my grandfather died of als around 4 years ago... he was always a very cheerful man, despite being almost completely paralyzed and unable to speak. when i was a baby, he could still walk and talk. I'm 14 now so when he died i was around 10. His progression was pretty slow until the last few years. He was so strong. R.I.P Pop
I have a older brother that has ALS, just found out in January of 2015. This is heart breaking. He was always a strong person and now to see him go down hill has really took a toll on me. No one else in the family would believe him. I seen it first hand and how he is now. He doesn't have but a few people who go and visit him and that is the worst part for me. He has made GOD his first priority in his life. I am the one that gets put down if I do anything for him and it's not right nor is it fair to me. His wife is the main one who has to take care of him and make sure he is bathed good. I no it is also very hard on her. I thank God for him being here today and my sister in law for being there with him. Pray for them and also the others with this disease it is very hard on the families. Thank you.
God is awesome that He made us stemcells and so the only hope to get cured is also stemcells. Now there is oral livecells therapy rhat has been provem for 11yrs now. Get yours today +639175110518
@@DN2512 God is awesome that He made us stemcells and so the only hope to get cured is also stemcells. Now there is oral livecells therapy rhat has been provem for 11yrs now. Get yours today +639175110518
Aubrey livecellstherapy oh yes give praise and credit to “god” for stem cells and forget the fact that the fuckin disease exists n the first place and there’s no cure 🤦♂️🤦♂️
I miss u nana. i miss ur smile. i miss your hugs. i miss ur dancing to hip hop with me and slilding across the floor. i went through way more then i needed to as a 9 year old. i held ur hand as i screamed for you to come back. one minute u were in my arms, the next u were gone. i miss u nana. i love u nana. love em
I think if someone with ALS took Redox Signaling Molecules (ASEA) they would have some great results because the molecules go in to your body and WAKE UP your cells to repair or replace themselves. If you have ALS or know someone that does, please check out the science on PubMed (not Google, as that is full of whatever) but PubMed has the published medical science on it. I'm taking it and I've seen miracles. One day, the world will catch up and I hope everyone will know about it, but it's only been around 10 years.
Tracy Walker my neighbor is dying from this. He can’t move or talk his lungs have also gave up he needs to have his air machine now. Maybe I can help him. He has 2 boys and 2 girls I knew him before this happened. I can’t believe how much ALS can affect someone it’s no joke.
When my father was told….he was told to look for a different career….he was a sheet metal …so he decided to go to school to learn to do my mother’s books since she’d be the breadwinner…..she was told he was chronic. To hide weapons and to divorce him.. she went to beauty school. And opened her own salon..he kept her books and when he couldn’t hold a pencil he taught her..we kept him home…his mind was sharp the entire time..he was diagnosed at 44… died at 64. We included him…picked him up and took him to weddings…put a flower on his pajamas…we adored him and regardless of him not getting enough air to be able speak. We played the guessing game till we got it..
My dear cousin just passed away with this horrible disease on August 9, 2024. She was 4 days away from turning 75, & had only been diagnosed with this early June! She had suffered numerous serious illnesses, including cancer, the past 17 years, but survived. She also had other serious illnesses, & I guess her body just couldn't take any more. I miss her terribly.
My brother in law has just been diaginsed with ALS. This video is one of the best source of information on the illness. Dr. Sheean has so lucidly and frankly explained the various aspects of the disease like symptoms, progression, treatment and support. He ends with a hope, at least for future patients through research in stem cell therapy. Thank you UC SD for the great help.
Thank you. I'm doing better now. Just have to look at it like this : I miss him but he's not suffering anymore. Can't think of the whole thing in terms of how I feel. My mom is doing a lot worse than I am. They were married for 41 years. She'll never get over it but our family is close so that helps her get through each day.
There is NOTHING you can take for ALS. My dad lost his battle of 4 1/2 years. When he for out he went to a clinic for 3 weeks and they did a cleansing program to get toxins out of his body, when he went home he was on IV vitamins. Then he took out all the mercury filling out of his mouth. Took lots of vitamins etc... I don't know if any of this worked for him, what I do know is they gave him 5 years and he lived almost 5 years. I think what made the most difference for him was the AMAZING care he had, he stayed at home with family and friends. "Food for the soul" is what I call it. At the end he finally allowed us to give him morphine so he wasn't in a TON of pain. ( he was convinced the meds would kill him sooner, so he limited his use) I miss him SO bad.
I'm very sorry t hear about your dad. Just remember the good times you had and remember him fondly. Live a fun-filled and loving life and make your dad proud.
Nazi my dad died from als to at only 56 yrs old in one year He suffocated in hospital after nurses took his breathing machine away n gave it to another patient They thought he was breathing ok on his own n he was neglected He wasn't obviously n was found on floor He was paralyzed so that means he bobbed his head back and forth gasping for air not trying to get air n help He would hv lived another 6 months w help It's a horrible desease N they suffocate They need to come up with a way to put them in coma so they don't die struggling for air and aware of it
I needed to learn about ALS for a grad school project, this was the best source of information so far. I finally feel like I've got a handle on what this illness is. Greatly appreciated!!
I am flying home for the funeral of my childhood friend who fought this cruelest of diseases for four years before finally succumbing to it. We must not give up until a cure is finally discovered.
My wife was diagnosed with ALS from the doctor here in Yakima from her upper and lower body muscular weakness. We went over to Seattle medical Center to get a second opinion and they confirmed it but what shocked me was the doctor over At the UW Medical Center that University of Washington Medical Center told her step-by-step how she was gonna die. Unbelievable.
My condolences. My father passed away at 58 in 2007. My mom is still grieving him and has not remarried. We miss him so much. I wish he could still be here =(
I have heard the same thing about Stephen Hawking. This is because scientific studies present more information on the familial form than the sporadic form. You could have ALS for a decade before it becomes diagnosed or noticeable.
I have been diagnosed with ALS and have a baclofen pump which I want removed since my spasticity has been dramatically reduced. Thank you for your help by sharing this important information. Karen Storek
I've been dealing with mystery illness for 4 years now. The part that got me on this talk was when the doc said the leg spasms are not priority of the patients symptoms. I have those spasms in my leg and never did it come up with my doctor. I'm slowly getting worse and since I can't work like I use to I have no insurance. The worst part is society- like this guy said ' sounds like getting old" I'm so tired of people saying " welcome to getting old". I've been diagnosed with chronic fatique- but I think its either MS- Lyme or hopefully not ALS.
jackchorn remember there's many things that can cause twitching even discs n other desease s even medications But not all start w muscles twitching my dad did Some start w not swollow if or talking well or like u said tired fatigue like I hv N my legs upper twitches to so I am Lil nervous to
I don’t know if you are on Blood Pressure meds, but I can tell you first hand, the side effects can be horrible: fatigue, depression, dizziness, aches and pains that become unbearable. Just an FYI.
This is a old post so not sure if the message will get to you and hopefully it will because I just lost my brother to ALS , if you able to still walk, talk, type, eat, it's definitely not ALS as it works quickly!! Yes it started off with the nerve twitching but not random twitching I'm talking about turn on a machine and let it run twitching as my brother's arms never stopped, then it moved to his chest, later legs and I believe his starter with his upper body because his speech was slurred pretty early on and we all thought he was drinking or maybe started drug's 😢 I think back to all the times I argued with him screaming WTF are you on and why would you start now when you never did this your whole life!?? He just use to say, I didn't take nothing and I'm not drinking! Sadly the speech went from slurred to a heavy raspy voice that was hard to make out any words and he was so stubborn refusing to go to the doctor until his wife got so mad she packed his suitcase and told him, LEAVE! I won't watch you die in front of me!! By this time maybe a year and a half had passed and he was dragging one leg his hands wasn't working well he was having problems swallowing choking alot especially on water getting skinny, his wife would have to shave his face help him shower tie his shoes, we thought he had a stroke but it didn't make sense to us because stroke is usually one side of the body when he was obviously having issues all over. sadly with ALS once it starts if your lucky maybe 5 years but by year 4 trust me you wouldn't even be able to hold your phone to type ! My brother lived not even the 5 years they give once it started every day he woke up something else in his body stopped working I remember one side of his throat was paralyzed but he was still able to eat because his wife would smash the food like you would for a baby and feed him little bites with her fingers he couldn't open his mouth wide for a spoon but she made sure he ate 3 times a day and forced the protein shakes and ensure she would sit in front of his face and wouldn't leave him in peace until he drank it all. She was devastated they had only been married 4 year's just bought a beautiful house out in the country spent a year fixing the inside how they liked and then all of a sudden to be told he will die in maybe another 6 months? My brother was young, he died Christmas night 2023 maybe 7:00pm we had him on a morphine drip so he wasn't in pain or struggling he just took a last breath and was gone😢 he lived 2 years after the first signs of the twitching started. At the end he was 82 lbs from 225lbs he could no longer eat, or drink, the last thing to go is the lungs as it takes the brain to send the signals to breath.
It can be slow it can be fast. I wouldn't consider it lucky or unfortunate to have either. My dad died from ALS 18 years ago im 29 now I'm afraid to have children, we really don't know if it's genetic or not. My dad though was 6,1 200lbs and after diagnosis died 11 months later at around 120 lbs. I wouldn't wish this disease on my worst enemy. I'm working right now to save money go to a decent university and learn more and have myself, my DNA/genetics tested to help the world understand ALS. I really wouldn't wish it on my worst anyway people that have mentally and physically harmed me, I would never wish advanced als on. My dad was diagnosed at 49 and died at 50. In his last few months of age 47 muscle spasms and loss strength and balance was when he searched for a diagnosis it took months and multiple doctors to diagnose it. He assumed he had it before he was even diagnosed the doctors in our area east tennessee USA don't know much at all about it. Especially as on set and aggressive as his was. I'm not going to be some go fund me type person, but I would hate to know that anyone I do or don't know go through that, to the point I'm afraid to procreate. I'm going to post this on multiple videos on YT and enet in general, if someone or a lab anywhere wouof like to sample my genetics please contact me. I'd do anything to atleast try to help prevent someone go through advanced muscular sclerosis.
Sounds a bit like my dad. He died aged 58 in Aug 2007. He was a Vietnam vet, supervisor of our small town ambulance, strong and in the National Guard and just a very very kind man/father/husband. He had it for at least 7 years from the day of diagnosis. But he may have had symptoms for a while before that. It was very shocking and sometimes I feel it's a dream I'm living in that I dont have my father and my kids dont have a grandfather 😔 Anytime I get muscle twitches or feel tired I think I may get it later on in the future. I'm 44 now so who knows?
I will never understand this disease I was caregiver for my uncle who was diagnose in may2013 and passaway in aug.27,2013 how long did have this and no doctor in Puerto Rico couldn't find this until I bought him to n.j. Rip uncle luie luv u always
My mother died from ALS and in the small country region we live in there have been 8-10 deaths from ALS. They call them clusters. I wish there were more info into clusters.
@@applejellypucci this is a serious question. Like a antivenom for snake or spider bites is it possible that maybe more research on blue algae might hold the answer to a cure? Has there been any research on blue algae that says how its causing ALS in Guam? Thank you I'd appreciate a reply
The beginning signs with my brother was twitching all his nerves in his arms and chest would constant twitch. He is at end stage now in a bed on a morphine drip as everything in his body stopped working now.😢 We are so devastated my brother is young and was so healthy had his own construction business use to freaking run huge machines, now he is 90 lbs and just a skeleton that looks 80 years old instead of his 44 years. At least he's nice the Emergency room told my brother and then told us, sorry he had ALS he's going to die in a few months didn't offer any resources or information just sent us on our way. Then we took him to a neurologist who said I think it just had a stroke. Yeah, sorry when you have ALS they can't do anything so they don't even try...
My aunt died from ALS (Lou Gehrig's Disease). She had the disease for approximately 40 to 50 years. It started in her feet and worked its way up the body until it cut off her respiratory system. My uncle was her caregiver and it was excruciating on him physically and sleep-deprived. Unfortunately, it took a toll on him and after she died, he died from cancer a few years later. Sad
Ever heard the saying, "You get what you pay for" or about, "Beggars cant be choosers" ? Yet time and time again its people just like yourself (Marina Melnik) who aren't paying for anything who whine and complain the most.
I remember reading about when Lou Gehrig went to the Mayo Clinic. The doctor that he originally saw recognized Gehrig had ALS immediately, although he put him through a battery of tests to confirm his suspicions. It turned out that the doctor’s mother had died from that very same disease.
@@applejellypucci Hi April I also have a lot of twitching or "pulsing" of my thigh muscle. Im glad you don't have ALS. Im always thinking I may get it later on...my father died of ALS in 2007 aged 58 =(
Nerve damage is what I was diagnosed with in neck area and back. I had weakness on my left side off and on. MRI and EMG were run and canceled out my fear of ALS and multiple sclerosis.
I know of two men who had ALS.. both of them were VERY competitive athletes (as was Lou Gehrig).. pushing their bodies to extreme fatigue..Could this be a contributing cause to this disease?
i'm currently researching ALS for my own self, and found a lot of connections between exercise and ALS, whether that be athlete standard or a lover of weight lifting and active lifestyle. *gulps looking over at stack of gym clothes cleaned ready for a new week*
Has a study ever been done to rule out heavy metals toxicity being a Culprit? Heavy metals acting as deflective blockers of neuropathways? Like detoxing the metals and monitor symptom progression or digression? If everything is electrical bio communication, would it not stand to present a problem when metals toxicity is introduced to that neuro communication?
Depressing video. In summary, it says there is no cure (and no hope). They knock all "alternative therapies," BUT...what would a person have to lose by trying something besides what THEY offer??? I had a cousin who died a slow, grueling death from this disease (in his 40's) and it was so heartbreaking.
My heart goes out to all those people with ALS I have to say that from the complexity of the disease there will never be a cure People with the disease need to be educated on the options they have in dealing with the disease as it progresses
Any medicine that they say "we really don't know it might help but we can't tell" is nonsense. Like what he said about the one drug available. And right after that he bags on the other stuff out there that also does not work.
apparently 7 of the reversals used curcumin and it may have to do with changes that occur in the microbiome. and it cant be sugar that is the cause, people eat loads of sugar most of them never develop anything even remotely similar to ALS.
It shouldn't have anything to do with a damn Ice Bucket Challenge. That's just a damn gimmick for people without diseases who are craving attention. Things like that piss me off. "Oh it brings awareness" excuse me but fuck you! You know what else brings awareness? This video brings awareness, if people were to post facts on their walls and share info about the disease, that would spread awareness and having a link everywhere would spread a way to donate money to the cause. I can't stand watching douche bags douse themselves in cold water and act like they're doing it for a cause. Good deeds should be done of freewill and not for your own glory. Very informative video.
Radoslaw Smaczny my father has ALS maybe if you had a member of the family that suffers from this sick disease you might appreciate the need for a cure, it does create awareness and although there is people who did it for attention it still creates awareness and has raised millions. Personally the handful of people making a big deal out of this are the ones seeking attention, if you dont wanna do it fine, but its rather pathetic to sit their and moan about one of the only good things that can come from social networking
That doctor was GREAT in Jurassic Park. ha! All joking aside I have a bad degenerative nerve disease, though I don't know what it is yet. Started as Tourettes.
Thanks for the good in depth discussion guys. I've had trouble swallowing for around the last 30 years, I've been medically checked out (with endoscope etc) and there's no obvious cause. I'm now in my early 50's. I've been physically active, virtually all my life, and I've now developed fasciculations, mostly in my left rear upper thigh muscle now, for the last 7 months. When can I expect it to develop into the next stage and start to experience muscle weakness, slurred speech, clumsiness, atrophy etc, or, if it isn't going to progress any further, when can I safely assume that I haven't got ALS? Thanks.
I bet you that if you put the person in a pitch black room with sound proof headphones on, and put the person in a childs cradled position or slightly upside down (anything with sharp grade), that this will help fix it. The shit moves slow but it should help. Its like some wires that got crossed or are too close to each other. Im getting crosstalk so I move groups of muscles that have dominance over their partner. Hand connected to wrist to elbow etc. But your hand is lower than the rest of you at rest, however it is owned by your shoulder. Commonly dominant. Cant find where my muscles are now but I know that the amount of pull I have over certain muscles is much greater and I've lost the ability to deflate them and relax. I reach through now in long paths that hurt my head and hand. The more I try to escape the more I am trapped, but technically, if you disrupt that crosstalk for a magical set period of time the rest of the persons muscles will give up, as long as this happens in the correct order the person will not progress. Also, anything anti gravity, swimming, even imagining any of these things help. I all of a sudden get a huge rush of blood and can actually feel some individual parts of my limbs as of current.
That's, uh, not how the world works. I once got cured of generalized anxiety disorder. I mean, it came back, but I had gotten cured and stayed that way for a few years. There are some types of epilepsy that can be cured and some that can't. One of my friends has one of the ones that can't be cured. My mom has three autoimmune diseases, none of which can be cured. Sometimes, people use the words "disease" and "disorder" incorrectly to describe something that is really more of a disability. But "disease" and "disorder" can usually be used interchangeably.
I did some research and ALS is caused by mitochondrial dysfunction that is caused by exposure to certain pesticides in gardening and agriculture, formaldehyde in diesel/jet fumes, formaldehyde in corpse preservation, pathegons in algal blooms in dirty water. As a result the following professions are higher risk for developping ALS: Professional outdoor sport players, professional gardners, professional pilots and truck drivers professional water skiers, militairy personal; and funeral directors
At least Jesus will wake them in resurrection john 5:28,29 Jehovah God exodus 6:3 made that possible through His Son,s sacrifice N thy will be back on new earth coming soon psalms 37:29-34 including my father who passed from als Thank you drs and researchers for all you are doing in way of advancements, in medicine and quality of life We need to help these patients who literally cannot move n then know they will die horribly suffocating I feel they need to have choice of going into a coma or something so they are not aware of it in the very end My dad died gasping for air n fell off hospital bed he was suffering
+ Lidya Lu If your Jesus or your Jehovah, or your so-called holy spirit cared so much, he/they/it would not allow such a horrible disease to afflict any one in the first place. Take your empty, meaningless, god-related garbage elsewhere.
@@yevodee4024 Ignorance is bless and you know not what you say, it is written in the HOLY BIBLE that they will be deaf and blind, so from a deaf and blind prospective how can you see or hear,. Such profound meaning...
+ Pamela The REALLY HEINOUS MONSTERS are people who peddle *false hopes and false promises in the name of some god or the other,* but offer not a shred VERIFIABLE evidence whatsoever. It is THEY, and their *supporters like you* who are so utterly shameless, that I can't even ask you to be really ashamed of yourselves. *Genuine medical benefits are the result of hard work done by sincere scientists and doctors (using the principles of science), and NOT the handiwork of any god of any religion.* I have a very close and deeply beloved family-member who is afflicted with ALS. Whatever succour is provided to this person, comes from science, and *NOT from any god of any religion.* So take your self-righteous pontification elsewhere.
@@yevodee4024 @yevodee: Didn't you not read where Lidya wrote that she thanks the *doctors* and the *researchers* for all that they are doing??!! Therefore, it was unnecessary you writing in bold letters, that medical benefits are the result of hard working scientists and doctors. That was already made clear by Lidya. To say you're going through the same thing as Lidya, with a dear family member suffering with ALS, we'd expect you to write words of sympathy and be supportive and understanding - instead, you come on here to pull Lidya down, cause offence and attack them for their personal way of coping, beliefs and hopes for the future. Do you honestly think it's right to treat another person in a similar situation to yourself this way.🤔
+ @@TheKeetkeet66 And you are a self-deluding, self-righteous *MORONIC SCOUNDREL* if you put your faith in some imaginary being (who, if he/she/it exists, does not care about the world).
+@@luluirizar7281 You said, "without Jesus nothing would be possible". That means ALS is possible only *BECAUSE* of Jesus. A very kind-hearted god you have there, I must say!
This is so unbelievable!! How can I ever explain to the world that Dr ALUDA on RUclips cured my (ALS) with his herbal medication. i feel so happy and excited..
my grandfather died of als around 4 years ago... he was always a very cheerful man, despite being almost completely paralyzed and unable to speak. when i was a baby, he could still walk and talk. I'm 14 now so when he died i was around 10. His progression was pretty slow until the last few years. He was so strong. R.I.P Pop
My 85 yr old mother just got diagnosed yesterday. I love her so much. Praying for her.
i pray for her to hope you guys are doing ok
@@ernestk522 thanks man. She passed away on the 8th of this month.
sorry for your loss rip to your mother
@@ernestk522 again I appreciate it bro.
@@raiderfan71269 My sincere condolences.
I have a older brother that has ALS, just found out in January of 2015. This is heart breaking. He was always a strong person and now to see him go down hill has really took a toll on me. No one else in the family would believe him. I seen it first hand and how he is now. He doesn't have but a few people who go and visit him and that is the worst part for me. He has made GOD his first priority in his life. I am the one that gets put down if I do anything for him and it's not right nor is it fair to me. His wife is the main one who has to take care of him and make sure he is bathed good. I no it is also very hard on her. I thank God for him being here today and my sister in law for being there with him. Pray for them and also the others with this disease it is very hard on the families. Thank you.
+Elizabeth Stallard
SO HOW IS HE NOW ELIZ
TKS
God is awesome that He made us stemcells and so the only hope to get cured is also stemcells. Now there is oral livecells therapy rhat has been provem for 11yrs now. Get yours today +639175110518
@@DN2512 God is awesome that He made us stemcells and so the only hope to get cured is also stemcells. Now there is oral livecells therapy rhat has been provem for 11yrs now. Get yours today +639175110518
Aubrey livecellstherapy oh yes give praise and credit to “god” for stem cells and forget the fact that the fuckin disease exists n the first place and there’s no cure 🤦♂️🤦♂️
My husband has it 4 years hell on earth 😢
I miss u nana. i miss ur smile. i miss your hugs. i miss ur dancing to hip hop with me and slilding across the floor. i went through way more then i needed to as a 9 year old. i held ur hand as i screamed for you to come back. one minute u were in my arms, the next u were gone. i miss u nana. i love u nana.
love em
R.I.P. Lou Gehrig
My beautiful brave mom died of this horrible disease. Taking away my best friend.
We just Pray, That soon they will find a cure for ALS Among other Illness also.
Many prayed , Many Dead !
I think if someone with ALS took Redox Signaling Molecules (ASEA) they would have some great results because the molecules go in to your body and WAKE UP your cells to repair or replace themselves. If you have ALS or know someone that does, please check out the science on PubMed (not Google, as that is full of whatever) but PubMed has the published medical science on it. I'm taking it and I've seen miracles. One day, the world will catch up and I hope everyone will know about it, but it's only been around 10 years.
Tracy Walker my neighbor is dying from this. He can’t move or talk his lungs have also gave up he needs to have his air machine now. Maybe I can help him. He has 2 boys and 2 girls I knew him before this happened. I can’t believe how much ALS can affect someone it’s no joke.
According to covid survivors....they say ALS is a walk in the park compared to covid
Bullshitters tbh
@@Damnto please delete this.
🙏 pray for the suffering of all incurable illnesses!
U pray for the suffering?
When my father was told….he was told to look for a different career….he was a sheet metal …so he decided to go to school to learn to do my mother’s books since she’d be the breadwinner…..she was told he was chronic. To hide weapons and to divorce him.. she went to beauty school. And opened her own salon..he kept her books and when he couldn’t hold a pencil he taught her..we kept him home…his mind was sharp the entire time..he was diagnosed at 44… died at 64. We included him…picked him up and took him to weddings…put a flower on his pajamas…we adored him and regardless of him not getting enough air to be able speak. We played the guessing game till we got it..
Thank you 😊 I have ALS and you paint a beautiful picture to inspire and help families like mine find more joy in the midst of hard times.
My dear cousin just passed away with this horrible disease on August 9, 2024. She was 4 days away from turning 75, & had only been diagnosed with this early June! She had suffered numerous serious illnesses, including cancer, the past 17 years, but survived. She also had other serious illnesses, & I guess her body just couldn't take any more. I miss her terribly.
My brother in law has just been diaginsed with ALS. This video is one of the best source of information on the illness. Dr. Sheean has so lucidly and frankly explained the various aspects of the disease like symptoms, progression, treatment and support. He ends with a hope, at least for future patients through research in stem cell therapy. Thank you UC SD for the great help.
Stop all carbs and sugar. Exercise. See Cuehelo’s video who lives in Portugal. He stopped his progression with diet.
@@tenminutetokyo2643 no he didn't...
Thank you. I'm doing better now. Just have to look at it like this : I miss him but he's not suffering anymore. Can't think of the whole thing in terms of how I feel. My mom is doing a lot worse than I am. They were married for 41 years. She'll never get over it but our family is close so that helps her get through each day.
There is NOTHING you can take for ALS. My dad lost his battle of 4 1/2 years. When he for out he went to a clinic for 3 weeks and they did a cleansing program to get toxins out of his body, when he went home he was on IV vitamins. Then he took out all the mercury filling out of his mouth. Took lots of vitamins etc... I don't know if any of this worked for him, what I do know is they gave him 5 years and he lived almost 5 years. I think what made the most difference for him was the AMAZING care he had, he stayed at home with family and friends. "Food for the soul" is what I call it. At the end he finally allowed us to give him morphine so he wasn't in a TON of pain. ( he was convinced the meds would kill him sooner, so he limited his use) I miss him SO bad.
I'm very sorry t hear about your dad. Just remember the good times you had and remember him fondly. Live a fun-filled and loving life and make your dad proud.
ALS is a death sentence so screw being addicted while having ALS. The less pain the better.
Nazi my dad died from als to at only 56 yrs old in one year
He suffocated in hospital after nurses took his breathing machine away n gave it to another patient
They thought he was breathing ok on his own n he was neglected
He wasn't obviously n was found on floor
He was paralyzed so that means he bobbed his head back and forth gasping for air not trying to get air n help
He would hv lived another 6 months w help
It's a horrible desease
N they suffocate
They need to come up with a way to put them in coma so they don't die struggling for air and aware of it
Jahseh Onfroy it don't matter when u are dying n in agony
N morphine works differently
Lola Heatherton exactly
I needed to learn about ALS for a grad school project, this was the best source of information so far. I finally feel like I've got a handle on what this illness is. Greatly appreciated!!
I am flying home for the funeral of my childhood friend who fought this cruelest of diseases for four years before finally succumbing to it. We must not give up until a cure is finally discovered.
My wife was diagnosed with ALS from the doctor here in Yakima from her upper and lower body muscular weakness. We went over to Seattle medical Center to get a second opinion and they confirmed it but what shocked me was the doctor over At the UW Medical Center that University of Washington Medical Center told her step-by-step how she was gonna die. Unbelievable.
So heartless smh
My husband’s mom died of ALS in 1966. In December 2023 my childhood friend died from ALS. Ruthless disease.
My dad passed away from ALS 2 years ago today. RIP
My condolences. My father passed away at 58 in 2007. My mom is still grieving him and has not remarried. We miss him so much. I wish he could still be here =(
How old was he diagnosed ?
Dr Sheean is amazing.
I have heard the same thing about Stephen Hawking. This is because scientific studies present more information on the familial form than the sporadic form. You could have ALS for a decade before it becomes diagnosed or noticeable.
I have been diagnosed with ALS and have a baclofen pump which I want removed since my spasticity has been dramatically reduced.
Thank you for your help by sharing this important information.
Karen Storek
+Karen Storek
hI KAREN dID U GO FOR ANY TREATMENT TKS DON NG
karen how are you now ?
I hope you are doing better !!! ! So much positivity your way ;)
DOn't stop fighting ;)
Was diagnosed November 26th 2018
i´m so sorry ... can i ask how u notice "it" symptoms?
how are you doing ?
@Thomas Vanderberg 11/26/18 was also the day Stephen Hillenburg died.
My best regards to you and your family. Horrible, cruel disease. I lost a dear friend to this bugger.
We call it Motor Neurone Disease here in the UK
sorry for your loss
I've been dealing with mystery illness for 4 years now. The part that got me on this talk was when the doc said the leg spasms are not priority of the patients symptoms. I have those spasms in my leg and never did it come up with my doctor.
I'm slowly getting worse and since I can't work like I use to I have no insurance.
The worst part is society- like this guy said ' sounds like getting old" I'm so tired of people saying " welcome to getting old".
I've been diagnosed with chronic fatique- but I think its either MS- Lyme or hopefully not ALS.
+jackchorn
hI JACK SO FAR HOW I YR SO CALLED ALS OR WHAT
i AM A SUFFERER TOO
TAKE CARE FRIEND
DON NG
jackchorn remember there's many things that can cause twitching even discs n other desease s even medications
But not all start w muscles twitching my dad did
Some start w not swollow if or talking well or like u said tired fatigue like I hv
N my legs upper twitches to so I am Lil nervous to
@@lidyalu5371
Me too!
I don’t know if you are on Blood Pressure meds, but I can tell you first hand, the side effects can be horrible: fatigue, depression, dizziness, aches and pains that become unbearable. Just an FYI.
This is a old post so not sure if the message will get to you and hopefully it will because I just lost my brother to ALS , if you able to still walk, talk, type, eat, it's definitely not ALS as it works quickly!! Yes it started off with the nerve twitching but not random twitching I'm talking about turn on a machine and let it run twitching as my brother's arms never stopped, then it moved to his chest, later legs and I believe his starter with his upper body because his speech was slurred pretty early on and we all thought he was drinking or maybe started drug's 😢 I think back to all the times I argued with him screaming WTF are you on and why would you start now when you never did this your whole life!?? He just use to say, I didn't take nothing and I'm not drinking! Sadly the speech went from slurred to a heavy raspy voice that was hard to make out any words and he was so stubborn refusing to go to the doctor until his wife got so mad she packed his suitcase and told him, LEAVE! I won't watch you die in front of me!! By this time maybe a year and a half had passed and he was dragging one leg his hands wasn't working well he was having problems swallowing choking alot especially on water getting skinny, his wife would have to shave his face help him shower tie his shoes, we thought he had a stroke but it didn't make sense to us because stroke is usually one side of the body when he was obviously having issues all over. sadly with ALS once it starts if your lucky maybe 5 years but by year 4 trust me you wouldn't even be able to hold your phone to type ! My brother lived not even the 5 years they give once it started every day he woke up something else in his body stopped working I remember one side of his throat was paralyzed but he was still able to eat because his wife would smash the food like you would for a baby and feed him little bites with her fingers he couldn't open his mouth wide for a spoon but she made sure he ate 3 times a day and forced the protein shakes and ensure she would sit in front of his face and wouldn't leave him in peace until he drank it all. She was devastated they had only been married 4 year's just bought a beautiful house out in the country spent a year fixing the inside how they liked and then all of a sudden to be told he will die in maybe another 6 months? My brother was young, he died Christmas night 2023 maybe 7:00pm we had him on a morphine drip so he wasn't in pain or struggling he just took a last breath and was gone😢 he lived 2 years after the first signs of the twitching started. At the end he was 82 lbs from 225lbs he could no longer eat, or drink, the last thing to go is the lungs as it takes the brain to send the signals to breath.
17 years later and I finally learn about what took my mom
It can be slow it can be fast. I wouldn't consider it lucky or unfortunate to have either. My dad died from ALS 18 years ago im 29 now I'm afraid to have children, we really don't know if it's genetic or not. My dad though was 6,1 200lbs and after diagnosis died 11 months later at around 120 lbs. I wouldn't wish this disease on my worst enemy. I'm working right now to save money go to a decent university and learn more and have myself, my DNA/genetics tested to help the world understand ALS. I really wouldn't wish it on my worst anyway people that have mentally and physically harmed me, I would never wish advanced als on. My dad was diagnosed at 49 and died at 50. In his last few months of age 47 muscle spasms and loss strength and balance was when he searched for a diagnosis it took months and multiple doctors to diagnose it. He assumed he had it before he was even diagnosed the doctors in our area east tennessee USA don't know much at all about it. Especially as on set and aggressive as his was. I'm not going to be some go fund me type person, but I would hate to know that anyone I do or don't know go through that, to the point I'm afraid to procreate. I'm going to post this on multiple videos on YT and enet in general, if someone or a lab anywhere wouof like to sample my genetics please contact me. I'd do anything to atleast try to help prevent someone go through advanced muscular sclerosis.
Sounds a bit like my dad. He died aged 58 in Aug 2007. He was a Vietnam vet, supervisor of our small town ambulance, strong and in the National Guard and just a very very kind man/father/husband. He had it for at least 7 years from the day of diagnosis. But he may have had symptoms for a while before that. It was very shocking and sometimes I feel it's a dream I'm living in that I dont have my father and my kids dont have a grandfather 😔
Anytime I get muscle twitches or feel tired I think I may get it later on in the future. I'm 44 now so who knows?
I will never understand this disease I was caregiver for my uncle who was diagnose in may2013 and passaway in aug.27,2013 how long did have this and no doctor in Puerto Rico couldn't find this until I bought him to n.j. Rip uncle luie luv u always
Stay strong. Sorry about your bro. in law.
As soon as he named the first symptom my hypochondria flared up.🤦🏽♀️
These are wonderful folks..Thank you.
And still no cure??
+@@vishveshtadsare3160
Your god has been unable to cure for THOUSANDS of years.
My mother died from ALS and in the small country region we live in there have been 8-10 deaths from ALS. They call them clusters. I wish there were more info into clusters.
on the island of Guam ALS was linked to exposure to blue algae. Those people were 15 times more exposed to ALS than the rest of the world.
Oh wow. Very interesting! Sad too =(
@@applejellypucci this is a serious question. Like a antivenom for snake or spider bites is it possible that maybe more research on blue algae might hold the answer to a cure? Has there been any research on blue algae that says how its causing ALS in Guam? Thank you I'd appreciate a reply
My 43 year old daughter has a friend her age was just diagnosed a couple months ago and it’s fairly advanced. Praying for a cure 🙏🙏🙏
In what greater region was this?
The beginning signs with my brother was twitching all his nerves in his arms and chest would constant twitch. He is at end stage now in a bed on a morphine drip as everything in his body stopped working now.😢 We are so devastated my brother is young and was so healthy had his own construction business use to freaking run huge machines, now he is 90 lbs and just a skeleton that looks 80 years old instead of his 44 years. At least he's nice the Emergency room told my brother and then told us, sorry he had ALS he's going to die in a few months didn't offer any resources or information just sent us on our way. Then we took him to a neurologist who said I think it just had a stroke. Yeah, sorry when you have ALS they can't do anything so they don't even try...
Heart spasms are the worse scariest part for my brother.
my dad has been taking statins from 2017 and got diagnosed with ALS in 2020, and passed away this year
My aunt died from ALS (Lou Gehrig's Disease). She had the disease for approximately 40 to 50 years. It started in her feet and worked its way up the body until it cut off her respiratory system. My uncle was her caregiver and it was excruciating on him physically and sleep-deprived. Unfortunately, it took a toll on him and after she died, he died from cancer a few years later. Sad
This video from 2012, five years later, anything new?It is so tiring ! Give us something new!
Ever heard the saying, "You get what you pay for" or about, "Beggars cant be choosers" ? Yet time and time again its people just like yourself (Marina Melnik) who aren't paying for anything who whine and complain the most.
See Cuehlo’s video from Portugal. It’s all diet. It’s the sugar.
I remember reading about when Lou Gehrig went to the Mayo Clinic. The doctor that he originally saw recognized Gehrig had ALS immediately, although he put him through a battery of tests to confirm his suspicions. It turned out that the doctor’s mother had died from that very same disease.
I just had genetic testing done yesterday, so nervous. I don't have ALS but been having a lot of twitching lately and weak hand. Scary.
how are you now ?
@@thomasvanderberg6435 I'm doing okay! I have rheumatoid arthritis but not ALS. Thank you for asking, Thomas.
@@applejellypucci Hi April I also have a lot of twitching or "pulsing" of my thigh muscle. Im glad you don't have ALS. Im always thinking I may get it later on...my father died of ALS in 2007 aged 58 =(
@@texastea5686 🤯🙁🙁
Nerve damage is what I was diagnosed with in neck area and back. I had weakness on my left side off and on. MRI and EMG were run and canceled out my fear of ALS and multiple sclerosis.
For reference, thank you for sharing.
Great video.
I know of two men who had ALS.. both of them were VERY competitive athletes (as was Lou Gehrig).. pushing their bodies to extreme fatigue..Could this be a contributing cause to this disease?
i'm currently researching ALS for my own self, and found a lot of connections between exercise and ALS, whether that be athlete standard or a lover of weight lifting and active lifestyle. *gulps looking over at stack of gym clothes cleaned ready for a new week*
holy shit i have alot of fasciculations all over my body
Has a study ever been done to rule out heavy metals toxicity being a Culprit? Heavy metals acting as deflective blockers of neuropathways? Like detoxing the metals and monitor symptom progression or digression? If everything is electrical bio communication, would it not stand to present a problem when metals toxicity is introduced to that neuro communication?
medical doctors will most likely not make any headway with the disease. So they should not put down what others are doing.
The DR's are selling hope that will never arrive !
Depressing video. In summary, it says there is no cure (and no hope). They knock all "alternative therapies," BUT...what would a person have to lose by trying something besides what THEY offer??? I had a cousin who died a slow, grueling death from this disease (in his 40's) and it was so heartbreaking.
Its called fast twitch muscle fibers that is missing and why muscle atrophy
I was just diagnosed on November 4th 2022....I am scared to death!!!!!
How is it going?
That disease scares me😫
My heart goes out to all those people with ALS I have to say that from the complexity of the disease there will never be a cure People with the disease need to be educated on the options they have in dealing with the disease as it progresses
ice bucket challenges are to raise awareness and if you dont do it you are supposed donate money it has raised lots of money so far
Thank u for the info
Who are these guys usually starts with upper and lowerBody muscular weakness
Als ice challenge is too make u feel how it feels for a second
So much money raised and the ALS patients keep dying !
the dr. answering the questions is purposefully withholding information.
What makes you say that?
What a new treatment please tell me als mnd
Have we had any positive outcome with the stem cell trials since this video has been made please?
Yes, for sure. Check Nurown and others. It might be available in a year or two.
Any medicine that they say "we really don't know it might help but we can't tell" is nonsense. Like what he said about the one drug available. And right after that he bags on the other stuff out there that also does not work.
If this disease didn't existed, Stephen Hillemburg wouldv'e fix SpongeBob and make the best movie ever :(
Anyone know someone with the ultra-rare respitory onset?
12.5% of the 48 reversals, in other words 6 of them, involved curcumin. food for thought.
It’s sugar that is the cause. See Cuehluo’s video from Portugal. He stopped the progression with diet.
apparently 7 of the reversals used curcumin and it may have to do with changes that occur in the microbiome. and it cant be sugar that is the cause, people eat loads of sugar most of them never develop anything even remotely similar to ALS.
I feel I may have this and the Veterans Administration isn’t helping. Is there anyone that can help me with this?
You need to go to a neurologist. Not sure what part of the world your in. Als sucks!
what does this have to do whit ice buket challanges?? can someone explain
It shouldn't have anything to do with a damn Ice Bucket Challenge. That's just a damn gimmick for people without diseases who are craving attention. Things like that piss me off. "Oh it brings awareness" excuse me but fuck you! You know what else brings awareness? This video brings awareness, if people were to post facts on their walls and share info about the disease, that would spread awareness and having a link everywhere would spread a way to donate money to the cause. I can't stand watching douche bags douse themselves in cold water and act like they're doing it for a cause. Good deeds should be done of freewill and not for your own glory.
Very informative video.
Radoslaw Smaczny Being that the ALS Ice Bucket Challenge was started by an Individual with ALS, you can go fuck yourrself.
Lee Tamakloe And to you I say fuck you as well ;)
It simulates the feeling of paralisys when you dump the ice water on you.
Radoslaw Smaczny my father has ALS maybe if you had a member of the family that suffers from this sick disease you might appreciate the need for a cure, it does create awareness and although there is people who did it for attention it still creates awareness and has raised millions. Personally the handful of people making a big deal out of this are the ones seeking attention, if you dont wanna do it fine, but its rather pathetic to sit their and moan about one of the only good things that can come from social networking
That doctor was GREAT in Jurassic Park. ha! All joking aside I have a bad degenerative nerve disease, though I don't know what it is yet. Started as Tourettes.
Thanks for the good in depth discussion guys.
I've had trouble swallowing for around the last 30 years, I've been medically checked out (with endoscope etc) and there's no obvious cause. I'm now in my early 50's. I've been physically active, virtually all my life, and I've now developed fasciculations, mostly in my left rear upper thigh muscle now, for the last 7 months. When can I expect it to develop into the next stage and start to experience muscle weakness, slurred speech, clumsiness, atrophy etc, or, if it isn't going to progress any further, when can I safely assume that I haven't got ALS? Thanks.
Check your b12 levels?
You don’t have ALS. There now you know.
Trying to undo what is, ice buckets challenge just stupidity fun game until someone die.
well as usual the Doctor's got Richer and the People keep dying .... ice bucket ?
I bet you that if you put the person in a pitch black room with sound proof headphones on, and put the person in a childs cradled position or slightly upside down (anything with sharp grade), that this will help fix it. The shit moves slow but it should help. Its like some wires that got crossed or are too close to each other. Im getting crosstalk so I move groups of muscles that have dominance over their partner. Hand connected to wrist to elbow etc. But your hand is lower than the rest of you at rest, however it is owned by your shoulder. Commonly dominant. Cant find where my muscles are now but I know that the amount of pull I have over certain muscles is much greater and I've lost the ability to deflate them and relax. I reach through now in long paths that hurt my head and hand. The more I try to escape the more I am trapped, but technically, if you disrupt that crosstalk for a magical set period of time the rest of the persons muscles will give up, as long as this happens in the correct order the person will not progress. Also, anything anti gravity, swimming, even imagining any of these things help. I all of a sudden get a huge rush of blood and can actually feel some individual parts of my limbs as of current.
This is really insightful !!! ! Thank You
Much good vibes I am sending to You from CroatIA !!! ! ;)
Soccer players have. Developed CTE. Heading the Ball.make more. Films
The cause of this disease is super confusing.
Amalgam
but i thought disease was curable and disorders werent.
That's, uh, not how the world works.
I once got cured of generalized anxiety disorder. I mean, it came back, but I had gotten cured and stayed that way for a few years. There are some types of epilepsy that can be cured and some that can't. One of my friends has one of the ones that can't be cured. My mom has three autoimmune diseases, none of which can be cured. Sometimes, people use the words "disease" and "disorder" incorrectly to describe something that is really more of a disability. But "disease" and "disorder" can usually be used interchangeably.
I did some research and ALS is caused by mitochondrial dysfunction that is caused by exposure to certain pesticides in gardening and agriculture, formaldehyde in diesel/jet fumes, formaldehyde in corpse preservation, pathegons in algal blooms in dirty water. As a result the following professions are higher risk for developping ALS: Professional outdoor sport players, professional gardners, professional pilots and truck drivers professional water skiers, militairy personal; and funeral directors
At least Jesus will wake them in resurrection john 5:28,29
Jehovah God exodus 6:3 made that possible through His Son,s sacrifice
N thy will be back on new earth coming soon psalms 37:29-34 including my father who passed from als
Thank you drs and researchers for all you are doing in way of advancements, in medicine and quality of life
We need to help these patients who literally cannot move n then know they will die horribly suffocating
I feel they need to have choice of going into a coma or something so they are not aware of it in the very end
My dad died gasping for air n fell off hospital bed he was suffering
+ Lidya Lu
If your Jesus or your Jehovah, or your so-called holy spirit cared so much, he/they/it would not allow such a horrible disease to afflict any one in the first place. Take your empty, meaningless, god-related garbage elsewhere.
@@yevodee4024 Ignorance is bless and you know not what you say, it is written in the HOLY BIBLE that they will be deaf and blind, so from a deaf and blind prospective how can you see or hear,. Such profound meaning...
+ Pamela
The REALLY HEINOUS MONSTERS are people who peddle *false hopes and false promises in the name of some god or the other,* but offer not a shred VERIFIABLE evidence whatsoever.
It is THEY, and their *supporters like you* who are so utterly shameless, that I can't even ask you to be really ashamed of yourselves.
*Genuine medical benefits are the result of hard work done by sincere scientists and doctors (using the principles of science), and NOT the handiwork of any god of any religion.*
I have a very close and deeply beloved family-member who is afflicted with ALS. Whatever succour is provided to this person, comes from science, and *NOT from any god of any religion.* So take your self-righteous pontification elsewhere.
@@yevodee4024 @yevodee:
Didn't you not read where Lidya wrote that she thanks the *doctors* and the *researchers* for all that they are doing??!!
Therefore, it was unnecessary you writing in bold letters, that medical benefits are the result of hard working scientists and doctors.
That was already made clear by Lidya.
To say you're going through the same thing as Lidya, with a dear family member suffering with ALS, we'd expect you to write words of sympathy and be supportive and understanding - instead, you come on here to pull Lidya down, cause offence and attack them for their personal way of coping, beliefs and hopes for the future.
Do you honestly think it's right to treat another person in a similar situation to yourself this way.🤔
@@yevodee4024 Sinners deserve such horrible diseases. Only those who are in Christ Jesus are sinless.
Ps fu too
this was all just a big commercial for UCSD lollll
It’s the sugar people. Stop eating sugar and carbs.
Let me get this right...Buddy at the beginning is an MD and doesn't know what ALS stands for?
He's asking the questions not for himself--he already knows...he's asking the questions to inform the viewers.
And has difficulty in the pronouncing of a disease??? Condescending, perhaps??
Dont thank Jesus! THank your doctors and medicine and treatment and family and the real things in your life that will actually help you...
+ pgoody
I agree. These pathetic god-advocates and their empty, meaningless, so-called assurances are utterly disgusting.
@@yevodee4024 you're disgusting for saying that!
+ @@TheKeetkeet66
And you are a self-deluding, self-righteous *MORONIC SCOUNDREL* if you put your faith in some imaginary being (who, if he/she/it exists, does not care about the world).
pgoody thank Jesus for create doctors..nurses..therapists...and family....because without Jesus nothing would be possible.
+@@luluirizar7281
You said, "without Jesus nothing would be possible".
That means ALS is possible only *BECAUSE* of Jesus. A very kind-hearted god you have there, I must say!
so its been 8 years since this interview, any progress?
Pharma has become even richer than it was eight years earlier.
Then why did it take so long for my cousin to be diagnosed?
My husband is being tested for that disease, any advise?
This is so unbelievable!! How can I ever explain to the world that Dr ALUDA on RUclips cured my (ALS) with his herbal medication. i feel so happy and excited..