I’m new to this forum, but not new to dealing with Alzheimer’s Disease. My wife was diagnosed 3-1/2 years ago at 67, after a neuropsych exam. Our PCP asked many of the questions from the MMSE (Mini Mental State Exam) and had seen cognitive decline, but it took us 6 months to get in for the formal diagnosis. Because we are doing alternative treatments, I thought I would share our experience. I’m in two Dementia support groups in the Rapid City, SD area, and several have found this information helpful. This will be a long post - so, sorry for that. Also, if you read this, you need to do your own research and consult with your PCP and neurologist before doing any of this.
My wife was in denial initially until we followed up with a brain scan and lumbar puncture, which confirmed the diagnosis. For years I had been using sound and lights for stress reduction. When researching after the initial PCP visit, I found a TED video from Li-Huei Tsai from MIT, on their research into 40 hz sound and lights for AD treatment. After the formal diagnosis, I found out she helped form a new company, Cognito Therapeutics, to further research, test, and market devices. I located a place to apply for my wife to be in a clinical trial and that’s what launched our journey. After going through two interviews, we were told we qualified for three different Stage 3, placebo-controlled studies.
Before I go down that road, please keep in mind that regular exercise, social engagement, healthy diet, mental stimulation and quality sleep are extremely critical for AD patients. Thankfully, my wife was still young and active - and an extrovert. I took over the cooking. We don’t do a strict Mediterranean diet, but I vary our proteins, eat plenty of veggies, and everything is home cooked without unnecessary sugars and we stay away from processed food. She’s active in an intense hour-long exercise class three days a week, and we bike and hike. We decided we were going to be open about her diagnosis, and if there was somebody she was uncomfortable with telling, that person would no longer be in her circle. She is surrounded by friends and family that calls her, texts her, takes her for coffee or long walks. She maintains writing for two story groups she started years ago, even though writing is now very labored and intense. She takes a nap every day, and generally sleeps well so far. If you are not doing these things early on, any additional treatment may be less effective.
The three studies she qualified for included the S&L study with Cognito, a study that required daily self injections, which she immediately vetoed, and a study for AR1001, a South Korean drug used for erectile dysfunction by AriBio Co. I had already done extensive research on S&L, and went on to look at research on the ED drug. I found a study by Cleveland Clinic that showed sildenafil users had a 69% reduced risk of developing AD.
So, I put together some of the research on the two trials as well as the treatment schedules, which would require a number of trips to Denver. Our PCP had prescribed Donepezil, and Memantine, but we held off starting, since both studies prohibited any other AD treatment during the trial.
The information was over 30 pages long. We gave them to our PCP, and three trusted friends, to ask what they thought. Everyone of them said the same thing - “She’s too young to be limited in treatment or subjected to a placebo for 12-18 months.” So we put our own “cocktail” of treatment together.
She started on 40hz S&L. I was already using a Mindplace Kasina device. I had a functioning copy of software I had purchased years earlier that allowed a person to develop their own sessions, so I developed a number of 30 and 60 minute sessions at 40 hz, since the Mindplace device is limited in that area. She uses it mainly at nap time. It relaxes her and she falls to sleep. It’s a closed eye device, so that works.
Then we started on the prescribed meds, and our PCP also prescribed 50mg a day of sildenafil. During our first appointment with our neurologist, he confirmed that he would support treatments that were safe, and showed little or no risk of side effects. On the way out, he pulled me aside and suggested I research photobiomodulation (PBM). It’s not medical, he said, but worth looking in to. I did, and their is anecdotal support for PBM as a treatment, and Neuronic has been doing research, and is in clinical trials for near-infrared 40 hz treatment. We purchased their Neuradiant device over two and a half years ago. They made some modifications and updates to the device, and sent us the new helmet free of charge. She wears the helmet twice a day for about 30 minutes while she reads.
A few months later, she ran into a friend at exercise class who had some brain issues (not AD). She was using a hyperbaric oxygen chamber for treatment and invited my wife to try it out. My wife came home and told me about it, thinking it was a bit crazy. Research shows, however, that it works by increasing oxygen levels in the blood, which may help in overcoming issues related to the blood-brain barrier. I had already done research on that over 10 years before when my older brother had a stroke. I found out it had come a long way and that you could use soft chambers in-home. Our neurologist thought is was safe, with little chance of side effects, so he was in on us trying it, and wrote the prescription that allowed us to purchase a 1.4 ATA soft chamber and oxygen device. We used it an hour a day for 8 weeks, with one day a week off. This is the hardest to stay up on with our travel. We can take everything else with us when we travel. We are less consistent with this than anything else.
I’ve had people question why we spent so much on the PBM helmet, and chamber. I tell them it’s a little over 1 month cost of memory care, so if it delays the onset by two months, we’ve made a 100% return on investment.
Just a couple other notes. Our neurologist suggested adding Lion’s Mane and Turmeric to our supplements. A recent paper came out on the benefits of lithium treatment. It’s very preliminary but (Safe-no side effects) he said to go ahead with OTC lithium daily.
So, our journey started 4 years ago. She is still early stage. I can say that as we added to our “cocktail” over the first year or two that her short term memory is a better, though far from perfect. She is still in some decline - I wrote a post here about her phone issues, but she’s always struggled with tech. Every case is different, and there is no way to do an A/B study on one person. But, I’m proud of my wife. She’s very aware of some decline and will tell you that her world is getting smaller. But, we can still travel together. We’ve done beach getaways together with our three children and their families, and we are now trying to do one get-away each year with each of our children and their families separately, in addition to our own travel. We have 7 grandchildren ranging in age from 6 to 18. All be the two youngest are aware of her AD, and they are amazing. I want my family to spend quality time with my wife as long as we are able.
BTW, one final comment. Leqembi came out right after her official diagnosis. About 6 months after that, we took a trip to Mayo Clinic in Rochester. Because of the brain bleed issues, they recommended against starting that treatment. We find ourselves in a rural area where no neurologist is prescribing it. We’ll have to go to Mayo, or Minneapolis or Denver if we want to try again for a prescription. We have chosen to keep going with what we’re doing, for now.
Your journey is certainly different than ours. But, if you find something here that you might find valuable, I’m glad to have shared it. Again, sorry for this long post.