Are Alzheimer’s News Headlines Misleading?
I remain hopeful that thru dedicated research, a cure will be found for Alzheimer’s Disease. I often see headlines like this “Drug restores cells and memories in Alzheimer’s mouse models” bringing hope to the millions who suffer, but the reality is quite different. Alzheimer’s disease drug candidates has one of the highest failures rates of any disease area – 99.6%, compared with 81% for cancer. One of the issues revolves around using mice for these studies. Recently I had a long talk with the CEO of Cure Alzheimer’s Fund, Tim Armour. He said that while mice are good for broad tests, and can help narrow some ideas, it always takes human trials to test the effectiveness of any drug. Simply put, mice don’t get Alzheimer’s Disease (AD) naturally; their brains are different than human brains so researchers simulate AD in mice brains and it is not exact so the margin of error is compounded. Also, most tests are on male mice, not female and there is a difference in their brain pathology. So while not be totally dismissed, headlines like that one give a serious false sense of hope. A few years ago, researchers were able to grow human neural stem cells which in turn were able to produce the two specific proteins that are the hallmarks of Alzheimer’s disease: β-amyloid and tau. Using this “Alzheimer’s in a dish” approach, researchers are currently testing 1,200 drugs that are already approved by the FDA for other diseases and plan to test 5,000 experimental drugs for additional leads. This approach takes weeks per drug compared to months and years for mice and human trials. Another current trend is to stop trying to “reverse” the disease once it occurs but rather to identify individuals most likely to develop AD and view it like heart disease with treatments earlier in life. So while the headlines often don’t match reality, there is progress, albeit quietly, that one day soon will result in break thru that we can all celebrate together. Of course if one of these mice trials is successful, I will be the first in line cheering wildly! Read more at: https://medicalxpress.com/news/2017-07-drug-cells-memories-alzheimer-mouse.html https://directorsblog.nih.gov/2014/12/09/alzheimers-in-a-dish-new-tool-for-drug-discovery/ https://www.scientificamerican.com/article/why-alzheimer-s-drugs-keep-failing/
Encouraging Alzheimer’s News
I spoke at an Alzheimer’s conference last week and had a chance to listen to expert speakers on the latest research news. I am encouraged. While much of this has been announced piecemeal over the past few months, this is a recap for those not following the daily updates. Funding UP! First up is that the US Government has increased the research funding thru the National Institutes of Health. It is now close to $1 Billion annual dollars – almost twice the amount only a few years ago but still well under the estimated $2 Billion that is estimated to fund a cure by 2025. This critical trend needs to continue so please consider contacting your Representative and Congressperson to let them know this is important. ACT New Diagnosis Tools Next are new ways to test individuals for Alzheimer’s: smell and retina tests. Ten years ago, the only way to be 100% sure a person had Alzheimer was thru an autopsy. Central to all these studies is the discussion about what comes first beta-amyloid proteins or Tau proteins. Researchers continue to study if one is the result of Alzheimer’s or the cause, but they are getting closer as shown in this report. New, simple and inexpensive tests would be welcomed as today the most accurate requires expensive PET scans or more invasive spinal taps to exam the spinal fluid for the telltale amalyoid proteins. (they should not be in your spinal fluid). Smell – Peanut butter in the right nostril! Could a scratch and sniff test reveal you have Alzheimer’s Disease? By using a card with a scratch and sniff test on it containing familiar odors like coffee, chocolate, cinnamon and licorice, it is suggested that individuals can be tested for Alzheimer’s Disease. Researchers at The University of Florida asked over 90 participants to smell a spoonful of peanut butter at a short distance from their nose. Some participants had a confirmed early stage Alzheimer’s , some had other forms of dementia, while others had no cognitive or neurological problems. Of those participants, only those with a confirmed of early stage Alzheimer’s had trouble smelling the peanut butter. Additionally, those patients also had a harder time smelling the peanut butter with their left nostril. Generally, the right nostril was able to smell the peanut butter 10 centimeters farther away than the left nostril. The difference in smell between left and right nostril in unique to the disease. source But there are skeptics that is test is not as foolproof as reported as other degenerative brain diseases, including Parkinson’s can also affect odor detection. Also individuals who have always had difficulty with smell because of chronic respiratory tract conditions might give false positives. James Hendrix of the Alzheimer’s Association said, “These findings may indicate that there could be a problem linked to neurodegenerative diseases in general,” but said it’s too early to use a smell test as a diagnostic tool for Alzheimer’s or dementia. This is the link to the full report. source Retina I take this test with some skepticism as it was preformed mostly on mice and these trials rarely transfer to humans with the same headline of success. But it is progress nonetheless. In this test, using optical coherence tomography (OCT), an established medical imaging technique used to observe microscopic details in the eye the machine can be configured to painlessly scan a patient’s retina, the tissue in the back of the eye, to look for abnormalities. Using 63 study participants who were at high risk for Alzheimer’s disease, the researchers first conducted PET scans to establish the extent of the participants’ beta-amyloid accumulation. Then, they performed OCT scans and compared the results. source Details: Light is shone into someone’s eyes, reaches the retina located in the back of the eye, and is reflected back to the device. The device is then able to display retina images along different wavelengths of light. Based on earlier experiments with mice and human retina cells, researchers thought that the microscopic bits of amyloid beta in the retina would reliably create visible patterns of scattering in images taken in the shortest wavelengths — the same phenomenon that explains why the sun makes the sky appear blue in the middle of the day and orange and red when it’s setting or rising. When they tested mice bred to develop Alzheimer’s and compared their results to control mice, they consistently found these patterns along different stages of the disease, most importantly before any symptoms showed up. “We saw changes in the retinas of Alzheimer’s mice before the typical age at which neurological signs are observed,” said More. “The results are close to our -case scenario for outcomes of this project.” source Of interest, a similar study with dogs found the same build up of plaques. This is what lead the the humans study. source More clinical trails move forward Merck is hopeful that a phase 3 clinical trial will prove successful. They are enrolling 1,500 patients with mild cognitive impairment in one study, and have already recruited 2,221 people with mild-to-moderate Alzheimer’s to participate in the other. Those trials are using two different scales to measure the cognitive function of participants. The Merck Research Laboratories researchers are trying to block an enzyme involved in producing amyloid beta, a protein that clumps together to form the plaques typically known as a hallmark of Alzheimer’s disease. In a seven-day trial, details of which were first shared in 2013, Merck randomized patients to receive one of three daily doses of BACE1 inhibitor verubecestat or a placebo. After seven days, Merck looked at the concentrations of beta-amyloid 40 and other amino acids linked to the formation of amyloid plaques. In the cohort that took the highest dose, levels of beta-amyloid fell by as much as 90% over the 24 hours patients were monitored. source Meanwhile Eli Lilly is anxiously studying results from their phase 3 trail to to see if Alzheimer’s can be stoped early in life. The drug under study is an oral beta secretase cleaving enzyme (BACE) inhibitor aka solanezumab that has been shown in Phase I studies to reduce levels of amyloid beta in the cerebro-spinal
7 Years after Ida’s Death
Today, I am climbing Mt. Ida, 12889′ in Colorado’s Rocky Mountain National Park. It is a perfect peak to honor my mom, Ida, who died from Alzheimer’s Disease (AD) on August 16 2009. Over 5.3 million have AD just in the U.S. alone, and an estimated 47 million worldwide. It is the sixth leading cause of all deaths in the United States, and the fifth leading cause of death in Americans aged 65 and older. Whereas other major causes of death have been on the decrease, deaths attributable to AD have been rising dramatically.8 Between 2000 and 2006, heart-disease deaths decreased nearly 12%, stroke deaths decreased 18%, and cancer-related deaths decreased 14%, whereas deaths attributable to AD increased 47%. Every 70 seconds, someone in America develops AD; by 2050, this time is expected to decrease to every 33 seconds.8 While we know more today, we still don’t know enough. It remains the only disease among the top 10 causes of death in America that cannot be prevented, cured or even slowed. My mom died not knowing she had two children, a loving husband and eight brothers and sisters. She died not knowing where she was born or that she was sick. She died not knowing it was her son who held her hand, hugged her tightly and gently kissed her on her cheek. She died too early and for the wrong reason. As I hike through an amazing wilderness area, my thoughts drift back in time … She’s Gone It was about 5:00 pm on a Sunday when my brother called me to say “She’s gone” … I know many of you have read my posts about Ida before, but this one is a bit different, please stay with me …. I took a moment and immediately went into Manager Mode. “OK, her burial policy is … I will be there on … We need to call … ” I failed to let the moment sink in as I had been preparing for this day since I escorted Ida out of her home of 50 years in September 2006. Worse day of OUR Lives I stood next my mother in her comfortable bedroom. “Do you want to get a few things?” I suggested. “Where are we going?” she asked with a look of fear in her eyes. “Dad is recovering after his hospital stay and he wants you to stay with him.” I said, stretching the line between fact and fiction. “Oh, is he sick?” And with that, I knew I was doing the right thing, even if it was the worse scenario I could ever imagine. Ida looked me in the eye and simply said “I don’t want to leave my home.” “I know, I know” I said under my breath as she put her forehead against my chest – trusting, childlike. It was all I could do not to collapse from my own emotions but I knew she would be safe and loved at the King’s Daughter’s and Son’s Home, close to her husband, large family of sisters, brothers and church friends. Unprepared As the next three years passed, I watched Ida, my mom, slowly slip into a land of living in the moment to not living at all. My brother was numb, as I was. Our father, Jim, had died three years earlier but his death at age 88 was not unexpected. Ida getting Alzheimer’s was totally unexpected. Personally, I was totally unprepared – as a son, as an adult, as a human. Totally unprepared to oversee her care. But the devastation of her mind was beyond understanding. Now seven years later, the impact of that experience is only beginning to appear. All I know is that I remain determined not to let her death be forgotten. Climbing the World to End Alzheimer’s The science around Dementia and Alzheimer’s Disease is complicated and difficult to understand. Most people choose not to try – until they have a loved one with the disease, or begin to show the signs of forgetfulness themselves. That’s when reality slaps you in the face – there is absolutely nothing you can do once Alzheimer’s develops in your brain – you are on a somewhat slow path to death. That was the harsh reality that I dealt with in late 2006. But there was something I could do – see that Ida was safe, loved and comfortable. And I could do something else; not let her death became another nameless statistic in the list of millions who have died from this disease. Thus my “Memories are Everything” climbs were born and since, 50 million people have followed my climbs and almost 1/3 of a million dollars raised for research. To be clear, this is not about my climbing, it’s about Alzheimer’s, but without my climbing, I wouldn’t have 2 million annual followers and a loyal team of connections thru social media. So it is an ‘and’, not an ‘or’. Climbing for Research Since Ida’s death, researchers have learned a lot about AD. for example, that the hallmark beta-amyloid plaques begins to form years, if not decades, before someone begins to shows signs of extreme forgetfulness. They have excluded many of the myths about the causes of AD, for example that Alzheimer’s is caused by aluminum, flu shots, silver fillings, or aspartame.1 Climbing for Education However even with all this information out there, nearly 60 percent of people worldwide incorrectly believe that Alzheimer’s Disease is a typical part of aging4 – it’s not – it is a disease just like Cancer or Heart Disease. In that same study, 40% believed AD was not fatal. So when I talk about education and awareness, these are the scary figures that push me up a mountain. What can be done to prevent getting Alzheimer’s? They have found a link between a possible role of lifestyle factors. For example a healthy diet, especially the Mediterranean Diet and the so called MIND diet can reduce the risks.2 Also exercise, being social, and doing things that challenge your mind might lower your risk.3 Again, at now age 60, I’m trying to model the very lifestyle I advocate.
7 Minutes that will change the way you look at Alzheimer’s
In this 7 minute video made for a TED Talk, researcher Samuel Cohen clearly explains what Alzheimer’s is, why we have not found a cure and what needs to be done. Well worth 7 minutes of your time, even if you don’t know anyone with Alzheimer’s. Climb On! Alan Memories are Everything
House Appropriations Committee Proposes Significant Increase in Alzheimer’s Research Funding
Alzheimer’s research budget would increases by $300 Million if today’s proposed bill is approved. Please contact your Congressional representatives and ask them to support this increase which would be the largest in history for Alzheimer’s. Use this link to find your Representative This summary is from the Cure Alzheimer’s Fund: Cure Alzheimer’s Fund is extremely happy with the House Appropriations Subcommittee bill for the National Institutes of Health (NIH) that was released today. The bill, medicine which still has to be approved by the Committee and full House, includes a $1.1 billion increase for NIH, a more than 25% increase for the National Institute on Aging (which funds more than 70% of the Alzheimer’s disease research at NIH), and calls for an additional $300 million of that increase to be used for Alzheimer’s disease research. The call for an additional $300 million would be a significant increase in funding for Alzheimer’s disease research and show a continuing commitment, even within continuing tight budgets, to find additional resources for Alzheimer’s disease research. The additional funding is a big step in the right direction of getting to the $2 billion a year in research funding experts have said is necessary to meet the 2025 goal of stopping Alzheimer’s disease. We will continue to work with Congress and the Administration to reach that $2 billion goal as fast as possible. The work of the House Appropriations Subcommittee on this bill has made that goal a lot closer and we applaud them for their efforts and their demonstrated commitment to Alzheimer’s disease research funding. Memories are Everything Alan
Alzheimer’s Killed my Mom Five Years Ago
It was 5 years ago today that my mom, Ida, died from Alzheimer’s. In thinking about her today, many wonderful memories brought a smile to my face. When asked about one of them, I said I remember as a 10 year-old sitting in the kitchen while she cooked dinner, talking about life. Even at 10 she ed me like an adult, we spoke like adults and she shared her values with me that define me today in many ways. As the decades passed and Alzheimer’s took hold of my mom, I became the adult and she became the 10 year-old. I became responsible for helping her know right from wrong, how to people, what to wear, when to brush her teeth. The parallels of life uncanny, uncomfortable and the illness unacceptable. In the final days, all my brother, my family and I could do was to take care of her, keep her safe and love her as she had us all our lives. Since 2009 then there has been great progress in understanding the disease but there still is no cure. Many families are still surprised when they get the of Alzheimer’s just thinking their mom or dad, or even husband or wife was just getting old. And they are shocked when someone in their late 40s or 50s are diagnosed with Alzheimer’s Disease. Caregivers are the silent victim of this disease often giving up their own life goals to care for their loved one. They often make such financial sacrifices that bankruptcy is required to keep going. This situation is unacceptable yet prevalent across the world. So it is with that mandate that I continue to raise awareness and funds for research on behalf of Alzheimer’s non-profits. And it is today, I remember my own mom with love, admiration and with urgency. Memories are Everything Alan
A Quick Update on the War Against Alzheimer’s
This 6 minute video addresses many questions about Alzheimer’s including the current status of , ment and prevention. Please turn off the television, go to someplace quiet and listen carefully to this outstanding short update. “We now have a good picture of the stages of the disease, going from this gooey toxic material that sticks to the nerve cells and kills them and then the nerve cells die from within, and then, even worse, the brain sees all this and thinks it’s an attack from the outside and the immune cells start to attack the nerve cells, and nerve cells die by friendly fire.” ~ Rudy Tanzi, professor of neurology at Harvard Medical School and director of the Genetics and Aging Research Unit at Massachusetts General Hospital Thanks to the Alzheimer’s Reading Room for the heads up on this report If you wonder why I care about Alzheimer’s, this is a video I took of my mom as Alzheimer’s slowly took her life. Please consider a donation to one of these non-profits. 100% to them, nothing to me. Do it for your children. Climb On! Alan Memories are Everything
A Promising Direction in Alzheimer’s Research: Dr. Huntington Potter
I had a wonderful opportunity yesterday, October 18, 2013, to meet with one of the leading Alzheimer’s researchers, Dr. Huntington Potter. He recently moved to Colorado to join the University of Colorado School of Medicine’s Department of Neurology and the Linda Crnic Institute for Down Syndrome at the University of Colorado Anschutz Medical Campus. Alzheimer’s and Down Syndrome Dr. Potter is well known for his discovery of the mechanistic relationship between Alzheimer’s Disease and Down syndrome. Current research estimates all people with Down syndrome will have the brain pathology of Alzheimer’s disease but only about half will have the associated degenerative cognitive symptoms. Dr Potters went on to tell me that his research led to the discovery of triplication of chromosome 21 in many cells of s with Alzheimer’s disease, leading him to postulate that people with Alzheimer’s have a genetic defect or an environmental exposure that leads them to develop mosaic trisomy 21/Down syndrome. Alzheimer’s and Rheumatoid Arthritis But he also brought up that those individuals who have rheumatoid arthritis do not get Alzheimer’s Disease. He said it was believed to be due to a protein released in the brain, Granulocyte-macrophage colony-stimulating factor (GM-CSF). That protein is now available as an FDA approved drug branded as Leukine and used for bone marrow transplant s. Dr. Potter connected the dots and researched if Luekine could stop Alzheimer’s Disease. In a mice study the results were impressive. After a 20 day ment, there was complete reversal of cognitive impairment in the mice. They are now looking to conduct human trails within a few months. In addition, individuals ed with Leukine for bone marrow transplants also showed a dramatic increase in memory, an unexpected consequence. He cautioned that more research was needed before it should be used on humans to Alzheimer’s. You can read more about this study through this link. Dr. Potter walked me through his research and gave me a tour of his lab at CU. I was very impressed. Colorado Connection Along with his associate, Jonathan H. Woodcock, MD, Assistant Professor of Neurology, they have established the University of Colorado Memory and Dementia Clinic. Now Colorado and neighboring states have a local specializing in Alzheimer’s Disease. Dr. Potter said the response has been overwhelming with many families already taking advantage of the for consultation, and ment. In addition, they will be able to access al trials at some point through the . The incidence of Alzheimer’s disease in Colorado is expected to increase 124 percent between 2000 and 2025—the largest increase of any of the lower 48 states. You can support Dr. Potter on his mission through the University of Colorado Foundation. Please read more through these links: Dr. Huntington Potter joins CU School of Medicine article Information on the University of Colorado Alzheimer’s Disease Clinic and Research Program Fascinating video about what CU and Dr. Potter are doing in Alzheimer’s disease research, looking at drugs that could ameliorate or prevent Alzheimer’s disease NPR interview with Dr. Potter regarding his Rheumatoid arthritis research and the Leukine human trials Thanks to David Geras, President and Co-Founder of GoldLeaf Caregivers for setting up this meeting. Climb On!AlanMemories are Everything
You Don’t Want It Bad Enough
At the end of my physical limits, I slowed down then fell to my knees. My high school track coach, now hovering over me like a bird of prey, let loose a primal scolding: “Get back up! Keep running. Arnette, you don’t want it bad enough.” After pushing myself so hard that I vomited on a daily basis, my weak ankles were taped before each practice and iced after, I still set records in high school but that was not enough. My coach had confused motivation and intimidation. Neither worked that day as I looked up at him and simply said “Coach, maybe you’re right.” That was almost 40 years ago and I remember it like it was yesterday. His methods were harsh and ineffective but his message had a ring of truth. As I approached the Balcony on Everest in 2008, my body began to shut down. I stepped off the route, unclipped from the fixed line and watched 40 down clad climbers pass by in silence. I knew I could go higher but also knew if I did, I could not go lower. I could hear my coach saying “Arnette, you don’t want it bad enough.” I wanted that summit bad, perhaps as bad as I had wanted anything in my life. But something was more important. That night on Everest, on my knees at 27,500 feet, I knew if I wanted to summit Everest, and survive, I had to do many things differently. I had the opportunity, the means and most important, the desire. On May 21, 2011 I stood on the summit of Everest. I felt tiny, insignificant. I thought of my mom. Sitting in my mom’s room we looked at her childhood pictures. “Now, who is that?”, I asked her pointing to one of her brothers. “Well, that is.” she stuttered. “Well that is. Hmm, I guess I don’t know who that is.” “That is your brother Bill.” I said gently. Pointing to a picture of her, she had no idea who that woman was. My mom’s Alzheimer’s was advancing. I wanted it to stop. I wanted it beyond wanting it “bad enough.” I wanted – more than anything in my life – I wanted. I wanted her to remember her brothers and sisters, her husband. I wanted her to remember me. But I was helpless to stop the disease. I was powerless to cure my mom. Four years ago today, she died from Alzheimer’s Disease. I don’t want another family to go through what we did, what my mom did. I want it bad enough In the last four years, we have learned a lot about Alzheimer’s. For example that maybe it starts 10 or 20 or even 30 years before symptoms appear. We have learned that a generation of promising drugs and therapies did not work – a new approach is needed. We learned and experienced that the financial consequences are severe. That the impact on caregivers and kids in Alzheimer’s homes is devastating. We have learned that we are not spending nearly enough on this horrible disease. I have learned that talking about Alzheimer’s is hard. Most people don’t want to talk about it … until it hits their family. I understand. I didn’t know what I didn’t know until it hit us. So today, August 16, 2013 take a moment to learn a bit about this disease. The warning signs, research, what the US Government is doing, the world view. If you already know a bit, then consider a donation. If you have already made a donation, then take a short walk. We do know that the defense against Alzheimer’s is taking care of ourselves through exercise. Don’t do it for me, or for yourself. Do it for your kids. It is not too late for them. Climb On!AlanMemories are Everything
The Longest Day: Alzheimer’s and Climbing
June 21st is the longest day of the year for the northern hemisphere but for Alzheimer’s caregivers, everyday can be the longest day. The Alzheimer’s Association has many events today to honor those with Alzheimer’s and their caregivers focusing on patience, salve strength, endurance, and challenge. I know that when my mom went through her Alzheimer’s journey, we experienced all of those as I often do while climbing. Patience On each climb, short or long, my patience is often tested. Waiting out bad weather on Everest or spending a week in my tent at 17,000 feet on Denali; each day seemed to pass at a snail’s pace. I was constantly tested to maintain focus, high spirits, and a sense of purpose. Caring for someone with dementia or Alzheimer’s shares these characteristics. It is easy to loose your temper or forget the purpose when asked the same questions over and over. It is tempting to want to quit even though you know you cannot leave your loved one alone for even a moment. For me, I drew on the reason I was doing what I was doing to keep going. Whether going for a summit or providing a moment of love that would be soon forgotten. Living in the moment provided the focus I needed to get onto the next moment Strength Sometimes people think I am strong to climb as I do, especially at my age! But the reality is that strength in climbing comes from balance. It is all about a healthy heart, lungs, body and mind. Researchers still do not fully understand Alzheimer’s Disease, but they are getting closer each year. What is known is that the only proven way to potentially avoid getting Alzheimer’s is to keep a healthy mind and body. It has been proven in multiple studies that daily exercise not only helps the heart but also the mind. Endurance I often say during my public speaking on climbing Mt. Everest that there are 1000 reasons to stop and only 1 to keep going. In three of my four Everest climbs, I found one of the 1,000 and on my forth, I found that one. Endurance is a trait often overlooked for caregivers. The daily tasks are demanding and often go unthanked. Starting with taking care of yourself is the key to taking care of others. Challenge There are no limits to the challenges of climbing, and that is one reason I love the sport. Whether climbing steep cold ice, high sharp rock or pushing the limits at altitudes where airplanes fly; the challenge is often between you and the mountain. It can be a lonely sport. I can only imagine what it is like having Alzheimer’s. I would sit with my mom for hours sometimes talking, sometimes laughing and often just quietly enjoying the moment. At times, my mom would become very still, very quiet. She stared off in the distance not focusing on anyone or anything. I wondered where she went during these times. Was she remembering her childhood playing with one of her eight brothers or sisters? Was she dreaming of what was to come? Or was she lost? Holding her hand gently, she would eventually come back. She would look at me, smile softly and then ask me “When did you come in? I would squeeze her hand and softly say. “Mom, I never left.” Learn the 10 Warning Signs of Alzheimer’s Climb On!AlanMemories are Everything