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Adventures In Alzheimer’s and Parkinson’s / Chapter 2: The QEEG 5/28/22
Many of you may know that my exwife/partner, Cynthia was diagnosed with dementia several months ago. It has been a steady decline in memory, aphasia and functioning since then with no drug treatment available yet (Aduhelm, which is FDA approved, comes with dubious efficacy, a $28 per annum price tag and causes brain bleeds).
Me, the stubborn Jew that I am, will not take no for an answer. So, I have been combing the internet for off the grid (non pharmaceutical) treatments. First I came across the Keto diet which posits changing the energy source for the brain from glucose to ketones will reverse the disease.
In fact, promoters call it Alzheimer’s Type3 diabetes. However, results are anecdotal, no real scientific study and the high fat diet affects liver function and blood pressure. Plus, Cynthia would not be able to tolerate such a diet.
The search continued on and, fortunately, YouTube’s algorithm suggested a video by Dr. Paul Chazot of Durham University, England. Below is the video that began the journey to get Cynthia the infrared device pictured below. A device available for consumer purchase only in the past two months.
In brief, infrared light, of a specific frequency is focused on the different quadrants of the brain. A 2021 triple blind study in Texas demonstrated improvements in cerebral blood flow, mitochondrial activity, cell membrane health, amyloid protein reduction and improved memory (as much as 20% in five weeks on the MMSE scale (a standardized measurement of memory).
We had many hurdles to overcome to get the device, which will arrive next Tuesday. I first contacted Dr. Chazot in England. He referred me to Dr.Marvin Berman in Philadelphia, who will supervise the treatment. Then we had to run it by her neurologist. Thankfully, he gave full approval, as there are no side effects, some basis for red light therapies and no other viable alternatives. He had become part of Cs team on this. It was gut wrenching waiting to see if he would approve, as a thumbs down would have put an end to the experiment.
The device is manufactured by a German outfit, Neuronics, and costs $5,000. Hefty, but it comes with an 80% refund policy if it does not help. Believe me, getting a $4000 refund check wouldbe the saddest refund I might ever get.
Cynthia will be getting a specialized brain mapping called a QEEG which measures brain activity from 19 locations. The findings will be used as a baseline to evaluate improvement or decline in her brainwaves as the treatment progresses. Slow alpha waves are an indicator of positive or negative change of the disease. Her psychologist will make adjustments accordingly.
An unexpected finding of the study showed significant improvement for Parkinson’s as well, which you will see in Dr. Chazot’s video.
I know many of you are experiencing the devastation of this disease through a loved one. Of course, there is no guarantee, but I will post updates to this thread following Cynthia’s use and progress. We hope for, at least, a slowing of the decline. Please pm me if you want more detailed info.
Chapter 2: Yesterday, C and I travelled south to get a Qunatitative EEG, or brain mapping. This specialized reading of brain activity registers brainwaves from 19 locations.
Of particular interest are alpha waves which, when elevated in amplitude indicate dementia. So this establishes a baseline and ongoing diagnostic tool going forward. The technician placed a futuristic spidery, apparatus on Cs head (the device costs $50k with software!).
Cynthia was anxious and the brainwaves showed it! Chaotic and dense. As she relaxed the readout became calmer and more organized, but, the alpha waves were elevated, of course. It was an awe inspiring experience to see Cs brain at work in real time. Lol, I couldn’t help think8ng of some of my more complex midi tracks and wav files.
It felt so much better to be a part of a technological wonder than, say, witnessing someone getting chemotherapy. I thought of StarTrek’s Dr. McCoy tsking at the barbarism of 20th century medicine. Poison, cut, burn. But there we were, doing none of those, but being immersed in waves and light. These modalities will surely replace what is promoted now. Neuroscience is bursting. Light and sound are inevitabilities, IMO. The suspense is, can we avail these techniques now, or is it still too soon?
Comments
Wow. You’ll be in my thoughts. Pls update this thread when you feel like it.
Good luck bro.
I can't begin to tell you how much I hope this helps. I've only had a tiny peek into the struggle you deal with daily and I don't know if I could handle it. I'm inspired by the patience and strength you have. I hope to see happy news in the future.
I understand your imminent lull comment now… I really hope this works for your partner and therefore you. Music of course is supposed to help with Dementia so she can’t be in better hands than yourself. All the best.
@LinearLineman
I'm sorry to hear this.
I know of a few people who have encountered Alzheimer's and dementia.
Have you looked into Transcranial Magnetic Stimulation?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6948923/
and
Here's a wiki link.
https://en.wikipedia.org/wiki/Transcranial_magnetic_stimulation
Fingers and other stickyoutybits crossed for you @LinearLineman, keep us posted.
Thanks for sharing. Currently no loved ones are experiencing this but my dad passed after a long run with early onset Alzheimer’s. Interested to learn of your experiences and hoping for a good outcome for your partner.
I'm glad you have a plan and hope. We all are products of how well our brain functions and it's good that Cynthia has you in her life as she enters this stage of aging. Being the care giver in these cases is a test of character.
A terrible thing. I’ve experienced this at a slight remove. My father in law lived with us for four years before he passed away aged 99. His dementia increased but we were able to care for him right up to the end.
There was an issue of Scientific American concerning Alzheimers and one thing it mentioned was how women are disproportionally affected for reasons they’re trying to figure out. Another thing was the importance of getting a good amount of sleep each night. I worry about that for my wife who seems to get much less sleep than me. Did your partner sleep well?
It will be wonderful if the helmet works as hoped.
My mom suffers from vascular dementia and my dad is a closed minded &?@!# so there is no chance of trying something like this until he is no longer in the picture. It is a sad state of affairs. I hope this works for you
My wife and I are whole food, plant based eaters and are somewhat well read on the subject. One book we have is https://www.amazon.com/Alzheimers-Solution-Breakthrough-Symptoms-Cognitive/dp/0062666479/ref=as_li_ss_tl?_encoding=UTF8&qid=1505244981&sr=8-1&linkCode=sl1&tag=foodrev-20&linkId=5f465eef23cfc0e7b228d316e0745422
They also have a podcast. Might be of interest. Hoping the best for you and your partner.
Good luck with the therapy. Reversing some of the cognitive impairment would be a great outcome. Even slowing down the progression of the disease would be a victory of sorts.
Do keep us posted.
This kind of diagnosis completely changes your life, whether that diagnosis is for yourself or someone you love.
Very sorry to hear of these difficulties, LL. You and I don’t agree on many things, but it seems we’ve both been affected by a family member suffering from the same degenerative disease. Best of luck to you and your wife (I don’t really think there is such a thing as an ex-wife or ex-husband if there is still love and a connection between the two).
Unfortunately, the government doesn't feel this way. I think there's an industry that has emerged to "care" for some people that need special treatment. LL's ex is very lucky
to have him in her life.
Yes.
Thanks for posting this. We recently lost my father to this very thing (Parkinson's and Dementia and C19). I wish we had known about this...I pray that this will be a successful treatment for your ex-partner.
I wish you strength in your search for answers. I lost my dad to Alzheimer's in February after a long struggle. The last two years were the most difficult because I couldn't spend as much time as usual with him due to Covid lockdown restrictions. He never got Covid, though, so he was with his children at the end. We talked several times a day regardless, but it's not the same and it was hard on everyone. It's a painful, emotional disease for all concerned.
Remember not to impose your reality on her, don't argue with her ideas about what is happening, don't correct her version of reality, learn to converse without asking questions. Read up on "validation therapy". All the best to you.
After my wife's diagnosis four years ago, the best advice I got was from two friends who said essentially the same thing. You need to take care of yourself during the process. You're no good to her, if you wear yourself out.
Also, you're lucky to have your music. You can channel your feelings there. Most people don't have a creative outlet.
Hoping for the absolute best for you both. So sorry to hear this.
Thank you listening and responding @BirbHope @MadeofWax @HotStrange @Wrlds2ndBstGeoshredr @FastGhost. We shall see.
@GeoTony, the lull is just a bit of creative exhaustion, but the stress over this has been intense. Just yesterday C went back to square one on the whole process… why are we spending the money… who are the doctors, etc. I gently brought her back to an understanding… till the next time.
Thx @gravitas. I'm curious about that. Neurofeedback is another possibility, but no real hard evidence it helps. One thing at a time, I guess. This has taken a couple of months to get to this point with lots of craters along the way.
I’m sorry for your losses @ecamburn. and @DavidEnglish. @neum. You know all too well what it's all about.
Sorry for the added stress of dealing with a close minded parent @Sawiton. That kind of conflict makes it all so much worse.
@McD, you too, bro. You're the caregiver par excellence.
@echoopera, actually it has only been commercially available for a few months. For us the timing is incredible. But, yeah, your dad would have been a perfect candidate. It apparently has more dramatic results with those further down the road. I’m sorry, mate.
Thanks for the sage advice @abf. I’m not perfect at the consciousness raising aspects, but I’m learning. She has it in mind to go to Switzerland to end her life if this doesn’t work. I don’t oppose her on this. I would do the same. We have to respect where people’s minds are at.
@Stochastically, in fact Cynthia has severe sleep apnea which I pressed her on a year ago hoping that was the cause of the memory loss. CPAP is tough to adjust to but she is persevering. Indeed, many Alzheimer’s patients do remain at home, like your father in law. That was extra good of you to care so much.
Thanks @CapnWillie. I’m still thinking about those damn migraines of yours.
@DavidEnglish for sure, music has provided meaning and sustenance to my soul. As you know, the stress is multidirectional and cumulative, but it’s not without purpose and not without value. In other words, it's worth it,
I have to say posting this now, in parallel to the Texas massacre of 19 children and two teachers, only adds to the angst I feel for the depth and variety of human pain. It feels like a big hole not to have a mourning about it here. Those deaths go so far beyond what C and I are experiencing. That America is the only country where these slaughters happen daily and are rationalized, politicized and tolerated…we cannot remain silent… I hope someone will dare to post a thread about it.
Seems like you’re on the right track with what’s available. Similar spectrum of light is good for aging eyes as well. DIY’d something similar about 8 years ago and pairs well with a protocol like: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4221920/
All the best to you both 🙏
So sorry to hear your news, I’ve been through this with my mom. All I can add, is music is wonderful therapy. Hearing her favorite music was the one thing to cheer her up. She couldn’t communicate, but she would remember the lyrics and sing along, it was amazing. Make playlists for her.
Good luck with this. You might want to take a look at Dr Berg’s videos on YouTube I think a lot of people hold him in a high regard and his advice always seems to make sense. I know he has a few on Alzheimer’s.
I'm so sorry to hear about this, and I’m really hoping the treatment works.
👉affected by a family member suffering from the same degenerative disease👈
SO MANY
My grandfather, My mothers mother, My mother (maybe - but there is atypical cognitive decline)
Love to you @LinearLineman hope it helps - or furthers more research
Thanks for the suggestion @Model10000. Diet is tricky for C. She is a committed vegan (which may have exacerbated the situation) and very thin. I’ve gotten her to eat some salmon, but cutting out carbs is not going to work for her. I’ve investigated the Keto diet, too. She is a yoga fanatic, however.
Thanks @dougdi, sorry about your mom. Unfortunately, music is not a big deal in Cs life. She did play classical guitar but shows no interest in reviving that.
Thx @robosardine. For sure I will check out Dr. Berg. Thanks for the good wishes @bygjohn. Very appreciative.
Yikes @audiblevideo that’s a lot of genetic impact. C had both parents with dementia. It’s concerning. If this treatment is effective hopefully the price will come down. I’ll be using it, too.
Much love to you. My maternal grandmother passed away of Alzheimer’s and my father currently has Parkinson’s. One thing you may want to look into if you haven’t is NMN:
https://www.alzdiscovery.org/uploads/cognitive_vitality_media/Nicotinamide-Riboside-Cognitive-Vitality-For-Researchers.pdf
Dr. David Sinclair is a pretty good source of related information.
@LinearLineman Thanks for sharing this. I lost my mother to dementia some years ago, so my thoughts and prayers are with you both.
My mother died a few weeks ago just as she begin to sink into dementia so she (and we) were spared too much of it (um, thanks, COVID..?). My thoughts are most definitely with you and your partner and I really hope this treatment works out for you both.
This must be truly challenging for all involved.
You’re a champion for being there and pursuing improvements.
@LinearLineman thanks for sharing. I am trying to find a way to live with this since my mother has Alzheimer for a few years now. The impact affects many. Your message gives hope and strength. I send you prayers and hope for the best outcome.