Duane
Forum Replies Created
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The best we can hope for is AMX0035 which probably has a positive effect to some degree from what I’ve read. I use Riluzole and that combined with 0035 and something in the future may help. 0035 has GI side effects for some people (diarrhea).
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What annoys me is that Pharma took 10+ years to reach this conclusion that should have been reached in half that time at most. I too think that there are Psychological aspects to this disease.
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The Pharma people seem to have an excuse for just about everything. They have a lot invested and so it is understandably so. Now it seems the are on a salvage mission. I agree with Dagmar that money should be spent on people who decline slower. Although I do not necessarily believe ‘the placebo group performed better than expected’. They may just be using that as an excuse, just as they are now saying the number of advanced cases was more than they expected so to lead to this diminished result. I wish the results were otherwise, but they are not. It went through extensive, well-controlled clinical studies especially phase 3.
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ALS is not the only fatal disease. pALS need to try to keep things in perspective. Too many of us don’t. During my 14 years with this disease, I have tried to remain calm and go with the flow. I need assistance with some things but not all. So far as dying is concerned, I don’t fear death. It’s inevitable, and you never know when it will occur. I may die from something totally unrelated to ALS. Of course, I don’t want to hasten it.
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Cindy, I just don’t believe him/her. It’s a case of smoke and mirrors.
BrainStorm Cell Therapeutics stock dropped significantly today, due to some disappointing results of a phase 3 clinical trial for its leading candidate treatment (NUROWN). The President of Brainstorm said : “We are committed to advancing discussions with the FDA to identify regulatory pathways that may support NurOwn in ALS.”
It’s stock crashed today. Down 67%. Reason: release of negative top-line results from a phase 3 clinical trial for its leading candidate treatment. NurOwn failed to achieve statistically significant efficacy results.Read this short article and see what you think about the whole affair. Just know they have been working on this for 10+ years!
https://www.biopharmadive.com/news/als-cell-therapy-brainstorm-trial-setback/589205/
https://www.nasdaq.com/articles/why-brainstorm-cell-therapeutics-stock-imploded-today-2020-11-17
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BrainStorm Cell Therapeutics stock dropped significantly today, due to some disappointing results of a phase 3 clinical trial for its leading candidate treatment (NUROWN). The President of Brainstorm said : “We are committed to advancing discussions with the FDA to identify regulatory pathways that may support NurOwn in ALS.”
It’s stock crashed today. Down 67%. Reason: release of negative top-line results from a phase 3 clinical trial for its leading candidate treatment. NurOwn failed to achieve statistically significant efficacy results.Read this short article and see what you think about the whole affair. Just know they have been working on this for 10+ years!
https://www.nasdaq.com/articles/why-brainstorm-cell-therapeutics-stock-imploded-today-2020-11-17
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I recently bought a pair of these: Skechers® Oak Canyon Men’s Relaxed Fit Sneakers. I have very weak ankles and foot inversion, so these work well with my plastic AFO’s. Be sure to buy them one size larger. They come in many widths. They will be very difficult to put on at first, but will gradually loosen a bit. They give good firm support. I can’t put them on. Another person does the shoes and AFO’s for me.
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BrainStorm Cell Therapeutics stock dropped significantly today, due to some disappointing results of a phase 3 clinical trial for its leading candidate treatment (NUROWN). The President of Brainstorm said : “We are committed to advancing discussions with the FDA to identify regulatory pathways that may support NurOwn in ALS.”
It’s stock crashed today. Down 67%. Reason: release of negative top-line results from a phase 3 clinical trial for its leading candidate treatment. NurOwn failed to achieve statistically significant efficacy results.Just know they have been working on this for 10+ years!
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Many people don’t care, and there is nothing done to make them care about it or the lives of others. That is a major weakness our country. There is very little self-discipline among the population in general. Don’t dare confront someone who is not wearing a mask as they may assault or kill you. I’ve read about numerous instances of that sort. Just awful.
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I’ve been taking it since 2013. It may make me nauseous, but I continue to take it for whatever good it may do. Doctors spend too much time studying books and attending lectures, rather than spending more real life time with their patients. Doctors don’t know or understand everything. WHILE MOST PEOPLE MAY NOT GET A RASH, A FEW MAY, OR IT COULD BE DUE TO A BAD DRUG INTERACTION.
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The seat of my power wheelchair is firm, probably too firm, and I find it to be uncomfortable after a time. power or manual chair, it is good to stand up with a walker about every hour if you can do so. I think it may be the seat, unless the person has an underlying physical condition such as a lymphatic issue. I sit in a manual wheelchair during the day, and use a memory foam/gel infused cushion called ‘Everlasting Comfort’ which I find to be very good, after trying a few types. It’s on Amazon and costs about US$40.
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Know one knows how long you will live, no doctors or scientists know. So, why not give yourself the best chance possible even if you don’t succeed. I am very well aware of the numbers and percentages. There are various ‘forms’ of this disease some which allow you to live longer. Paul Tavano sums up in his last paragraph the best approach to this disease. At least you tried hard to live.
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Trump was the wrong President for this country. His anti-science and anti-environment approach is not what we need today. I admit I have not done specific research into the candidates positions on much of anything, since there numerous factors and they constantly change. We obviously deserve someone else as a President, and research continues and continues, often with very little consequence. Research for the sake of research to keep researchers continuously employed.
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Clementine, it’s very difficult to diagnose ALS, and some people like the NHS a lot.
I am doing ok living with this disease in a chronic fashion for 14 years. Sure I have my weaknesses and other issues, but I have from the start decided it would not let me stop living life. I have made the necessary adjustments to be as safe as I can and I am continuously involved with projects in computer programming, which interests me and most importantly gives more purpose to my life; keeps me thinking about other things, not just my weaknesses. Hopefully, you will find your own ‘comfort zone’, as I have.
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While their appears to be small, incremental progress on the ALS research front, I am convinced there is little understanding of the basis for this disease. I am also convinced that ALS with many people starts in their teens and progresses from there over decades. That is why people in their 60’s experience it just when their muscle mass diminishes with age. And, it may at least partially be initiated by a virus.
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Unfortunately I have had ALS for about 14 years since the first major symptoms. Danielle is correct, forget about it. Put your mind on better things. For me, I learn computer programming, but anything to focus on something else is good. I do moderate stretching every morning in bed. Eat well and keep your weight or increase it a bit. Sleep well, and in case you have apnea, use a VPAP , or what they prescribe. I am spiritual and that helps me put my life into a better perspective. I eat well but not always organic. I eat high protein food. I use a few supplements, and drink 2 glucerna’s daily, I am not diabetic. Don’t listen to the 2 to 5 years stuff, stay positive and as happy and healthy as you can. My daily life has more than it’s share of difficulties but still I laugh a lot and don’t take anything too seriously. Be calm.
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This resurgence is very disappointing. I never leave the house (except for a flu shot which was given in a parking lot). We have everything delivered, then it stays isolated for 4 days, except for perishables. Too many people just don’t care and don’t wear masks. Even if it doesn’t bother a person now, once exposed to it, the virus may come back with a vengeance (I’m thinking of Shingles for example). It’s new and they know very little about it. I don’t feel stressed, but would like to go to my hospital to have a dental cleaning.
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I will agree to going an infusion route, or taking new meds, if they are categorically proven to make a significant difference, and have proven minimal side effects. My Neurologist says just keep doing what you are doing.
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I have had ALS for 13-14 years and have not used Radicava since I’ve not read that it helps. I understand why some people would use it, since ALS patients will try almost anything regardless. Radicava is not approved for use in Europe since they stated it has no effect. Radicava is a political drug, in my opinion. Some people may have ‘a placebo effect’ while they use it. At US$1000. an infusion, I just don’t think it’s worth it.
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It’s a small step in the right direction!