Sadly John passed away a month after this was posted. ALS is the worst disease we face. More research and funding needs to be invested into finding 1) Better Diagnosis 2) Prolonging treatments. A cure would be great, but lets start with giving time to these patients. Diagnosis can take 1 year after all the tests required. That is unacceptable.
That's so sad but at least he's no longer in pain.. I figured he had just passed since it posted I didn't realize she passed her month afterward..RIP John..
Plus this disease has been around since Lou Gehrig first has it in 1939. How have we not found a cure? Someone is slacking off or prolonging the fact that there really is one.
@@donnarowlands6426 The disease was actually discovered in the 1860s but only became a common part of language when Lou Gehrig was diagnosed. Sadly, the amount of $ needed for these (and all other terrible diseases) is beyond measure. I was just wondering how many people would go without that extra lane on the interstate or a little narrower of a sidewalk, less research into moth mating habits....so the funding could go to research? How many people would be willing to give up one or two nights a year going out to eat? Then, though, how do you divide it among all of the illnesses?
They can diagnose it. Sadly they have experimental drugs proven to help but they are not FDA approved and very few have access to the trial drugs. This is very sad.
I am from Finland. My mom died of ALS back in 2006. There was,in the near town,a whole family who died of this.I was really afraid and had many tests and ... still alive. I have the most respect for all dealing with this !
I’m an identical twin who lost her twin. You need to know your bro has no ill will for you surviving. You keep him alive in your heart/memories. That’s where he continues to live. This sounds stupid yet you’ll understand soon enough. May God bless you. Lodie
So Sad....However, at least they have each other to go through it all. I have a Autoimmune disease and sometimes my anxiety gets so bad that I wish I was a Siamese twin. This is a horrible disease that needs desperate attention. I worked in Hospice as a RN about 15 yrs ago and trust me it’s NOT rare and it also DOES strike the young. I had 4 patients myself during that time with ALS. 3 under 40.....one was just 27.
These brothers are so admirable! My own twin died from ALS 4 months ago. We are fraternal twins but that doesn't mean I don't carry risk. I am 56 so already had 4 children. However, no one in our family ever had this before. My twin refused to see a Dr and treated what she claimed was mold and candida with a homeopathic nurse practitioner. This said, her treatment only hastened her end. She hiked 4 miles only 8 months before she passed on. She was able to hike 6 miles one year before her death. Her form was very aggressive. I supported my twin very well and did my best to help her. She would not listen to me about seeing a dr though. I will be paying close attention to any symptoms as this is a disease that REQUIRES a doctors care! We have Doctors for a reason and these men knew to seek medical help. Bless them for supporting each other.
Mold and funguses, can indeed, cause ALS. However, very few doctors in the country know how to treat something like this, Practically zero neurologists know anything about culprits, much less, nurse practitioners. This is one of those situations, where you must do your own research and treat yourself, with the help of at least a couple of doctors.
@@deadlift305 Yes we all feel mold and candida helped activate ALS. We never wanted her to stop doing what she felt would benefit her but a scoundrel of a homeopathic took many thousands of dollars claiming she could CURE her! Our wanting her to see a Dr was further complicated by the quack telling her she was CY450. So she believed a Dr would just kill her with medications. The hospital tested her during her last two weeks of life and stated that this wasn't true. When she had a firm diagnosis 2 months prior to her death, they offered her a medication which would afford her 3 to 6 more months of life and slow down the symptoms...she said NO. I asked her why and she sneered...you know I have CY450 and whats 3 to 6 more months? It was vital time she could have put her last time on earth being cared for privately. Instead she chose Comfort Care which was a nightmare and it took 2 agonizing weeks for her to die. She was talking and it wasn't her time...she chose this option after her second hand curled up.
Not having genetic children to try and stop this from affecting the next generations of the family is such a selfless act. Future generations hopefully won't have to watch their loved ones deal with this terrible disease as we dont know how long it may take to figure out the cause/treatment for it. God bless this whole family.
ALS isn't always genetically inherited. I had a boss who passed away from it. It was sporadic. But yes, IF you know it is in your family, then don't have children. But then if your children don't have the gene, then the disease stops. Tricky thing.
The fact they chose not to have kids and pass it on is so selfless and admirable! Many people should learn from this. Bless this family. ALS is horrendous.
Wow...that was an amazing story... identical twins with the same disease... progressing so differently. Michael is going to be devastated when John dies...it is just heartbreaking. And the decision for none of the siblings to have biological children...you can only control so many things in life... to end their family struggle with this horrible disease was the best choice that they could have made. Finally, who are the two people who voted thumbs-down on this? I mean, are you just heartless or what?
Wow I thought my twin and I were only ones! We both have COPD , both had symptoms so much alike ! And we Are only 50! whatever happens to one I know sooner or later she will get or I! Our Dr. Is so fasinated cause it's been since childhood, to having our first child , it would take to long to say! But God Bless these two! Hope they go together cause that's what I want with my twin! To live without her would kill me anyway! I couldn't cope with that loss!!
Wow! Two amazing guys with a life changing and debilitating condition. I have a severe and progressive movement disorder similar to Parkinson's Disease, but not fatal. I wish that ALS wasn't and I pray for those suffering with it and pray for a cure. My friend's daughter just passed away from it last week at the age of twenty-one and extremely fast.
My husband and his younger brother both died four months apart. Same manifestation of symptoms. Als is brutal. No excuse for the government to forget als God bless you
You are a true warrior. I admire your strength. I'm sorry for your loss. May God bless you and keep you may his face shine upon you and give you peace.
The difference of onset and varieties in their ALS must be in environment then? People without the gene get ALS as well. Often highly productive people, active people, strong people. Can it be related to oxidative stress? I so much hope the world comes together as one and fight ALS together to end it or treat it good to stop the progression of the disease.
Right but I guess it’s possible but it’s still the same disease it’s just the other twin ALS hasn’t really infected him yet & it’s break my heart how there family has died from ALS from there grand mother to there father to there uncles & the twin is being so strong his brother
Plus I would definitely get tested. Why don't they want to know? Maybe there will be a treatment to slow it down for those who are diagnosed with the genetics of the disease. Test, test and test again.
@Sandy What? I don't agree, it takes courage and bravery to WANT to know. So when they start to show signs they will have to wait a year for any kind of treatment or trials.
Als is a horrible disease…it took my mother Janet Strimel 9 months after she was diagnosed with blubar ALS …it first started in her mouth killing one muscle at a time my mom had a slight slur cause her tongue wasn’t working as good any more but als worked fast taking my mother at 64 years old ….horrible disease…I hope and pray for you guys I pray they find a cure soon …
I know this is an old vid, but I watched it and felt so sad for this family. I did not realize that there could be a genetic link with ALS. In this family's case, a genetic mutation causing it. Horrible. One of the worst diseases. I am so sorry.
@@nfrancesca8544 vaccines with toxic adjuvants, silver dental amalgams, house mold and funguses, breast implants, and awakened stealth pathogens, like lyme, bartonella, mycoplasma, polio, Epstein Barr virus, babesia, etc.
@@nfrancesca8544 vaccines with toxic adjuvants and preservatives, can cause a number of neurological and autoimmune diseases. A pharmacist would not know this information.
The whole point of a vaccine is that it has to have something that’s legitimately a threat to your body to work. Of course they have harmful chemicals in them, or else your body would not respond and creat antibodies. This is trivial.
I wonder if a large exchange of blood between the brothers could cause them to copy the healthy genes that other one does not have that's if they both have different versions of the disease their body's should favour replicating the healthy genes over the faulty ones may not work but definitely worth a try but a large transfusion, if it doesn't work, another large transfusion and shock to the system the replicates the DNA either chemically or by some other means may make the body reanalyse what DNA it should be replicating sort of like rebooting a system
@@youknowtherules8888 I didn't know the twin died but it plausible my idea may have worked, I don't know why your reply got highlighted it didn't propose anything or prove or disprove anything
Only a small percentage of ALS cases are caused by a gene. It also presents differently from patient to patient so a “cure” will not be easy. Look for prevention.
@@doctork1708 Most people just don't understand how few absolute cures there are in existence. Around 11 and they're mostly for bacterial and parasite infections. Cures are extremely rare unfortunately. As you say, prevent it.
Yeah, it's not a genetic disease, it's leaky gut syndrome. For anyone else dealing with disease or any other autoimmune disease, you are suffering from an underlying condition known as 'Leaky Gut Syndrome' that is allowing Lipopolysaccharide (LPS), an endotoxin from dead bacteria in the gut to get through the tight junctions and into the bloodstream, which causes a low-grade systemic sepsis that presents itself differently in everyone (ALS, MS, RA, IBD, IBS, Crohn's, Myositis, Lupus, Parkinson's, etc.). They are all the same disease - leaky gut and LPS endotoxin getting into the bloodstream.
Expert from same article. Although inflammatory mechanisms and immune activation have been considered as common components of the pathogenesis of ALS (Alexianu et al., 2001; Graves et al., 2004; Henkel et al., 2004; McGeer and McGeer, 2002; Simpson et al., 2004), the relevance of these processes to pathogenesis is unknown. What does that last sentence say? I seemed to missed the part of the article that explains the person's gut to be involved. Did you read the article?
That's a pretty standard sentence they use in all studies to make you doubt the efficacy of the study (wink) so you won't ditch conventional medicine and take a common sense approach of healing your leaking gut. If you search "gut" in that study you will find it, twice. And where do you think LPS comes from? Answer: The gut, lol. Here's another proving LPS to be the main driver in Alzheimer's Disease: www.ncbi.nlm.nih.gov/pmc/articles/PMC5591429/ It's the root cause of all disease.
And this sentence was also included in the ALS study: " These data suggest that systemic LPS levels and activated monocyte/macrophages may play significant roles in the pathogenesis of sALS."
Sadly John passed away a month after this was posted. ALS is the worst disease we face. More research and funding needs to be invested into finding 1) Better Diagnosis 2) Prolonging treatments. A cure would be great, but lets start with giving time to these patients. Diagnosis can take 1 year after all the tests required. That is unacceptable.
My father passed away 7 years ago from having ALS😔😔 It's a horrible condition 😢
That's so sad but at least he's no longer in pain.. I figured he had just passed since it posted I didn't realize she passed her month afterward..RIP John..
Plus this disease has been around since Lou Gehrig first has it in 1939. How have we not found a cure? Someone is slacking off or prolonging the fact that there really is one.
@@donnarowlands6426 The disease was actually discovered in the 1860s but only became a common part of language when Lou Gehrig was diagnosed. Sadly, the amount of $ needed for these (and all other terrible diseases) is beyond measure.
I was just wondering how many people would go without that extra lane on the interstate or a little narrower of a sidewalk, less research into moth mating habits....so the funding could go to research? How many people would be willing to give up one or two nights a year going out to eat? Then, though, how do you divide it among all of the illnesses?
They can diagnose it. Sadly they have experimental drugs proven to help but they are not FDA approved and very few have access to the trial drugs. This is very sad.
I cried and cried watching this. What a beautiful family with such deep love for each other. May the lord bless them with a cure.
This breaks my heart! Oh why did I watch this! Praying for them !
I am from Finland. My mom died of ALS back in 2006. There was,in the near town,a whole family who died of this.I was really afraid and had many tests and ... still alive. I have the most respect for all dealing with this !
Hirvee Hepuli, I’m a Swedish woman with my from Estonia. What an awful story of the whole family. I hope you are well. Best wishes. 🇫🇮🇪🇪🇸🇪
God bless ❤
John did pass away in 2017 but I haven't heard what happened to Michael.
Two wonderful men! I love you guys!
I’m an identical twin who lost her twin. You need to know your bro has no ill will for you surviving. You keep him alive in your heart/memories. That’s where he continues to live. This sounds stupid yet you’ll understand soon enough. May God bless you. Lodie
The thing with being genetically identical is that your twin literally and figuratively lives on in you. You are him and he is you. ❤
It's one Ruthless disease #ALS #nocure..
I was recently diagnosed and scared to death of what lies ahead
How are you four years later?
How you are doing now, in 2024?
So Sad....However, at least they have each other to go through it all. I have a Autoimmune disease and sometimes my anxiety gets so bad that I wish I was a Siamese twin. This is a horrible disease that needs desperate attention. I worked in Hospice as a RN about 15 yrs ago and trust me it’s NOT rare and it also DOES strike the young. I had 4 patients myself during that time with ALS. 3 under 40.....one was just 27.
These brothers are so admirable! My own twin died from ALS 4 months ago. We are fraternal twins but that doesn't mean I don't carry risk. I am 56 so already had 4 children. However, no one in our family ever had this before. My twin refused to see a Dr and treated what she claimed was mold and candida with a homeopathic nurse practitioner. This said, her treatment only hastened her end. She hiked 4 miles only 8 months before she passed on. She was able to hike 6 miles one year before her death. Her form was very aggressive. I supported my twin very well and did my best to help her. She would not listen to me about seeing a dr though. I will be paying close attention to any symptoms as this is a disease that REQUIRES a doctors care! We have Doctors for a reason and these men knew to seek medical help. Bless them for supporting each other.
Mold and funguses, can indeed, cause ALS. However, very few doctors in the country know how to treat something like this, Practically zero neurologists know anything about culprits, much less, nurse practitioners. This is one of those situations, where you must do your own research and treat yourself, with the help of at least a couple of doctors.
@@deadlift305 Yes we all feel mold and candida helped activate ALS. We never wanted her to stop doing what she felt would benefit her but a scoundrel of a homeopathic took many thousands of dollars claiming she could CURE her! Our wanting her to see a Dr was further complicated by the quack telling her she was CY450. So she believed a Dr would just kill her with medications. The hospital tested her during her last two weeks of life and stated that this wasn't true. When she had a firm diagnosis 2 months prior to her death, they offered her a medication which would afford her 3 to 6 more months of life and slow down the symptoms...she said NO. I asked her why and she sneered...you know I have CY450 and whats 3 to 6 more months? It was vital time she could have put her last time on earth being cared for privately. Instead she chose Comfort Care which was a nightmare and it took 2 agonizing weeks for her to die. She was talking and it wasn't her time...she chose this option after her second hand curled up.
Rest in peace John. I think Michael is still living.
I can't express the pain in my heart for your entire family. God bless each of you!! ❤️❤️🙏🏻🙏🏻
They are blessed to have eachother.
Doctors please find the treatment for ALS want to save my mother.
So sorry to hear this., We also lost a family member to ALS. Prayers .❤🙏
My heart still hurts when he said he wanted to take away his brothers Pain.
Man that part got me cause I’d do the same for my little brother .
The power of love . My heart goes out to the twins .
Not having genetic children to try and stop this from affecting the next generations of the family is such a selfless act. Future generations hopefully won't have to watch their loved ones deal with this terrible disease as we dont know how long it may take to figure out the cause/treatment for it. God bless this whole family.
ALS isn't always genetically inherited. I had a boss who passed away from it. It was sporadic. But yes, IF you know it is in your family, then don't have children. But then if your children don't have the gene, then the disease stops. Tricky thing.
Shame most ALS is not genetic so still be around. Huntingsons diesease woukd be wiped out
The brothers had children.
It's likely caused by physical trauma otherwise.
Imagine ppl with Huntingtons could completely elimate the disease if they made the selfLESS act to not have bio children.
It's crazy how often it affects physically active people.
You mean athletic?
The fact they chose not to have kids and pass it on is so selfless and admirable! Many people should learn from this. Bless this family. ALS is horrendous.
Um no. We need a CURE
@@Ishudputsumthingcoolum yes. until then , not having kids and continuing the gene is the best .
Wow...that was an amazing story... identical twins with the same disease... progressing so differently. Michael is going to be devastated when John dies...it is just heartbreaking. And the decision for none of the siblings to have biological children...you can only control so many things in life... to end their family struggle with this horrible disease was the best choice that they could have made. Finally, who are the two people who voted thumbs-down on this? I mean, are you just heartless or what?
John died a month after this video.
What great brothers they are to each other.
Wow … none of them decided to have kids …
That’s admirable ❤
What a great family !
Raised right with love 💗
Wow I thought my twin and I were only ones! We both have COPD , both had symptoms so much alike ! And we Are only 50! whatever happens to one I know sooner or later she will get or I! Our Dr. Is so fasinated cause it's been since childhood, to having our first child , it would take to long to say! But God Bless these two! Hope they go together cause that's what I want with my twin! To live without her would kill me anyway! I couldn't cope with that loss!!
This is so sad. One will not last long without the other. 🙏🏻
Short Video, But sad 😢 it really Freak me out that so many in their family has had ALS .. I pray that one day soon they will find the cure for ALS
Wow! Two amazing guys with a life changing and debilitating condition. I have a severe and progressive movement disorder similar to Parkinson's Disease, but not fatal. I wish that ALS wasn't and I pray for those suffering with it and pray for a cure. My friend's daughter just passed away from it last week at the age of twenty-one and extremely fast.
wow...21 yrs old 😮
Gut wrenching....god bless this beautiful family. Xxx
Very heartbreaking. So sorry 💔
My husband and his younger brother both died four months apart. Same manifestation of symptoms. Als is brutal. No excuse for the government to forget als God bless you
Were they twins?
Stay strong. Will be praying for you guys.
Praying doesnt work
So incredibly sad.
You are a true warrior. I admire your strength. I'm sorry for your loss. May God bless you and keep you may his face shine upon you and give you peace.
ALS has to be linked to a lot of excersize. There seems to be that common denominator.
Denise Spurlock nope I have ALS and I exercised very little.
Your right most peoples got this waiter are athletic or doing exercise a lots
Sending you both, you all , so much love and a great big gentle cuddle from England. 💝
My brother has A!S and my mother and uncle has died from it.
The difference of onset and varieties in their ALS must be in environment then? People without the gene get ALS as well. Often highly productive people, active people, strong people. Can it be related to oxidative stress? I so much hope the world comes together as one and fight ALS together to end it or treat it good to stop the progression of the disease.
Absolutely heartbreaking.
The epigenetic will trigger the gentic trigger.
Sod can be triggered by copper/zinc deficiency.
The microbiome must be studied
Heartbreaking, bless them their families and anyone in the same position, we must try to find a cure.
I think the thing that makes the nurown treatment work is the anabolic steroid injection the patients receive not the stem cells they inject
How can identical twins have the same disease but one is worse than the other? I would think they would both be on the same level of progression
Right but I guess it’s possible but it’s still the same disease it’s just the other twin ALS hasn’t really infected him yet & it’s break my heart how there family has died from ALS from there grand mother to there father to there uncles & the twin is being so strong his brother
My brother passed 6/2/2004 from ALS.
6 years later, Michael is still working for a finance company and doing well.
Unbelievable family! ❤️
Smart and brave not to have children. It would be hard to pass this on to your precious kids. Bless this family. ❤
Plus I would definitely get tested. Why don't they want to know? Maybe there will be a treatment to slow it down for those who are diagnosed with the genetics of the disease. Test, test and test again.
@@donnarowlands6426 it takes a LOT of courage to want to know.
@Sandy What? I don't agree, it takes courage and bravery to WANT to know. So when they start to show signs they will have to wait a year for any kind of treatment or trials.
@@donnarowlands6426 lol. Exactly what I said
@@sandywhat2429 so they need to muster up some courage.
John died on December 29th, 2017 but I don´t know about Mike.
So sad. My heart breaks for this family.
Man when he said he would trade places with his brother hit hard .😢
Wow... heartbreaking...such a amazing family ❤️
Als is a horrible disease…it took my mother Janet Strimel 9 months after she was diagnosed with blubar ALS …it first started in her mouth killing one muscle at a time my mom had a slight slur cause her tongue wasn’t working as good any more but als worked fast taking my mother at 64 years old ….horrible disease…I hope and pray for you guys I pray they find a cure soon …
This poor family ;(
God protect you both .
My dad just passed away from ALS...
RIP John 🙏🙏
Very wise of them not to have children, so that cruel disease ends with those 4 siblings.
I'm so sorry, I feel there sorrow...
I'm wearing one of them breathing machines it looks just like it with the same nose piece and hook up tubes.
Dear Lord how horrible for these poor men. This disease killed my sister.
Please help me I'm suffering ALS disease one year sir please help
WE NEED A CURE
heartbreaking
I saw a set of twins , one had it and one did not
I have it and it so sad!
So sorry. How are you doing now ?
I know this is an old vid, but I watched it and felt so sad for this family. I did not realize that there could be a genetic link with ALS. In this family's case, a genetic mutation causing it. Horrible. One of the worst diseases. I am so sorry.
Must have ate the exact same things too
H Martin so what bitch?
They were also triathletes. I'm sure as healthy as their lifestyles were before, genetics had the last say.
that is not fair! not fair! My GOD Bless the brothers!
Bless them please Universe 🙏 ❤
What a shame it sucks
I lost my Son from ALS 2 years ago. One word. Vaccines.
You think vaccines gave him ALS?
@@nfrancesca8544 vaccines with toxic adjuvants, silver dental amalgams, house mold and funguses, breast implants, and awakened stealth pathogens, like lyme, bartonella, mycoplasma, polio, Epstein Barr virus, babesia, etc.
@@deadlift305 vaccines don’t give you ALS
Ask a pharmacist
@@nfrancesca8544 vaccines with toxic adjuvants and preservatives, can cause a number of neurological and autoimmune diseases. A pharmacist would not know this information.
The whole point of a vaccine is that it has to have something that’s legitimately a threat to your body to work. Of course they have harmful chemicals in them, or else your body would not respond and creat antibodies. This is trivial.
I wonder if a large exchange of blood between the brothers could cause them to copy the healthy genes that other one does not have that's if they both have different versions of the disease their body's should favour replicating the healthy genes over the faulty ones may not work but definitely worth a try but a large transfusion, if it doesn't work, another large transfusion and shock to the system the replicates the DNA either chemically or by some other means may make the body reanalyse what DNA it should be replicating sort of like rebooting a system
I don’t think that’s how DNA works. Plus the other twin died already.
@@youknowtherules8888 I didn't know the twin died but it plausible my idea may have worked, I don't know why your reply got highlighted it didn't propose anything or prove or disprove anything
Both als haw come?????
The body is different then genetics. The body is the shit that comes out of genetics.
wow
ALS and hope are mutually exclusive; where there's ALS, there's no hope.
Defund military fund disease research
So sad
🙏🙏🙏❤️
They know it’s a genetic mutation, now for a cure!❤️
Only a small percentage of ALS cases are caused by a gene. It also presents differently from patient to patient so a “cure” will not be easy. Look for prevention.
@@doctork1708 Most people just don't understand how few absolute cures there are in existence. Around 11 and they're mostly for bacterial and parasite infections. Cures are extremely rare unfortunately. As you say, prevent it.
Yeah, it's not a genetic disease, it's leaky gut syndrome. For anyone else dealing with disease or any other autoimmune disease, you are suffering from an underlying condition known as 'Leaky Gut Syndrome' that is allowing Lipopolysaccharide (LPS), an endotoxin from dead bacteria in the gut to get through the tight junctions and into the bloodstream, which causes a low-grade systemic sepsis that presents itself differently in everyone (ALS, MS, RA, IBD, IBS, Crohn's, Myositis, Lupus, Parkinson's, etc.). They are all the same disease - leaky gut and LPS endotoxin getting into the bloodstream.
Oh really doctor, where can I read your findings?
www.ncbi.nlm.nih.gov/pmc/articles/PMC2995297/
Expert from same article.
Although inflammatory mechanisms and immune activation have been considered as common components of the pathogenesis of ALS (Alexianu et al., 2001; Graves et al., 2004; Henkel et al., 2004; McGeer and McGeer, 2002; Simpson et al., 2004), the relevance of these processes to pathogenesis is unknown.
What does that last sentence say?
I seemed to missed the part of the article that explains the person's gut to be involved. Did you read the article?
That's a pretty standard sentence they use in all studies to make you doubt the efficacy of the study (wink) so you won't ditch conventional medicine and take a common sense approach of healing your leaking gut. If you search "gut" in that study you will find it, twice. And where do you think LPS comes from? Answer: The gut, lol.
Here's another proving LPS to be the main driver in Alzheimer's Disease: www.ncbi.nlm.nih.gov/pmc/articles/PMC5591429/
It's the root cause of all disease.
And this sentence was also included in the ALS study: " These data suggest that systemic LPS levels and activated monocyte/macrophages may play significant roles in the pathogenesis of sALS."
Look into spiders and pregnancy
Wtf
Amazing people. God bless them