asking questions.. this is in the aftermath when it looks like you just want to sleep.. is this annoying or is there a reason they do this?
Watching these.. seems like it would be more comfort to you to be allowed some quiet time just to rest and try to get yourself together a bit..
Every time we watch these we cry.. because no one should have to suffer like that.. we are so grateful to you for teaching those who have little knowledge of how epilepsy feels when you are having a seizure.. and what is best to do to help.. seeing you going through these means more than any words used to describe what it feels like., and our hearts break for you..
We love you Alfie.. please do the updates when you are able to.. we pray for you each day.. always we think of you.. 🙏🤗🌹
Jen999💜💙
I’ll answer your questions in my next update video will be uploading soon these last few weeks been chaos but will explain everything thank you for your support means the world 💯💜
@@alfiesepilepsychannel You are so welcome.. will look forward to your next update .. what matters here is you Alfie .. we are here for you :) 💜💙
Sending my prayers bro! I used listening and making music a lot to cope with the anxiety of my seizures
Thank you bro and it definitely helps take my mind away from everything sorry was late with replying I get a lot of comments 💜
@@alfiesepilepsychannel Bro you dont have to say sorry, I hope you are doing okay 🙏🏽
God Bless you dear Alfie❤
If you need someone, I am there for you. You are an amazing Person and we appreciate you! :)
Thank you ever so much for your support it means the world💜💜
Alfie my brother always here if you ever need a friend to talk to. Praying always bro
Anxiety is your trigger dont let it beat you.try to focus on your music. Pray everyday ❤❤❤❤❤❤i saw a Coke can dont drink soda its bad for you. If that can was yours. We support you. Alfie. I wish i could take you to the best doctors. Love 😍 your music. Your talented 😍😍😍. We are praying 🙏 for you. If i was there i would hold you hug you. And support you.
Beautiful comment.. excellent advice..
Agree we do with you about Alfie’s music channel.. we support him in this.. his music is phenomenal.. courageous.. and beautiful.. just like him..
We send him prayers.. hope.. love.. and hugs we wish with all our heart were real..
Your comment was so beautiful and thoughtful it made us cry..
Thank you for being there for him💜💙🙏
Hey champ, I'm so happy for you that you have your music. I often listen to it. Of course not everything is to my taste but I definitely have my favorites!!!😀
Thank you mate, for your openness. I think that's brave of you! I would like to ask you what fear looks like for you. And I also wondered if you were already experiencing this before the seizures started.
Is there anything you are specifically afraid of? Or are you mainly concerned? And besides distraction with music, are there any other tactics you use?
You may remember that I also suffer from severe anxiety. That's why I feel for you so much when you talk about it.
I also make music, but I also benefit greatly from psychotherapy. And using Citalopram. But during a panic attack, in the heat of the moment, so to speak, the only thing I have to hold on to is my faith in Jesus.
Fear can really suffocate you, right? Do you also have panic attacks?
Ok, these are quite a lot of questions so I'll leave it at that first.
High five mate!! 🖐🏼
Greetings, Erik
Sending you love, stay safe🥰
تبدو شاب طيب اتمنى لك الشفاء كن قوي💪
Hola alfie,eres un joven guerrero y un ejemplo de lucha y voluntad,te mando un abrazo grande desde buenos aires,argentina(america latina) tengo 39 años y padezco panico y ansiedad y me siento un tonto al ver tu enfermedad,tu si tienes una batalla contra tu propio organismo,sigue adelante muchacho,no bajes los brazos❤,saludos,natanael🙌
Hello from Topeka, Kansas :)
Dude , it's great to see another one of your videos again and would love to hear some of your music man , just know you are not alone we take it one day of a time in the ups and the downs .we are here for you .
Thank you ever so much for your support means the world 💜💜 and you can listen to some of my music at
youtube.com/@DJ.ShawZzZ?si=WoextRA3LvgKoHNb
Dear Alfie your so strong. Ive watched lots of your videos. Actually found your videos after being in icu recently from.status epilepticus and i was looking for left temporal lobe epilepsy as thats what i have and your videos came up. Your defo not alone. Many of us. I have epilepsy and even my little house bunny had epilepsy! I made this channel here that im.on origionally for epilepsy in rabbits to help.him.as meds were to strong for a tiny little bunny. What meds are you on? I take epilim.and keppra. Stay strong ..il.check.out your music channel
Thank you so much and that’s the reason I post these videos for people in the same situation who feel like nobody understands how it feels so then you get so much relief I remember watching a vid of myjourneytobeseizurefree where she explained the auras and the relief I felt after hearing that was unbelievable so that’s what made me do it whether some are graphic of the seizures it’s to see what we look like whilst in that state and to educate others and I’m on 500mg Lamotrigine have been for 4 years now and same effects tried keppra but got the rage and angry side effects and I’m on 10mg clobazam when I get the aura most of the time the clobazam doesn’t kick in in time so I use CBD and occasionally THC works immediately it relaxes my mind and body and thank you I’ve got a load of songs coming ahah I make songs to take my mind off stuff 🙃🔊 take care always here 💜💜
❤❤mi saludo parati gran luchador
💗💗💗💗💗💗💗💗💗💗💗💗💗💗💗💗💗💗💗💗💗💗💗💗💗
You need a friend that will help you relax and don't feel like you have to do something
Tengo una idea : vives en un lugar precioso con paisajes increibles. ¿Puedes dedicarte a hacer fotografía de esos lugares y ponerlos en venta con tu firma para los suscriptores?, siempre que tu salud te lo permita, claro
Hi, Alfie, you are very brave to let us into your life, family and your seizures. I know that your channel will progress with likes, but I find it difficult to say that I like your seizures but I don't. I know that you are suffering especially when you bite your lip and it bleeds. I don't pity you because I know what it is like to have seizures. I wish you well and I hope that the Medicos, can get your brain activity under control for your sake. Blessings to you Alfie and your family.😢
Smile
Hello Alfie how are you doing just wanted wish you a very merry Christmas i hope you have lovely Christmas all the best to you for next year 2024 from kerrie 😘🎄🎅🎁💜
I’m not too bad just editing some music and thank you so much merry Christmas and you too!😁❄️💜
Its just to laugh at life and its pro
How do you feel right now
Not too bad been having auras today but hopefully it doesn’t happen🤞thank you for your support 💜💜
@@alfiesepilepsychannel that's good I hope it doesn't happen again just be very careful
@@alfiesepilepsychannel what are auras
What are auras
Your music is amazing