My channel is pretty much all about being a carer for my father who has Motor Neuron Disease. I cared for my dad from the age of 18-20 and talk through the day to day struggles, give advice and make videos that may be of some use to someone else like me in the world.
What a mature young man you are! I'm ready sorry for your loss. I know it's been awhile, I just came across your videos. I'm not sick but my children are very rude to me and just wanted to say thank you for being a great son! You're mom is very lucky. I hope life has been well for your family 🙏
You can only be positive about MND if you are old. To be 60 and lose 20 years is not the same as being in your 20s and losing 60 years. For the avarage patient this perspective works. They can also think about how their lives would have been getting it in their 20s or 30s. Nobody in their 70s or beyond should feel like it was an injustice that they got it, when some get it in their 20s. Having MND old is a horrible ending, having it in your 20s is a horrible life.
HOW MY HUSBAND GOT CURED FROM Amyotrophic lateral Sclerosis ALS . I lost my Dad to ALS 5 years ago , he suffered from the dreaded disease for 6 years with his doctor telling us he can’t be cured and all the therapies and life support machines could not save him and 3 years later my husband was also diagnosed of the same disease and i was devastated he fainted when the doctor read the diagnosis because he knew how deadly the disease was.His condition worsened and he was unable to move and he was confined to the chair the direction the disease has taken with his body is the gradual deterioration of the “Bulgar muscle,” which controls breathing, swallowing, voice, and tongue movement. His neck muscles have weakened to the point that he can’t hold his head up and the left side of his body is weaker than the right , the doctors told me all his muscles were dead, he was able to eat via a machine because he could not swallow anything. I searched and tried different neurologists and different medicines none worked and I was so scared to lose my husband. While running up and down seeking a solution I met my friend from third grade and saw me all worked up, we got talking and in the process of discussion I told him all I am facing. He felt sad and told me about Dr. Hassan who was able to cure his cousin. I was interested and he gave me his contact. I contacted him and he sent me his medicine and in a space of 3 weeks he was up on his feet again and in 4 week he recovered fully. He can do normal things like walking, eating, without any assistance whatsoever. I am so amazed at the potency and effectiveness of his medicine. I decided to share my story for you not to lose hope or feel your world has ended. Simply contact him on his Email. drhassanherbscure@gmail.com write Him on whatsapp / call +2349032582239
I’m very proud of you and your family. My mom doesn’t want any strangers in the house either. My mom hasnt been able to get a diagnosis of her condition, fast onset of her muscle waistline and extreme weakness, however, the symptoms appear to be the same, she is needing a wheel chair for long distance. Like to the car from the house. She uses a walker in the house. I have watched all your videos, you are a great inspiration. Thank you.
It's crazy how our own "child", that is our (global) "economic" system only worsens human experience. Especially in cases when this experience includes a grave disease, but even when humans are perfectly (physically) healthy it is so much against us ourselves... And yet the solutions and the world described by Charlie Chaplin in his great speech, are just arm's length away...
Hare Bell I’m not too bad thank you, still struggle every now and then but life’s got me busy which is good and the future is looking okay, so I’m staying optimistic :) don’t think I’ll ever be fully okay after everything but things are getting better and I know that’s what my dad would have wanted. Hope everything is okay your end also?
Thank you, my life is okay and I am grateful everyday. As a parent myself, I can assure you that is what your Dad wanted the most. Apart from that, I know he will have been so proud of you everyday. I hope you and your family have a good Christmas. Best wishes for 2018. Stay strong and keep looking forward. xx
Hare Bell thank you that’s very nice of you! Wishing yourself and all the family well and hope you all have a fantastic Christmas and a great new year too! thank you for your comments, they really are lovely to read :) xx
Love you videos and you are doing well.. I too am from England so I know how much you care as English are so well known for it.. I am sure you are a great help to your parents... I know how you feel as when I was told about my heart problem and for a while I went around looking at people smoking and drinking etc and I thought why are they dying.. Take care I am thinking of you..
MsKerryanne thank you for the lovely comment, that's very kind! I couldn't see the second comment on the other video unfortunately 😢 I hope you're doing okay. It's very frustrating seeing people who don't take care of themselves what so ever and then see a loved one who's kept physically active their whole life suffer from a disease that destroys them, unfortunately you see more and more of it in the UK as the days go by.. hope yourself and your family are well was lovely to hear from you 😊
Gia nettie aww thank you yeah all is okay, glad you're well too! Definitely plan to upload some more videos in the near future, took me a while to come up with some ideas of what videos to make 😊
All good, Keep up the good work, you are really helping people by raising awareness as well as providing them with a space to cope/discuss. Inspirational and very brave of you. you're parents will be proud.
Upasana Deka work has written me out of time, but I definitely plan to make another video again as soon as I can. Not too sure what specifically to make it on so if there's anything you have in mind I'll do my best to make a video about it as soon as I can 😊
I hope that one day that scientists will find a cure for ALS (Motor Neuron Disease) and then anyone who is diagnosed with MND will be able to survive. I'm sorry to hear about this. I hope things get better for you soon. xx
My father got diagnosed with MND last October, and in that time he's completely lost his voice and it's absolutely breaking me. I just can't seem to get to grips with it all. Thankyou for making this video because it does help me and other people realise that we're not alone, actually hearing someone speak about it does help. I hope you and your family are doing okay.
Thank you for the comment Lucy, I really appreciate it 😊 really sorry to hear about your father, it's incredibly difficult to go through but it'll make you even stronger as a family and together you'll over come and struggles that lay ahead. I wanna make another video when I am finally back home, can you think of any ideas that may be able to help yourself?
yh this helped my auntie died of this a couple of years ago and then it spread to my grandma and she died a couple of months back and my mums a triplet so one of the triplets died and all of them are dying now and my mum has got to the point were she gets tired going up the stairs and im only 13 with a twin brother and a sister and my dad is running a marathon for mnd and has raised around 18,000 pounds for the mnda (motor nuron disease association) and u understand wat im going through but yh i wish i couldve spent more time wiv my grandma and my auntie and thats why im helping dad with the washing and helping mum gets dressed so yh then again this video really helped my thank you
Thank you for the comment, sounds like you've got one amazing and strong family. You sound like a very strong your lad as well. keep staying positive, it's a struggle but you're doing all the right things. Stay strong, sending my love to yourself and all the family
Hey really sorry for the very late reply, how are you doing at the moment, given the situation? If there's any advice you'd like or any way I can help I'm only a message away
I have no reason to have typed MND on RU-vid as I don't have any family members or friends with the disease but I'm very glad I did. Your'e very inspirational in your approach and your honesty to all your viewers. I'm certain that you are helping a lot of people who are struggling with family members who have the disease. Also you have taught me how terrible this disease is but most importantly you allowed me understand how important family is to all of us and to never take things for granted.
Thank you so much, comments like this make me feel a lot better about the things I've done. I'm really glad you enjoyed the videos, I hope to upload a few more soon but my new career keeps me away from home and a little busy at the moment. If it wasn't for comments like yours I don't know if I'd bother, it really helps me to know that there are people out there that are finding my videos beneficial and educational. Thank you so much again, wishing you all the best 😊
Type in 'weekend wipeout MND - no white flags' on Facebook and join the group, have a community of amazing people who help each other in the same situation. Has been a big help to me personally. MNDA website offers a lot of great information and advice also. There's also a page called 'kidz zone weekend wipeout MND' for the younger people, which I'm an admin of. Hope one of these will be useful to you, they're excellent pages to be a part of and you'll be welcomed 😊
Hello Ben its confirmed that I have MND and my lower motor never are effected its quite stressful and my family is not financially sound doctor told me that upper motor never never be effected BT how I'll manage brother without financial sport
I'm sorry to hear that, my heart goes out to you. The stress of it all is crazy, just stay strong and take each day as it comes. There's some fantastic support groups out there, with lots of people in similar conditions to yourself. If you'd like any links to the pages let me know x
Hello Ben I'm from India and I'm just 19years old.i have problem in to hold object,writing and running from last year. I was very active in sports but now i can't play and dance.my Right hand and right leg getting weak.its quite depressing how I'll survive
I'm sorry to hear about that, was it confirmed to be MND? Wishing you all the best, stay strong and if ever you need any help, support or advice feel free to ask me anything
I'm 13 and my dad is currently fighting MND. it sucks to see him not be able to socialise and talk to my friends parents. I also keep in mind that he may not see me graduate and go to university so I just have to try my hardest in everything I do while he's around so he can be proud of me. Although, I always tell myself that things could be worse and that it is great that he can still walk around. I miss having conversations with him about my rugby games and the news but I think it is great that he cam still come and watch. Also thanks for the video it made me feel a lot better about the whole situation.
My heart really goes out to you mate. I was 18 when my dad was diagnosed and had a lot more life experience and I found that insanely hard. I can't imagine going through it all at an even younger age. You're coping extremely well though and your outlook on the situation is inspirational. Nothing I say can really help or make things any better but take every day to remember how much you mean to your dad and how much he means to you. He'll be insanely proud of you. Live for the moment and make sure you spend plenty of time together doing whatever you can, even if it's just watching films. Also take a little time to yourself every now and then for a breather. Take care, my love goes out to yourself and all of your family. You'll get very far in life and your dad will always know that
Hi Ben. Sorry to hear what happened - glad to see you're back :) Hope you're alright. I messaged you months ago when my dad passed away, tried to get back in touch but RU-vid has got rid of messages :( i've started a campaign which has just had the go ahead from MNDA :) I'd love to hear your thoughts and ideas etc if you'd like to? Drop me an email on Recycle4mnda@gmail.com hope to speak soon. X
hello Ben. hope your well. i have an uncle who has MND... every day he's getting worse and worse. i don't know what to do. i try to keep things really normal, but he just breaks down all the time. its just so tough. i never knew such disease existed... we need more videos like your, just to help others cope.. and just to talk about it. means a lot. wishing you all the best, and your family, lots of love.
I'm sorry to hear about your uncle getting this dreadful disease. It's such a difficult disease to deal with. The first few months were really difficult for my dad and he was really angry and finding it hard to manage his emotions. Then his mood changed as he grew more accepting of the situation. It didn't exactly make him feel better but it gave him a slightly more positive out look on what is a very negative position to be in. As your uncle adapts to the disease you may find he starts to become calmer like my dad did. Everyone deals with it in different ways and it's such a hard thing to manage. Best thing you can do is try to keep things as normal as you can. My dad just wanted to try and forget about the disease as much as he could so we would always watch films together, I'd take him for walks in his wheel chair if I could. Your all hanging in there really well, just stay strong and spend as much time together as possible. Spending time together was the thing that made my dad want to live as long as he did, and he said gave him the best quality of life that he could have had. Sending my love to all of you through this dark and complicated time
thank you so much Ben, your advise means a lot. we watched Fawlty towers today.. he just cried and laughed. Hes getting a lift fitted in and a ramp outside the house. lets take it one day at a time. xx thank you.
Sounds very similar to my dad too. We had a big ramp outside as well which was a massive help. Watching tv is a great way to escape it for at least half an hour. Great way to spend time together as a family also. You're all doing the right things and all incredibly strong. Hang in there and if you need any advice or a chat I'm only a message away xx
