Please Share Someone, you may know, with Younger-Onset Alzheimer’s
An acquaintance, you may know, with Early Onset Dementia
It was in 2011 and 2012 that I began to notice. I can’t give an exact date since, unlike other ailments, there is no specific time to pinpoint; no doctor visit where you hear the dreaded word ”cancer” or, like me, “heart murmur.” In those years, I would talk for hours about work, running, or our travel plans, and I started to notice that, from time to time, Catherine would ask me a question that seemed a bit odd. I just chalked it up to my big mouth: there I go running off at the mouth and all she was hearing was blah, blah, blah. But that was the first clue.
I had taken a job that now required me to travel more than usual, so when we were together, I felt compelled to bring her up to date on all that went on while we were apart. She would listen, but more and more, she would ask questions to which I was sure she knew the answer. As time progressed, I started to make comments to her about asking the same question twice, though it was not all the time and it was never more than a few times on a specific topic.
Just prior to my heart valve surgery, Catherine had gotten a new boss who was a very shake-things-up type of guy. Her routine was her cornerstone, so stress at work went way up. Over time, we became increasingly convinced that she might lose her job, since her boss had now put her on probation and entered her into an employee improvement program.
That is when we started actually going to doctors to try to figure out what was going on. Some test were done to rule out other possibilities. After a cognitive test that lasted several hours we were now starting to put the pieces to the puzzle together.
While in the hospital for my surgery I really started to notice something serious: Catherine was staying at a nearby hotel, sometimes she would forget to call me when she arrived at the hotel or would take several hours to get back to the hospital. Catherine can always recall things in the past way better than I, but it was what happened yesterday or earlier that day that was unavailable for instant recall.
After my surgery, it slowly became a reality that Catherine was going to lose her job one way or another, and we now had quite a bit of documentation concerning her condition. The diagnosis given, since she was 53 at the time, was Younger-Onset Alzheimer’s.
I am sure that some of you are very surprised to learn this, which is why we think it’s so important to share: in other words, there might be folks around you that you would never know that they have this condition, especially in the early stages. Our hopes are that our story will find its way to someone that would find this information useful since we strongly believe that the sooner the better is the best policy.
Now I must make a disclaimer. Neither of us are experts on this subject and I do not plan on giving a lot of facts and figures. This is about what we feel to be true:
The Importance of Social Engagement
As time goes on people with this condition have a tendency to withdraw socially but we have found that it is very important to keep engaged. The social interaction helps to make stronger connections, and, in turn, stronger memories. She might seem a bit aloof, at first, but her smile is captivating, she knows no strangers, and as a pet and baby lover she is very easy to talk to. She loves telling others about our adventures, and I fill in the details when asked questions to which she may not know the answer. It’s important to note, though, large groups can be problematic since multiple conversation can come in as simply white noise.
The Importance of Early Detection
I cannot stress enough the importance of early detection. It is not very obvious at first, but if you suspect that someone close to you is struggling, get the testing done. As in Catherine’s case, documentation can protect one from losing their job. Like many others disabilities, there are benefits available, but first you have to prove that such a disability exists.
Treatment plans are based on getting them started as early as possible since there is presently no cure. Such treatments don’t restore the damage already done but simply reduce the symptoms of Dementia.
Presently Catherine is taking the following:
Donepezil (more commonly known as Aricept), 10mg
In addition to pharmaceutical remedies, there are all sorts of supplements on the market to increase brain function and we have tried most of them, including vitamin B-12, C, D3 and E; turmeric; resveratrol, coconut oil, peppermint oil, and probiotics.
Some of you might have heard Catherine talk about a book called The Grain Brain: The Surprising Truth about Wheat, Carbs and Sugar—Your Brain’s Silent Killers. The premise is that there is a connection between your gut and your brain, and that Wheat/Gluten can cause an array of cognitive issues. It is one of the reasons that she is gluten-free and the book in general, is a great read.
The Importance of Having Fun
You read all the time about the benefits of red wine, but some studies even suggest a shot of whiskey has benefits for the brain. Moderation is the best course of action, though, as the more you drink the more you forget.
We are also firm believers in the benefits of travel, as we feel that exciting new experiences go into the long term memory unaffected by the condition. When an individual sees the same thing everyday, these experience go into the short term memory part of the brain and there it disappears. Their partner comes home and asks, “What did you do today?” and the answer is, “I can’t remember.” The frustration begins for both and the spiral downward is reinforced.
Don’t get me wrong, I am not suggesting that the answer is to Run All Over The World. It can simply be a 5K in a nearby city and a visit to a monument or museum, but the premise is that exercise coupled with a memorable experience is the key.
The Importance of Dedicated Support
Support might be the most difficult for me, as you have to be all in and realize that you probably will be together 24/7. I am not the type of person that rushes to others for aid. However, leaving the affected person home alone only accelerates the progression of the disease, and in such cases, you won’t be there to see the signs until it is too late. Additionally, the affected person may need assistance financially, with work, and with medication: I have seen there is a difference when Catherine misses a dose or two of her medication, and this is when the partner needs to take an active role. Furthermore, it is good to have someone to encourage social involvement when the affected person wants to withdraw.
Much has been said about support groups, too. I have gone online several times looking for support groups, but frankly, we have been too busy enjoying life to take advantage of them, so here I will just say that it is very important to support loved ones with this condition.
Sleep and Exercise
The last two are critical, the first one being exercise. Catherine and I try our best to get some form of exercise everyday, as it stimulates the brain and the sense of accomplishment goes along way when other things in life might not being going as planned.
The second is sleep. With Younger-Onset Alzheimer’s, deposits of beta-amyloid protein fragments (plaques) and tau protein strands (tangles) form in the brain, causing nerve cell damage. While Catherine sleeps, however, some of these plaques and tangles are removed, so I try my best to make sure she is able to get 8-9 hours of sleep a night.
Some of you may be asking, why are you Running All Over The World, given Catherine’s condition? Very simply, we have decided to see as much of the world as long as we can and to stay fit at the same time. Constantly changing environments seems counter-intuitive, but it is our belief that all the exciting destinations and new friends along the way help to form long term memories since that part of the brain is not affected.
And what about what I call “the blue days?” Make no mistake, there will be bad days, and I can’t say I have the perfect solution. Simply saying, “I love you,” will not always work since, from the point of view of the affected loved one, they are a burden. I recorded a voice memo for Catherine to listen to on those blue days, and have our song, You and Me, by the Dave Matthews Band playing in the background. Two lines in this song really sets the tone for us: When we get to the ocean, going to take a boat, to the end of the world, all the way to the end of the world. You me together, we can do anything.
By now some of you may be wondering what to do with this information. First, talk about it with people you may know and share this information with others that might have the same situation at home. Give them my contact information listed below so we can then network and share best practices. There is plenty of information available at ALZ.org as well. As I said before, the earlier the better since the present drugs simply reduce the symptoms of Dementia.
For concerned family, friends and acquaintances, rest assured that nothing really has changed. You can email me at firstname.lastname@example.org Catherine at email@example.com. If you have a particular question I would be more than happy to answer. No tears please, though prayers would be greatly appreciated. We ask that you don’t feel sorry for us because, as you can see, we are really enjoying life. The usual hug would be nice the next time we see each other, but try not to dwell on the situation. Our long term plan is to keep going till a cure is found, and until then, we are going to see as much of the world as we can.
About the MINDSET Program
MINDSET is a Phase III clinical research program evaluating an investigational medication, RVT-101, for mild-to-moderate Alzheimer’s disease. Researchers are investigating how effective RVT-101 in combination with donepezil (sometimes known as Aricept®) will be in helping with patients’ cognition and ability to perform daily living activities, as compared with donepezil alone.
About 1,150 people worldwide are expected to participate in MINDSET.
What does study participation involve?
Study participation involves:
•Attending a study-screening visit to determine eligibility for the study
•Coming to the study center for 9 study visits (including the study-screening visit) over a 33-week period to assess health and/or study drug effects
•Taking study-provided donepezil (the generic form of Aricept®) throughout the course of the study
•Taking the investigational drug or placebo for up to 24 weeks
•Caregiver participation to answer questions asked about how the person with Alzheimer’s is feeling and functioning
•At the completion of the study, the opportunity to participate in a 12-month extension study where all study participants will receive the investigational medication
At the study center, study staff will discuss participation in MINDSET in more detail.
Why participate in MINDSET?
Information collected from MINDSET may help with the development of new drugs to treat Alzheimer’s disease.
Study participants will receive, at no cost to them:
•Study-related monitoring from study physicians and medical teams experienced in Alzheimer’s disease
•All study‐related exams and tests
•The opportunity to receive the investigational drug
•Donepezil (the generic form of Aricept®), provided to all study participants at no cost
Transportation assistance or travel reimbursement will be provided to study participants. Compensation for study-related time may also be provided.
•Study participants can continue to see their regular doctor(s) while participating in MINDSET
•Medical insurance is not required to participate
•100% of study participants who complete the double-blind study will be eligible to continue into a 12-month open-label extension study where all participants will receive RVT-101
Are you or a loved one interested in participating in MINDSET?
The Investigational Drug
How does RVT-101 work?
RVT-101 works by raising levels of acetylcholine, a vital chemical in the brain that helps with cognition and performing daily living activities. RVT-101 increases the release of acetylcholine directly, similar to turning up a faucet. Aricept® (donepezil), the most widely used medicine to treat Alzheimer’s today, also increases acetylcholine in the brain, but does so indirectly by preventing acetylcholine from being cleared from the brain, similar to blocking a drain. In combination, RVT-101 and donepezil work together to increase acetylcholine by both turning up the faucet and blocking the drain.
RVT-101 is an investigational medication (a drug that is not yet approved by a regulatory authority such as the FDA). It is a tablet that is taken once per day, with or without food.
Because RVT-101 is an investigational medication, it is available only through this clinical research program.
Has RVT-101 been tested in previous clinical studies?
RVT-101 has already been tested in 13 clinical studies, including a 684-subject study where the combination of RVT-101 and donepezil was observed to provide statistically significant benefits on study participants’ cognition and ability to perform daily living activities, as compared to donepezil alone. The MINDSET program aims to confirm these results.
What are study participants’ chances of receiving the investigational drug?
All study participants will have the opportunity to receive RVT-101 during their participation in the MINDSET program.
The MINDSET program will include a 6-month “double-blind” study followed by an optional 12-month “open-label” extension study.
Participants in the “double-blind” study will have a 50% chance of receiving the investigational medication, RVT-101.
During the double-blind study, study participants will be placed randomly (by chance) into one of two groups:
Investigational Drug Group:
Donepezil (the generic form of Aricept®) + RVT-101
Donepezil (the generic form of Aricept®) + Placebo
Open-label extension study:
Following completion of the 6-month double-blind study, all study participants will have the opportunity to participate in an “open-label” extension study. In the open-label extension study, all study participants will receive the investigational medication, RVT-101. Participation in this extension study will last for 12 months.
All study participants will receive study-provided donepezil (the generic form of Aricept®) throughout their involvement in the MINDSET program.
Well that is it in a nutshell
We got involved through a conference call we participated in a few months back. The conference call was put on by ALZ.org. It was informative and the study seemed promising. We have tried to get in various other studies but did not meet their criteria. They don’t actually tell you why but just a yes or no.
The screening process for this study was extensive and took three visits to complete all the testing required. Verbal and written tests to confirm her level of cognitive impairment and even had many questions for me to answer. Blood test, MRI and various neurological tests.
We actually had to adjust our travel schedule since the first 4 visits have to be exactly 3 weeks apart and when we come back in for tests after each 3 week period it is an all day affair at the Atlanta Research Clinic which is about 10 minutes from our usual hotel in Atlanta.
The staff there are very good and understanding. After the first 4 visits then will have 5 visits that are 4-6 weeks apart. After the 6 months she will continue on for 1 year and at that time she will get the drug RVT-101 and the belief is that after that period of time the drug will be approved and on the market.
There is a down side to this study and that is the fact that she was currently taking twice the amount of donepezil. She was also taking a shake made of Axona which is classified as a prescription medical food intended for the clinical dietary management of the metabolic processes associated with mild to moderate Alzheimer’s disease. Axona is not a drug and is different than currently available Alzheimer’s drug treatments. Adding Axona to Alzheimer’s disease management may address a specific nutritional deficiency not addressed by FDA-approved Alzheimer’s treatments.
This study is very specific and is intended for folks that are only taking donepezil at the 10mg level for at least 1 month before starting this clinical trail. She had also started taking Amenda XR but that was only for a few weeks. On the upside we both actually get paid per visit. 80 dollars per visit for her and 60 dollars per visit for me. We also feel that we will be taking an active role in finding a cure for this disease.
We just finish up another all day testing for the final approval to actually start the program. Both of us were asked hours worth of questions and Catherine had to take some written and oral tests. They checked our compliance with the placebo that we were given 3 weeks ago and made sure that her condition has not changed drastically since the last visit.
We were finally given approval to enter the program and were given a bottle that was simply listed RVT 101 or Placebo. The questions they asked me about Catherine gave me a good idea of where she is in terms cognition. They stated that previous studies showed significant benefits so we should see some improvements quickly or not.
I have noticed that she has not really gotten worst in the last 18 months since we have been nomads so if we have to wait another 6 months before she will for sure get the new drug it is well worth it. I doubt if her health will decline during that period of time. Also it is our belief that our current nomad life style is a benefit to her. I talk about that in great detail in the previous blog called. Please Share Someone, you may know, with Younger-Onset Alzheimer’s.
This is an update
We made it through the first phase and have been approved for the second phase which is getting the actual drug RVT-101. We had an entire day of testing and I can say that she has not gotten much better but also has not gotten any worst.
We did get some disappointing news about where we go from here after this next 8 sessions are done. Figure that will take from 8-10 months but after this phase she has to come off the drug. They figure it will still be several years before the drug hits the market so we will have to look for other types of drugs or therapies for her.
Travel is one that we will continue to do but have been thinking about getting a small apartment in ATL since we probably will slow down after next year or the year after. Here is something that came across on Facebook that sounds promising.
Does Exercising Your Brain Do any Good?
These days, a lot of people will tell you, “I do puzzles to keep my brain sharp.” But have you ever wondered if those endless crosswords and Sudokus actually make a difference in reducing “senior moments”… and possibly even dementia?
Scientists from Tel Aviv University have recently uncovered the answer … continue reading to find out!
Research from Tel Aviv University has proven that exercising your brain can truly make a difference in preventing Alzheimer’s disease. But the way it works might surprise you!
Alzheimer’s disease develops when certain types of proteins (called amyloid-betas) aggregate into plaques. These plaques build up between the nerve cells responsible for the brain’s electrical communication, causing the classic signs of dementia like slow speech and memory loss.
However, just as there are two types of cholesterol—one healthy and one dangerous—the same is true for amyloid proteins. Scientists now believe that a high level of amyloid-beta 40 is healthy, while amyloid-beta 42 is dangerous because it’s more likely to accumulate into plaques. If you have a high ratio of 40 to 42, you’re likely to be in good neurological shape.
So how does exercising your brain make a difference?
Here’s how it works, according to Nature Neuroscience
Dr. Inna Slutsky and her team showed that by using high frequency “bursts” of electricity in the animal hippocampus—the center of learning—they could increase the production of amyloid-beta 40.
This led the team to conclude that people who experience regular “bursts” of sensory experience can physically increase the level of amyloid-beta 40 in their brains. These kinds of bursts include environmental changes, new experiences, emotional reactions, and sessions of learning and focus (including completing crossword puzzles).1
Scientists are even optimistic that this discovery could, someday, lead to a gentle electric treatment for Alzheimer’s. But don’t worry—it would be pain-free! Says neurologist Amos Kocyzn, also from Tel Aviv University, “Unlike crude electroshock treatments used in schizophrenia, we are talking about a very delicate, gentle and highly focused electrical stimulation.”
How to create your own “bursts”
Prevention is always the best medicine. There are many easy, free ways to create the same types of electrical bursts in your own brain.
Each of these applications forces your brain to adapt, think differently, and re-wire your neural network in a process scientists call neuroplasticity.
- Read every day, and not just your normal fare. If you always read the newspaper or technical journals, try fiction, and vice versa.
- Do puzzles. Crossword puzzles, Sudoku, riddles, logic puzzles… anything that makes you stop and think for a period of time will do it.
- Learn a new language. A study performed at the Swedish Armed Forces Interpreter Academy showed learning a language causes significant brain development in the hippocampus (center of learning) and three areas of the cerebral cortex.“There is a lot to suggest that learning languages is a great way to keep the brain in shape,” said Johan Martensson, a psychology researcher at Lund University, Sweden.2
- Take an online course. Several universities offer free “open courses” with materials and lectures online. If you always meant to learn more about French culture or astrophysics, now is a great time to start!
When you perform “brain exercises” like these, you literally strengthen your brain, increase the strength and connectivity of your neural networks, and you get the benefits of increasing your levels of healthy amyloid-beta 40 proteins.
Whatever you decide to do, it’s my opinion that you should start soon. It’s never too late to start fighting Alzheimer’s disease.
We are doing our part with seeing and doing new things everyday and also she does a lot of reading on her iPhone, As we continue to travel going to make a better effort to learn some words of the natives and maybe a crossword puzzle or two.
In response I got a message from a friend that mentioned another study that sounds promising. I had heard about it before but now that we will be kicked to the curb in less than a year need to continue for new ways to stave off the disease.
Of the mice that received the treatment, 75 percent got their memory function back.
Australian researchers have come up with a non-invasive ultrasound technology that clears the brain of neurotoxic amyloid plaques – structures that are responsible for memory loss and a decline in cognitive function in Alzheimer’s patients.
If a person has Alzheimer’s disease, it’s usually the result of a build-up of two types of lesions – amyloid plaques, and neurofibrillary tangles. Amyloid plaques sit between the neurons and end up as dense clusters of beta-amyloid molecules, a sticky type of protein that clumps together and forms plaques.
Neurofibrillary tangles are found inside the neurons of the brain, and they’re caused by defective tau proteins that clump up into a thick, insoluble mass. This causes tiny filaments called microtubules to get all twisted, which disrupts the transportation of essential materials such as nutrients and organelles along them, just like when you twist up the vacuum cleaner tube.
As we don’t have any kind of vaccine or preventative measure for Alzheimer’s – a disease that affects 343,000 people in Australia, and 50 million worldwide – it’s been a race to figure out how best to treat it, starting with how to clear the build-up of defective beta-amyloid and tau proteins from a patient’s brain. Now a team from the Queensland Brain Institute (QBI) at the University of Queensland have come up with a pretty promising solution for removing the former.
Publishing in Science Translational Medicine, the team describes the technique as using a particular type of ultrasound called a focused therapeutic ultrasound, which non-invasively beams sound waves into the brain tissue. By oscillating super-fast, these sound waves are able to gently open up the blood-brain barrier, which is a layer that protects the brain against bacteria, and stimulate the brain’s microglial cells to activate. Microglila cells are basically waste-removal cells, so they’re able to clear out the toxic beta-amyloid clumps that are responsible for the worst symptoms of Alzheimer’s.
The team reports fully restoring the memory function of 75 percent of the mice they tested it on, with zero damage to the surrounding brain tissue. They found that the treated mice displayed improved performance in three memory tasks – a maze, a test to get them to recognise new objects, and one to get them to remember the places they should avoid.
“We’re extremely excited by this innovation of treating Alzheimer’s without using drug therapeutics,” one of the team, Jürgen Götz, said in a press release. “The word ‘breakthrough’ is often misused, but in this case I think this really does fundamentally change our understanding of how to treat this disease, and I foresee a great future for this approach.
The team says they’re planning on starting trials with higher animal models, such as sheep, and hope to get their human trials underway in 2017.
You can hear an ABC radio interview with the team here.
That would be perfect since that would be about the time she will have to come off RVT-101 and I would not mind if we had to live in Austraila for awhile. We are planning a Half Marathon in nearby New Zealand next November.
Catherine and I had a very long discussion on her progress with the new drug the other day. I will get a better gage when we go back for our Mindset appointment next week. Her short term memory has not improved but I must admit her cognitive skills have gotten better. That is what they have said about the drug she is on and it is interesting to watch the difference.
In other words there are things she just figured she could no longer do and I would have to take up the slack but now I see her trying to do those things. She has become more independent, self assured and trying to tackle tasks that she gave up on a couple of years ago.
As an example she now tries to figure out where we are going in the future. She use to just rely on me but now wants that information so she can refer to it on a calendar and not have to ask me several times a day. It is not easy for her and from time to time there is frustration but I applaud her for the effort. I truly believe over time it will get easier.
Her independence manifests itself in her desire to go for walks by herself. Nothing major but to walk around the campground or hotel complex and to return with a big grin on her face is something I come to cherish. Baby steps and sometimes two steps forward and one step back is not so bad. I really look forward to the 100 or so questions they will ask me on her next mindset appointment. It always seems to give me a great gauge of where we are now and hold off for a little while longer where we might be going in the future.
For whatever reason I truly believe they will find a cure in her life time and as the doctor that came up with RVT 101 said “within the next 5 years people like her will live a good life and will die from something else just like everyone else”. I understand they just found a vaccine for AIDS. Until that time we will continue to enjoy each day that is provided to us.
A few weeks back I participated in a online series call Awakening from Alzheimer’s. In that 10 video series they covered many strategies along with suggested Vitamins and minerals. I had gone that this thought process at the very beginning but it seemed to cause problems with here digestive system.
This time around many of the suggestions seemed to make more sense so decided to add most to her daily medications.
Here is the list
Some might think that maybe we should only do one or the other, new drug, new vitamins at a time but I decided that sense she will have to stop RVT 101 within the a year I might as well try everything available. Digestive system seems to handling the new regime well. Time shall tell.
After that series they offered a short book offering some other ideas to improve ones life dealing with this disease. I have not but will read the book in the near future and offer it here.
The End of Alzheimer’s, A Differential Diagnosis Toward a Cure
Something we both found to be very alarming was some of the conversations we had with several folks while we were on a tour during our recent tour of Cuba. We now wear Alzheimers awareness bracelets. A number of people asked us about why we were wearing them and Catherine decided to tell each of them about her condition.
The part that was alarming was during these conversations we found out that some had lost a loved one to the disease. Paula had been on two prior trips with us and she lost her husband. He was only 62 and was diagnosed 5 years prior. Another daughter, son and Aunt lost their mom/sister. She was only 60 and was diagnosed 5 years prior. The last lady has a sister who is in her mid 60’s and is in the severe stage of younger onset Alzheimers.
They all seemed very interested in our story and our approach to her illness. The other thing I noticed is that each of them were late on noticing there was a problem at all. The other alarming aspect to these conversations was that out of the 90 folks, 6 knew someone that was effected by this disease, almost 7 percent.
Our Mindset appointment was very quick today and they did not ask me any questions as they usually did. They did not ask Catherine any either. Just pee and blood, very strange. We also do not have to come back until 6 weeks from now which is good since we have multiple trips planned for January.
I will close out with this update with one thought about what I have also noticed since Catherine has been taking RVT-101 for a month now. I spoke earlier about her desire for independence which is great but I have also noticed that she now wants things exactly how she wants them. Not totally bad but different. I think it comes from her desire for independence and now feels free to ask for things the ways she actually wants them instead of just taking things as is.
At first it was an adjustment for me because I then would try to accommodate her requests but now I have figured to allow her to make her own adjustments to her desires. In other words if she wants something done a certain way, I now ask here to do it herself.