It's 10 years later, 2024, and there is at least one promising (genetic sort of) ALS medication, Tofersen, just for 1 % of the patients, and last year, in 2023, a young (german?) woman was the first patient to get healed, she got Tofersen in the US, I think, Prof. Markus Weber from Switzerland (St. Gallen) helped her to get it in the US, and she apparently has quite defeated, overcome, ALS, i.e. the genetic variant. - My best friend just got diagnosed this year, in Germany, in his mid sixties, quite a funny, kind, highly intelligent, extraordinary guy, too, and I am shocked that nowadays a lot of people still don't know ALS, and what it does, mostly so quickly, above all. There is still no lobby. Not enough money for research. The disease is (still) more common or widespread than I ever thought. I even discovered recently that an ("old") great-aunt of mine got it some years ago. But: Nobody in my (wide spread, huge, german) family talked about it openly, or called it by its name, and at that time I wasn't in contact with the family. I just learnt it now. But this means that ALS is closer (e.g. in my family) than I thought. And I wonder if there are more cases of neurodegenerative diseases which are not much talked about. I got the chance that e.g. the MS research is so "strong", advanced, that there are good medications, nowadays, I profit from it, I suffer from the latter, but I function well, there is a huge MS lobby, but it took many, many years, and my little step sister unfortunately died of MS, in Germany, ten years ago. She had not had acces to the good medication in the early beginnings of the disease. She was one of a kind, too, so full of energy, unstoppable, funny, witty, kind, many friends. - Tim was really one of a kind, omg, what a wonderful, witty, strong, good person. I am sad that I discovered this channel only by now, in 2024. Hugs to all who knew him personally.
My mom was like that, almost kind of too good, too incredible, extraordinary for this world, so highly intelligent and caring for others, and such a great sense of humour. Those people will be missed, forever.
I'm an amateur ALS researcher who's always been fascinated with this cruel disease since seeing the Jenifer Estess story as a child and the sporadic cases out of the complete random blue with no clear environmental/geographic connection What makes this so scientifically fascinating its a documented familial genetic lineage case, I wonder if any other of Tim's immediate family/first degree relatives have since developed ALS. Like how he was able to link cases from ancestors who had it before Lou Gehrig coined the disease or medical literature knew how to index it
i watched the episode when he passed made me cry as a former care aid the hardest is watching them slowly fade and how the family,friends cope just an amazing family
As a former caregiver and experience with this disease I don’t get why people really choose the way of suffering followed by the inevitable death. No offense.
This is a horrible disease. One of the worst I’ve ever learned about. I pray to God we find a cure. To know everything going on. You hear see feel but u can’t make one move or say anything.. absolutely horrible.. I feel bad for anyone that has had this , does or will. I think having his dog around him is so beneficial and amazing. Seeing him lay on his leg brought me to absolute tears. Animals love and I think it’s a more pure love than any human could possibly express.. I see this man has many that care for him and that’s such a blessing. Very sad story wish I could had done something for them…
I took care of an ALS patient back in Singapore and I know how hard for him to live his life with so much machines that needs to use everyday. when He passed away due to cardiac arrest I said to myself he suffers no more.
It's hard to even find the words. No one should have to live with this horrible disease. And yet there was so much love around this young man. So many people stuck by his side and his care givers were excellent. My husband has MS and we may some day face similar challenges. It's scary and sad. Just the cost of 40 daily prescriptions a day to say nothing of all the other supplies needed to care for a bedridden person. I don't know families afford it.
If I had the power to heal ALS with a simple touch that's all I'd do for the rest of my life. I'd travel the world in search of ALS sufferers to cure and I'd ask for nothing in return. I wouldn't care about their race, religion, ethnic background or politics. I wouldn't care about what they might have done in the past or what they might do in the future. I'd heal them for the simple act of healing them and nothing else. I'd never take a day off. God could easily do this and more. For God banishing ALS in an instant would be effortless. But God never cures anyone with ALS. God's just being mysterious.
I am blown away by this film. Thank you Tim and everyone around you. I have supported someone with MND and thinking they are very similar (?). So much love in all these posts. I want to echo what everyone has said. There aren't the words to convey what I feel so am wanting to send you all sooooo much love and strength and especially Tim and everyone who is affected by ALS. I love you all even though we have never met. Rachel (England) xxxxxx
My dad had a last “hurrah” before he died. He had been hospitalized to do chemotherapy for his leukemia. He had been weak a lot and never wanted to get out of bed but he did that day and he was more alert that day than over the past few weeks. I knew his death was imminent and I started hospice that day and he died almost 10 hours later. This was last year.
My husband was in a coma for about 2 days, and then he had a last hurrah. End-stage liver disease after transplant. Now my friend is dying of ALS. This helps.
ALs is so awful. As an RT (respiratory therapist) I’ve had patients with ALS and I was close to one of them. She was finally able to go home from the hospital but she died a short time later. I was also a medic as well so I’ve seen a lot between the 2 and now I’m disabled due to several conditions such as POTS and CVID. The CVID has me at risk for severe infections such as pneumonia, sepsis, and GI infections. I’ve come close to dying a few times especially when I was septic the first time and spent a month in the hospital for it and when I had a massive DVT and PE’s requiring dangerous surgeries. I’m in the hospital quite a bit and I hate it. My last pneumonia was a few weeks ago and I refused to go to the hospital because I’ve been admitted for every pneumonia since February 2016 when all of the pneumonia’s started with one being at the end of July of this year and then I got pneumonia again within 3 months. I have had the pneumonia vaccine but due to my CVID vaccines are not nearly as affective like it is with everyone else. I’m immunocompramised due to it and I get monthly IVIG at the cancer center. I hate it as it tends to make me sick. If I ever need chemo and cancer runs heavy on both sides of my family, I have a Hugh chance of dying since chemo lowers our white counts which helps us fight infections as well as our IGG which mine is also too low so chemo would take out my white counts and I already am low with IGG. Not much left to fight infections. I’m glad he was able to be home so he could die at home. It’s important to a lot of people!
My Dad Amyotrophic lateral Sclerosis was so critical, I purchased a herbal medication from Dr Madida on RU-vid which my Dad use for couple of weeks and right now my Dad is so healthy again.
Why isn't the government in the UK funding more research into this awful disease ? I'm aware of NHS being on its knees and desperate, but not enough is being done to eliminate, or arrest this death sentence. I really wish l knew how to raise funds and awareness to help those affected.
It feels good to know that there are cures and remedy for many terrible diseases such as : HERPES, ALS, HPV, etc? Am grateful that I finally got rid of my ALS after suffering for over two years by Doctor Elemomodu on RU-vid..
