November 26, 2020 at 6:46 am #16931
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.
November 26, 2020 at 4:53 pm #16936Mary TiknisParticipant
I pray everyday for a cure for this dreaded disease
November 26, 2020 at 5:48 pm #16939
November 27, 2020 at 11:45 am #16942
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.
November 27, 2020 at 12:05 pm #16943
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.
December 2, 2020 at 7:25 am #16959
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.
December 2, 2020 at 9:59 am #16960
What matters is the Science, not what people think about this or that. The Scientific knowledge is not there (yet).
December 2, 2020 at 10:39 am #16964
@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.
December 2, 2020 at 12:01 pm #16966
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.
December 3, 2020 at 12:53 pm #16974
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.
December 3, 2020 at 2:56 pm #16976Jim KneppParticipant
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.”
December 3, 2020 at 3:19 pm #16977
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.
December 3, 2020 at 4:35 pm #16980
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.
December 4, 2020 at 3:34 am #16994
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.
December 5, 2020 at 11:30 am #17016
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?
Let me, and the other forum members help you create a GOOD life living with ALS 🙂 🙂
December 5, 2020 at 12:21 pm #17017
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.
December 5, 2020 at 12:25 pm #17018
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.
December 6, 2020 at 12:08 am #17022
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.
December 6, 2020 at 12:47 am #17023
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
December 7, 2020 at 10:33 am #17031
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.
December 7, 2020 at 12:40 pm #17040
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.
December 8, 2020 at 10:12 am #17045
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.
December 8, 2020 at 5:23 pm #17060
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.
December 7, 2020 at 12:59 pm #17041
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.
December 7, 2020 at 4:58 pm #17043
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.
December 8, 2020 at 1:56 pm #17056JolantaParticipant
<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>
December 8, 2020 at 7:30 am #17050
Thanks Duane. I appreciate your support.
December 8, 2020 at 3:41 pm #17057David CrellinParticipant
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.
December 8, 2020 at 5:32 pm #17062
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!
<span class=”aCOpRe”> </span>
December 8, 2020 at 6:16 pm #17063
Thanks, Rich. I’ll give it a try.
December 8, 2020 at 6:30 pm #17061
I agree with the Kathy Stitz post from December 7, 2020 at 12:59 pm ET about doctor neglect. In my particular case, the doctor told me my diagnosis and then just sent me home. Below are specific examples the ALS clinic failed:
- Wasn’t assigned a case manager, a point person. After receiving diagnosis of ALS I should have been immediately designated a point person, who should reach out to me telling me what to do, when to do it and how to do it. I shouldn’t have to reach out to the Clinic.
- Wasn’t given an ALS primer – paperwork on ALS or an identification of websites to go to (in a specific order), so to understand the disease, what to expect, research being done, self-help, etc.
- Wasn’t immediately prescribed Riluzole. I had to request a prescription for Riluzole. From what I have read online, getting on Riluzole as early as possible returns the best results.
- Wasn’t encouraged to try ALSUntangled recommended therapies. There is no cure for ALS. ALS is a death sentence! All the therapies that are not “we do not recommend” should be tried, together. Trying every possible recommended therapy should be encouraged.
- Wasn’t “handheld” through the SSA SSDI The SSA SSDI and Medicare process should start the day after receiving ALS diagnosis with a person to guide through the maze of SSA confusing, difficult to navigate websites where you are taken from webpage to webpage forgetting where you started from.
- Wasn’t encouraged to sign the AMX0035 fast-track petition. I was informed by TodayALSNews. There should have been a coordinated effort from the clinic.
- Wasn’t encouraged to email my congressmen for ALS funding and treatment legislation, through websites such as https://stevensnation.com/
- Wasn’t presented with any clinical trial orientation. I know there are trials, so working with my doctor I should be presented with what is available and what would work best for me.
- Wasn’t given an ALSFRS test upon initial ALS diagnosis. If you don’t measure it, you can’t measure the decline progression.
- Wasn’t questioned about family health history, nutrition, lifestyle habits, medications, injuries, surgeries, personality traits, occupations, etc. Gathering this information should be standard practice. Reason, from what I have read online sporadic ALS has unknown origins. Also, it progresses differently in different people. It would make sense to me that the clinic(s) obtain as much information about the ALS patient as possible to then be used for data mining in a US/worldwide database.
- Wasn’t made aware of the “Right to Try” Act.
- Wasn’t encouraged to try Complementary and Alternative Therapies (CAM) As said before, there is no cure for ALS, so all treatment options should be on the table. Even if you only benefit by the placebo effort, the end result is the same. The bottom-line, you feel better and that’s what were all trying to achieve.
Bottom line…you’re either part of the problem or part of the solution. The items I’ve identified above clearly point to being part of the problem.
December 8, 2020 at 7:59 pm #17067
Thank you for your comments Richard. I am sorry you have not been pleased with your care either. Those were great examples you gave about how your ALS clinic has failed. Many things that you mentioned apply to me as well in terms of not being informed about issues relating to ALS. We all want to feel as well as possible and I hope doctors will try to improve their care because improvement is needed. Best wishes to you.
December 9, 2020 at 10:41 am #17070
The reason no cure or treatment for ALS is in sight, and won’t be for a long time, if ever, is that it’s rare and non-contagious. The disease is yours and yours alone and you couldn’t give it away to your worst enemy if you wanted to. Malaria? Yellow fever? Smallpox? Typhoid? All now curable or controlled by vaccines. Even Covid 19. A vaccine formulated and already being distributed…in under ONE YEAR. Why? Obviously, those were pandemic-grade diseases with enormous political capital to reap, not to mention the potential to wipe out huge swaths of the human race. ALS? Most politicians have never even heard of it, let alone care about a cure. No, we are on our own, to live – well or less well – and then to die.
December 9, 2020 at 10:57 am #17076
Yes, that’s very true, Allen. It is very unfortunate and awful but that’s what the reality is. People don’t care about illnesses until they themselves have it or a family member has it. Since this condition is so rare, not many people care about finding a cure for it. There are other illnesses that are affecting a lot more people so a lot more focus is directed towards those conditions. It’s awful for us because we are suffering every day and we need a cure for ALS too.
December 9, 2020 at 11:14 am #17077
Our community, including our friends and family, can generate interest and help to raise awareness that will help all aspects of research and care. That is a big part of what the ALS Association does every year. There is some promising research being done. We can help by volunteering for trials and being an active voice.
December 9, 2020 at 11:47 am #17085
During this pandemic year, it certainly has been challenging for all rare disease groups like ALS to raise awareness and get noticed.
I wonder what creative ways and activities that you’ve seen other disease groups do, that has made an impact or had positive results? We can certainly look to other groups for ideas… What have you seen? Let’s start a list of ideas.
December 9, 2020 at 3:30 pm #17087
First, the people leading the ALS cure charge need to stop patting themselves on their backs for what I see is a clear failure. As an example;
The other day I received an email from The ALS Association ([email protected]) touting their success about the House of Representatives passing the ALS Disability Insurance Access Act. Below is a quote from their email:
“Over the last four years, YOU have helped build the momentum and support for this bill. From a single sponsor when it was originally introduced in 2016…”
Personally, I wouldn’t be very proud of the fact that it took 4 years to pass. I’d be embarrassed!
Second, you know ALS has a publicity problem when the most famous ALS individual being publicized died 81 years ago. Most people living with ALS today weren’t even born yet when he died. Steven Hawking is not any better as an ALS example, a longevity anomaly. Living, though poorly, 50 years with the disease sends the wrong message about the urgency in finding a cure. There’s a need to highlight more recent, famous people with this disease.
The individuals leading the ALS cure charge need to take a good long, hard look at their methodologies of initiating/persuading Congressional bills, drug research, funding and FDA approvals along with public awareness. A more radical approach is necessary. Past performance is indicative of future results. A new rule book needs to be written. This snail’s pace is unacceptable when the average ALS life expectancy is between 2 to 5 years and the quality-of-life expectancy is significantly lower than that.
December 9, 2020 at 5:12 pm #17089
Richard, I have to agree with you. “The individuals leading the ALS cure charge need to take a good long, hard look at their methodologies of initiating/persuading Congressional bills, drug research, funding and FDA approvals along with public awareness. A more radical approach is necessary.” That what I also was saying, and who’s to say that a high-tech approach to this disease is what is needed. “Only now, are we finally able to scan brains, look at neurons, and split DNA.”
Only now? What if the ‘only now’ happened in 1979 or 1989 due to adequate funding in the 1940’s decade. How many lives might have been saved? It was possible, but the opportunities were missed due to complacency, business as usual.
I am well aware about Neurology and Neurologists, and I don’t need a lecture or explanation about them. And, there is no reason why they cannot advocate for the benefit of THEIR patients, regardless of why they became Neurologists. Things change, everything is subject to change, but I guess that does not apply to them!
We all have our own opinions, and I have mine which says don’t accept the status quo. A more radical approach is certainly necessary! The approach to date has been a dismal failure.
December 9, 2020 at 5:59 pm #17091
It sounds like there are numerous topics Of concern, justifiably. We definitely need treatments and cures!! pALS need access to treatments in the trial Phases. I also think that some doctors need to be educated in ALS and there needs to be a systematic plan on how to work with pALS. Does this exist? How can you get involved to bring about positive changes for the ALS community!
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