Progress Tries To Trump Fear (and mostly succeeds)

There are days I really wish I were better at this.

Jacquelynn really is doing better, and we’re both very much looking forward to our first appointment with the new doctor on the 19th.

Jacquelynn’s exercise time on the stationary recumbent bicycle has improved and increased all on its own. We started off just at any pace her body set, just trying to get 5 minutes of pedaling in. I made the decision very early in that I wouldn’t inform her of the elapsed time unless she asked, so as not to artificially limit her time. Initially, she was asking at 2-3 minutes, and I was gently nudging her to complete the five minutes. Today, she finally asked how long she’d been going at 9:40, and at a much faster pace as well (the display on the bike fritzed out a week in; what you expect for $70 at Play It Again Sports).

We are also meditating together twice daily now. We’d been talking about it for a while, but she finally reached a point of willingness dovetailing with awareness that it’s a viable activity now, and she’s really taken to it. Again, we started just a week ago at five minutes per session, and that has very easily ballooned to 15-20 minutes each time. I put on some gentle isochronic tunes (try the Insight Timer app; wonderful source and free as well!), and softly guide her through a breath-focused meditation that helps her create a place of calm and peace within that she will eventually be able to return to at a moment’s notice whenever she feels frazzled or afraid.

We’ve already noticed a considerable improvement in her focus and even her conversational skills immediately following meditating; words come more easily to her and even when the precise word or phrase she’s looking for isn’t readily available, her reactions are much calmer and gentler. Without a doubt, this will be a boon of ever-increasing value as she continues to heal.

 

But, as I stated in my opening sentence, there are definitely days when I wish I were better at this:

 

For many years, Jacquelynn has been subject to late-night leg cramps.   Occasionally, they’re so bad that she’s woken up screaming, feeling as though she were being skinned alive right in her bed. We used to treat these with an over-the-counter pill called, appropriately enough “Leg Cramps”, and of course, plenty of water.

Well, the pill was essentially a potassium supplement, and that is now officially a no-no. Her potassium was WAY too high upon testing last fall. So, with those same cramps shocking her awake two of the last three nights and three times in a week, that leaves water as our only recourse.

As you may imagine, Jacquelynn drinks a good bit of water, taking 20+ pills every day. Or at least it would seem so. Measuring it out, I have apparently allowed a significant lapse in her intake. Even with constantly topping-off her small pill-taking-glass with lemon water, she’s getting less than 16 oz daily. Add the 8 oz glass that begins every morning, and she’s still well under the recommended minimum for every human, not to mention someone with her medical history.

You see, historically, the leg cramps begin a month or so before her next trip to the emergency room for kidney stones, signifying a dangerously low water intake.

So, today I increased her water intake. An additional 32 oz daily to begin with, eventually to level out at 48 oz over and above what she gets taking her pills.

Here’s where I should have known better.

Now, I know full well that change isn’t Jacquelynn’s best friend.   Where she used to be unbelievably flexible and resistant to routine, exactly the opposite is the rule today.   Structure is essential, and any blow to that status quo is very difficult for her to adjust to. This knowledge in hand, you would expect me to just subtly sneak in a few extra glasses of water each day, gradually getting her comfortable with a new routine without announcing such a substantial change.

And you’d be a damn fool to expect me to be so wise. The first two-plus hours of the day were spent going back-and-forth from consoling and trying to put her at ease to explaining and finally arguing over the necessity of it. It finally calmed down when I turned the tables on her (albeit unintentionally) when I admitted my terror that I had already killed her by letting her go so long without drinking anywhere enough water to stave off another bout of stones and eventual sepsis.

Yes, these fears live within me. Yes, sometimes when I’m in the bathroom for an hour and a half, I’m weeping uncontrollably rather than taking a shit. Yes, my nightmares often involve losing her to my own inaction. Yes, I can meditate and calm those fears to return to my true faith in our path. But, No, I never intended for her to know these things. I did NOT consciously dredge that out to use it against her.   I would never conceive of that.

 

It worked, but I should be smarter than that by now. I should damn well know better.

 

She’s 4/5 of the way through today’s allotted water intake as of 3 p.m., and I’m charting it for her to observe and to help her know what to expect.

Goodbye, Savannah

I am definitely NOT enjoying this process, and I’m hopeful that it proceeds in a professional, patient-first manner, but I am in the process of “interviewing” new doctors for Jacquelynn.

As regular readers are aware, her original doctor on this protocol was, by all evidence, a tremendous physician, but in the long run, her office’s unresponsiveness and lack of follow-through doomed this relationship.   We have never, from the first scheduled-and-twice-delayed-without-warning follow-up video conference appointment, felt as if Jacquelynn’s case was treated with any level of priority. I listened to all the stories of staffing issues and taking over patients from other doctors mixed with the pressures of opening an office on the West Coast and serving as CMO for the entire institute while mired in an ongoing legal battle over the flood damage to their primary office, and while I sympathize and empathize with all these difficulties, to be brutally honest, they mean shit to me.

What matters to me is my wife, and all the explanations in the world aren’t going to get us past the fact that she deserves and needs to be a priority to her doctor. This is a very hands-on process, and we need a physician with that same philosophy.

I actually thought we had this all ironed out last Thursday (1/25/18).   With the doctor’s finally reviewing with us the three-month-old results of her Lyme screening (positive for four strains which we could have been treating all this time) and promise to get the information for how to proceed as well as scheduling follow-up labs and our next office visit to me that evening or the next morning at the latest.   But it’s been a week and I’m still awaiting that information. I’ve emailed a firm but polite reminder, which has also gone unanswered.

So, earlier this week I logged onto the MPI Cognition site and searched for doctors/practitioners nearer home. Mind you, this is a very new feature, only live for a little over a month, so not an option that was available to us when we desperately needed to get Jacquelynn seen as quickly as possible. I had at that point written Dr. Bredesen’s office directly to request a practitioner referral and was told that their referral system was under construction and wouldn’t be live anytime soon. That is when they referred me to the first doctor we saw. Even though she was in Georgia, 600+ miles away, it was our only option at that time east of Los Angeles, so I called and got us a very difficult-to-schedule appointment. We even got bumped up once due to a cancellation.

To my surprise, the site showed me two offices within fifty miles of our home. The nearest is an MD, Naturopathic Doctor (ND), and Functional Medicine specialist who has long specialized in treatment of toxicities, with Lyme being one of her primary focuses.   Our first appointment with this new doctor is Monday, February 19th.

Bonuses, as I see them:

This doctor (who shall remain nameless until I know for sure if this relationship is going to work out) is about 40 minutes from home. In addition to the benefit of no more travel/hotel/fuel (or plane ticket) expenses, her listed office visit prices are significantly lower than the first doctor’s.

For the first 6 months, this doctor wants to see ReCODE patients monthly, to monitor progress and stay on top of any adjustments which need be made.

Following that, every 3 months.

I’m deeply hopeful that this proves to be a terrific relationship. As many of you know, my personal philosophy is that life happens for us rather than to us. I believe that I was led to this conclusion and that it is the right thing for Jacquelynn at this juncture. We NEEDED Dr. Ross at the beginning of this process, and remain hugely grateful for her and to her. Without her help in September, it is unlikely that there would be enough of Jacquelynn remaining at this point to save, and I will always feel indebted to Dr. Ross for that. But every situation evolves, and this is how it has unfolded. I’m honestly excited to proceed.

Advocating Frustrations, or Getting Really Pissed at a Really Good Doctor

I must constantly remind myself that I am not only my wife’s “caregiver”, but I must also be her constant and inexhaustible advocate.

Up to this point, I’ve been hesitant to broach this subject, largely because it was “open-ended”, but it’s something I feel needs addressed, even though it’s not exactly a closed situation as yet.

As most of you know, Jacquelynn’s doctor is in Savannah, Georgia while we’re in the Cincinnati, Ohio area. That 670 miles is, of course, far from ideal, but to be working with the #2 physician connected to this protocol, a doctor who has had a significant hand in developing it and rolling it out for public access, it is more than worth the extra work.

We’ve seen truly significant progress on the protocol under Dr. Ross’ guidance, too. We are both very excited to continue and accelerate that progress.

But there has been a large downside to that distance.   Communication has been almost nil, and it has often seemed as if the members of the practice don’t communicate at all. Given that they all work in a tiny office, essentially shoulder-to-shoulder all day, I find that a bit shocking.

An example: Immediately following our first visit to Dr. Ross’ office, one of the many lab tests Jacquelynn had to perform was a 48-hour urine collection to be sent to a lab in Colorado for a thorough Lyme test. Every possible variation of Lyme disease would be tested for, as that has been shown to be a very serious contributor to Alzheimer’s (most especially the “toxic”, or type 3 variation, which Jacquelynn has). The instructions for collecting and shipping the sample were explicit and detailed, and of course, we followed them strictly. About 2 weeks afterward, we were called and notified by Dr. Ross’ office that the lab had called to say that the samples were unusable. There was a “viscosity issue”, and they would need a fresh sample.

Well, shit. That was a real pain in the ass to do once, but ship us the kit again and we’ll have another go. We were told that we would only be charged for the kit and labs once (not cheap!), and a second kit was “overnighted” to us, arriving three days later.

Of course, we repeated the collection and shipped with utmost attention to every detail.

A week later, we received a call from a different member of Dr. Ross’ staff, telling us that the sample was unusable due to a “viscosity issue”, and they would send us another kit.

“Wait a moment”, I said, “again?” The nurse had no idea what I was talking about. When I told her that we’d already gone through this once and weren’t going to do so again without a really good explanation, she asked if she could call me right back. Within fifteen minutes or so, she called back to apologize and said that she had called the lab and they would make do with the sample they had.

If that was an option, why the call in the first place?

All this happened in late September and early October of last year (2017). Since then, we had a Zoom conference with Dr. Ross to discuss our progress and to adjust meds and supplements in response to the first battery of tests. During this conference, Dr. Ross mentioned that she was going to send out a kit for a 48-hour urine collection to test for Lyme disease. This should have been done right away, she said and offered her apology for the delay.

I did keep my composure, but as you may imagine, I was clearly upset, and Jacquelynn was furious.

After that conversation, Dr. Ross apologized yet again and said she would get those results ASAP.

Closing that conference (which took place on a Saturday after two cancellations during the previous week), Dr. Ross said that we would be contacted on Monday with the lab results and to schedule our next appointment, which should be in January or February, via Zoom again, before scheduling an office visit at approximately the six month point.

Since, the only communication we’ve had with the office was to request a new prescription, as the thyroid medication she’d written was unavailable from the manufacturer and would remain so for an unknown period of time.   We got a new ‘scrip written and haven’t heard a thing from them since.

I’m a pacifist in both philosophy and practice. I dislike confrontation and always prefer to give people the maximum benefit of the doubt. However, by early in January, I had choked my frustration for long enough.   I cannot advocate for my wife’s health from a silent seat, so it was damn well time to speak up. I wrote an email to Dr. Ross expressing my disappointment in the lack of communication and insisting upon a telephone call at her earliest possible convenience.

Timing is everything. Winter had struck the southeast coast of the U.S. with a blow it was (and likely always will be) completely unprepared for, and all offices were closed as the entire eastern half of Georgia was under a state of emergency. In Ohio, the weather they received wouldn’t even have resulted in a 2-hour school delay, but there are significant infrastructure priorities between the states. I received the same automated email that I’m sure every one of Dr. Ross’ patients did, which explained the weather situation and added that Dr. Ross herself was suffering a severe bout of flu. The practice would return to business as soon as 1) the state of emergency was lifted and 2) Dr. Ross was healthy enough to return to work.

This Tuesday, I wrote another email. In addition to expressing my desire (right) to see Jacquelynn’s lab results, I expressed my concern that she wasn’t being treated as a priority patient. If the doctor’s responsibilities as CMO for the Bredesen Institute were affecting her ability to prioritize her patients’ care, I would be grateful for a referral to another doctor participating in the program. Perhaps even one closer to home, if possible.

The next morning, I received a sincerely written apology offering no excuses and an assurance that Jacquelynn could and would, from this point forward, receive the best of care. In addition, follow-up appointments should be scheduled immediately after completion of the previous one, so as to assure no one ever falls through the cracks.   Dr. Ross said she had the lab results in question on hand and would call me that morning as soon as the office opened to discuss them and schedule our next appointment.

That was two days ago. This morning, wondering if perhaps she was waiting for me to confirm my availability for a call, I replied to let her know that I am available immediately and will always answer the phone to her calls.

I’m still awaiting her return call.

 

I’ll update this as soon as I hear from her.

UPDATE

This morning, I had a long conversation with Dr. Ross.  While I’m not going to go into all the explanations or deeply into the conversation at all here, I will say that I am at peace with staying with her practice and continuing forward with her as Jacquelynn’s doctor.

Jacquelynn did test positive for four “chronic” Lyme variations, and we will begin an herbal antibiotic and detox program soon.  As this kind of detox can wreak havoc on a weakened immune system, we’re going to tiptoe into it very gently.  The last thing anyone wants is for us to push too hard and make her sick and retard her progress or, worst case, set her back.  So, we’ll begin very slowly, and, as the doctor said, let Jacquelynn write this program herself, based on any reactions she may have to the detox program.

I will, of course, keep you all informed and updated.

The big lesson here is that, as caregivers (I will soon retire this term on this blog, and that discussion will happen here, as well), we must NEVER cease advocating for our loved ones and making damned certain that our providers keep them and their treatment firmly on the priority list.  NEVER RELENT, and never, NEVER ALLOW THEM TO FALL THROUGH THE CRACKS!!

There were several issues at the practice which enabled exactly that to happen, but I helped with my reticence.  Rest assured that this will NOT happen again.

Please, please, do not allow it to happen to you, either.

Terror, Cowardice, and A Look Back

The single most difficult thing I’ve ever done was confronting Jacquelynn about her obviously reduced cognitive function.

It was so difficult, in fact, that I put it off far longer than I should have. The coward ruled me in every way when it came to facing this with her. I had confided in one close friend (you know who you are) early on about my concerns but continued to gloss over the facts even to myself. As you can expect, I wanted so badly to believe that it was all either inconsequential or completely in my imagination that I would grasp any thought that I could to deny what had become objectively quite clear.

The camel’s back began to break in the summer of 2016 when I had to take her to the doctor for what we would learn was a case of frozen shoulder.   Her marked difficulty understanding/obeying the doctor’s instructions (raise your arm in front of you; move your arm to the two- o’clock position, etc…) caused him some concern, which I glossed over yet again, but I couldn’t wipe it from my mind this time.  I can still see the frighteningly blank expression on her face as she stared forward, oblivious to what he was aking her to do.

At this same time, my mother was having a lot of health problems and had to be rushed to the hospital a number of times. She lived with my sister then (Mom has since passed) about 2-3 hours away, and of course, whenever she was taken to the hospital, I went out immediately. I was still working full time and there was as yet no perceived risk leaving Jacquelynn home alone for a day or two if necessary.

It was on one of these trips that my fears were escalated to the breaking point. Jacquelynn had an appointment to make a telephone call for personal business while I was on the way home from visiting my sister and Mom. As the number wasn’t programmed into her phone, she would have to dial it, and she called me, frantic and in tears over how to dial the dashes in the telephone number.

That was my last drive more than 15 miles from home without her. I could no longer deny the problem. She clearly could not function fully on her own.   The next day, I called her doctor and laid it all out for him. I’d begun noticing small things nearly a year earlier but kept hoping that it would improve, but clearly, it was getting worse. He immediately made an appointment for the next week (she was already scheduled for a checkup on the frozen shoulder) for a cognitive assessment.   This is where my extreme cowardice kicked in: I knew she’d never agree to this testing; whenever I’d raised the subject, her response was anger that she never gets out and never talks to anyone. She’s fine in social situations, she’d argue, she’s just rusty.   So the doctor agreed to take the initiative and “ambush” her with the testing. I was terrified; I knew how horrible an idea that was, but I couldn’t think of another path.

I was right. It was an absolute fiasco. She was furious at the doctor and at me, and of course, blamed her horrible performance on the test on us and on the stress and anger over being ambushed. It was hours before she could even bring herself to speak to me again, and days before such conversation was more than just barely civil.   Her trust had been betrayed, and she didn’t know if it would ever return.

And I didn’t know if I deserved for it to.

A week or so afterward, a peace was struck in the house. It was tenuous at first, and I was a barely willing participant, as it swung on absolutely not mentioning that day or attempting to further pursue medical input on the subject. The thought terrified me, as it was obvious to me that she’d most likely only get worse. But here again the coward reared his head; placate her or lose her was driven home as a very real choice, and I made the safe call.

Jacquelynn had stopped driving altogether by now.  In hindsight, I’m fairly confident that it was a conscious decision (though I wouldn’t have thought so then), only leaving the house with me or on very rare occasions going shopping with our neighbor. She had shut herself off from her few other friends from recent jobs, and was, deliberately or otherwise, cutting herself off completely. I hadn’t really even noticed, to be frank. Of course, I was still working between 47 and 65 hours each week, so my awareness (and maybe my willingness to see?) was blunted. Now, however, I expect that she knew, on some level at least, what was happening to her and was intentionally isolating herself so no one would see it.

Thus it continued until last February (2017). On Friday the tenth, I took her to the Urgent Care clinic for a kidney infection. Now, she has a broad history of kidney issues and had, just the previous February, emergency surgery for kidney stones. I know the symptoms in her by now and recognized them clearly. So, after their cursory tests, the clinic prescribed her an antibiotic and sent us home. Come Tuesday, Valentine’s Day, she was neither markedly better nor worse when I went to work for my 12-hour scheduled shift, but when I came home at 9:30, it was horribly obvious that I should never have gone.

Four surgeries, two frantic trips to the ER, and one odds-defying survival later, it was the third week of March. After her second hospital stay lasted nearly a week, Jacquelynn was understandably anxious to get home. She was physically depleted to the brink of absolute exhaustion but would recover her physical strength fairly quickly.

The day after returning home, Jacquelynn had her first of what the doctors called “psychotic episodes”. She awoke from a nap and recognized neither me nor her surroundings and would see people that weren’t there. While I was terrified, I managed to stay present and relatively calm and was able to “wake her up” from the first two such events.

The third was a different story and resulted in another trip to the hospital after I had had to physically restrain her from running away.  Amazing how much strength she had recovered in just two days. This trip was in an ambulance, though, because she didn’t know who the hell I was. She knew who Matthew was, but didn’t believe that I was he, and in fact, came to believe I was keeping her prisoner.  At the hospital, she came around and started calling for me, and that’s when I went in. I certainly didn’t want my presence to make her more scared than she already was. That same reasoning sent me home that night, not wanting to send her into another episode.   When the nurse called me at 11 p.m. with Jacquelynn screaming my name in the background, it was clear I’d made the wrong choice. Again.

Of course, all these events forced Jacquelynn to face the facts of her medical condition and resulted in her eventual diagnosis of Acute Early Onset Alzheimer’s Dementia. That’s where this blog and this mission to both find the way to health for my beloved Jacquelynn and to expose as many other people as possible to that possibility, began.

 

Our quest continues.

A Moment Of Spiritual Perspective

A very important aspect of Jacquelynn’s treatment, and stressed by Dr. Ross, is finding your spiritual peace.  It has been proven more times than can ever be reiterated in the space I have here that worrying and fearing and stressing over your health has an inevitable and profound effect, causing a continued downward spiral.  The return to health simply can NOT happen if you’re spending your energy wallowing in your illness.

Our faith is something with which we are very comfortable.  I almost typed “which we take very seriously”, but honestly, I believe that humor is inseparable from faith.  If you’re too damned serious all the time, life and faith are both going to be pretty dour.  We are decidedly NOT what anyone would call religious people, but we do have our faith, and it is very important to us.

So you’ll understand what I mean when I say that, in as non-denominational a way as possible, I had on Monday a ”religious” experience second to none in my life.

I’ve been cleaning what used to be “my room” (Jacquelynn and I kept separate bedrooms up until last winter when she needed me there at all times, and quickly became permanent), sorting and organizing while preparing the room to once again become my writing space, and to double as a guest room when friends or family come to visit, as so many have recently been volunteering to do.  Much though it sometimes seems as though we’re out on an island here, I really do have a tremendous circle of love in my life, and I am inexpressibly grateful.

While cleaning, I’ve also been listening to music on my phone, it sitting on the bureau behind me as I sit on the floor at the closet door, rotating randomly through all the 2000+ tracks randomly.

Taken from the advice of Abraham*, one of the habits I’ve developed over the last few years is keeping what is called a “Magical Wishing Box”.   In this box, actually a repurposed and very ornate Christmas cookie tin, I keep my wishes. Only the very most important wishes go in, writ bold on a piece of notepaper, and when I close the box, I recite “That which is contained in this box IS”.  This is a very prayerful and meditative ritual for me, and that wording is repeated on the handmade label on the lid of the box.

I was casually sorting through a pile of things next to the closet door, and the wishing box was atop that pile. Playing in the background was a very good Neil Diamond song, but I wasn’t paying the sharpest attention to it. It wasn’t until I picked up the wishing box and opened it, and my eyes fell upon the largest of the two pieces of paper in the box that the music really caught my attention. Neil had gone silent, and at the very instant that my eyes beheld the paper reading “FULL HEALTH FOR JACQUELYNN”, the musical lead-in for Louis Armstrong’s “What A Wonderful World” began.

At. Precisely. That. Instant.

This is, to my ears, the loveliest and most special and hopeful song I have ever heard. It has, for many years, meant beauty, peace, and contentment to me, and hearing it at that very moment as I read my wish-note, resonated and echoed in my mind and heart in giant, sky-high letters as

EVERYTHING IS GOING TO BE PERFECTLY OKAY.

It took several moments for the flood of joyful and grateful tears to slow, as I wept and hugged the box to my chest. Afterward, I checked my fitness watch to find my heart rate slowly coming down from 107 bpm.

 

I’m still reeling, and still overflowing with joy and gratitude.

 

It’s rare, this kind of profound experience. Rare and not to be ignored.  I go forward today with a renewed and vibrant confidence.  I no longer have doubt and fear, I have banished uncertainty and replaced it with full confidence and unshakable faith.  We ARE on the path to full health, and we will not waver from it.

 

*From “Ask And It Is Given” by Esther and Jerry Hicks

 

Supporting vs Helping

Recently, I joined a virtual support group for dementia caregivers on Facebook. I did this for a few reasons.

  • 1) An honest desire for support. While I do have a few friends and family members who will listen to me and offer a kind ear, it’s very different than talking with people going through their version of the same thing you are. Even though my eldest sister was our Mom’s caregiver for years, the last year or so of which was colored by her growing dementia, I feel as though I’m dredging up things she’s working to get past when I discuss it with her.
  • 2) A hope to be of service. While getting help is terrific, nothing is more fulfilling than actually being of help to someone in need.   In this group, I figured I would be able to reach out and touch lives with compassion and love.
  • 3) Lastly, I wanted to expose the group to the fact that a dementia or Alzheimer’s diagnosis is not the inarguable death sentence that many (most) doctors will tell you it is.   Jacquelynn is recovering from this diagnosis, and so can many of them, potentially.

The first two of these goals have been met and were almost instantly upon joining. This is an extremely compassionate and empathetic group, and everyone is always eager to offer love, advice, and prayers wherever needed.

However, I have been frankly shocked by the responses I’ve received upon mentioning the possibility of recovery. Yes, a couple of people have asked for details and links, but by and large, I’ve encountered everything from indifference to criticism and vitriol. I’ve had comments deleted and gotten “angry” emojis.

Why?

This experience brought to mind something that happened just after Jacquelynn and I returned from Savannah after our first appointment with Dr. Ross to get her started on the Bredesen Protocol. I have a close friend who is caregiver for her mother, also an Alzheimer’s patient, although much farther along than Jacquelynn was. When this friend saw the list of supplements we had been prescribed, the response was a disbelieving “THIS IS FOR ALZHEIMER’S?”, and I haven’t heard directly from them since, save in rare and curt response to something I post on Facebook.

At first, I thought perhaps I had said or done something wrong, but it occurred to me that it probably wasn’t me. While I don’t for one second think they or anyone else wish ill for Jacquelynn, I do think it possible that they reject the idea of recovery for several reasons.

One of those reasons may be guilt. Perhaps they feel they missed something and feel as though they’ve let down their loved one by not researching alternatives.

Another possibility is fear: I spoke to a dear friend recently whose friend has a mother recently diagnosed with dementia. The very concept of restricting her mother’s diet and working to help her is anathema to this woman. Her mom has a terrible sweet tooth, so restricting sugars is out of the question.   Out of whose question?   Are you truly so desperately afraid to upset your mother that you’d rather just let her wither and die, possibly over several years serving as her only caregiver and destroying your life as well, than to at least make an effort? Survival is work, for God’s sake, even for the healthiest among us.

Largely, though, I think it’s a result of an out-of-hand rejection of anything outside the medical mainstream. Their doctors have been telling them, and the media in all its myriad forms perpetuates it, that there is no treatment, no hope, and no future.   More money is spent each year on breast implants, one popular meme will tell you, than on Alzheimer’s research.   This mindset, fertilized by doctors and the useless monotasking medications they’re all so eager to prescribe, can only grow despair and hopelessness. It’s only crop is death, and we’re told only that “we’ll do everything we can for you until the end” because endings are so much easier to imagine than hope.

Doom-and-gloom is the fuel of desperation, and no hope ever grew from it.   I only wish to sow the seeds of hope, to enlighten people that there are alternatives to withering away despondently toward an inevitable and miserable end.

This is human existence, and not a single one of us is getting out of it alive. In the meantime, however, life is meant to be lived, and there IS hope for those with the courage to reach for it. PLEASE don’t reject hope out-of-hand. You haven’t failed your loved one, you’ve worked and sweated and sacrificed for them just as they have for you. Research.   Inquire. BEG for help.

I don’t consider myself or my dedication extraordinary. I’m a normal human desperate to save his wife, who is just as desperate to save herself. We’re a team, and we believe in our goal and its success. My purpose is not to elevate myself as some voice of authority, but merely to open eyes to the fact that there are alternatives, and Dr. Dale Bredesen has more time and commitment invested in this goal than any other single doctor on the planet, and the results he and his team are seeing are nothing short of miraculous. Eventually, mainstream medicine will be forced to accept and endorse his protocols, but can you afford to wait for that to happen? I know we couldn’t, and I’m damned glad we didn’t.

I thought long and hard about leaving the support group out of sheer frustration, but that would be quitting. As I said earlier, I’ve had a couple of requests for more information, and if that leads someone to seek help while it’s still possible than I’m elated to have served. So, I’ll be staying, learning, asking, and sharing in any way that service dictates.

I’ll be doing what little I may to save lives.

Please continue to follow and share these posts. Please do your part to help save lives that so many have already given up on.

Am I Who I Think I Am? Does It Even Matter?

Newsflash: I’m human.   I mean very human. I’m imperfect and flawed in ways I don’t even fucking want to talk about.

And every day, this situation brings them up and slaps me in the face with them, highlighting them in ways I never imagined. I stand exposed and emasculated at my million little failures, seeming to dance a vicious and taunting ballet of shortcomings and mistakes.

Often, I begin to retreat into myself. “I shouldn’t even try”, I curse to myself.  “I should just serve and shut up, not even try to communicate or deal with her socially.  It’s the only way to avoid being misunderstood and inadvertently hurting her feelings.”

Of course, I know that it is only by constantly communicating and engaging her that I have managed to pull her out of her shell, to engage parts of her brain as she regains access to them and to energize and excite the healing process, thereby accelerating and optimizing her usage of that most amazing tool she was born with.

I know these things, and I am beyond committed to continuing on course.

But still, I feel so small, so horrible and cruel when I make her cry.   It was certainly not intended, and seeing her in pain (especially when I am the cause of that pain!) tears the heart from me.  But I should know by now, right?   I should fucking KNOW how easily a remark can be misheard or misunderstood.  I should god damn well be able to predict and prevent most of these incidents.

Could it possibly be that some small, vicious part of me is doing this on purpose?

Fuck, I hope not.  I hope I’m not that person anymore.  I’ve worked so fucking hard to not be that person anymore.

**********

On a much brighter note, there is more and mounting evidence of her undeniable improvement.  Yesterday was shower day.  You may know that I have, since approximately last March, taken complete responsibility for showering Jacquelynn.  She essentially stands there, trusting me without question as I wash her hair, get her all cleaned and primped, and dry her off.  Then she sits calmly as I comb and dry her hair, doing what I can within my (very narrow) limits to brush and style her hair as best I can.

This is our common and very familiar routine, as this process has evolved over 3 or 4 showers every week since last February.

Until this last week.

Gradually, over the last two or three showers, Jacquelynn has begun taking a more active role in her showers.  She’s twisting herself into position to rinse herself more effectively; taking a towel and working to dry herself, especially her hair; even running her fingers through her hair to measure moisture as I work to dry it.

 

Honestly, Jacquelynn’s courageous and miraculous journey amazes me every day. I took her aside this afternoon specifically to make certain she knew how indescribably proud of her I am.  Her incredible strength and bravery in facing this illness inspires me every day to strive to be all that she needs me to be.  As I stated above, I inevitably fail, but I will never stop trying, and I will never abandon her.  Nor will I ever trust her care to anyone else.

Yes, we cry.  We both occasionally hurt one another’s feelings.  We get angry and we calm down and make up.

We are married, after all.

Such is life, and we are completely succeeding at life and at love.

Two Thousand Seventeen Is Gone; Long Live Two Thousand Eighteen

It’s Twenty Eighteen, and I want to thank you all for the gift of your time and attention these past months. Those are the only things you can never recoup, and to give so freely of them to this blog is a staggering gift. I will do my very best to continue to earn it.

As her improvement grows, Jacquelynn is coming more and more into herself. As her self-awareness grows, she becomes, well, more her. The woman I fell in love with was a focused, determined professional woman with no patience with weakness, most especially her own. While this can render her almost furious with herself (and occasionally me) when she struggles with expressing herself, this falls mostly and in a very large way firmly in the “benefit” category.

Where before she loved her walks, she has resisted riding the recumbent stationary bike I purchased for her last September (at her request).   This resistance was at least partially because she was uncomfortable climbing on and off of it. Her improving coordination plays some part in the new willingness and eagerness to get on board. She is renewing her complete dedication to full recovery and getting sufficient exercise plays a key role in that recovery.

She’s also enjoying a renewed interest in quizzing with the flash cards we purchased for her a few weeks back. She asked me to quiz her today, after waffling and putting it off recently. The results were, frankly, shocking. When last we went through the deck of 52 images, two for each letter of the alphabet, several weeks ago she had a lot of difficulty coming up with the correct word, scoring on just short of half the deck (22 cards). Today, it was only necessary to set aside and come back to 8 cards, and she was successful on the second attempt on all but three of those. That is, by any measure, an incredible improvement, especially considering that she hasn’t played with or leafed through the decks even once in the interim.

As I was attempting to write the rest of this post, I realized that all I was doing was re-writing something I’d already posted on my personal Facebook page.   So, with respect, I’m simply going to share here what I’ve already posted publicly, mildly edited.

2017 is over, and given what we’ve been through, many may expect me to celebrate its end as having been a horrible year, and glad to have it behind us.

Not so fast.

Yes, Twenty-Seventeen brought us a horrifying near-death experience (on Valentine’s Day, of all days), followed the next month by a sobering and terrifying diagnosis. We also said a tearful farewell to my mom after her illness. All ingredients for a truly shitty year, right? I don’t think anyone would argue with me if I raged at the departed year while begging for a better new one.

I’m unemployed. My wife has a terminal disease with no recognized treatment options. I’ll never see my mom again.

But look at it as I choose to:

Jacquelynn defied a 75% mortality rate for her “Severe Sepsis w/Acute Kidney Injury”.

We were in a position to allow me to take an extended break to be at home where my wife needs me.

Despite her regular doctor telling her there was no treatment for her illness, Jacquelynn is making a recovery that can only be classified as miraculous. Especially given that, without treatment, it’s likely she would already be essentially lost to me. Now, I can confidently project that 2018 will see her completely returned to herself, to me, and to the world.

Mom, much though I miss her and still weep at the thought of our loss, is truly home and free from her suffering.

So, while I’m not going to miss 2017, neither will I lament what it brought us. You’ve probably heard me say (and I believe this 1000%) that life happens FOR us, rather than TO us, and I look at last year in that same light. Nothing happened that wasn’t necessary to get us where we need to go, and we are, without a shred of doubt, on the right path.

 

I bid you WELCOME, 2018. I greet you with tremendous expectations and open my arms to whatever blessings you may bestow.

 

Exercising The Old Noodle

So, this has been a very interesting couple of days.

I’ve been exploring a few options to trim expenses around the house, while also desperately needing to upgrade the snails-pace of our nearly 15-year-old internet service. These two desires sort of dovetailed into some research with a local provider who offers both. Actually, it’s the same carrier we’ve been patronizing for our ‘net all this time, but with the new fiber-optic lines just laid in our neighborhood last summer, their services have expanded greatly, and with the bundling options, I’ve hammered out a plan which should provide benefits on both fronts: faster service and about $20-ish less outlay per month.

Not wanting to just make the executive decision without involving her, I enlisted Jacquelynn’s input.

It was with a little trepidation that I did so. I truly wanted her opinion, and I hoped to stretch her self-expression muscles a bit at the same time. The results just knocked my proverbial socks off. Her response was so ready, so fluid, that it would almost have been possible to forget her illness. I’m honestly tearing up again right now reliving it.

Her speech was sharper. Her focus was more intense. Yes, there were stumbles. She paused to find the right word a few times and even wandered off track once or twice. But for the first time in a very long time, I could see the woman who used to negotiate multi-million-dollar supplier contracts while wearing costume eyeglasses as a body-language deception, a classic trick to help ensure your opponent would underestimate you.   She made shrewd points, suggested different research parameters, and insisted on polling friends and neighbors on their experiences with the companies we’re considering. Examples from her past experiences dealing with utility companies sprung forth with rhythm as the conversation got flowing.

Today, we’ve revisited the subject, of course. I haven’t yet illuminated on her the great growth evident in the conversation because I don’t want to get her focused on the thought just yet. I will, of course; I’ve promised to always point out the progress and improvement when I see it, so as to boost her confidence even more. She has, however, begun talking today about working again when she’s fully recovered. It’s become quite the focus for her today, actually, and I believe that to be a very, very good thing. She’s always been a goal-oriented person, and if she’s now able to set and focus on goals, I say that can only signal a still-further-healed brain.

 

Just a couple of days ago, I was looking at a photo of her I took from around the time of our wedding last April. It is miraculous to me to see her in that photo and in the flesh today.   She’s smiling in the photo, modeling her dress, and it is obvious at only a glance that she’s very ill; there’s an emptiness to her look, as if she’s really not there at all. I see that and I recall how very frightened I was for her. Today, however, the lights are truly on and there is clearly someone home and hard at work. She looks sharp, and is obviously thinking at all times.   She’s working her heart out, and I see more and more lights coming on in the mansion that is her mind every day, and nothing could thrill me more.

 

 

 

 

 

 

Joy On The Holidays

The Christmas holiday is behind us now, and overall it was a terrific time.

As evidenced by every word written in this blog the entire time, this has been quite the momentous year for us. From the depths of terror and fear of what the future will bring to a renewed capacity for joy in the understanding that a “mortal” diagnosis is, in truth, no such thing.

There has been pain. There has been and will continue for the remainder of our lives be sacrifice and dedication to a strict and straight path for total health. Tears have flowed in anger, in fear, in love, in relief, and in joy. Great things have been forgotten and recovered.

Rings and vows have been exchanged as two people who believe they were intended for one another from the dawn of time were joined in matrimony.

The photo above is of the single gift exchanged between us this holiday.   My words to her from the cars I wrote to accompany it follow:

“Today belongs to “Us”, and tomorrow is ours as well. It is that promise that this gift represents:

            These two rings symbolize our wedding bands; forever joined over your heart and never straying from one another.

 I hope you wear it with pride and feel my love filling you as long as it rests upon your breast.”

 The week preceding Christmas, I saw a doctor myself for some (hopefully) minor health concerns. The fears unearthed by my (now scheduled) cancer screening bubbled up into an overly-emotional response to something on Christmas Eve, which led to tears and her thinking she had done something to make me angry at her. It wasn’t until I opened up to her about those fears (there are cancers in my family history) that I even realized for myself how afraid I was, and that I had let it boil over and affect her.   She forgives readily and quickly, though. Further proof of how blessed I am with her as my wife.

And she continues to improve! Things I can point to this week are subtle, but significant in my eyes, as they seem to indicate more “lights coming on” in the great house of her brain. A greater awareness of her body and its functions is making itself apparent; she’s more aware of when her clothes need laundering, for example. She’s reminding me of when it’s time for her meds only moments before the alarms I’ve set on my phone chime the need. She even remembers her hormone patch first, which is only replaced every four days.

Surprising me greatly, she has for the very first time since this all began, asked me if she can get her shower. Normally, she’ll cringe from my statement that it’s time for the shower, as she greatly dreads that momentary chill between turning off the warm water and getting dry. But not anymore. Yes, she still gets chilled, but getting and feeling clean has taken back its priority. That is significant, at least in my eyes.

So, this Christmas was a joyous one, even with a few tears thrown in.   Jacquelynn still makes certain, every single day, to stop and thank me for all she says I have done and continue to do for her. Of course, I’m truly just trying to be what she needs me to be, and to enable her to do the work of healing. But that’s not how she sees it. Again, the fact that she’s now able to remember, each and every day, that she has set herself this task, cannot be insignificant.

We hope that everyone who reads this is having a spectacular Holiday season, regardless of how or if you celebrate it at all. We send you joy, love, and deepest gratitude for reading and sharing this important message.