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No cure for ALS in sight
Recently I asked the neurologist who had first diagnosed me with ALS if there will be a cure for ALS soon and he said “no”. I had already thought this was the case but to have it confirmed by the doctor was devastating. I think a lot more money and research is being put into finding cures for other conditions. ALS is fatal and patients don’t have the time to wait. They are losing hope and the will to live. They need a cure now. They are dying. Just a few days ago the co-founder of the ALS Ice Bucket Challenge, Patrick Quinn, died from ALS and he was only 37 years old. I am praying for a cure for all of us who are suffering so much from this horrible condition.
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38 Replies
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I pray everyday for a cure for this dreaded disease
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If you really want to know what my days are like watch my video. – Dan D. Montgomery
~ Dreams Flame Out ~
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I don’t think hoping for a ‘cure’ is a realistic expectation for this disease. This disease is systemic, involving multiple pathways and regulators. There will be no magic bullet to put it at rest. Eventually there will numerous drugs/treatments that will help to make it more of a chronic and less of a fatal disease.
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I can understand your point of view, Duane, because there is still a lot about ALS that isn’t even known. They don’t even know what the cause of ALS is. I guess I just feel like a cure is the only hope for people to not die from this and otherwise people who have this will not have hope. I understand that this is a very rare and complex condition and also more money and research is probably being put into finding cures for other conditions.
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Another thing about this is that many times, people don’t care about illnesses until they themselves or a family member have it. Since ALS is very rare, people either don’t know about it or don’t care because it hasn’t affected them personally.
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What matters is the Science, not what people think about this or that. The Scientific knowledge is not there (yet).
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@Kathy, optimism is a good quality. Research has come a long way in the past decade and hopefully it will continue to move forward. From what the doctor I see for the pre-fALS study, they are making gains and he is positive about the future. Of course, his research is on genetically linked ALS.
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I don’t disagree that gains are being made slowly, but there definitely won’t be a cure anytime soon. That won’t happen for several years, if at all.
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Sadly, the facts are that there have been many hitters at bat, but they have all struck out over the years. It’s been 81 years since Lou Gehrig, and much longer since MND was first recognized as such. I was directly involved with Genervon’s GM604. A lot of claims were made about it years ago, but the FDA working with Genervon apparently never saw any efficacy, if they had, it would be available today. Nurown is another sad tale. I broke down and signed the petition, but I seriously doubt if that counts for much other than an expression of hope. Brainstorm as a company has lost a lot of investors. If Nurown is proven to be of benefit then it would be best if a larger Pharma such as Pfizer take it over and buy them out, or buy exclusive rights to Nurown. The few people who say they benefited from it may be correct, or they may not be correct. I was also hoping that it would amount to something meaningful for all of us, but I think that is yet to be determined.
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A friend of mine (he is also a pALS) says: “If breast cancer, prostate or AIDS victims went 75 years with no treatment or cure, there would be anarchy. … Unlike other diseases, there are no survivors. ALS always wins. So we don’t have survivors to campaign for funds and cures.”
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And the doctors basically do nothing. They just tell you how much worse you’ve gotten. Then they collect their massive paychecks and the ALS patients suffer every day until they die.
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That’s what galls me about Neurologists and Neurology in general. They all should be advocating for pALS, whether in articles, on the internet or on TV. I never hear anything like that! That’s right, they have given up and just watch you fade way. I often think of Neurology as being a pseudo-science.
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The first thing I zeroed in on after my ALS diagnosis was how to end my life once those horrible, crippling symptoms began to manifest themselves to the point where I would be totally helpless and dependent on others to eat, dress, shower, use the toilet etc. I have seen countless YouTube videos of agonized sufferers documenting those travails and absolutely swore to myself I would never allow myself to die like that, paralyzed, with tubes in my nose, down my throat, in my stomach. The only encouraging news I’ve had was from the first neurologist I saw, who I recently asked if there were any way she could procure a supply of Phenobarbitol for me, off the books of course. Actually what I first asked was if she knew a veterinarian, who would have a supply for animal euthanasia. Because phenobarbitol as a sleeping pill and anesthetic is pretty much out of general use today, not available in hospitals or the large chain pharmacies in malls. And her answer totally blew me away. You don’t need a prescription for phenobarbitol in this country, she said. It’s pretty much out of use for humans as a sleeping pill. But I’m pretty sure you can find it in some of the small, independent drug stores out in the neighborhoods. Voila! My next project, while I can still drive.
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Allen – – I agree that many of us when newly diagnosed, turn to thoughts of worst-case scenarios… and think, that’s what’s in the cards for me. But you’ve been watching the wrong videos! 🙂
I am at 10 years, and have surprised myself! I’m only hampered by weak feet and need to walk with a rollator and, have slow speech. I keep in touch with other pALS around the world who are 7+ years and peddling bikes and feeling good. So, I recommend you focus on something else than phenobarbitol – – or negative thinking in general. Especially since you are only in your 1st year of ALS. How about starting with reading a few posts on my blogsite? Or even, my free PDF book about my 1st year?
https://alsandwellness.blogspot.com/2015/01/welcome.html
Let me, and the other forum members help you create a GOOD life living with ALS 🙂 🙂
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Allen, while I can understand your feelings about it, I have been living with ALS for 14 years, and I only have a feeding tube which I have never used. The only other thing I use is a cough-assist device which I occasionally use to help clear my throat. I stretch every morning in bed, but don’t exercise to conserve energy. My ankles and feet are my main problem, but I do walk a bit and stand up. My speech is slurred, sometimes more than other times. But, regardless of these inconveniences, I do programming during the day and have a meaningful life. Don’t sell yourself short. I’m doing ok. I suggest not watching videos like that since they make matters worse. I never watch those things.
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Kathy – – I’m not one to support “doctor bashing” and, I don’t believe they have any part in ALS not having a cure yet. They are caught in the middle – – having to diagnose patients, supervise treatment and care and, to try to stay current on the latest research and theories.
Duane can probably agree with me, that ALS research has had a bumpy road. For 100 years, we had theories about it being a problem in our nerves (Lou Gerhig had B vitamin shots), or our muscles, or a combination of the two. Researchers were looking at our symptoms for a cause – – and didn’t yet have the technology to view genes, DNA and cells.
At the time of the ice bucket challenge, I remember the head of the ALS Assoc. saying that they were admitting research so far has been a failure. And they were going to start from scratch — and using the money to focus on improving quality of life. This led to eye-gaze software, voice banking, improvements in dietary support, improvements in respiratory devices and power wheelchairs. ALS Clinics were established and patients (although measured and offered no cures) could receive early advice on using adaptive equipment/devices – – which all contributed to living longer.
Research focused on managing symptoms/slowing down symptoms. These are “treatments” not cures, but never the less, helped. I remember the Genervon, Lunasin and other trials… now we have Riluzole, Radicava to slow down symptoms. AMX0035 as well. And even Nurown – – stem cells that make neurons – – but not yet new motor-neurons… are all in the category of slowing down symptom progression.
My money is on CRISPER (gene editing) https://en.wikipedia.org/wiki/CRISPR and the new discovery on how proteins misfold. These will lead to “cures” or changing the structure of our body’s genes to actually stop ALS. https://www.azcentral.com/story/news/nation/2020/12/03/protein-folding-discovery-major-breakthrough-deepmind/3809693001/
I’d be interested in hearing our member’s thoughts on all this.
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Hello Duane
Your comments were encouraging and I appreciate them. Thank you. I totally agree about the gruesome videos and I’m so done looking at them. Thing is, I have a real life picture in my mind of two family members, inlaws, stroke victims, who were left totally immobile and paralyzed but conscious and kept alive by artificial means for YEARS. Their wives, for religious or ethical reasons, refused doctors’ subtle and repeated hints that it might be time to just let go. And I swore to myself – and to my wife – that I would never allow my life to end like that. We both have living wills, but now, a year on from my ALS diagnosis, I want more concrete assurance that I will have control over the how, when and where when the time comes. So far my symptoms are limited to slurred speech and drooling saliva. I still walk and drive without problem. But my neurologist has made clear to expect worse down the road and I’m waiting for the other shoe to fall. The speech impediment is frustrating. Talking on the phone with customer service is a bitch. But my wife can understand me, so I can live with that for now. I’m gobbling Rilutek pills for whatever good they might be doing. My research has turned up a couple of viable life-ending options, relatively simple, painless and not requiring much physical strength or dexterity, and I’m comforted knowing they are there should the time come. Thanks again for your thoughts. Fourteen years, wow! That’s a lot more than they promised me.
Allen
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PS to Duane
That slipped right by me, but you mentioned a cough-assist device to help clear your throat. What is that exactly? Sometimes my throat gets so clogged with phlegm that it takes me several minutes of hacking and coughing to clear it. Drinking hot water with lemon juice helps. But I didn’t know there was a device for that. Thanks, Allen
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Allen, It’s a Phillips Cough Assist Model T-70, but there probably other makes available also. I agree with Euthanasia if and when it seems to be the best thing. Your condition may get worse by a little, slowly, or not. No one knows. I avoid most sweet sugary things since they seem to make saliva worse, and I avoid creamy liquids, like Glucerna, unless washed down soon by warm coffee. I avoid most dry food and food with dry particles, since they irritate my throat. I like my food to be wet, with water and olive oil. I use Glucerna twice a day and dilute it a lot with water. Ensure I avoid since it has way too much sugar in it, but I’m not diabetic. Just some friendly tips! Take care.
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In my opinion, Neurologists don’t need to spend much time in tracking research and theories, since most of that is already a ‘given’ by the research community. If Neurologists had petitioned Congress starting in 1939, and asked for help from multi-billionaires, then just maybe we would be better off today so far as all Neurological diseases are concerned. Patients are patients, Neurologists are Neurologists. They (Neurologists) are much too passive.
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Duane
Thanks much for the tips. I checked out the T-70 on the web and I don’t think it’s for me. Actually, I think we are talking about two different problems. The T-70 is designed to clear mucus from the lungs and bronchia. That’s not my problem. I have been seeing a respiratory specialist who told me about 12 years ago that I have a mild case of COPD and she checks me regularly and says my lungs are reasonably clear. When I occasionally get a drop of liquid or a crumb of food down there I can usually clear it with a few brisk coughs. My problem is the other tube, the one that does go to the stomach and, in my case, seems to get coated regularly with thick mucus which I deal with by vigorously clearing my throat in the time-tested, noisy and attention-getting manner. Usually, a mug of hot water with lemon or lime juice seems to thin this mucus and makes it easier to clear. -
Duane – – even if we had all the billionaire’s money in 1939 to put towards researching ALS, the technology was not there at the time to do any good.
Only now, are we finally able to scan brains, look at neurons, and split DNA. And neurologist’s see more patients than just those with ALS. All neurodegenerative disease groups want to be “front of the line.”
Neurologists don’t go into this medical field to be fundraisers or awareness advocates – – that is the nature of medicine.
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In reference to “doctor bashing”, if people are not pleased with the quality of care they are receiving, they have the right to say so and should say so. At my last in-person appointment I had to wait 45 minutes to an hour past the appointment time to even see the doctor. The doctor just tells you you are going to get worse, not better and that’s basically all. They don’t give you any information unless you specifically ask them about something. When you are first diagnosed, you know nothing about this condition so you don’t know what to ask or what information you need to know. These doctors are making hundreds of thousands of dollars a year. The place I go to also has other issues such as not returning phone calls, not following through on doing things they say they will do, and poor communication between staff. This is the 2nd ALS clinic I have gone to and both places were the same way. The doctors can also participate in trying to find a cure for this horrible condition. They are not the ones who are suffering every day like we are.
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Kathy, I agree with you 100%, and doctors are responsible for making sure their offices are working for the benefit of patients. One time, I waited 45 minutes for an appointment with a pulmonologist, and I left. I was early for my appointment. I am willing to wait 30 minutes, but no longer than that.
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<span lang="en">Dear Kathy, I understand your disappointment, but the situation of the physician is also difficult. Every doctor would like to suggest an effective medicine for their patients and help them, but unfortunately </span><span lang="en">they can't offer a good medicine. </span><span lang="en">What are they supposed to do? Should they cheer him up and say everything will be fine??? </span><span lang="en">I am sure that if there is finally a real cure, the doctor will be happy to communicate it to his patient. </span><span lang="en">In my experience, the long waiting for a medical consultation is related to the fact that one or more patients require more time than a standard visit and then it generates delays, it isn't the doctor's fault. </span><span lang="en">I am sorry for my language.</span>
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Thanks Duane. I appreciate your support.
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MMM… I think it’s rather disingenuous for a doctor to make the statement that there is no cure in sight. Firstly, ALS is not one disease with one cause and one set of outcomes; it is a set of symptoms with some known causes and many unknown causes. As someone with a career in helping businesses solve seemingly intractable problems, I know that the key is always finding the causes and then the root cause.
I may be lucky or very unlucky to have been diagnosed with c9orf72 related familial ALS. I choose the former – I at least have an idea about the root cause, if not what triggered the onset of the disease 28 years later than the age my mother was when she and I noticed the first signs of weakness in her – interestingly in the same right foot. It seems my disease is progressing more slowly than hers, which is contrary to expectation. And there are treatments in reach, if not for me then for my adult children, that will do more than extend their lives for a few months. A friend of one of my sons is Vice President of Eurus, a pharmaceutical company. I respectfully suggest he might disagree with the doctor in question.
I have come across several promising genetic therapies currently in clinical trials for the various types of ALS. So I for one have not given up all hope. My hope is that I may live long enough to at least see hope fulfilled for my two sons, if not for me.
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to Allen Lewis… In response to “throat gets so clogged with phlegm“…
My mother had this problem. She was unable to clear her throat on her own.
I induced sneezing by simply using “sneezing powder” which made her spit out the phlegm. Low tech, but worked in her situation.
Best of luck!
Rich
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Thanks, Rich. I’ll give it a try.
Allen
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