Better? Really? Hell, yes.

There are days, many days in fact, when I wonder if I have imagined Jacquelynn’s progress and improvement. Days when she struggles for her words so badly; when communicating even the most basic concept seems infuriatingly just beyond her reach; days that find her so dejected and defeated-seeming that I truly think it all may have been just the cruelest of wishful thinking.

Then there are the Miracle Days. These are the days on which I kick myself for ever allowing myself to doubt, for my own all-too-human weakness. It’s on these days when I can barely breathe between noting and relating to her the new, long-lost, exciting and watershed moments as she continually demonstrates, all unknowingly, cognition and brain function unseen for more than a year.

Yes, I get weak. I cry myself to a semblance of sleep or simply lie awake all night, too tired to read and too wracked with despair to close my eyes and invite the nightmares in again. But these nights are fewer and further between than used to be the case, and they get rarer as time flows on.

In complete candor, if I had imagined her progress and improvements, she’d be dead or institutionalized by now. But she is getting better.

She has better endurance on the exercise bicycle now than I do.   Granted, I pedal faster and with higher resistance levels, but she outlasts me every time. There are simple things, too; simple automatic, unthinking muscular-memory things which have quietly but sharply improved. For example, ever since her shoulder injury and subsequent physical therapy in 2016, Jacquelynn has had very limited flexibility in her right shoulder. So, I help her into her jackets which she wears constantly around the house (her weight is still quite low, and she gets chilled very easily). The normal procedure has always been as follows:

  • 1) guide her right arm into the sleeve
  • 2) from behind, reach in front of her and guide her left arm down from its constant position against her chest (as if huddled against the chill), and help if into the sleeve, and
  • 3) move around front to straighten the jacket and ask for a kiss.

As of about two weeks ago, one step has been eliminated; now, as I pull the jacket around her back, she’s already reaching back with her left arm, feeling around for the sleeve.

Maybe it sounds insignificant to you, but please trust me, it’s actually a pretty big deal.

Also a big deal is childhood memories reasserting themselves.   Jacquelynn has NEVER been a person to speak about her childhood. She has long claimed to remember essentially none of it, save for her versions of stories her parents told over the years. She has always been very closed off about it, leading me to suspect that there may have been some abuse or trauma hidden in her past.

Perhaps I was wrong, though. For recently, we’ll be watching a television show or just talking and something will strike her in a familiar way and she’ll relate to me an anecdote from her youth. Amazingly (to me, anyway), she’ll often do this with little or no difficulty in finding words or even names (typically the hardest part for her), too.

But with each memory of home and family also comes more hurt.  She is crushed by her mother’s unwillingness to be of any help whatsoever, and every time it comes up, the hurt and rage seem fit to tear her apart. As many times as I beg her just to drop it, I remind her that her mom’s path is her own and irrelevant to us, invariably something will remind her of it again soon, and it will begin anew.

Can you even imagine?   Could you ever just write off your own child? Regardless of the antipathy that has always existed between them, could you ever hear “your daughter has Alzheimer’s and needs your help” and refuse? Even if you had more money than you could ever need or spend?

I apologize. Not the time or place. But I’m leaving it here so you can see inside just that little bit deeper. So you can understand the hurt and shame that I feel when I post and repost our GoFundMe link.

It has been an odd and busy few weeks, and it looks to get odder and busier as I work to find a way to delay the need to return to work full-time and remain home where I’m needed.

 

Wish us luck, would you?

The Lights Are On and Someone’s DEFINITELY Home!

Earlier this week, I had what I will call (for want of a more flattering description) a meltdown.   It had been an excessively challenging couple of days, with Jacquelynn having almost zero energy and growing increasingly moody as her nighttime sleeplessness translated into daytime petulance. This was all made so much worse by the growing clarity that her mother, for all the money she’s sitting on, is completely unwilling to be of the slightest assistance in her only daughter’s recovery.

On this particular afternoon, it seemed that everything I said and did triggered Jacquelynn in some way, and she would be reduced to tears and frustration, feeling as though I was judging her or snapping at her. Once, she even thought I had cursed at her when it was actually myself I had been swearing at. One final, very minor (in hindsight) confrontation led her once more to tears and I kind of lost it. I fled the room and deposited myself on the exercise bike, all but tearing my hair out in my frustration, and 100% sick and tired of being me. Full to overflowing with self-loathing and seeing only blackness in my vision, it was Jacquelynn who once more came to my rescue with a simple, crystal clear and beautifully prescient observation: “You need to get back to the things that bring you peace,” she said. “Listen to Dr. Dyer again.   Re-read that first book.”

It is an indescribably wonderful feeling indeed when I notice and am able to relate to Jacquelynn new and notable improvements n her cognition, but it is an even more magical and brilliant sensation when she notes them herself. This was the first such moment of several this week.

She was, of course, absolutely right. I knew it the moment she said it, too. Since Jacquelynn first gifted me with Dr. Dyer’s “Wishes Fulfilled” collection (book, 7 audio CDs, and 3 DVDs) in 2013, the (now late) Doctor has been a true guru and mentor to me, and his words and voice bring me peace and restore me to myself.   It has had precisely that effect, too.   I’m progressing through the book for (at least) the fifth time, and the countless YouTube videos, which she and I are watching together, are a truly transcendent experience for me.

Even more than that, though, was the absolute clarity and precision with which the thought was formulated and translated into speech for her. She not only recalled and cherished his impact on me but also remembered and spoke his name without struggle or hesitation. If you only understood how special and unexpected such a moment was, you’d be tearing up just as I am now recalling it. Then to see the light come on behind her eyes as she tilted her head toward me, a smile growing on her lips as she realized what she had just accomplished…

“I did that all on my own.”

This time, our tears were joyous and free-flowing.

Another similar though far less traumatic instance of clarity and recall occurred this morning…

There rests atop our refrigerator a gorgeous birch-bark basket (the photo above this article). A product of her impeccable decorating taste, she’s had it far longer than she has had me, and it’s been sitting right there for years.   Today she looked up at it and said, “I’ve always loved that piece. I wonder what’s inside it?” So, of course, I reached up and brought it down to eye level for her. There wasn’t much in it, as it turns out, save a few hair clips, an emery board or three, and an old greeting card. I picked the card up and read the front to her.   Halfway through my reading, though, she giggled and said softly “I LOVE this one”, already recalling and anticipating the punch line inside. She was actively laughing by the time I got to the inner page and read it for myself.   Yes, it was very funny. Far more significant, of course, was her clear memory of the card and its contents. She realized this just as I was about to mention it, and again her face lit up: “I did it again!”

As recently as a few weeks ago, let alone several months back, this level of casual recall would have been impossible.

Yes, my friends, the lights are coming on, one by one, the thousands upon thousands of rooms in the vast mansion of Jacquelynn’s mind are lighting up and doors are creaking open.

 

 

 

 

 

 

Hero, a poem

I felt inspired to compose a bit of poetry this evening.  I posted it on Facebook, and I wanted to share it here as well.  Thank you for reading.

Hero

 

Faced with necessity, I walked toward destiny.

Embracing need, I fled convention.

Into uncertainty, into fear,

I tread unknown paths on determined heels.

The courage is not mine, the strength I hope only to augment

Is Hers.

 

Her breath is my drive, her light my sunrise.

The power of her determination moves me,

Moves Worlds.

Moves History.

Changes all it touches.

Saves.

 

Facing today, we see only tomorrow.

Embracing Now, we pursue purity.

Into certain success, past fear,

We walk our path with faith and trust.

Her heart, my hands, our strength propels us

Forward.

 

Heart-guided.

International Women’s Day, and My Hero

Today is “International Women’s Day”, and like many other people will undoubtedly do in their own forums, I am going to spend a few paragraphs honoring my women hero.

Much as I love and respect (and miss!) my beloved mother, and believe me, she’s as worthy as any woman on the planet of honoring on this day, I am going to shine the light of reflection and gratitude on my brilliant, brave, and beautiful wife.

As many regular readers here know, my Jacquelynn is an accomplished scholar and scientist.   With an advanced degree in mechanical engineering, she launched her career by turning a then-groundbreaking hand-made diabetic blood tester into a hugely successful mass-produced game-changer for patients and the parent company both. Parlaying that triumph into many, many more in the field of medical science and other disciplines as well, she was known and respected throughout the industry and was the go-to engineering manager for medical start-ups, often turning down new and challenging offers while focused on her current projects.

Today, she sometimes despairs that she’ll never work in her beloved field again. She can be forgiven the occasional bout of fear and even shame, but I must never fail to remind her just what she’s accomplished thus far in her latest task.

She’s recovering from Alzheimer’s disease. This is not possible, according to currently accepted medical knowledge (though that is beginning to shift), but she’s doing it.

It’s not easy, and she still has far to go, but she is inarguably getting better. Even she notices it now, where before I had to point out to her the grains and evidence of progress, now Jacquelynn will stop in mid-sentence and remark “You know, I don’t think I would have gotten/realized/remembered that before.”

Jacquelynn is my beloved wife, the undisputed love of my life and a partner whom I honestly feel I have known and loved through many a lifetime. She is also, without doubt or hesitation, the bravest, strongest, most dedicated and focused individual I have ever known. Woman, man, child or adult, I have never encountered a truer hero and inspiration.

I go through every day just hoping that I can be enough, that I can serve and support her journey sufficiently. I strive to be what she needs me to be, and I can only pray that I can be even a fraction of the Matthew she deserves.

And I ask you again, if you are capable of doing so, to please help in any way you can.  With our finances running low, I’ve launched a campaign to help.  Please read and share the link, and you have our deepest gratitude for any assistance you are able to offer.

https://www.gofundme.com/savingjacquelynn

Namaste.

Moving Forward With(out)

So, it’s been an eventful week-and-change. I’m grateful for your patience as we work to transition to a new physician and other changes taking place here.  I’d also like to thank all of you who have contributed and/or shared our fundraiser.  I can’t do this without all of you, and we’re both so incredibly grateful.  If you missed it, hit the link and if you’re able to help, know that we thank you from the bottoms of our hearts.

Last Monday, February 19th, was our first appointment with the new physician.   While the hour-long drive was certainly no friend to Jacquelynn (she gets really restless and stressed at about the 30-minute mark), it clearly beats hell out of the previous 600+ mile drive.

This doctor’s office is in her house, which is fine, but it presented a couple of definite issues.   First, we showed up about 30 minutes early, which in our experience is pretty standard practice, what with getting first-time patient paperwork filled out and such (especially as we hadn’t received any preliminary papers prior to our visit). But, the front door was locked. Ringing the bell and knocking elicited a rousing response from the dogs in the house, but no other response at all. Moments after we arrived, another vehicle pulled into the drive.   We thought maybe that’s the doctor and she had just run out for her morning coffee, but no. It was another patient who also had an appointment at the same time as ours. And they had driven two-plus hours from Louisville, Kentucky.

It was a nice, sunny day, but a bit breezy on the front porch waiting for someone to open the door, but wait we did as Jacquelynn had a great difficulty with the steps (two very steep steps; one advantage to having a home office outside of the city’s influence is not being required to have handicap access, though that seems extra-odd for a doctor’s office) up to the porch, and was unwilling to go back to the car only to have to repeat the process. The other folks (Mom was the patient, and her daughter brought both her and Dad up) returned to their car to wait in the warmth.

It was precisely 10:00 a.m. when the doctor opened the door, and to say that our first impression of her personally was a tad lacking would be an understatement. She looked as if she had climbed out of bed mere moments earlier, and when we expressed a slight chagrin at having been made to wait outside for the last half-hour, an entirely unsympathetic “your appointment was for ten” was the response.

Then, when the other family knocked on the door and I told her “that’s your other ten o’clock appointment”, she muttered, “I hope not” and brushed past us to open the door. She didn’t let them in, though. Instead, she stepped out onto the porch for a moment, came back in (again brushing past us as we removed our shoes at her insistence), and then went back out onto the porch with her laptop in hand, returning alone a few moments later.

She would explain to us that this family had asked for a Monday appointment but had never confirmed, which I had, earning us the spot. I couldn’t shake the feeling, however, that we had both been scheduled and left to a “first-come-first-served” status.   Rather than make them drive all the way back to Louisville, she explained, she offered them a 1 p.m. slot, which they would return for. Would we have been chased away if Jacquelynn had agreed to return to the car to get warm?   Who knows?

Yes, the remainder of our experience was colored by this first few minutes, but it really did just get worse.

When asked for our new-patient papers, I remarked that I hadn’t received any, which elicited another surprising response; she all but insisted she had emailed them.   Honestly, I was expecting her to go and check her sent items in an attempt to prove it.

But, after wasting twenty minutes trying to fill out the forms while she began questioning us, Jacquelynn’s anxiety levels jumped further as one declaration followed another, insisting that all fillings, in addition to her root canal/post must be removed ASAP, in spite of the fact that earlier heavy metal toxicity tests were all negative.  Order followed order followed proclamation followed declaration, one atop the other, each accompanied by a blanket statement that each was a problem “100% of the time, although I’m not allowed to say ‘100%’, but I still do.”  She spoke quickly and without offering the slightest opportunity for us to interject.

This went on for a while when finally, it became clear to me that Jacquelynn was near her breaking point.   This is when I stopped the doctor in her tracks. I told her that both of us were very uncomfortable with her and with the conversations thus far. She immediately leapt to explain how she always runs through first appointments like this so as to provide patients with maximum value for the time. This seems counterintuitive to me, given the higher anxiety levels of most patients with Alzheimer’s, and I expressed that thought.   “I don’t get many complaints”, was her (paraphrased) response.

It went on like this, back-and-forth, for a few minutes, when Jacquelynn finally put her hand on my arm. I looked back at her to see near-fury on her lovely face as she said in a tightly controlled, clipped tone “I’M RIGHT HERE!” She unloaded on the doctor (and me, a little) for speaking around her the whole time.

This little exchange altered the tone of the rest of the two-hour-long appointment. It continued at Jacquelynn’s pace and tolerance until business was completed and we left.  I, of course, felt pretty guilty for participating in the “talking around” Jacquelynn bit, which I had promised not to do, and she let me have it a bit on the way home. Honestly, I was just trying to get everything done and get her out of there as quickly as I may. It was pretty clear from very early on that this wasn’t going to be a doctor-patient relationship to pursue. But, I had already paid my $475 fee and was going to get as much as I could to help my wife from our time as possible, and I did get some info we will use going forward.

But we will not be going forward with this doctor, which is why I’ve refrained from using her name at all.  She may be absolutely the best possible physician for someone else, and I’ve no wish to color anyone else’s opinion unduly.

I felt SO excited and positive about this new doctor, a close, experienced physician familiar and schooled in the Protocol, to shepherd us through the next phase of Jacquelynn’s treatment. By the time we returned home, I was quietly furious with myself for misreading what I felt was true guidance toward this particular doctor. Eventually, though, I realized that it wasn’t the doctor I was guided to, it was the experience. I, we, needed this day to show us that it isn’t a particular doctor which is going to get Jacquelynn and me through this. This is her, our journey. Right now, using what we’ve accomplished thus far and following Dr. Bredesen’s guidelines and Jacquelynn’s own indomitable determination, we will stay on course and continue to improve. Of course, we will eventually seek another physician who participates in the Protocol to advise and guide us, but for right now, we’re simply going to sail the course already charted and tack into the headwind of faith and momentum.

GoFundMe

Yes, friends, it has become necessary for even the proudest and most stubborn of us to reach out for help.

Today I posted a plea to GoFundMe.com to help allow me to remain home and minister to Jacquelynn for a bit longer.  Otherwise, I will soon be forced to return to work and leave Jacquelynn home alone.

Don’t get me wrong: I honestly miss working.  More down time, for one thing.  But, to put it as directly as I can, Jacquelynn simply isn’t safe on her own yet, and to leave her alone is just too dangerous.  Almost worse would be leaving her in “medical” care, as their training and instincts would likely run counter to the protocol which has brought her so far, and I can not and will not risk setting her back or, worst, destroying all the progress she’s made.

So, if you’re able to help, we are hugely grateful.  If not, please share the link and disseminate it as best you can.

https://www.gofundme.com/saving-jacquelynn

Thank you all so much.  I promise I’ll have a new post here soon to update you on our search for a new physician for Jacquelynn!

 

Matthew

Embracing A Terrifying Anniversary

Valentine’s Day

One year ago this day, at approximately 10 p.m., I rushed Jacquelynn to Bethesda North Hospital in Cincinnati with a kidney infection so severe that, mathematically, it should have killed her.

Those of you who have been reading this blog for a while (or have gone back through the archives and caught yourselves up) know what has happened since, but in shorthand, two bouts of “Severe Sepsis With Acute Kidney Damage”, a number of terrifying “psychotic episodes”, and a diagnosis of Acute Early-Onset Alzheimer’s Dementia.

Today, twelve months to the day later, we celebrated our 19th Valentine’s Day together as a couple, and our first as man and wife.   I’m more than thrilled to tell you that there is more of Jacquelynn present and interacting with me each and every day than there had been for nearly a year prior to last year’s cascading events.

Jacquelynn awoke to another Valentine’s Day card (she’s gotten a card or gift every day for the last week, which I’ve been doing for many years) and we were on the go for quite a while afterward. Amid our errands, she got to spend some time catching up with a dear friend and is still talking about it.

Karen was a terrific sounding board for her. Sympathetic and understanding, she, like us, wants only to see her friend recovered and vital once again. With the exception of that conversation, the subject of Jacquelynn’s illness didn’t enter into discussion a single time today. Of course, I administered her meds and supplements as necessary and fed her only the clean, organic and unprocessed foods she’s allowed, but these things are quite ordinary now, and occur without any overt need to discuss them.

This was 100% by design, by the way. I began this day with a silent commitment to purposely avoid any mention of Alzheimer’s, recovery, or doctors at all unless I absolutely had to.   Catching up with Karen aside, I wanted for her a Valentine’s Day as close to normal as I could possibly arrange: we’d stick to our regimen of meals, supplements, meds, exercise, and meditation same as always, but all talk would be uplifting and without dread, tears, or fear. I figured if I could manage this for one day, just one day, then I could maybe manage two. And if I do actually manage two, then I figure the sky’s the limit.

And it was a terrific day on all accounts. Romantic, relaxed, and quiet, we adhered to her regimen, but watched television, cuddled, and napped as well. And, as we prepare to call it a night while trying to pry ourselves away from a compelling documentary, she’ll tell you that it’s been a great day, and she feels blessed, happy, and blissfully sleepy. She’ll also tell you that she feels wonderful; healthier and more robust than she has in a long time. She knows that there is far yet to go, but she’s 100% committed to her path and her health.

Health and healing are made possible by the heart and mind, after all.   Yes, medications and professional medical input are essential, but if the mind and the heart aren’t 100% committed and aligned in their purpose, if fear and dread rule the day, if the focus is the disease and not life, then no amount of medicine, nutrition, exercise, or “Doctor’s Orders” have a hope in hell of healing you.

Only you can make your own healing possible.

Only Jacquelynn, albeit with all the help I can muster, can make her own return to full health possible.

And By God, I’m going to do everything in my power to enable her to do just that. With her strength and focus, nothing, and I mean NOTHING can stop her.

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.