I am also in the fight to solve the mystery behind the AD. I am PhD graduate student from UT Dallas with a background in medicine who is working in understanding the relationship of mind (cognition)-molecules-sleep in the invivo human brain using spectroscopy at 7Tesla. Most of the drugs in clinical trials in AD is focused either on amyloid and tau proteins, but still, we are not able to understand what is the mechanism that causes the accumulation of these proteins. Till we resolve this issue in understanding these mechanisms in live human brain we cannot find a solution.
Thank you for your story. I watched my mom slip away slowly with Alzheimer's as she was diagnosed at age 59 while I was still in high school. More recently, my dad's second wife and my father-in-law succumbed to dementia complications, and my mother-in-law has dementia. They were all in their 80s at the time of diagnosis. Entering my mid 50s, I often worry about my prognosis. Every time I misplace something, miss an appointment, or can't remember a name, I wonder if this is the start of it. I wish there was a definitive test. If I knew I was likely to get it, I would quit working and try to enjoy the good years I had left.
10
The reason why drug companies spend billion of dollars in amyloid research and BACE 1 inhibitors is that these kind of drugs create a perfect business case for these companies. It is the same for cholesterol lowering drugs or high blood pressure. Today we see more small molecule and gene research. Why ? All these drugs shall be expensive (read a lot of profit).
There are validated therapies for Alzheimer's disease and dementia by the FDA like Reminisence therapy ( kind of psychotherapy). We try to make it digital with a social home robot. Also for Alzheimer's patients you shall have the best results with pills and talking (psychotherapy). AI, ML can give us a lot of opportunities to get the best treatment.
1
@Guy Bisschops In this case, I think you're being unfair to the pharmaceutical industry. The FDA is still designed to approve one drug for one disease, and so pharma is looking for the magic bullet that will fix this very complex problem. It may be it will take multiple approaches to reverse AD. An excellent book on the topic is The End of Alzheimer's by Dale Bredesen.
3
Compared to cancer research, and the myriad of drug trials available in that arena, the few but high-profile single agent pharma-investment trials seem the result of poor strategy. I've tried to make constructive comments from an oncologist's perspective for years: https://AlzheimerGadfly.net . Thank you for your nicely written and brave perspective.
3
I would say your life, at least to an outsider, is not empty. You are a thoughtful writer and I thank you.
18
Well, what a sympathetic conversation.
My mother, in the 70's, my father-in-law, in the early 90's, my first wife, 3 years ago, all harvested by this evil malady.
All these diets, lifestyles and victim-blaming, offering what? Magical solutions, free lifestyle advice, unbridled cynicism about those who sally forth investing idealism, effort and entrepreneurial energy, trying to find a solution that works?
This is an evil disease. This diagnosis is a sentence of horrid death, dragged out, exhausting everyone involved of all energy and financial and emotional resources until release is a blessing. But then the grieving and guilt begin.
I pray one of those greedy pharma start-ups finds something. Care for my first wife cost over a quarter million dollars, and she died at home.
About all your magical diets, gurus, lifestyles--thanks for nothing. Diversions, robbing hope, diverting sufferer and caregivers into dead ends just as this writer was pumped by the hope of healing or palliation, then flattened when the rug was pulled out.
My youngest daughter looked at her mother, a year or so before her death, and told me, "when I get like that, take me out and shoot me." She was serious. And so am I--if I get that diagnosis, all meds stop, and I'll eat nothing but ice cream until my creaky, diseased heart gives up.
12
@JohnH "Greedy" pharma start-ups? Biogen lost so much money on this that they now risk going under or having to be bought out to stay afloat. Yes, drugs are expensive, but clinical trials are also expensive, and most fail to bring a drug to market.
7
http://newsroom.ucla.edu/releases/memory-loss-associated-with-alzheimers-reversed-for-first-time
I have a strong family history of Alzheimer's. Given what else is out there - zilch - I will be utilizing Dr Bredesen's approach with the help and guidance of a doctor with functional medicine training.
14
A very articulate response. Almost too articulate.
3
@Kathy Valin what are you suggesting?
3
My husband was in this Biogen study. I am incredibly grateful to our coordinator, the physicians and staff at UCLA who treated us always with kindness and compassion. With regards to Biogen, this was not an altruistic mission. If one looks at the number of current and future patients, an effective treatment will be incredibly lucrative.
The manner of our notification of the termination of the study was dreadful. My husband read it on a Yahoo news feed. Our study team had no advanced notice. It takes dedication and determination to participate in this or any study. Biogen did not show the any compassion in that respect.
9
@Leslie Waxman Apparently, legally, Biogen had to make the announcement that way.
4
Have you heard about anavex life sciences and their 2-73 drug
It’s currently in trials
Anavex life science Ian located in New York
1
The theory that clearance of amyloid plaque build up will stop and possibly reverse cognitive decline in dementia has not resulted in any success so far. Some 150+ studies have all failed with Biogen/Eisai being the last failure among a long list of failures.
The theory that many neurodegenerative diseases result from chronic neuroinflammation is now gaining more traction. We see with Anavex Life Sciences (AVXL) study drug, Anavex 2-73, that the ability to restore neuronal homeostasis by stopping chronic neuroinflammation via modulation of the Sigma1 receptor seems to be more hopeful in that it may be acting at the root of all neurodegenerative disease - by restoring cellular homeostasis in cells (neurons) that are distressed.
The buildup of beta amyloid plaques are the result of a complicated neuro-inflammatory process and, as such, would never work to halt cognitive decline. It is time to put the amyloid theory to rest and begin understanding that degenerative disease in general are not solved by targeting only one pathophysiological process.
We will soon find out more once Anavex releases its data in the upcoming Rett syndrome study and Parkinsons disease dementia study followed by the Alzheimers phase 2/3 double-blinded, placebo controlled trial if Anavex is on the right path. Preliminary and pre-clinical data suggest that Anavex is far ahead of the world in figuring out how to stop cognitive decline in Alzheimers dementia.
14
Nothing could be done to repair brain damage underlying Alzheimer disease. Michael I. Lerman, MG, PhD.
I was intrigued by all the referrals in these comments to the work of Dr Bredesen. The California Medical Board indicates he does not have a license to practice medicine (and long list of disciplinary actions) and his own cv states that he has not had a medical license since 1995. He is not listed as faculty at UCLA on any websites I checked. His clinical research seems to lack peer review or approval by an ethics committee.
9
@Dee. I found him listed on the UCLA website. http://www.iclm.ucla.edu/faculty/bredesen.html
I have no information about your other comments.
4
That info is incorrect.
And here's a link to an UCLA newsletter.
http://newsroom.ucla.edu/releases/memory-loss-associated-with-alzheimers-reversed-for-first-time
4
@Dee. Dr. Bredesen is a well-known neuroscientist, was also trained neurologist, and through his many years in research at UCLA, has been able to put together this program which can prevent, stop progression, and reverse Alzheimer's. He's discovered that there a many paths to what is called Alzheimer's, and that if these are corrected that it can be prevented etc. Please allow hope, and follow the hundreds of clinical reports of patients using this protocol under the care of physicians! I am one of those patients.
5
Check this out: https://teamsherzai.com/about/
Whenever one participates in a clinical trial the chances of success are very small. I hope you know that Eisai (one of the study sponsors) is also looking at BAN2401 and gantenerumab. As a brave participant in their other study, maybe they will give you a chance on the ones still going on. On the other hand, they are looking mostly at people who only have a hint of decline, whose progression they can slow.
Many will be willing to be in a study only when active cognitive decline has existed for a while. The actual onset of cognitive decline predictive of increased beta amyloid can now be measured by longitudinal cognitive tests, administered economically by computer in medical settings.
Many of us in this field have deep personal loss to AD and will never give up.
Emory Hill, PhD
Disclosure: Dr. Hill is retired from Screen, Inc. where he created the CANS-MCI touch screen cognitive test battery for earliest detection of Mild Cognitive Impairment.
5
I can certainly relate to this article. My mother, who was diagnosed with Alzheimer's years ago, was asked by her neurologist to participate in a clinical trial. It was an investment of time for both her and I, but I felt that it was worth it. For over a year she was in the study, and during that time her cognitive tests remained at a steady level. Abruptly, the study was cancelled because the drug manufacturer wasn't getting the results that it hoped for. Speaking with a number of caregivers of patients in the study, they all felt as did I, that it was helping. I don't believe that it was just wishful thinking. We tried to get my mother into a different study that the doctor's office was involved in, but since we weren't allowed to know if she was actually on the drug until all the data from the first study was compiled, we couldn't. By the time that the study results were revealed, her cognitive level had dropped below the minimum number required for the other drug study, and she wasn't eligible. She passed away 2 years ago.
5
My father passed away from complications of Alzheimer's. He was also involved in a clinical trial of a medication that targeted Amyloid. We also had hope for a medication that targeted tau protein. I am a Physician and have been following the Alzheimer's research closely for decades. What I have been seeing over and over and over again are studies that show that certain medications people take, eg. anticholinergics, some antidepressants, anxiety pills, sleeping pills, Marijuana can rapidly accelerate cognitive decline. My father was taking an over-the-counter allergy medication (Coricidin) that contains a very anticholinergic medication (Chlorpheniramine). He started showing signs of dementia in his 60's. I have had several patients over the years who took this medication who developed dementia in their 50's. The sad truth is that there is no law that requires that medications be tested for their long term effect on the brain, and there is no warning. If you have heartburn and are looking at Zantac vs Pepcid - one is anticholinergic and the other isn't. Which one you choose can have a profound affect on your cognition. If you start taking a sleeping pill, a person over 65 is 2.9 X as likely to be diagnosed with cognitive impairment within 3 years. Most physicians do not know this. When we learn or practice something, we make our neurons stronger each time we cause them to fire, but these 'dementing' medications work by blocking neurons. Yet there is no warning.
25
Reply to Camille Newton: totally agree on the apparent correlation of anticholinergics and brain “fog,” as that was the effect for me, so I’ve switched to half tablets (5 mg) of loratadine, together with sprays of canned saline spray. (Neti pots to clear nasal passages often swish around dirty water at an area closest to the brain frontal cortex.) My caution: my husband died of complications of heart disease and Alzheimer’s effects. A heart pacemaker done in hospital after his AD diagnoses, made his final goodbyes agony.
Aides sent by agencies paid by our Long Term Care insurance robbed us of personal belongings. After switching several times, each new agency sent someone, an English speaking immigrant, who was a thief. (A felony charge against one person) went nowhere. The agency heads and staff seemed cheerily unmoved by this further trauma.
There is mass crime here, and the noble souls fighting and witnessing and testifying are left with to witness.
Thank you for your comment.
Hello Phillip S. Gutis,
Please keep up you advocacy work and I hope you can get into another trial. [I am in an unrelated clinical trial.]
I took care of my Mother with Alz, I can only say that keeping up exercise, reading, writing and music and movies helped my Mom.
Best luck.
9
This is at once a story of dispair and simultaneous hope. It would be hard to imagine that a person with onset of Alzheimer’s disease could write so well. That itself will give hope to many. I truly feel sorry for Philip and hope he will some how conquer the disease
10
Dr Dale Bredesen has done research in neurodegenerative diseases for at least 30 years at UCLA, UCSF, The Buck Institute for Research on Aging. His hypothesis that Alzheimer's has multiple causative factors and requires a personalized approach goes much farther than just "change your diet" or "take this one pill." It also makes it very difficult to get funding for clinical trials because his multifocal protocol doesn't fit within the clinical trial paradigm. Since all the trials for monotherapy drugs have failed miserably, it seems worth the time and effort to understand his protocol and give it a go with the guidance of either Dr Bredesen or an MD with functional medicine training.
Mr Gutis, strength and blessings to you and your husband as you travel this path together.
11
The Indian subcontinent has an 8 fold lower rate of Alzheimer's than the global average. This is probably because of diets high in foods with turmeric.
Turmeric has been shown to be very pharmacologically active in Alzheimer's.
8
@Nish Shown where? Can you guides us to the clinical studies?
@Nish
Is turmeric the same as kurkuma? I have also read a report of various Alz patients who benefitted from kurkuma.
@Nish a confounding factor is they share a gene pool.
3
I don't understand why drug companies still insist on clinical trials and why doctors practice evidence based medicine. why don't they just make things up like our politicians? and the FAA. and the department of Justice. global warming will end life on earth in a few generations anyway so none of this really matters
2
Shame on the evil drug companies, spending hundreds of millions in a futile effort to treat a devastating disease. Big Pharma is in the same category as tobacco companies and gun makers.
Right, society ?
12
Dear Phillip, I think you just became a friend to so many after writing this. You are so strong,
26
I am extremely sympathetic to what you are dealing with and am sending you strength. Have you ruled out frontal temporal dementia, by any chance, which is the leading cause of dementia in your 50s? https://www.theaftd.org/what-is-ftd/disease-overview/
2
Thanks for this
Why are Alzheimer’s sufferers uncomfortable in restaurants?
I ask as a close friend who had Alz/Dem will no longer go out to eat.
She used to go out to eat 3-4 times a week.
2
A few reasons: noisy, lots of conversations gong on, a new and unfamiliar list of food choices which are not easily categorized and understood (the sections are not recalled, and it reads like an un-sorted index of meal choices, the “rush” to decide and then the inevitable when the waiter arrives: “What did I think I’d like to order?” (No recall of the choice, usually in front of 2-4 other people). If the group is larger than 4, it is impossible to track the conversation, which ends in mute, bewildered, silence.
23
@Jake
My Mom with Alz LOVED going to restaurants, with me and/or her friends. She always had been a big eater, but quite slim.
I think it extended her life considerably, and was a usual reward after another med appt.
I became and expert on specialty upscale hamburger restaurants all over the area, even though I eat very little meat-just gave her mine next day.
Even face-planting into food with friends & me she still enjoyed the experience!
Everyone different.
3
@PeterF
I usually went with my Mom even with her friends and would help her order, which was fairly standard at that point--both her order and my help--being in restaurants was a high point for her and especially since I could not cook hamburgers a relief to both!
[I got salmon sliders.]
3
Phillip, my husband is a medicinal chemist working at the university of Minnesota’s alzheimer’s Unit. They are doing exciting work. Please continue to hope!
15
Thank you for participating in the trial. Even though the trial was unsuccessful you helped add another piece of important information. Because of your effort we are one small step closer to the destination. One day Alzheimer's will be solved and you should take so solace and pride in knowing that you contributed.
27
Support those who support basic scientific research!!!! This is where all the knowledge comes from for present and future drugs to treat diseases becoming more prevalent in human societies.
17
Alzheimers can be easily and quickly reversed with a ketogenic diet, but your MD won't tell you that (ask Dr. Google) - because it is 100% free.
And forget the costly pills that either do nothing or cover up the symptoms while the underlying cause gets worse. Take responsibility for your own diseases and then take command of the cure.
6
There is no evidence of that whatsoever. Stop promulgating unfounded lies. You give people false hope and set back real progress.
52
You are being quite cruel in suggesting that a diet can reverse Alzheimer’s disease. If it’s so effective, why isn’t everyone treating this horrible disease with this diet?
42
@Fourteen14
If only the puzzle of Alzheimer’s was that easy to solve.......... Of course, what you promote has never been clinically proven to work. Why is that, do you think???
31
I plan and lead activities for residents at a beautiful senior facility in Vermont. The residents are well cared for, probably more, than many facilities can provide.
Recently , to learn more I experienced a “Virtual Dementia Tour” My sense of reality was completely altered. I had glasses that made me not able to see clearly, earphones that had different messages going into each ear. I had thick gloves on so I could not pick up things easily and when I did it was extremely awkward. And my feet were in low level pain with little spikes in my shoes.
i really didn’t understand what was said to me. Or what to do about it.
The experience helped me understand that dementia is not just a loss of memories. It alters the person’s entire reality. I was not able see clearly, hear what was being said to me, feel what I touched. Everything was strange and I couldn’t figure out what I was supposed to do. After 6 1\2 minutes of an 8 minute experience I simply sat down. I knew it would end shortly.
For people who have dementia it does not end. While we are searching for the right medical cure, we need to address what we do know, that we must create an environment that will minimize the stress of the disease called dementia. Its a small, but critical goal, this idea of making each person have a Good Day.
55
@Sharon Kurland
Thank you for your work!
My Mother enjoyed music, movies, editing and reading--and walking when could and otherwise out for a trip in wheelchair.
Also photo albums and college directories and eating.
I did try to get time-oriented music and videos but at 88 we sorta ran out on the TV channels, movies and music--but PBS Brit-Coms remained a favorite and she could speak (when was) in a British accent for days. Family heritage too.
3
@Sharon Kurland
And that beautiful facility is....?
Some of us would like to know.....
1
@Louise FitzgeraldBromley Manor in Manchester Center VT
3
I am a 69 year old physician.I learned some years ago that low dosages of lithium carbonate inhibit the enzyme glycogen synthetase kinase 3 (GSK 3). GSK promotes the formation of amyloid and tau in our brains. I have treated patients with good results. Low dose lithium is inexpensive effective and safe.It must be taken under medical supervision. I am taking it every day.
5
As you know, the therapeutic window for lithium is very narrow. It must be monitored closely and frequently. Please describe your observations and publish them.
10
@Miguel Buxeda MD "I have treated patients with good results" is way too vague to have any scientific validity.
7
@Kara Ben Nemsi On the Beach Miami. I am not a researcher. I am a clinician. I unexpectedly became involved with the use of low dosages of lithium for the treatment of my patients.I found out that low dosages of lithium were very safe and that they were were very useful for a wide range of conditions. Amongst those conditions were the treatment of minimal cognitive impairment and even the treatment of symptoms of dementia. These observations have already been reported in the literature. Lithium is not patentable.
1
Cue all the self-professed experts who will offer their unsought and misguided advice to those suffering from this horrible disease. My spouse is now in his 6th year since diagnosis and I continue to be amazed at how ignorant others can be regarding Alzheimer's. Casual acquaintances often offer up their suggestions for treatment or cure. Can you imagine telling someone who is blind or in a wheelchair paralyzed that if they ate certain foods or engaged in dietary changes and exercise they could be cured? Yet with Alzheimer's I'm often told that I should read this that book, or follow this practice or that one. It is maddening.
I was a young man during the outbreak of the AIDS crisis. I remember the desperation of those suffering from that disease at a time when so little was known about it. I remember the inane "treatments," the "love your disease" new age nonsense, the macrobiotic diets, the herbs and supplements. I remember the extreme of some folks advocating the curative effects of drinking one's own urine.
Currently so very little is actually understood about this disease. When my spouse was initially diagnosed, we vowed to each other he would never become a "urine drinker." It's so sad to see folks readily continue to advocate such ill-informed "treatments", home-grown "theories" and non-scientific "studies." Sorry, we won't be drinking.
65
@C. Holmes
I got sick of it too.
1
@C. Holmes I can relate to your experience 100 percent. People who are not in the trenches with an Alzheimer’s patient have no idea of what’s actually going on b/c they’re out and about, living their lives. Society, the medical profession, and lawmakers need to be fully aware of this disease and the various stages because the grey area stage can last 3 to 4 years and it’s very tricky. It puts the caregiver at risk of either being “over reactive” or negligent. It’s also the stage where banks and others can justify taking advantage of these vulnerable people. The whole thing is infuriating and I really feel for you, your partner, and this journey that you’re on.
5
@C. Holmes I couldn't agree with you more. My husband is 3 years into his diagnosis of YOAD and I have had well-meaning friends show up at my door with a large jar of coconut oil (it will reverse his disease!), send me Dale Bredesen book, email me countless articles on latest "cure," etc etc. It is maddening.
I agree that there is a lot of ignorance out there, but I do not fault anyone...I, too, was "ignorant" until I was faced with this head on. I decided to make it my mission to educate our circle of friends, colleagues and acquaintances (about 600 people) on the realities of the disease, and show exactly what it looks like when a mid-50's person progresses through the stages...and what I have found is that everybody is very happy to learn, many openly express the fact that they really had no idea, and they want to be better informed, be more understanding, etc.
6
Amy Berger's "The Alzheimer's Antidote" reviews much of the recent science. She makes a convincing case that we are dealing with Type 3 Diabetes, and as with Type 2 Diabetes, there are dietary therapies proven to benefit at least some people. It is at least in part a question of how the brain is nourished--glucose or ketones. What have you--what have any of us--got to lose?
5
@CS
What are Ms. Berger’s scientific credentials? Is she a researcher or doctor specializing in the field of diabetes? Have there been any clinical trials with sound data that resulted in peer reviewed papers published in reputable scientific journals? This is the process used to separate the hard truths from the anecdotes and allows scientific/medical knowledge to progress.
14
Phillip,
On behalf of my family members with Alzheimers and the millions suffering now and in the future from this disease, I thank you for your work and your attitude.
You are a young man with exactly the right gifts and background to be effective in this advocacy.
When the medical breakthroughs finally come, you will have contributed to that breakthrough.
18
Please look at Dr Dale Bredesen’s research. Functional medicine with its emphasis on lifestyle changes, including repairing nutritional deficiencies, addressing toxic exposures, and checking for hormonal and other imbalances is the only real answer to any chronic disease process. I work in the field, and am more convinced than ever that this is the only way to effectively address Alzheimer’s.
8
@Lisa Scranton To address the onset, or to address therapies and/or cures?
I'm so sorry, Phillip. Thank you for sharing your story and your shoe challenge. You are right, we cannot give up! Keep on hoping.
19
Not only are these potential drugs hope for the patient but maybe as importantly for those that love them. My mom died from it 22 years ago but I still remember all my dad kept saying over the last five years she declined and be took care of her at home was how he hears there soon may be some new drug to make her better. It didn’t come either then but the hope it would helped him a lot regardless.
6
Alzheimer’s research continues to follow the herd mentality. What if the amyloid theory is complete bunk? What if contrarians are true in that there could be an infectious disease etiology associated with the development of this horrible disease?
Phillip, I strongly encourage you to consider antiviral or antibiotic based clinical studies.
5
@JPH What about the research suggests that "there could be an infectious disease etiology associated with the development of this horrible disease"?
3
I recently lost my dad to this horrifying disease. He was diagnosed with Alzheimer’s in March 2013. He was 77 years old, otherwise physically healthy, and still filled with fire and a strong will. As his daughter and advocate for the last 7 years, what I have experienced and witnessed has taken me to the depths of darkness. It is not just the disease that is horrifying on all levels. It is also what happens in trying to care for the person with the disease. In my case, it was the family members who turned away, the neighbors and banks who took advantage while my dad was in the “grey area”, and the greedy and sometimes inhumane world of eldercare.
I commend the writer of this article and all of the other people who are passionately contributing to finding a cure. In the meantime, we MUST find a way to navigate and protect the victims of Alzheimer’s disease. I’m talking about black and white laws that protect not only the victims of Alzheimer’s but also the loved ones who are doing everything in their power to protect them. Just like the actual disease, there is another complicated world of taking care of the person with Alzheimer’s and this world is just as toxic and complicated as the disease itself.
57
@SMN
The courts and our health care system are way behind in providing for dementia patients. They do not understand the disease. So we have laws that are not able to help people who need care. We have a medical philosphy that says until a cure is found we can do nothing for those who need so much. We are way behind the curve.
14
@Sharon Kurland
Studies have found that MD's are 17 years behind the curve on the latest research from biochemistry. Biochemistry is pushing its boundary so fast that even six months is like being back in the Stone Age.
Yet MDs say to you that if it were important they would know about it. Research has found that that's 100% wrong.
3
@SMN Amen to what you said.
1
Very sorry -- early onset disease may have a genetic component. Nevertheless, I really truly don't believe we will be saved by Big Pharma. Everything, including the increasing incidence, points to the same risk factors as Type 2 diabetes and heart disease. We live in super inflammatory environment caused by lifestyle. This is a lifestyle disease. It is a fantasy to think that a pill can undo our lifestyle. Most of us are overweight, most eat processed foods, most lead a sedentary lifestyle. If not lifestyle - then how do you explain the lack of these diseases in the Blue Zone? People live to 100 and almost no dementia? Keep calling it bad luck if we wish but I think not. I for one am not waiting for a pill.
6
I sure hope I’m not detecting disease shaming here where we blame patients for their conditions because they did too much of “this” or not enough “that”. I for one developed the beginnings of T2DM in my late 20s when I rode my bike 30 miles to work several days a week, and weighed in at 150 on a heavy day. As I found eating ameliorated symptoms, I began putting on weight in my 30’s as I ate more but continued rigorous exercise daily. I peaked at 265 in my early 50’s and with less exercise and modified eating have come down to 215. As a physician I finally diagnosed and treated myself, to varying degrees of success because doctors generally do not want the responsibility. It’s not a well paying disease to treat. Doctors sadly cherry pick patients in the era of corporate medicine and productivity quotas. When I met my biological father, in his last days at 88, he had undiagnosed diabetes, was always lean. Aside from age, he died of DM complications. Like T2DM, dementia is now thought to be at least partially due to endocrine dysfunction resulting in blood sugar being too high. Is this the fault of patients? Is cancer? Is cardiovascular disease? Is our food supply unnatural and unhealthy? Did asking us to eat no fat and 15 servings of pasta daily result from political pressure from food mfg companies on government guideline writers when they dumped the balanced four squares recommendations of our youth in favor of a mystical food pyramid? Patients’ fault???
15
@Dennis, I don't think that suggesting lifestyle improvements is "patient shaming," I think of it as tilting the odds in the patients' favor. And from what I've read, a plant based diet (no animal products, minimal to no processed foods) is one of the healthiest options, for all kinds of conditions. Is it a 100% guarantee of no disease or condition? Of course not. But what it also is not is eating no fat and 15 servings of pasta a day (who recommended that?). Instead, it's eating lots of veggies and fruit, beans and whole grains, and nuts and seeds. The oils are present in the food, not added to it.
My brother did actually reverse his type 2 diabetes: he started eating plant based foods, as well as exercising, and he eventually lost 70 pounds and went off all his meds, for high BP, high cholesterol, GERD, and yes, diabetes. And he's not the only one.
If there is a chance to improve my health by eating a healthy diet and exercising (and not smoking or drinking alcohol), why wouldn't I try it? It seems to offer only benefits, with no adverse effects.
Oh, and btw, there is no profit to be made in trying to lead a healthy lifestyle.
9
@Dr. J Maintaining (or developing) healthy habits is beneficial for humans of all ages but the term “lifestyle disease” is disease shaming. The less we know the more we fall back on blaming the victim to avoid the horrible possibility that we ourselves might fall prey to a little understood disease.
9
This research by professor Li-Huei Tsai at MIT is in early stages (mice), but it looks promising and does not involve drugs. If you have an engineer friend/family member, it might be possible to try this yourself at low cost risk (just led lights flickering at a specified frequency)
"Using LED lights flickering at a specific frequency, MIT researchers have shown that they can substantially reduce the beta amyloid plaques seen in Alzheimer’s disease, in the visual cortex of mice."
9
@Ralph I heard about this study. I don't know if I'd try it on myself without supervision but it sounds really promising and I hope that the researchers will be able to move into human trials soon. Fingers crossed
4
@Ralph
Definitely an interesting finding. I can rationalize optogenetically achieved effects, but have concerns about the efficacy using visual stimulation, since the photoreceptor refresh rate is only in the order of 20 Hz, not 40 Hz. I am not sure how a 40 Hz flicker would be relayed to have an effect on gamma-oscillations.
1
I was just going to post the same thing. I heard a podcast about this months ago and the results achieved in mice (granted, move are not humans) was startling. Not only did exposure to the pulled light eliminate the plaques in the brain but the mice showed greatly improved cognitive function as well.
5
I am sending you love. I am so so sorry about your diagnosis. My heart breaks for you and for my loved one suffering from this horrific disease. Every day, I hope there is an advancement in medical science. My loved one is running out of time. Stay strong. Thank you for your voice. Keep using it while you can. Maybe we will inspire some young people with new ideas on how to crack the code of this nightmare.
32
Phillip, have you read The Alzheimer’s Solution by Dean Sherzai , and have you tried its recommendations? Good luck to you and your efforts.
3
I despise authors who make unsubstantiated claims and pretty on sick and vulnerable people. "Lifestyle change" has never cured anyone of Alzheimer's.
15
@Sneeral I met both Drs Sherzai (he and his wife practice together) twice; first at a luncheon fundraiser for a SoCal Alz Association (not the national group) and then a few weeks later we were all guests on a syndicated talk show together along with Maria Shriver (my husband has YOAD) that focused on Alz for the topic. At the luncheon where he and his wife received an award, and spoke about their diet and lifestyle approach to treating alz, I approached them both at the end, presented my extremely healthy, athletic husband who has always eaten well and taken great care of himself, and asked why, if what they present is true, is my then 56 y/o husband quickly moving through the stages of Alzheimer's? They were both speechless, just full of apologies. A few weeks later when we happened to all end up on a talk show (only in LA!) they gave their same spiel, only this time, with an eye towards us, they were careful to add some comments to the fact that there are cases like my husband for which there is currently no treatment or cure. I am sure they knew that if they hadn't properly addressed us, I would have called them out on the show, for sure.
1
"So what now with Alzheimer’s?"
You absolutely need to look into Dale Bredesen of UCLA. He has the answer and it is not a pharmaceutical.
https://www.drbredesen.com/
I have read his book and think he is on the right track, not to mention results.
8
money money money money money! Mega-profiteering pharma industry isn't going to make enough $$$$$$$$$$$$ from a drug? Then they will discontinue trials. this is the USA way!
4
I am not sure why my prior post is not showing, but you may want to look at this, Phillip:
https://www.alzforum.org/therapeutics/biib080
IMO, anti-tau ASOs combined with aducanumab every 3 or 4 months has an good rationale for halting or delaying progression.
Perhaps my earlier post will show at some point. It contained a few more relevant mechanistic details.
2
@Kara Ben Nemsi
Aducanumab just blew up in two phase 3 trials, sending Biogen's stock down almost 30% in one day. All the drugs targeting amyloid and tau have failed. The amyloid hypothesis is in the toilet, and decades of research assuming that hypothesis have been an enormous waste of time, money, and hope. I'm a doctor who studies dementia, and I believe the only hope is prevention, not treatment. It's clear that once the damage appears, it cannot be held back.
1
@Cujo. Please read the relevant post. The use of the the anti tau med was intermittent. The full study has a bit of promise. Hopelessness is never a cure.
Mr. Gutis' experience reveals an implicit values judgement we would do well to review.
At one time in the not so distant past, people concerned about those with debilitating spinal cord injuries debated the expenditure of resources (both human and capital) on "cure vs care". In other words, rehab vs research, treatment vs prevention. Across disease/disability categories, including Alzheimers, it seems to me that the "cure" camp has won near-complete dominance, particularly where high stakes pharma, aided by FDA and other self-perpetuating federal agencies like NIH, are calling the shots. We in the US would do well to look to what some other, more humanely-inspired countries are doing instead of being blinded by the dream-spinning, profit-seeking "research" of Big Pharma. England - caring for the elderly; Canada - universal health care; Japan, India, Mexico, Hungary - advancing medical tourism by offering minimally invasive surgeries & dental care & approving innovative medical devices faster and much more affordably than we do.
Clinical trials do give hope to participants, but they are never designed & budgeted to allow participants a degree of control about when and if treatments patients deem to be beneficial can be withdrawn. Care of the living should assume as much value as future profits. We could make clinical trials care-oriented, if we "patients" weren't treated as lab rats - allowing NIH, FDA and Big Pharma to keep harvesting the forest, willfully blind to trees.
8
@Quite Contrary My sister has Alzheimer's disease. It came on fairly quickly though not extremely early (age 64). Since I understand the genetic nature of the disease and the fact that I am at increased risk, I have taken steps to ensure that an early exit will be ready if and when I am diagnosed with this disease. It's a shame that I have to do this as an amateur instead of being able to seek a doctor to make this exit scientifically based and professionally prescribed.
9
@jcs
And when you are dx'ed often are not legally able to make such a decision.
My Mom seemed happy in her home and with family caregivers incl me, but I don't have the support system, money or house so I too will take the early path out.
2
@jcs
Agreed re early exit.....
1
So if this stuff targets protein and ultra sound goes after something else why not use both?
I commend your courage writing this article.
Although the aducanumab trial, which addressed only amyloid accumulation, came out negative, I would not be ready to give up entirely on it yet. The reason it came out negative, matching the general consensus in the field, is that at the symptomatic stage of Alzheimer's disease progression is being driven by tau aggregation and propagation. At that stage, amyloid becomes ever less relevant. To stop progression, tau aggregation and spreading must be stopped.
Fortunately, there are now promising ways to do that.
Since you are obviously still in the early stages, you may want to explore whether you are a candidate for this trial:
https://www.alzforum.org/therapeutics/biib080
The next trial stage I envisage would be to combine the anti-tau ASOs with aducanumab every 3 or 4 months, thereby keeping amyloid low while also reducing tau expression, aggregation and spreading.
On its rational merits, I would be giving this a fairly good chance of succeeding. Which means stopping or significantly delaying progression.
5
@Kara Ben Nemsi
Look at the tau research to date. It also has not worked. If the amyloid/tau hypothesis is false (it almost certainly is), then no approaches targeting those markers will succeed. So far, 100% of hundreds of studies have failed. Prevention is our only rational course.
1
Thank you for your efforts.
6
Please, everyone, read Dr. Dale Bredesen's book: The End of Alzheimer's. One drug will never ever fix the problem. You must fix all thirty-six holes in the roof. You must enlighten yourselves as to nutrition. Think about it. Read the book. There IS HOPE.
6
This must be a terrible disappointment that must of us cannot fathom. Wishing you well from the Pacific Northwest and bravo for all of your advocacy efforts.
26
Pharma drugs will never be a cure for any disease. Drugs can only do one of two things: inhibit a natural process or promote it. In doing so they impact other processes that rely on the same metabolic pathways. One example is a statin, which inhibits the liver's ability to produce lipoproteins but also inhibits the production of CoQ10, a critical energy molecule needed by every cell in the body.
Going back to Alzheimer's, the cause has not been definitively not established; so how can you develop a drug? The fact is that all chronic diseases are the result of faulty metabolism caused by environmental, dietary deficiencies and lifestyle choices. You can't spend your life burning the candle at both ends, eating and drinking zero nutrition foods and subjecting yourself to EMFs from your smartphone and expect good results. Studies of blue-zone populations shows they are much less likely to have these bad outcomes. Reliance on pharmaceutical drugs for health is an expensive fools errand. There are no magic bullets, natural or otherwise; health is a marathon, not a sprint.
7
Pharma drugs will never be a cure? Seriously?
Hmmm. That will come as a surprise to millions of people who have been cured by various medications over the decades. Most recently, ask someone who was cured of Hepatitis C in a matter of a couple of months.
19
@Sneeral
Pharma drugs and MDs never cure anything, ever - that's why it's called managed care.
If there is ever a cure it is due to your body getting over it.
Or do you actually think you can have a pharmaceutical drug deficiency, that can be cured by that drug?
@Dan 100% correct. And if you have a genetic predisposition, but think you are living a super healthy life -- bet you aren't by blue zone standards. Do you eat any processed food? Do you eat 5 - 9 vegetables a day? Do you exercise? Do you get enough sleep? Considering most of the food in the grocery store including the healthy food stores is processed or sugar laden -- then you area a sitting duck. Yes Bredeson's book and The Blue Zone is a good place to start. But very, very few people have the initiative to go against the grain - so to speak. We take the easy way.
Medical research is not rocket science. It is orders of magnitude more difficult. But as a nation, in our arrogance, we radically curtailed basic science four decades ago under Reagan. Prior to 1980 (back to the 1950s) more than half of our nations R&D was Federal government research where 80% of the dollars go to basic science the R in R&D (NSF, Pattern of R&D resources). Prior to 1980 less than half of our R&D was company investment, where 80% of the spend is product development, the D in R&D (ibid).
That worked out great in the easy sciences, like physics (and rockets). Now we have drones and iPhones. It has failed in biology. We cannot make safe and effective medicines and the now spend two-thirds of our R&D dollars as a nation on D. Pharma executives invest billions on thin hypotheses.
In Alzheimer's there was an Eli Lilly trial of a drug called semagasestat, a potent gamma secretase inhibitor. Gamma secretase processes a cellular protein in brain cells to produce amyloid beta (a-beta), a protein that forms the plaques in Alzheimer's brains. So Lilly's hypothesis was (I guess) something like "hey let's get rid of a-beta and maybe the patients will get better". Their clinical endpoint was improved cognition. The thing is the patients who got the drug got sicker and deveoped melanoma to boot. They stopped the trial billions of dollars later.
During the course of the trial science discovered about 100 other cells and tissues where gamma secretase is active.
7
@Gregory Scott Nass We have libertarians and and other such types who seem to hate our government and think that the pri are sector creates innovation. They are deeply misguided. Prior to 1980 roughly half of R&D in the USA was R. Now it's about a third. And in our capitalist model companies are not punished if they fail because they have powerful lobbyists, PhRMA who buy Congressmen and Senators to cover up for their failed business model.
We have W's MMA which prevents the government from negotiating drug prices. The buyer of healthcare for our elderly, poor, veterans, and active duty military cannot negotiate price! Can you imagine how the libertarian would flip out if Walmart couldn't negotiate price with its suppliers?!
4
The stock market was pretty disappointed too.
3
@Awestruck
Nah, no Alzheimer's drugs have worked so this is not a hot area of investment.
1
Until there's a cure for Alzheimer's, which is inevitably a fatal disease, we ought to give people the same option that those who are dying of cancer have, assisted death.
22
@Stephanie Wood, Washington, CA, and still Montana.
1
@Noodles
Do as listed in states below, BUT you cannot request it once dx'ed, a very vicious Catch-22.
@Noodles. Please have hope and get information about Dr. Dale Bredesen's protocol for treatment, prevention, of Alz.
Hearts out to you. My dad, not as young as you but young in the scheme of things, has a varient of Alzheimer's. It is a thief, stealing him from us, him from himself. Life becomes increasingly smaller for us all as the disease's consequences trickle through the family. Keep wearing the weird shoes--trial or no trial.
12
I hope we find a drug that cures Alzheimer's someday, but I doubt we ever will. The good news is that we know how to prevent most cases of dementia, but the answer is too often ignored and overlooked: A healthy plant-based diet and plenty of exercise. In his excellent best-selling book, "How Not to Die," Dr. Michael Greger delves into this at some length in a chapter titled "How Not to Die of Brain Diseases." People want a magic pill that will undo the damage. We don't have that. But we can prevent most of the damage using the magic you will find in the produce section of your local supermarket.
6
@Dan Frazier
I don't think a plant based diet and plenty of exercise is necessarily the key or is the magic in the produce section of your supermarket. My mother suffered from alzheimer's for 8 years. She was active, exercised daily, ate a very healthy diet.
24
@Dan Frazier Dr Greger is a you tube hack.
I don’t know where the author is located, but ClinicalTrials.gov lists 19 dietary studies for Alzheimer’s currently recruiting in the United States. If there are no remaining pharmaceutical studies to qualify for, why not try one of these?
I also second other commenters’ suggestion of following the MIND diet — it certainly can’t hurt, and if there’s even the slimmest chance it might help, I know I’d do it in a heartbeat.
2
I've also participated in clinical trials for Alzheimers disease, being cognitively intact but having a high genetic risk. I've had to stop because I've now received the equivalent of 12 brain CT scans of radiation from PET scans. My trial was also cancelled.
Here's the big big picture: Saying that we are going to find a "cure" for Alzheimer's disease is like saying we are going to find a cure for aging. There will undoubtably be some effective drugs down the line. The goal is to delay the onset of the disease so that patients die of something else first.
In terms of current therapeutic modalities - forget the specifics such as this food, or that supplement. It's simple, anything that is good for your heart and soul is good for your brain.
I've come to terms with my risk. Each day that I enjoy is more precious than previously. I'm canoeing across the lake, and the other shore is growing closer. I'm not going to linger. I know that I can check out of the hotel any time I want. Our time is limited, but we can live fiercely now.
48
@A Doctor
Also be good to get a secondary "incidental" dx, as hospice will not treat anyone with Alz for like 7 years.
Do your very best to get lung cancer (or something else) that is what enabled my Mom and I to get in home hospice 3X/week.
Only approved for Alz < 1 year before death.
2
@A Doctor
I really like your attitude. Thanks for that.
The huge problem in creating new drugs is cost. Private companies can't afford the necessary research and trials unless they show promise, and if they don't the program is shelved.
So the question must be answered; where do we get the funding? A good possible answer; Trump's wall. We need cures for diseases such as Alzheimer's far more than we need an impervious southern border.
Mr. Trump, how about it? Do something useful for a change.
15
It's the accumulation of aluminum in the brain that contributes to cognitive decline. Try drinking a silicon rich mineral water that passes the blood brain barrier and carries the aluminum out via the kidneys.
It can't hurt and has helped people in clinical trials that were conducted by aluminum researcher Chis Exley at Keele University in the UK.
I have been drinking this water for a year and feel better cognitively and notice I have markedly less fatigue.
Good luck!
2
@df Can you name the source of the water you drink?
2
@df
Placebo effect. If it helps you, great. But there is no objective evidence that it works.
Alzheimer's was almost unknown until 1985. Since then it has doubled every 10 years. To me this indicates that it may be due to an environmental cause. Perhaps the preponderance of surfactants in our lives. They are used in ice cream, body lotions, detergents etc etc. In addition surfactants are added to drugs to allow them to pass through the blood brain barrier.
Maybe Alzheimer's is not a disease of the brain but of the blood brain barrier and that it is toxins getting through this barrier that is causing Alzheimer's
It is interesting that Alzheimer's is rare in third world countries and present in first world countries with the exception of Singapore, a very rich country with almost no Alzheimer's.
8
@Allan
It is not that it was unknown, awareness has risen dramatically since the molecular basis of Alzheimer's was elucidated in the second half of the 80s and early 90s. And technically it is not true that it has doubled. There are more Alzheimer cases, because life expectancy has risen and because aging is the primary risk factor and determinant of prevalence.
That being said, I am not disputing that environmental factors can influence the disease, those are just very hard to conclusively demonstrate. Genetics - and age - seem to be the primary drivers.
26
@Allan...Whether or not you get Alzheimer's depends on how long you live and how capable they are of early diagnosis where you live. It follows that when people live longer and where medical capabilities are better, the disease will be diagnosed more frequently. Further we know that Alzheimer's has a genetic component. One cannot rule out the role of toxins completely, but there is certainly more to the disease than just toxins.
9
@Allan as Dan Frazier above points out, our western lifestyle increases Alzheimer’s risk.
NutritionFacts.org presents the research and recommendations
2
Is it unrealistic to think that researchers could find common lifestyle factors in patients who suffer from dementia? And I have read that APOE 4 predisposes to Alzheimer's. Will gene sequencing and replacement of the bad gene at an early point intercept the malady?
3
I'm very sorry to hear about the trial, Mr. Gutis.
As a New York Times reporter, and someone who still writes compelling, interesting and heartfelt articles like this for the New York Times, you rose to (and are at!) the top of your profession. You live an amazing life, with many wishing you well.
49
Mr. Gutis points out that an obstacle for finding a cure is that it is difficult to find enough people to participate in trials. I read the article he referred to and see that it says nothing about an underlying issue: many people have little inclination to support drug companies. Drug companies are widely thought to be immoral and even rapacious. I myself have an immediate and powerful feeling of nausea when I think of them. Is there a drug for that?
Drug companies are an evil part of an evil industry (the American health care industry). Of course, many within the companies believe that they are doing good. And some good is being done. But why would we want to help them?
1
@Geoff Because the vast majority DO help us. For example, my husband managed to beat into remission a rare, incurable, late-stage cancer thanks to chemotherapy drugs developed by those "evil" drug companies. Without those drugs he would have been dead several years ago.
I agree that the health-care system needs an overhaul, but don't let's cut off our noses to spite our faces. My mother suffered from Alzheimer's for the last 10 years of her life, and it was not pretty for any of us. I urge people to participate in research trials if they can to help find a viable treatment - it won't be found any other way.
28
Jane, thank you and I do see your point and perhaps I agree as well. I myself have several family members whose lives seem to have been saved by Western medicine. That is a miracle. I’m just pointing out that there is another side that we should also be aware of. After all, what’s the point of prolonging life unless we can have real respect for those who are helping us and whom we help?
3
@Geoff Let's not conflate the problems of how drugs are priced with the value that a successful Alzheimer's drug would have for everyone. I work in drug development for Alzheimer's, and I can tell you it is a tough assignment, in part because no one fully understands how Alzheimer's develops in the first place, and secondly because it is such a slowly developing disease that it takes a long time just to know you are having any effect. And I can say that research costs are hideously expensive, so whatever cure is found I don't expect it to be cheap.
23
The failure of yet another drug targeting amyloid beta variants is not an example of science doing its best to find a successful treatment. While there certainly are many scientists working non-stop on the disease, the continued pursuit of this one set of targets, often at the active exclusion of all other possible mechanistic approaches, is an example of the power of a small number of laboratories to control the direction of research in a disease area for decades. There have been a great number of drugs that have tested this hypothesis without any significant success despite success at reducing levels of the aberrant protein in the CNS, yet it remains difficult to convince either granting agencies or drug discovery units to shift their focus to any number of competing hypotheses. Perhaps this will finally change, but to this point such negative results, despite actually bankrupting at least one pharmaceutical company, have mainly resulted in a doubling down on the same mechanism. Researchers have assumed that the clinical trials were targeting patients too late in the progression of the disease, rather than admitting that in such complex diseases a multi-target approach is likely to be more fruitful at any stage. Billions have been spent; let’s hope that logic prevails before pharmaceutical companies take a long hiatus from even considering new drugs for Alzheimer’s, as they have with so many other diseases that have proven costly and elusive.
9
@VKG I work in Alzheimer's drug research. When you see the outcome of a clinical trial, you are typically looking at an idea that is already a decade or two old. This is because going from an idea to an actual drug is typically a 10-year or so slog, so by the time you get your results the field has moved on. It does not mean scientists are not looking at other things, it just means that we are completing what was started earlier. And the beta-amyloid idea was always a bit controversial: are the plaques the cause or the result of the disease, etc.? But you test it anyway -- there is always an outside chance it will work.
But to address your main contention, yes scientists are well aware of other mechanisms and ideas, but we won't see the outcomes of those clinical trials for another ten years. But they are in the works -- in particular the more recent genetic data suggests a role for a particular circuit of the immune system as playing a role in the disease. So right now the main focus of a lot of early Alzheimer's research is in what is called "immunodementia". In ten years time, this too may look like we are behind the times, but we are going to forge ahead anyway.
34
@Marc...Well done!
5
@Marc
You work in research, which means you are a thinker. Please read Dale Bredesen's book, The End of Alzheimer's. Then think about it.
1
A well written and appreciated (by me) article.
You, Mr. Gutis, have performed a service in writing about your experience with a common and frightening condition.
I hope your path forward continues to hold rewards for a long time.
27
Mr. Gutis, I am a retired clinical research coordinator I truly appreciate your efforts to volunteer in a clinical research study. Believe me when I tell you that the clinical trial staff is just as upset has you are when after three years a drug fails to show efficacy and you have to stop a trial. Your shoe challenge was certainly an innovate way to encourage people to volunteer. All clinical trials have a
difficult time recruiting patients. Check out clinicaltrials.gov and volunteer!
25
I have diabetes type 2. I was an RN for 30 years. Forgive me, but there are many conditions which are only controlled. A "cure" for many diseases is as elusive as conquering death.
Controlling Alzheimers is best witnessed in Hogeweke, a town in Netherlands where Alzheimers and dementia population live with professional caretakers in a loving community. Hogeweke seems to be a product of basic universal health care and love.
22
@Michael shenk
The exact name is Hogeweyk. It is situated near the town of Weesp, in The Netherlands. It is fully 'gated' for safety.
Very often, the Dutch come up with some very practical and thus progressive ideas.
The University of Utrecht recently found bacteria in AD plaque, which are also present in some people's mouths. Elsewhere I read that AD patients benefitted from eating kurkuma.
AD and dementia are, if I am well-informed, not the same disease. AD patients' brains are damaged by plaque, whereas people with dementia do not have this type of plaque in the brain.
Do you take statins of any kind? Some studies have shown they may cause cognitive issues, memory loss etc. A relative was experiencing these issues (in her 50's also) and decided to stop taking statins to see if her condition improved. It did and she is back to work, having substituted Zetia for cholesterol reduction.
7
@Ca
More troubling than statins is the class of drugs that are anti-cholinergics, the most common of which may be diphenhydramine (Benadryl). The list of anti-cholinergics is long and their association with dementia is...read the studies and decide for yourself.
4
Have you tried loratadine, over the counter antihistamines?
Success is building on many failures! Your participation of the failed clinical trial will ultimately help to find a successful medicine that cures this terrible disease. I admire your spirit and wish the best luck of you!
17
Phillip, You can write amazingly well. Your thoughts are organized, the piece is well planned, and the flow is great. Whatever you are losing you haven't lost this yet.
85
@Rawir
I had the same reaction. Frankly, I’ve developed my own theory on dementia’s like this. My mother was also told she had Alzheimer’s but the reality is there is no practical conclusive test. Even the former dean of UVA’s Medical School and leading Alzheimer’s researcher agreed. So how about this feeling of loosing our memories due to a disease-like condition is the consequence of our changing roles in society over time and our cultures’ inability to make this adaptation to keep people engaged and feeling apart of a bigger social order? My mother was an amazing seamstress and artist but these were not skills that could support a family. The church was her social center, work as a file clerk in the insurance industry was a means to and end, but this work was made more efficient with a computer software system. Once “the company” doesn’t need you, humans think no one needs you. It’s a trap. Our brains can’t handle this. I wish she could have lived to see the growing demand for people wanting skills like sewing. She was amazing.
4
@Past, Present, Future
There are such things as Alzheimer's Bio-markers that can lead to a fairly conclusive diagnosis while someone is alive and the disease can be definitively diagnosed after death through an autopsy. Alzheimer's is NOT a normal part of aging. Individuals like Paul are often developing symptoms in the prime of their working years. These "Maladjustments to aging" theories minimize the severity of this disease and its impact on patients and families. This is a disease that can and should be diagnosed but currently more than half of sufferers are not given the dignity of an appropriate and clear diagnosis.
Mr. Gutis, I am truly sorry to hear of the failure of the drug Aducanumab. Science Friday broadcast on 3/22/2019 spoke about this, but also discussed the research that MIT scientists are doing where they have taken a completely different approach to solving AD. MIT scientists have, using mice, shown that the use of multi-sensory gamma stimulation ameliorates Alzheimer associated pathology and improves cognition. The next step is to see if this improvement in mice can translate to human brains. The results of their research on mice were published in cell.com on 3/14/2019. See also sciencefriday.com/listen [3/22/2019: On the Frontier of an Alzheimer's Cure; 16:58 minutes long].
8
My husband (60 years old) is on his 2nd trial. He was in the Merck trial that got pulled. They announced on Valentines Day.
I hate that this disease exists. I hate that it ruins lives, and I hate that we still have no answers as to how to even slow it down. Thank you for participating, speaking out, and being an advocate. Maybe I’ll run into you in DC.
I’m so sorry your drug wasn’t our miracle. Keep fighting.
68
Dear Phil,
This is a very awkward way to communicate but since I don’t have your personal contact info, it will have to do. I just want to say how very sorry I am for your condition. Even as you struggle with your memories, know that others remember you very well and are so grateful for all your work at the ACLU. My heart goes out to you. Warmest regards, Nancy
61
@Nancy Pemberton ... Thank you Nancy. My memories of my time at the ACLU seem to be pretty solid so far. It is an amazing organization, ever more important. Glad to see that you are still involved! Best, Phil
33
I am so sorry for your diagnosis and the sadness and frustration it must cause you. My mother was beginning to experience some dementia in her 80's, and both her mother and her mother's mother had it earlier, in bodies that were otherwise very healthy. My dad had vascular dementia from a stroke, and although his memory was skewed, it didn't progress and he never went through a period of knowing he was in decline. Far preferable, but we don't get to choose.
As an animal lover and advocate, I beg you not to berate yourself for losing memories of Abe. Keep photos of him around, maybe with little captions of something funny or endearing about him or the time when the picture was taken. Others may be able to fill in some details for you, and in this way he can continue to brighten your days.
And I recommend volunteering to work with animals. In our tiny shelter we have volunteers who perform many different tasks. Some come in just to pet cats or throw a ball for a dog. Your affinity and love for Abe can be used to benefit another animal(s) that need you. Just a suggestion; I know you will find something to fill your heart and your days.
29
How can we make it a nation-wide movement to participate in data collection—and possibly trials—for Alzheimer’s? Why can’t every person over 50 begin regulars screening with their primary care physicians, and if a PET scan indicates early signs of plaque growth, they could get in a trial? We could defeat Alzheimer’s! But it takes a nation to do so, not a single trial.
12
@Chris There are start-ups by young entrepreneurs in the works to match patients with clinical trials. Let us hope our youngsters figure out how to do this efficiently.
5
@Chris I choked on the "regular screening" part. You live in the US. Here in Canada it's almost impossible to get a PET scan, they are completely rationed. You also cannot pay for one yourself.
1
Thank you for sharing this and I am so very sorry. I am curious if you are able to maintain your home and so forth on state disability? It seems woefully inadequate. Did you have supplemental retirement savings? I ask that others in the same position (facing permanent disability before retirement age) might be reassured.
Thank you again, sending love and empathy and wishing you the very best.
4
I am very sorry for your diagnosis and condition. I sincerely hope there will be significant progress in the future. I respectfully and with great compassion join some of other commenters in highly recommending the book "The End of Alzheimer's" by Dr. Dale Bredesen. I think every adult of all ages should read it.
5
@Alan Harris
Sadly this is just quackery written by a charlatan. Pretending to cure this disease is gross.
12
The course of Alzheimer's disease, for many people, is like a slow-motion "Flowers for Algernon" story line. I read the book as a very young person, but I recall how devastated the protagonist was, as he lost huge bits of knowledge and memory almost daily. Even as a kid, I recall feeling horrified that someone would actually know that they were not the person they once were - that their self was being dismantled.
I read essays such as the one by Mr. Gutis, and my heart is breaking. I have suffered many physical illnesses during my more than sixty years, but nothing fills me with more dread than an Alzheimer's diagnosis. I am extremely fortunate that none of my family members (parents, aunts, uncles, grandparents) developed this disease, and I am, at least personally, optimistic. But I have seen this disease, close-up, with a few of my older friends. It is devastating.
We, as a culture, used to show a great deal of respect, if not reverence, for our older relatives -- many decades ago. I believe that one reason we have not made much progress in Alzheimer's research is that we no longer value our older family members and colleagues as Americans once did, generations ago. The lives of older people are simply expendable.
This needs to change. Now. I wish Mr. Gutis the best as he continues his journey, and that he lives to see effective treatment. He, and all Alzheimer's sufferers, are not to be pitied, but respected for their resilience in the face of this cruel disease.
30
@Madison Jeffries It's a myth that in the past, people valued older family members, actually. The treatment for Alzheimer's was to basically put the afflicted person into the "madhouse," or the doctor would take pity on the family and give them a little extra dose of morphine, to speed them on their way. You only would have your life prolonged if you were wealthy. People also didn't expect their families to look after them. Your kids would go "out west" and you fended for yourself. The cult of caregiving is actually fairly recent.
3
My heart breaks for you. Thank you for your contribution to research on this disease, as well as your work for the NRDC. I will hope for a miracle, but in the meantime, contribute toward research and amelioration of the effects of Alzheimer's.
My mother suffered from it at the end of her life, and my father had Parkinson's dementia, so this is something especially dear to me.
7
Thank you for your service to medical science- humble bows. I am a parent of young children, and sincerely grateful that you have committed your body and spirit to helping future generations overcome the diseases of today. With out you, science and medicine to not progress. I wish you continued vibrance, strength and courage on your journey.
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Thank you for sharing your thoughts and disappointment. The science establishment does indeed have a lot of soul-searching to do in understanding how this theory has persisted, despite ample human evidence to the contrary. That said, at a time when it is fashionable to criticize everything biotech and Pharma, why not at least acknowledge the good news that we have a system that encourages big bets by companies to conduct studies such as this one that can lead to a definitive conclusion. The Biogen study also reminds us of how much work goes into developing a drug, work that far exceeds the generation of ideas in a government or university lab.
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I am sad to say that a professor from WPI worked on a drug that showed great promise in lab mice in terms of Alzheimer's and he sold the drug formula to a German company and they shelved it. Some may perceive this as a negative post and why would I write this. Here's your answer, after losing my husband to cancer i can assure you there are cures out there but they are getting shelved because the company and Germany could make more money from treating Alzheimer's than curing it. It is heartbreaking for researchers as well I used to think people who said things like this were a little crazy or grieving. However, my husband a researcher pointed out that he was getting the same treatment for cancer he had 15 years ago - chemo. Nothing new? There is a cure for these diseases we just need to make sure they get produced and money is taken out of the equation.
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NO,there is not a grand conspiracy to “shelve” cures and if there were how do you explain the thousands of drugs, devices and surgeries developed that cure and treat things used everyday. They fell off the shelf?
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@Molly
Your claim that a potential blockbuster drug would be “shelved” by companies seeking to make profits makes no sense to me.
Please provide specific details.
Also, realize that drugs that provide “cognitive” benefits in mice don’t necessarily work in humans.
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@Molly
It’s a fair point that chemo is old news, and needs to be updated (I’ve been through it myself). I doubt conspiracy is behind anything, though.
I am sorry to hear that this negative outcome is so much more personal for you than yet another failed clinical Alzheimer's trial! We often forget that such studies are also bearing the hopes of those of us who either have Alzheimer's, have a loved one with that dreadful disease, or are (at least occasionally) wonder if we won't come down with it ourselves eventually. One of the takehome messages from this study is one the companies who ran it won't have in their press releases: Despite a lot of progress, we still don't understand the actual causes and neurodegenerative mechanisms that underlie Alzheimer's or other brain diseases, such as Parkinson's, well enough to come up with therapies that can truly stop, never mind reverse the neurological damage that . That understanding will only come with more research. The biggest driver of such research is the funding allocated for it in the Federal budget. The current budget proposals have a lot of items in it. Let's make sure that a healthy boost for scientific and medical research, also for Alzheimer's, is part of the final budget. For progress in science and medicine, the old sign from the print shop applies: Good, fast, cheap. Pick any two. Let's make it good and fast. Trying to do it on the cheap doesn't work so well.
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I am so sorry to hear of your experience and wish you all the best in finding another study. I too have qualified for an Alzheimer's prevention drug study and live in the shadow of this horrendous disease.
For anyone interested in finding out how they can help end Alzheimer's here is a link to the Alzheimer's Prevention Registry: https://www.endalznow.org/
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It is well past time to declare the amyloid hypothesis to be misdirected. As Dr. Herbert B. Allen has stated “ignoring the likely microbial pathogenesis in AD could possibly become one of history’s greatest ethical calamities.” See, “Bioethical Challenges Arising from the Microbiology and Pathology of Alzheimer’s Disease,” Curr Neurobiol 2018; 9(1): 26-28 ISSN 0975-9042. Other possible treatments for AD should be more avidly investigated, such as described in US Pat. No. 10,010,568 entitled “A Method and System for Reducing the Likelihood of a Spirochetes Infection in a Human Being.”
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Early-onset Alzheimer's is an amazingly cruel disease. Any action you take to gain the interest of politicians and researchers is very important indeed. Please try to enjoy the time you have, the people in your life that mean something to you and to whom you matter.
Thank you for your honesty in describing your journey and your efforts to solve the puzzle of this disease.
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I am so sorry we won't get to see you sporting a pair of stilettos on FB. I am more sorry about your diagnosis. And I am perhaps sorriest of all that no experimental medication has panned out. Good luck to you (and to all of us)!
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I am so sorry for your Alzheimer's diagnosis, Mr. Gutis.
I wonder if you have considered changing your diet? It's no guarantee, but it might be worth a try.
"If you look across multiple countries, you see a similar pattern, with “[t]he most important dietary link to [Alzheimer’s appearing] to be meat consumption, with eggs and high-fat dairy also [maybe] contributing.”...The evidence that meat consumption is causally linked to Alzheimer’s disease, well, there’s the strength of the association, the consistency across different types of studies, the fact that the dietary changes preceded the risk of dementia, the dose response—more meat linked to more risk—a bunch of plausible mechanisms. We know that “[m]eat is…a risk factor for other chronic diseases,” but there’s never been randomized controlled trials to put it to the test." https://nutritionfacts.org/video/how-to-prevent-alzheimers-with-diet/
There is a lot more information available on this site, which is a non-profit, evidence-based nutrition site, and one of the best based on my experience as a research biochemist.
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This is hypothesis-generating, but is seriously confounded by other differences between countries.
Specifically, the dietary habits you describe are also associated with more economically well off countries, which (on average) have a longer life expectancy both from birth and even starting from middle age (which takes infant mortality off the table). Any situation which life expectancy is longer will be associated with an increase risk of dementia.
For example, presumably wearing seatbelts is associated with an increased risk of dementia—because you live long enough to get the condition.
As far as I knows, vegans get Alzheimers at about (though not exactly) the typical rate.
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You are one strong person and I admire you. The pharmaceutical companies --- not so much admiration. They have focused their efforts on a symptom of Alzheimer's, not the cause. That's because it was easier and would maybe make them lots of money. Truth is, we don't know the cause but we do know a lot of associations which need to be investigated. The classic American diet is one association. Obesity, heart disease, and diabetes are others. As long as we continue the American "lifestyle", which continues to spread, Alzheimers will be with us.
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@BA No reason to criticize the drug companies—what would you have them do? The scientific consensus was that this was a promising approach.
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So sorry you are going through this Mr. Gutis. You are brave to share your story. Thank you for that, and for your dedication to helping find a cure.
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My dog and I volunteered as a therapy dog team visiting patients on a memory floor, including alzheimer's patients. It didn't matter if they remembered my dog, they took pleasure in his company and he took pleasure in their attention. I hope you're gentle with yourself about forgetting Abe.
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I don't know if this would be a useful reference for all people with Alzheimer's or other dementia, but I just learned of a New York Times bestseller book by Dale Bredesen, MD titled The End of Alzheimer's: The First Program to Prevent and Reverse Cognitive Decline. Perhaps the multi-pronged approach may prove helpful.
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@Karen H
perhaps false hope is preferable to no hope. Dale Bredesen, MD seems to have found a way of turning a profit from peoples misery and desperation.
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@Sagredo I have read Dr. Bredesen's book "The End of Alzheimer's" and listened to several of his lectures. His presentation is compelling and everyone should at least review it and consider it. Profit does not strike me as his motive. If the drug companies are throwing in the towel on what would be potential enormous revenue and profit, they likely know they are on the wrong track. Dr. Bredesen's protocol is not simple, but if it is ultimately effective then that could benefit millions worldwide. An adoption of his recommendations at a younger age (say 40's and 50's) could be a pivotal prevention breakthrough.
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Bredesen's book is provocative to be sure, and the individualization of tx makes it near impossible to do a rigorous study of outcomes. That said, I wish he was more circumspect in his writing, less "rah-rah-I-have-the-cure"....maybe then I'd trust his program more.
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It is frustrating to read this type of article as the writer is truly not informed of the work done by Dr. Dale Bredesen who pioneered Alzheimer's treatment by the 26 individual but coordinated therapies focused on lifestyle changes against multi-factorial (possible 36 separate causes in 3 groups). He has recently published a research/therapy report titled " Reversal of Cognitive Decline: 100 Patients".
https://www.omicsonline.org/open-access/reversal-of-cognitive-decline-100-patients-2161-0460-1000450.pdf
As you can read from this report, most of the 100 patients recovered memory, executive functions and cognition.
It is very important to know that Alzheimer's patients do not need a miracle medicine, but need to take 'cognoscopy test' to find out what cause Alzheimer's symptoms. His therapy of lifestyle changes has been working, to our surprise. This is his background, research reports and contact information.
https://www.ahnphealth.com/dr-bredesen.html
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@Wind Surfer
That study you cite was published through a body that is known in research publication circles as a "predatory publisher." That is not a peer-reviewed article, and therefore, should be discounted.
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@ck
Most of the degenerative diseases like Alzheimer's, other dementia, type 2 diabetes, obese, fatty liver, autoimmune diseases,or atherosclerosis, I understand, are difficult to treat conventionally. Only you, conventional doctors, can do is prescribing medicines, which have many side effects, to treat symptoms, not cure causes fundamentally. What Dr. Bredesen has found out is that there are at least 36 causes (multi-variables) to create Alzheimer's symptoms. He has established at least 26 individual therapies that can work together to treat Alzheimer's because most patients usually have 10-15 causes. Toxins-caused Alzheimer's is very difficult to treat, as you conventional doctors are well aware because you are not trained. Most of modern day chronic diseases are already out of your training as you are keenly aware. It is time to accept medicine based upon lifestyle changes. There are so many patients that can't wait development of extremely expensive medicines that can do little.
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@ck,
Bredesen’s first study on cognitive decline was peer-reviewed- his book is also a critique of Western Medicine- one that resonates not just with ALZ, but with many diseases of affluence and excess-especially diabetes, cancer, and heart disease, all strongly linked to our junky diets and screen/couch-locked activity levels. This is also epidemiologically sound- look at studies of long lived populations, and you’ll see a version of Bredesen’s protocol « in the wild. » Will it work on every person- I don’t know. I do know that a single drug approach seems demonstrably unlikely to work, and a multifactorial intervention has no downside. Also: the Breseden protocol is not costly a priori, or time consuming- just stringent.
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I know how you feel, from a caregiver's point of view. We took care of my mom who had Alzheimer's. (She was diagnosed late, when she was 87.) I even wrote a book about it called, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." I know how important getting her (and me) out of the house was, for our collective health. Being with people, even if she thought she knew them but she didn't, was important for her, for both of us really. I'm glad you're able to exercise; that should be a big help, both physically and mentally. I'm sorry that so many potential drugs for dementia have shown so much promise initially, only to fizzle out as clinical trials progress, but hopefully a research team or even an individual, will come up with something soon.
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