Home Again, Home Again

The drive from Savannah back to Asheville was pretty uneventful, and even at times enjoyable. With Dr. Ross’ approval, I gave Jacquelynn a couple melatonin which seem to have served to take the edge off of the extended drive. There was a huge traffic backup in South Carolina and we jumped off the highway for a break. Stopping at the local tourism office, we met a lovely woman named Joyce, who told us the cause for the traffic delay was a tractor-trailer off the highway into the swamp.   Apparently, the traffic had been backed up for some seven hours by then as they attempted to haul the truck out via crane.  Fortunately, the extremely kind Miss Joyce showed us the way around the backup and had us on the highway and cooking again several hours faster than would otherwise have been the case.

Despite having some difficulty expressing herself, Jacquelynn never got frustrated or impatient, which is quite outside the norm. We had a nice drive to Asheville and once checked into our hotel, returned to the local Whole Foods for dinner and supplies for the remainder of the trip.

The big surprise was the trip back through the mountain pass toward Knoxville. Again, I doubled her melatonin, and the drive through the pass was completely peaceful. No issues or difficulties at all. We drove on for a total of about three hours to our hotel in London, Kentucky, then home the next morning.

Upon arriving home (and pretty much taking Sunday completely off from anything not essential), I set upon preparing us for Jacquelynn’s new protocols. After consulting a local retailer, I ordered her first month of supplements online* (and returned to the store for three I couldn’t easily get online). We spent much of Monday and Tuesday at the three major organic outlets in the area stocking up on groceries.

Dr. Ross supplied me with a full week’s menu and meal plan for what’s called the Mito (for mitochondria) Diet, complete with recipes. I haven’t implemented it fully yet, but I have done the things she insisted upon: Jacquelynn is on a zero grain, extremely low-sugar diet. While fruit is still a staple, the orange juice I’ve been using for our morning slushies is out as it contains far too much sugar. I’ve replaced it with coconut water at the Dr. Ross’ suggestion, and it’s been a hit.

Jacquelynn’s beloved peanut butter and toast breakfast is also 100% out. No grains means no traditional breads, and peanuts are out, as well. Almond butter was suggested, along with paleo breads made with almond flour. While (much!) more expensive, these are also a big hit. I’d been purchasing fully organic breads for some time, of course, but still, going paleo can nearly triple the price. We’ve settled on one available at Fresh Thyme Farmer’s Market for about $7, and the almond butter runs from $8-14/lb. But she actually likes it better, thank heaven, so I’m calling that a win. I’ve tried making my own bread from a recipe I found online and designed for a bread machine (I LOVE my bread maker!). It was, to put it mildly, not particularly successful.

 

I’m going to have to start helping Jacquelynn brush her teeth.   I’ve already been prepping the toothbrush (since I figured out she wasn’t using toothpaste because she couldn’t manage the tube), and she’s missing most of her teeth with the brush now.   I’m nervous about her reaction when I suggest it, but it’s necessary. Poor oral hygiene is a major threat to infection getting through the blood/brain barrier, and we seem to have had enough of that already.

I’m seeing other progressions as well. She’s gotten frustrated with herself several times these last couple of days when she couldn’t find the right word express herself clearly. Today, she forgot that she was supposed to go to lunch with her friend Joyce and when they spoke later, she was nearly in tears over missing it.

Jacquelynn’s heart is more on her sleeve than ever now. This makes her both more vulnerable and more demonstrative. I catch her staring at me and she’s just mooning over me. It’s both very touching and a little unsettling, as well. Sometimes, it just looks like there’s no one home when I see her like that, and that terrifies me.

 

But I cannot let fear win. I cannot make good decisions from a place of fear.

 

Only from love can wisdom flow.

 

*Supplements list:

Resveratrol 100mg

Nicotimamide Riboside 100mg

Polyquinoline quinone (PQQ) 20mg (to increase mitochondrial number)

Ashwagandha 500mg (Twice daily w/meals to reduce amyloid production)

Bacopa Monnieri 250 mg (Twice daily with meals to improve cholinergic function of one of the brain’s key neurotransmitters)

Gotu Kola 500mg (Twice daily w/meals to increase focus and alertness)

Hericium Erinaceus (Lions Mane) 500 mg (To increase nerve growth factor)

Rhodiola 200 mg (For anxiety and stress)

Shankhpushpi (Skullcap) (2X Daily to enhance branching of neurons in the hippocampus)

Guduchi 300 mg (Boosts immune system)

Guggul 350 mg (To remove toxins)

Fish Oil

I’m going to research if I can legally share the Mito Diet information Dr. Ross gave us.  I need to ensure I don’t violate any copyright laws.  If I can, I’ll share it here later.

Savannah, at Long Last

It would be logical to assume that, being the longest yet by far, the third day of our road trip to Savannah would be the worst. I’m elated to report that would be quite wrong.

In fact, it was so much better than the two which preceded it that one would think great changes had occurred overnight.

One, anyway. We rested well and deeply. More than nine hours sleep in a wonderful bed courtesy of the Baymont Inn and Suites Biltmore. No, we did not stay at the actual Biltmore; pretty much everything within a few miles of the iconic destination has “Biltmore” in its name. But it was a damn nice bed.

Truthfully though, I believe that Jacquelynn was simply becoming accustomed to the longer days on the road. I had remembered her meds, of course, and we had a nice breakfast before hitting the road at a little past nine.

Aside from some serious fatigue and resultant confusion around the halfway point leading to an extended lunch stop, Wednesday went quite well.

It’s a story for another time, but we both almost immediately fell in love with Savannah. True, wanna-live-there love.

Ironically enough, Thursday, September 21 was World Alzheimer’s Day.   It’s also the day we met, among other notables, Eli.

Eli is a therapy and service dog in residence at the Institute For Personalized Medicine. The instant we walked in for our appointment, Eli (who is also a huge attention monger) immediately queued in on Jacquelynn and nudged in close to comfort her.   Clearly, he could sense her state of health and unease. He did what is called “tucking”, putting his snout in your lap or underarm if you’re sitting, or in your crotch, if standing. Of course, being a giant schnauzer, Eli could just about put his nose in her underarm while she was standing. Seriously; Eli is bigger than almost all the Great Danes I’ve met. Huge. A dog lover all the way to her cuticles, Jacquelynn fell in love for the second time in a day.

The remainder of our 3-hour appointment was spent with the very impressive Dr. Ross. Far from assigning her research work to others, Dr. Ross had very clearly read and thoroughly researched every bit of patient information I had supplied over four evenings of filling out extremely detailed (and secure) forms online. She had built a detailed timeline and had dozens of extremely well-considered, intelligent and deeply relevant questions for us, and we gradually honed in on the labs she would order and diet/supplements she would prescribe.

Yes, supplements. This is NOT a miracle-pill, magic bullet monotherapy. The quest for such a treatment for Alzheimer’s (and every other disease on the planet) has slowed true medical advances to a slow crawl.   The refusal to address the patient as a whole, rather than addressing symptoms individually has frozen progress in its tracks. ReCoDe is a total and comprehensive lifestyle change; we will ingest only pure, clean, and organic foods and with those foods and a carefully customized cocktail of dietary supplements will provide the body with the necessary fuels to rebuild and regenerate lost neural cells. These are permanent changes, too. Every successful patient who has gone off the protocol has gone backward very quickly. Why? Because they’re immediately creating an environment that is both unsupportive of new neurosynaptic growth and toxic to the existing neurons. Yes, ReCoDe is also used as a preventive measure, especially for people who carry an ApoE 4 genotype and/or have a family history of Alzheimer’s.

As we had surmised, Jacquelynn does indeed have what is termed Type 3 Alzheimer’s Disease.   Not caused or contributed to by any genetic factor (her mother, at 88, is still healthy as the proverbial horse, and her father passed away from a heart attack in 2014 at the age of 89), type 3, or Toxic Alzheimer’s, is the result of toxins building up in her body and even bone marrow over many years. Entering or approaching menopause, when the body begins to consume marrow and access needed hormones from the organs as their source grows weaker, can leach these dormant toxins into the bloodstream and begin to wreak havoc.   Childhood exposures such as tick bites and mercury amalgam dental fillings, among many others, can, when finally allowed to express themselves, destroy brain tissue, neurons, and synapses at a terrifying rate. There comes a tipping point, when the toxins finally reach a level of saturation (for want of a better term), that the effect becomes profound and undeniable. While we may never know for certain, I suspect that the destruction from the inside of her kidney and its failure to adequately filter such toxins from the blood was her tipping point. Observed in reverse, it’s difficult to deny the timing is almost punch-for-punch. I think it quite possible that, without her kidney issues (especially when combined with the timing of menopause), she would have continued for many more years before developing this disease.  Ultimately, she would have developed it.  It will, in eventual hindsight, prove very beneficial that she developed it early and we were able to address it now, rather than waiting another 20 years and, in all likelihood, just surrendering to the inevitability of it as she neared 80 years old.  When people develop cognitive issues at that age, we tend to just throw up our hands and say “well, they had a good long run”, and sit back to watch them decline.  If we lick this thing now, and stay with it (which we will!), we won’t face that hurdle later.

The following morning, Jacquelynn donated ten vials of blood along with urine and hair for the first battery of tests that could be done locally.   We took home with us orders for many more labs to be run once we got home, and just this morning donated 19 more vials to the cause. These tests are to check for everything from vitamin and hormone deficiencies to heavy metals (mercury, aluminum, copper, etc), micotoxins from mold spores, and even the lyme spirochete. Each and every one of the 36 “holes in the ceiling”* which fit her ApoE profile and medical evidence. The results of these tests will allow Dr. Ross to further focus the prescribed supplements to address those specific deficiencies and toxicities.

 

To empower the body to do what it is naturally and inescapably programmed to do; to heal itself.

 

*Dr. Bredesen and his colleagues at MPI have thus far identified 36 separate contributing factors which cause and/or exacerbate dementia.   He uses the “36 holes in the ceiling” analogy to illustrate the futility of attempting to develop monotherapies for Alzheimer’s; If there are 36 holes in your ceiling, and you develop a patch for one of those holes, even if it’s a terrifically effective patch, you still have 35 leaks.   There can never be a one-size-fits-all treatment or cure for Alzheimer’s and similar dementias because there are simply too many things for one medicine, no matter how much of a “miracle pill” it is purported to be, to accomplish effectively. It can’t work. You must, therefore, treat the entire patient and provide the body with what it needs to do its job most efficiently.

Road Trip Day Two, or Highway To Breakdown

Our second day on the road, which was really only about 2 or three hours, was our worst.

One Monday evening oversight on my part contributed to Tuesday’s difficulty. With Jacquelynn asleep so quickly, I failed to administer her evening meds. The only real medication among these is her risperidone, the “antipsychotic” which has served to curb the events discussed in my earlier post, The Other Side of Dementia. While I’m eager to get her to the point where this prescription is no longer necessary, it has become quite clear under stress when she’s missed a dose, which is entirely my fault.

 

The trip from Clinton to Asheville twists and tangles its way along I-40 in a path carved from the Great Smoky Mountains. Along much of this route, the mountain walls tower high on both sides, and the concrete barriers seemingly loom inches to your left when in the passing lane. Under-rested and unmedicated (which I had not yet realized, to my shame), Jacquelynn was dreadfully underprepared for this drive. She shook and wept almost from the moment we entered the pass. I stopped at the sole rest area to get her out of the car and hopefully find a bit of relief.

This was not particularly successful. She remained inconsolable about the prospect of continuing the trip, and at one time approached a woman who was walking toward the restroom and asked, almost frantically, “What are we doing?” I could feel an incident brewing, but thankfully the woman was extremely friendly, and I was able to intercede and kind of redirect and declaw Jacquelynn’s confusing inquiry into a brief and not unpleasant conversation.

I’m tearing up typing this, for the record. I knew then how very close she was getting to another of what I’ve come to call her “disconnects”. The only ingredient present in all the other such events missing now was the element of sleep: every other time, she’s been freshly awakened, and the fact that she’s incapable of sleeping at all in the car may have been our saving grace on that day. Conversely, if she had been able to nap, she’d likely have been much less overwhelmed by the drive.

I’ve never in my life wished more and harder that we had a dog.   Nothing grounds and calms Jacquelynn more quickly than a dog’s head in her lap.

Back in the car, I worked at keeping my tone even and loving. This is where my weaknesses as a caregiver are most glaring.   I know where her frustrations come from, and I know she lashes out in fear, not truly aware that she’s doing so at all. But I still, occasionally, react. Aware or not, her words/actions still hurt for a moment, and sometimes I react before conscious thought kicks in.

But this day, I kept calm and tried to keep the energy in the car on a positive level. The balance of the trip was just as unpleasant for her as the first half, but she is still the strongest person I’ve ever known, and we got through it.

We were checked into our room in Asheville before 1 p.m. After a brief nap and with me finally remembering her meds, Jacquelynn and I had lunch at about 3 and, after hitting the local (and gloriously cavernous) Whole Foods for supplies, were in our room for good by 6.

If you read The Other Side Of Dementia, you at least partly understand how terrified I was at the rest stop. If the thought of her disconnecting here at home and me having to chase her down and call 911 again is mortifying, then imagine all the scenarios which flashed through my mind when I envisioned it happening at a crowded rest area six hours from home and with the nearest ambulance likely an hour or more away. Would she run from me looking for help and find someone who wouldn’t believe me and would heed her pleas to take her far away from me? Would she find a reserve of strength and run onto the interstate?   Would, could, might?  Shit.  I have enough nightmares already.

It only took seconds for all this and much, much more to tear through my brain and galvanize me to action, to derail whatever she was planning to say to the poor lady on the way to the john. I am ashamed to admit that I occasionally take advantage of Jacquelynn’s essentially nonexistent short-term recall to redirect her from potentially embarrassing (for her; I have a VERY thick skin) or worse situations. I did so again at the rest area and we were able to have a nice conversation with a couple (the husband came up after a minute or so) on their way home from vacation.

I wouldn’t let the shakes take me until after Jacquelynn fell asleep in the hotel. But take me they did, for just a couple of minutes.

 

I will not let her down like that again.

Road Trip To Savannah, Day One (or How Not to Travel With Alzheimer’s)

Well, it’s been a hell of a long week. I’m grateful for your patience, and I’m going to be filling you in over the next few days about not only the doctor’s visit but about the entire trip. There were traumas along the way, and joys, and they are all an important part of the overall narrative.   I learned more about my limits as a caregiver (mostly self-imposed, of course) too, and that I need help and support as much as Jacquelynn does.

Not an easy lesson for me, by the way, and one still not fully embraced.

So, let’s get started.

The purpose of last week’s trip from Cincinnati, Ohio to Savannah, Georgia was to visit Dr. Mary Kay Ross at The Institute For Personalized Medicine.   We were referred to Dr. Ross by MPI Cognition, the world leader in research and progress fighting and reversing cognitive decline. The founder of MPI and developer of the ReCoDe (Reversal of Cognitive Decline) protocols, also known as The Bredesen Protocol, is Dr. Dale Bredesen. I’m not going to go too deeply into Dr. Bredesen’s career, as you can find that through many channels. As I indicated in an earlier post, I was led to him by the operator of a home care service whose own father had passed from Alzheimer’s.

But I’d like to revisit this trip chronologically and relate the events to you in the order they occurred, so let’s go back a week…

 

Alzheimer’s can amplify personality traits, especially those related to emotion. As truly beautiful person as Jacquelynn is, even she will tell you that patience has never been a virtue of hers. While I would argue that she has shown endless patience with me over the years, I must concede that she can occasionally be a bit, um, anxious, when made to wait. She’s also more than a little claustrophobic. Never cripplingly so, but not fond of closed spaces or of being incapable of moving about.

Our first day on the road was supposed to get us to Asheville, NC, a bit more than six highway hours. Too much, as it turns out. In spite of frequent stops and outside-the-car exercise, Jacquelynn was stressed out and in tears in less than five hours. The incessant road noise (the one and only complaint I have about this car) was translating into her nervous system as a very rough ride and she was near frantic. A quick pop onto Priceline and we had a room in Clinton, TN for the night. She’s asleep less than an hour after we settle in.

I feel I should examine her state of mind more closely here. In the last hour or so on the road, Jacquelynn had transitioned from chatty and light to total silence. I’m not sure how long it took for this to register in my (often seriously lacking) consciousness, but when I looked over to see her staring straight ahead with tears streaming down her cheeks, I launched into investigation mode to get at what had her so upset. She had much more difficulty than usual expressing herself to me, which raised my antenna quickly. When speech problems worsen, she tends to get more and more frustrated as the words won’t come and her impatience with herself increases. The resultant rise in cortisol, we would learn later, wreaks havoc with cognition, creating a vicious cycle which feeds upon itself continuously until something breaks the cycle. I’ve seen enough of this that I immediately know that calming her is the most important thing I can possibly do, so I jump off the highway at the first opportunity and swing into a Cracker Barrel parking lot. I get her out of the car and walking just a bit, to dissipate the built-up energy. Success was limited, to say the least, but I did get her talking. As she slowly relaxes, it becomes marginally easier to express her thoughts, and that’s when I jump online to get us a room close by.

Mind you, she’s not exactly calm yet. As we get back onto the interstate, she’s asking, in a very cross and accusatory tone, why I’d plan the trip like this and put her through such torture. It’s not easy to listen to this, but I know she’s not truly aware of her words or tone, so I blanch but I endure and in less than fifteen minutes, we’re parking in front of our hotel for the night.

At this point, the tears are still flowing, but they’re slowing, and she’s friendly(ish) with me now.

 

I do realize that when she’s cross with me like this, it’s not really about me.   That doesn’t remove the sting, though.   I cry a LOT after exchanges like these.   Being accused of insensitivity toward the woman to whose health and life I have dedicated my existence hurts like hell.   But it isn’t truly me she’s mad at; she’s mad at herself for the limits that Alzheimer’s has imposed on her, and she lashes out at me simply because I’m here. And I always will be. I believe in her healing and recovery, and I will endure whatever I must to see her returned to herself.

 

I will save my Jacquelynn.

 

*The lead artwork for this post is a self-portrait I did many years ago which just seemed to express the emotions Jacquelynn was battling during the final hour or so of this first day of the trip.  I also feel myself pulled ever closer to this state when she rails at me, which makes me feel like such a failure to her and to myself.

The other side of dementia

There is an aspect to dementia that you may not know about.   If you have experienced it, you have my heart. Honestly, when it showed its face here, I faced terror like I’ve never known.

In the hospital, they called it a Psychotic Break. I simply refer to them as “episodes”, and yes, that clearly implies a plural.

It was her first day home from the hospital after her second sepsis diagnosis and 5-day stay. She’d been discharged fairly early in the day, and by midday was more than ready for a nap. So, I laid her down, kissed her on the forehead, and left her to get a little sleep. From downstairs, watching television, I heard her moving about a bit later but assumed she was getting up to go to the restroom. Then I hear her on the landing above me.   “What are you watching that for?”

Obviously, I can’t relate the ensuing conversation verbatim, but something was wrong, and I knew it immediately when I heard the tone of that first question. This didn’t sound at all like my Jacquelynn.

Turned out, she saw a lot of people in the house who weren’t there, and was totally thrown. She perceived a crowd in the TV room when it was just me. Worse, she wasn’t quite certain who I was.

Without fully reliving several truly disturbing hours, I’ll tell you it took close to an hour, that first time, to get her back. When she finally snapped out of it, right after “You’re my Matthew”, she fell apart, collapsing into tears and imploring around the sobs “What’s happening to me?”

I called and spoke to her doctor, of course, and got lots of compassion and little help.

Over the next few days, this happened twice more, but she came out of it much more quickly both times. Until the fourth day after her discharge. I honestly don’t recall exactly how this one started, but it was clear right away that she just didn’t believe anything I said. She knew who Matthew was, but she refused to believe that I was him.

In the very first “episode”, what finally snapped her out of it was my shouting at her, in sheer, terrified desperation, “WAKE UP!” When I did that this time, all it got me was a very irritated “Hey, Lay off!” But confused as she was, she was very canny. She calmed down and began puttering about, picking things up and pretending to clean. I took advantage of the lull to call the doctor again and try to get some advice, and as soon as I was good and fully distracted, she made her break for it.   I saw her slip out through the laundry room and into the garage, and I hightailed it after her. Stopping her just before she got out of the garage, she fought me. She had to follow “him”, she’d said. There had been indications that she’d seen someone else in the rooms with us most of this episode, and now she was taking instructions from him, running from me, whom she perceived as keeping her prisoner in the house.

As soon as she got violent with me, I hung up from the doctor and called 911. While fighting to keep from hurting her and to keep her from running out into the highway (Montgomery Road is essentially our back yard, and it’s a very busy street), I described the situation to the operator, with Jacquelynn shouting “He’s lying!” to my phone. She yelled for help and shouted “FIRE” at the top of her lungs.   It was when she screamed for Joyce, our neighbor and her very best friend, that I instantly knew what to do.   So I hung up on the 911 operator and called Joyce in a panic, begging her to come help.

This wasn’t as easy as it sounds, as Joyce’s husband Bob was in horrible shape by this time, and demanding all her time and energy.

But Joyce ran right out, and I released Jacquelynn to run into her arms.   Shortly, the police arrived, followed soon by the ambulance. She was terrified of me, and terrified of what had happened to Matthew. When the paramedics asked her if she knew who Matthew was, she said I was her world, that she loved me and I took care of her.   When they pointed to me and asked if she knew who that man was, she just said, in the quiet, frightened voice of a child afraid of the monster under her bed, “bad”.

As always happens when police and ambulances show up at your house, half the neighborhood came out to see what was going on, and they all figured out pretty quickly that something was seriously wrong with Jacquelynn.

I obviously didn’t ride in the ambulance with her. I waited a while to even go to the hospital, convinced I was at least part of the problem. I made sure the medics had her ID, and I waited. And I fell apart. After calling the doctor again, I heeded their advice and called the Emergency Department after about an hour. The nurse there told me she was much calmed down and asking for me repeatedly.

This stay was only two nights. Jacquelynn had another episode that evening, while I was trying to sleep at home (it had been the consensus that my presence may precipitate another break if she awoke and saw me there). I received a call from her cell, and it was her nurse. All I could really make out was Jacquelynn screaming my name in the background, begging for my help, so I half-dressed and sped to the hospital at two-to-three times the limit.

She was calmed when I arrived, and I never left her side again during that stay. The next day was nothing but tests. EEG, CT, MRI, and an increasingly impatient and infuriated Jacquelynn. Her innate claustrophobia is quite amplified by her present condition, and both the CT and the MRI cause her deep distress. Much of this she took out on me, but I knew where it was coming from, so I did what I could to keep her calm, and struck a line under any more tests that day. We would be returning to her room for the remainder of the day, and they would keep their damned machines the hell away from her.

The next morning, after a ridiculous video conference interview with the neurologist, Jacquelynn was discharged. We were just a bit stupefied. What in God’s name had happened to her, and what the hell are we going to do about it?

Well, we’re prescribing her this drug, which is what calmed her the other night. But what caused these “episodes”? No one knows. With dementia, this is what happens.

 

No. Other. Answer.

 

This is what happens.

 

That was March. There have been two very minor such episodes since. The worst of those was just a few weeks ago, and a call to her brother helped to restore her balance and her trust in me. At least enough to get her to go back to sleep, and when she woke up in the morning, everything was fine.

It is these events and the possibility of them recurring which most frightens me day-to-day.   I don’t exactly live in fear, but this is why I don’t let her sleep alone and was undeniably my #1 source of fear when I was going to work every day. What if this happened when I wasn’t there and her hallucinatory friend led her away on foot? What the hell would I do then?

 

The Double-Helix Fat Bucket

The gene ApoE has one job in the human body. It determines how the body transports lipids. It’s known as the fat bucket.

There are 3 types, or alleles, of ApoE; 2, 3, and 4, and each one of us has two copies; one inherited from our mother, and one from our father. ApoE 3/3 is the most common, comprising approximately 64% of the population. 2/2 is the rarest, at around 1%.*

Close to 65% of Alzheimer’s patients have at least one ApoE 4 allele. Those with two ApoE 4 alleles, the third rarest combination, have a 94% chance of developing Alzheimer’s or similar dementia.**
How this seemingly innocuous “fat bucket” gene contributes to the development of Alzheimer’s is WAY above my pay grade, though I have come to understand, at least on a very esoteric level, how it works. I’m not going to delve into it here, though. I don’t like these posts to go too far over 2000 words.

The ApoE 4 gene plays a huge part in two of the three subtypes of Alzheimer’s, and it is these two types against which the most success has been found using the protocols we’re to begin soon.

Jacquelynn is an ApoE 2/3, or as they now say, “ApoE 4 negative”. While this means a statistically much lower likelihood of developing Alzheimer’s, here we are. How? Because hers is the third type.

Type one is inflammation-related. The second is keyed to a loss or lack of certain synapse-supportive hormones or biological compounds. Both of these types result in the growth of A-beta, or amyloid-beta, a plaque which blocks synaptic communication and eventually strangles the nerve.

Type three is toxic. Birthed by any or many of the toxins in our environments, in the horrible substances that western society calls “food”, and even created by our own bodies…

 

In February of 2016, I rushed Jacquelynn to the hospital with an obvious kidney stone. We’ve both had them before, and the symptoms were unmistakable. While the pain meds were taking effect, the urologist came in to discuss her C-T scan results; several stones in both, and a 10mm stone lodged in the ureter of her left kidney. The tube was completely blocked, and immediate surgery was imperative to insert a stent, allowing the infection to drain, after which the stone could be removed.
Then the conversation got interesting. Though blocked, the left kidney was but barely functional and, worse yet, approximately 1/4 the size of its mate. It was shriveled, misshapen, and dying.

Some background: it was mid-2015 when I began noticing something was wrong. Nothing severe, but things like general confusion, a drastic decline in her handwriting and decrease in her interest in reading., and an occasional difficulty finding the right words (more alarming from a woman with one of the largest vocabularies I’d ever encountered). Where she would normally spend time at her computer reviewing job opportunities, I would often find her staring at a blank screen.
Her general health had been pretty poor as well, with colds, ear infections, strep, and repeated urinary tract infections. Worst, she had shone occasional symptoms of depression.
I first began to get truly concerned in the fall of 2015, when we first visited her new primary care physician. Claiming an inability to see it clearly (her glasses were old, and she was having difficulty manipulating her contacts so had temporarily given up trying), she asked me to fill out her paperwork. She had difficulty remembering both her birth date and her social security number, as well. The capper for me was watching her try to sign the form. I almost cried there and then.

 

The best guess at the time of the C.T. scan in February was that the kidney had been essentially destroyed by the stones inside it. Probably over the past several months or so. Clearly, this dovetails perfectly with the visible and noticeable cognitive decline.

The toxins that remain unfiltered by an injured/failing kidney are extremely neurotoxic. This is why a patient in kidney failure (trust me, I’ve seen it plenty) shows symptoms of extreme aphasia and are almost universally tested for stroke. When I rushed her to the ER on Valentine’s Day of 2017, Jacquelynn could have passed for a late-stage-seven dementia patient. Totally disoriented, unable to express herself, no bladder control, and little ability to follow simple instructions such as “squeeze my hand”. The last straw for rushing her to the hospital was the inability to grasp a spoon when I tried to get her to eat a little yogurt. Every time she reached for it and missed, she winced and “ow!”, as if missing had caused her physical pain.
There are many tests yet to be run when we get to Savannah, but the toxic overload of the gradual destruction and death of her kidney at the very least contributed significantly to the development and eventual diagnosis of Alzheimer’s dementia, and, typical of the toxic type, it has progressed much more rapidly than in the other types, and in a much less “organized” fashion.
Success treating toxic, type 3 Alzheimer’s has increased significantly, as long as the patient isn’t too far gone when treatment begins. I won’t lie and pretend as though that fear hasn’t crossed my mind, but living in fear only serves to paralyze one from action. I believe in our success. I believe I was led to this path, both to save my Jacquelynn, and also to tell you and everyone else about this process, to show the world, every step along the way, the path to a cure for Alzheimer’s disease

* **Statistics and figures quoted from “The Perfect Gene Diet”, by Pamela McDonald, NP, Integrative Medicine Nurse Practitioner

Sunset, Sunrise.

I have always called Jacquelynn My sunrise.  Every morning, seeing the warmth in her eyes, I feel as if the first rays of the sun are caressing my face.

We lost a dear friend this weekend. The sun set on the suffering of the husband of Jacquelynn’s dearest friend, Joyce.  She lost her husband after a long battle with throat cancer. Bob was a retired journalist and among the sharpest, wittiest men I have ever encountered.  We are poorer for his loss, but his true home is so much richer for his return.

I’d like to ask for a moment of silence in his memory. Thank you.

I won’t pretend that I knew Bob well; we spoke a few dozen times and I was invited into their house once, just before Christmas in 2015. I know Joyce much better, and I know she adores my Jacquelynn. They have been fast friends for years, walking and shopping together, gardening, and attending zoning hearings for our neighborhood, among countless other things.

Joyce’s battle was arduous and terrible. Much as she clung to hope and Bob to life, their fight was futile and they both knew that barring a miracle, it would end much as it did, quietly (and gratefully in peace) in hospice care.

Jacquelynn’s doctor would have us believe much the same is in store for her. For us.

I’m young… Mid teens, maybe. I’m in a hotel with my parents.   It’s a huge, plush place with libraries, large, carpeted common areas, and a labyrinthine floorplan reminiscent of an enormous high school on your first day as a freshman. I’ve been wandering for a while, exploring and sightseeing.   Suddenly, I can’t find my room.   I’m completely lost. I had been on my cell phone just moments ago, but now I can’t remember how to use it at all. I can’t call Mom and Dad. Every corner I turn is new and terrifying, completely unfamiliar. The deeply cushioned armchairs seem threatening and they frighten me. I’m spinning, going around in circles, hopelessly lost and now I can’t even remember who I was looking for. I’m rudderless and hopelessly lost. I’m not even certain who I am…

I always wake up sweating and in tears from that one. Fortunately, I haven’t screamed yet, but that may be because by the end of the dream, I’ve lost myself so completely that I don’t even know to cry for help.

The source of the dream is obvious, of course. I run the full course the illness in moments until I don’t even know myself. The empathy is profound, but deeply chilling. I’ve honestly never had a dream in my 51 years that terrified me more.

But I won’t lose her that way. We will not lose her that way.

The science is real. Patients are recovering and returning to their lives. They’re waking up. They’re bathing themselves and brushing their own teeth. They’re driving and going back to work and raising their children or playing with their grandbabies.

Yesterday, I watched my 160+ I.Q. wife break into tears because she couldn’t find the words or an effective way to ask a question about the toaster.   A fucking toaster, and it brought her to tears. It was several minutes before she’d even let me hold her, she was so hurt. Hurt that she couldn’t find the simplest of words or make the easiest of concepts clear, and hurt that I couldn’t follow her line of reasoning. Every time I tried to help, I was off-base, and the distraction set her back further, causing her to forget and to struggle to recall her original thought. It was three or four minutes of hell for her.

And it tore me apart to watch it, unable to help and with every attempt adding to the pain.

The one thing I’ve sworn is to help, not to hurt. Yet even trying to help sometimes hurts her.

But love will see us through it all. Love will see us prevail.

 

Love will see her healed and whole once again.

 

Her sun will rise again, brilliant as ever, and brighter still.

A Life Without Rest

Have you ever given thought to what it would be like to care for a person with Alzheimer’s?  Not just to know and love them, but to be their only caregiver, as well? Just you, no relatives or friends to pitch in?   Maybe a job that claims to understand your situation, but really can’t afford to keep you on the payroll (and insurance) at your current production levels?

Leaving her every morning when I went to work was the most difficult thing, and it got harder every damned day. There truly is no one else for her to speak to or interact with every day. Her dearest friend Joyce lives across the street, but she has her own problems, with a husband in end stage throat cancer. The loneliness and isolation tears and eats at her like a cancer. I would try to call her as frequently as I could, but you can imagine how it looks at work with me walking around on my cell half the day.   Of course, she’d call me several times, too, often in tears with the fear and loneliness. I could take quite a while to talk her down, and I would occasionally have to run home (20 minutes each way) to calm her.

Worse were the days when she’d forget how to use her cell phone, or couldn’t find it. Neither was rare. I had a new landline installed for exactly that reason, and put my cell on speed dial with instructions writ large on a note right on the shelf where the phone is kept. Inevitably, though, the panic would prevent her from remembering it. She has even called me, frightened and unable to find the very phone she was calling me with.

I’m currently unemployed. It’s cost me two jobs now, but it’s a gift. I’m home with her, where I belong. She’s FAR happier now, and no longer wracked by the isolation. We go for walks (a dearly loved activity for her), we shop, and we’ve just finished bingeing “The Great British Baking Show” on Netflix (though they only have 3 of the 7 seasons). I belong here with here, almost as much for myself as for her.

We’ve made the change to a fully organic diet, and she’s seen honest and measurable improvements in spatial perceptions (more confident with where she puts her feet and less fear on steps and curbs) and even some clearing in memory; just a few days into the new diet, she used her favorite nickname for me for the first time in several months. I had despaired for ever hearing it again, and there it was, bursting forth from a bright and brilliant smile.

We have so much farther to go, of course, and not all is improvement.   It breaks my heart to tell her we need to change her pants again because she had a minor accident overnight, and it makes her feel so ashamed. Helping her figure out how to hold a fork, and fighting back tears when she surrenders and resorts to fingers. Trying so hard to be patient when I have to repeat something for the fifth time because her short-term recall is essentially nonexistent.

But I believe. We believe that the human body, when given the right tools, is completely and universally capable of repairing itself. I have to believe, and I do.

I also believe, without any doubt or qualification, that life happens for us, not to us.  This is all a gift, and we will never know the joy of it if we don’t search for it, in faith and in love.

It is with blind faith that we set foot upon this road…

The flat drone of the motorcycle engine reflects my world; bland and unchanging. I’ve been riding for days. Or is it years? Time is meaningless and the days pass unmarked as one night is spent in a bedroll beneath a tree and the next in a fleabag motel, mostly for the shower, because I sleep on the floor, never trusting the beds.

 Days bleed into weeks bleed into months. The emptiness is my only companion.

 The wind tugs at my jacket as the vibration through the grips begins to put my hands to sleep again. But I shake it off, ignore it, and ride on.

 I tell myself that I don’t feel the loneliness anymore, but in truth it’s become my friend. My only friend. I talk to it constantly.   Ever since I stopped talking to her.   She’s not here to talk to. She’s not here anymore. Only her memory remains, and the loneliness it brings.

 So, I talk to the loneliness. I barely mumble to the waiters at the roadside diners. I nod to motel clerks and slide them the cash.   But I talk to the loneliness nonstop.   My voice echoes inside my helmet as the road drones on and I talk nonstop, mile after mile, day after day,   to the loneliness. To the emptiness…

 

Little wonder I barely sleep. The dream waits for me to close my eyes. Like a predator, this dream and one other, more terrifying by far, but profound in its empathy.

So I read, I nap, and I watch her in her sleep. The one medication she’s on has the predicted side effect of making her pop her jaw and clack her teeth endlessly as she slumbers.   It doesn’t bother me anymore; at least I don’t have to listen for her breath to ensure she’s still with me.

 

Last March, my wife was diagnosed with acute, early onset Alzheimer’s Dementia. At that point she was approximately at Stage 4 on the 7 Stages of Dementia. On average, Stage 4 lasts 2-2.5 years.   Just over 6 months later, she’s deep into stage 5 and showing strong symptoms of stage 6. She’s progressed approximately 4 years in that time.

In short, dementia is storming through her mind like the nazis through Europe.

This is officially a terminal diagnosis. Upon committing it to paper, her doctor avoided those words, but he did lay it on nice and thick “We’ll be here fighting with you all the way to the end”.

Yeah, fuck that. End?   She’s 58 fucking years old (then), and we’re supposed to accept this? Yeah, No.

Obviously, I’ve been researching countless options. In this, the internet age, there are as many “cures” as there are governmental/alien conspiracies and the tinfoil hats who espouse them. Sorting through the myriad metric tonnes of false flags and downright kooks to find the gems is no small task, and I’m no professional researcher.

Here is where I send an anonymous and immensely grateful shout out to the manager/owner of a local in-home care service. I’ll call him Tim (NOT his real name), if only because I’m not recommending his service. What I am doing is thanking him in the only way I know how for pointing me at a certain doctor’s YouTube videos.   I don’t know the whole story, but Tim’s dad passed from Alzheimer’s and he found this when researching for him.

This is the journey you’re joining me on. In a few weeks, we travel to Savannah, Georgia for assessment and to begin treatment.

The medical community will eventually be forced to recognize that Alzheimer’s and many other “diseases” don’t and won’t respond to a single, one-size-fits-all approach. The human body must be treated as a single, enormously complex unit, and the entire biome treated and cured rather than simply attacking the symptom.   Alzheimer’s has too many root causes and most patients are victim of several of these (at least).

The science has been done. Recovery happens, and it is going to happen for us.

Our goal here is threefold:

1) To undergo an as-yet officially unrecognized (but thus far very promising) treatment and to recover completely from this “terminal” diagnosis.

2) To open the eyes of victims of this terrifying disease to the concept that, well-meaning as they may be, most doctors only do as they’re taught, and they’re taught that Alzheimer’s is unquestionably fatal and untreatable. This hidebound thinking is false and costs lives every day. Don’t let your life or the life of a loved one be another statistic. Follow this journey to learn the truth of it.

3) To hopefully be one factor in convincing the medical establishment to take alternative, non-narcotic treatments seriously.   Great resistance to this concept is inevitable, not least from the pharmaceutical industry.

This is the mission. First, we must prove the efficacy of the treatment protocol we’re to begin soon.   In the interim, I’ll be providing background and bringing you up-to-date on all of her medical issues and what led us to where we are today.

I hope you’ll join us. Comments and input are always welcome, of course, and I hope you’ll subscribe to the blog as well as follow it on Facebook.

 

Beginning the Quest

My friends, over the last two years, I have learned what it means to truly live for someone. Over the last seven months, I have learned this more intensely and more deeply than I ever could have imagined.

Not one single decision of consideration is made in my life that doesn’t involve her. From simple things about when I go to bed and awaken, to meal times and content, to when I make time to meditate.

I don’t go to movies anymore. The last one was Wonder Woman in June, and I felt irrationally guilty for it. I’ve skipped at least three which I really planned to go see since then, and there are several more coming this fall and winter which I have no idea whether I’ll go see or not.

This isn’t whining. I do and will always put her first, and I will live and die for her. This is perspective.

A few months ago, I changed jobs from one I’d worked for nearly twelve years. Leaving the previous employer was an easy decision. The time I’d missed due to her hospitalizations (3 in 4 weeks) and the subsequent recovery difficulties had driven a deep rift between me and management, and it was made clear that I was to bear the entire burden of healing that rift (i.e. back to 12-hr shifts and my lee-way for caring for her during work hours significantly curbed). So, I tried something new. And failed.   I underperformed badly, and rather than be the company that fired a guy because his wife is sick, they transferred me to a location which would make it impossible to care daily for her the way she needs, so I resigned.

So, when I say that everything I do revolves around her, I want to be clear what that entails.

Why? Here goes.

 

Acute, early-onset Alzheimer’s dementia.

Mull those words over for a moment. Let them sit in your brain.

I know that most of us, myself included until fairly recently, think one thought when we hear the word “Alzheimer’s”; we think old age.   Old folks rotting away either all alone in some assisted-living facility or at home with their long-suffering families who are robbed of all independence or “me time” as they dedicate their every waking hour to caring for their loved ones, knowing all the while that caring is all they can do. So, they feed, bathe, and brush their loved one’s hair while agonizingly waiting for them to die.

Let me throw a few more frightening words your way:

Genius. 160+ IQ.   Master’s degree at 21. Vice President of Engineering at 25.

That’s my wife. Before we met in 1999, she had accomplished more in her professional life than anyone else I had ever known.

Imagine how she felt when her doctor spoke that first sentence to her.

Mainstream traditional medicine will tell you that Alzheimer’s is incurable and untreatable. There’s even a quote on the Alzheimer’s Association’s website which says “Everyone knows a cancer survivor, no one knows an Alzheimer’s survivor”.

We’ve all heard the talk about the pharmaceutical industry suppressing cures because there’s more profit in treatment. That’s not the case here. There aren’t even any treatments. In 70 years of research, only 2 drugs have even passed trials and been approved for prescription, and they’ve proven worse than useless, with side effects which more than offset any hypothetical benefit. I speak from direct experience here. In the weeks that follow, I’ll share some of the research and conclusions which prove this out. The first thing a doctor does for a dementia patient is send them to a neurologist.   Why? Well, for tests, of course. What tests, and what are these test supposed to accomplish if there’s no treatment? Well, there’ll be more MRIs, of course, and spinal taps every 6 months, to test cerebro-spinal fluid.   Interviews, assessments, and med student observations. All filmed, of course.

Wait, WHY? No treatment, but endless tests and fucking spinal taps?

Yes. We can learn from her while we do what we can to make her comfortable and try to slow her decline…

So, traditional, AMA-sponsored medical avenues are out.   What next? And, since insurance won’t pay for “alternative treatments”, how the fuck are we going to pay for it?

Good questions.

Damn. Good. Questions.