…Two Steps Forward

To begin with, thank you all SO much for the reads and shares. This has been a good week of growth for the blog, and I’m grateful to everyone who reads and shares. Every reader is another chance that someone afflicted with Alzheimer’s or other dementias will look beyond their traditional options for care, and, just maybe, find themselves recovering from a disease their doctor told them was untreatable and terminal. I also want to apologize for the long-ish wait between posts, but we have made up some significant ground this week.

We have even, I daresay, advanced just a bit along the course toward true health.

As usual, Jacquelynn is her own harshest judge, and she can struggle with accepting the minor improvements as I lay them out for her. Often, she smiles and embraces them, but she can also reject the idea of them as she struggles to make a verbal point or when I (as just happened) struggle to follow her point.

Oftentimes, she changes subjects so quickly that I fail to keep up, and my struggles to follow can anger her. Every time she struggles like that, it feels to her as if she’s going backward rather than forward, and nothing is more important than her believing in her progress.   So I work extra hard to ensure that she never loses sight of the gains she’s making.

Jacquelynn truly is improving in great measures when it comes to being left alone. Yesterday was the second time in two months that I’ve left her alone for several hours to go to the movies. While she was very happy when I came home, I get zero indication that she struggled excessively with my absence. Apparently, she napped much of the time. Mind you, she’s still terrible at hiding her angst, so I’m certain I’d know if she had struggled significantly.

A brief overview of our week:

Following our recent setback (read my last post for details), Jacquelynn has had an elevated difficulty swallowing her pills. Basic capsules remained pretty straightforward, but tablets or anything were giving her a great deal of trouble. Honestly, she would even occasionally get lost mid-process, stopping with a pill in her mouth to ask what she should do next.

She had even developed a new physical manifestation: while swallowing each pill, she makes a very distinct gesture with her right hand. My theory is that, as a very right-handed person with a right arm she cannot trust (due to the unpredictable “twitch”), she is forced to drink with her left and the right simply has to be involved on some level.

But we seem to have quickly moved past those issues. She has had absolutely no difficulty with her pills these last couple of days. Yes, even the odd gesturing is greatly reduced (though not gone altogether).   The pills she had struggled most with, a tiny thyroid caplet and an aspirin-sized tablet, which I’ve taken to splitting into two pieces for her, have gone down with zero complications for two days in a row.

Jacquelynn has also had, since last February, a strange tendency to tilt her head to the left. When I’m combing/drying her hair, I constantly have to gently correct the angle simply so that I can work on her left side. It’s also very pronounced when I help her with her prescription PED nasal spray. She holds her head quite straight as we do the right nostril, but when we move to the left, she tilts her head about 25-30 degrees to the left. It’s not a subtle tilt. The few times I’ve remarked on it, she has told me that it’s me who is tilting, and she’s compensating to see me straight, which honestly caused me a little alarm.

This Thursday, quite suddenly, that behavior stopped completely. I first noticed it during her morning dose (it’s administered thrice daily) of nasal spray. Not remarking on it for fear of causing her to unconsciously and immediately revert, I just noted it and moved on. An hour or so later, I was doing her hair after her shower and noticed precisely the same thing happening: there was, again, no unconscious tilt to her head at all. If the pressure of the comb pulled in that direction, she resisted lightly and kept her head erect.

After the post-lunch nasal spray produced the same result, I mentioned it to her. As I said earlier, I’d not made a big deal out of it, so she didn’t see it as very significant, but it also didn’t return, and hasn’t yet two days later. But I see this as very exciting, and possibly (I’m waiting to discuss it with Dr. Ross at our next appointment) one of the more significant developments yet.

With the increasing cold, we’ve taken to driving across the street and power walking a few laps through Meijer. An upside to this is more interaction for Jacquelynn. There are several women working there with whom she has developed friendships, and talking with anyone other than me is very good for her. She’s improving in her conversational skills, and I marked what I saw as rather a significant breakthrough two days ago: while discussing one of her previous jobs, she mentioned the company by name with no pause and just powered right through making her point. This is literally a first. Ever since her decline began to accelerate late last winter, she’s had increasing difficulty with nouns; names, titles, stores, and companies elude her like mercury, slipping away time after time, always just that far out of her grasp. This first, very casual, return to easy noun usage is by no means the new norm, but it is just as clearly (in my eyes, anyway) a legitimate step in the right direction.

As ever, there are bumps in the road. Sleep has gotten difficult for both of us this week, and an under-rested Jacquelynn is a Jacquelynn who will have speech and comprehension problems throughout the day. I even administered a little sleep aid in the form of a half-dose of Nyquil once.   Bonus is she was out within 15 minutes, but I dislike leaning on such things (plus the sugars in it are NOT on her diet). Even now, at 10:30 a.m., she’s dozing in her chair. If I were to allow myself to do so, I’ve no doubt that I’d be doing much the same.

 

Overall, a terrific week.

 

 

…Two Steps Back

When we got Jacquelynn started on the ReCoDe protocols, Dr. Ross made it abundantly clear to us that this was a lifestyle change, not a temporary treatment. The diet is permanent and inflexible; organic ONLY, no added sugars, and no chemical additives, and of course ZERO artificial GMO “foodstuffs” (that very term should frighten you; when did food become foodstuffs?).

The supplements she’s on are also key and must stay at consistent elevated levels in the body. This weekend drove home how vital this element is.

I’ve mentioned here before that, with the goal of alleviating the burden of taking SO many pills, I serve Jacquelynn two smoothies each day, each with eight capsules broken into it. Well, I was feeling a bit under the weather for a couple of days, and for two days I failed to make her evening smoothies, which obviously cost her a total of sixteen pills over the course of those two days.

Difficulties began surfacing for Jacquelynn after the first missed (Friday evening) smoothie. She felt slow and complained of feeling as if she were perhaps ill. We even discussed the possibility of going to the emergency room. But she had no pain and no fever. I checked her urine for the tell-tale cloudiness of an infection, and it was thankfully clear. Her symptoms worsened, though. From reduced physical coordination evident in simple things like brushing her teeth and climbing the stairs to levels of difficulty taking her pills reminiscent of two months back. She evidenced a more childlike problem with the mechanics of swallowing the pills, even getting confused between putting the pill in her mouth and forgetting what she was supposed to do next. It wasn’t until late Saturday evening, as things got worse and I had missed that evening’s smoothie as well, that I began to put two and two together. I realized what had happened too late to do anything about it then, and apologized to her as earnestly as possible. I feel as though I’ve failed her in every way. I have one responsibility, and that is her care, and I’ve let her down. It honestly feels, in a few ways, as if missing those pills set her back a month or more. We now have significant ground to make up, but as we’re fully back on track, she’s recovering those lost faculties quickly.

It is with deep gratitude that I embrace the lesson evident here, and within that lesson, I have taken further steps to ensure that none of her meds are ever missed again, and have further vowed greater care and vigilance in her recovery. Today we begin a modified exercise routine designed to get her heart rate up, which (according to Dr. Ross and tons of anecdotal evidence) offers commensurate rewards in feelings of sharpness and elevated mood.

I spent much of Saturday night and Sunday morning wallowing in self-rapprochement and hatred. Now, I know full well that those emotions serve precisely no one, and I swore them off with my renewed vows of vigilance. I apologized one last time and will not look back again save in ways that are truly constructive and helpful. We are back on track and will make up lost gains as quickly as we may.

Spreading Holiday Joy (join us, won’t you?)

I hope all of you are experiencing the greatest joys this season can have to offer. My personal history with Christmastime is spotty (at the least), but the very woman who inspires and whose recovery fuels this blog single-handedly returned the love and joy of the Holidays to my heart, and it is in that spirit that I work to bring Christmas joy into this home and to share it with each and every soul I encounter.

Jacquelynn and I have made a significant turn this week. While there are always difficulties and tears, her curiosity and thirst for improvement have reached a point where she is eager to begin retraining her brain. To that end, we went out this morning and purchased several sets of beginner math and phonics flashcards. Considering she truly is such a polymath, I was concerned about trying something so basic as she may consider it insulting, I was also a bit worried that if she did have difficulty with them, it would hurt her even more.

This, by the way, is what my father referred to as “borrowing trouble”, and I should damn well know better.

So, we went to our local United Art And Education store (a favorite place of mine) and purchased 4 decks; Addition, Subtraction, Phonics, and Words. I think we’ll begin with words, as nouns seem to be her biggest hang up in expressing herself.   Additionally, this is a focus of the Montreal Cognitive Assessment (MOCA) test everyone wants to put her through every time we visit a doctor. This may empower her to face those tests with confidence rather than the immense pressure that all but paralyzes her each time.

During the conversations that led to this shopping trip, I reviewed with her the most recent improvements I’ve noticed in her recovery.   These so excited her that she instantly began reaching and asking for more ways to exercise and hone her mind.   Individually, many of the recent changes for the better in her everyday behavior could be seen as insignificant, but taken collectively, they would seem to indicate an increase in cognitive capacity. However small, these things must be highlighted and pointed out, and they must also be celebrated.   This helps to give life and reality to the feeling of improvement, and to buoy her spirits when she occasionally feels that she’s going backward rather than forward.

For instance, every time we prepare her for her shower, I take her jewelry (wedding rings and Fitbit bracelet) off. Afterward, when I take her back to the room to put them back on, she has always offered me her right hand. Of course, the rings go on the left, but as she’s right-handed, it’s easy to see why she unconsciously leads with it. Yesterday, however, and for the first time in almost a year of me managing her showers, she casually and unthinkingly offered me her left hand when I told her I was going to return her wedding rings to her.

Insignificant?   Maybe, but I don’t believe so.   She unconsciously offered the proper hand after all this time, and I choose to make note of it.

At the same time, I made note of her greatly improved sense of balance in both donning and removing her shoes. In the past several weeks, she’s progressed from needing to sit down and have her foot guided into the shoe (or to have me remove them for her) to balancing herself against the chair while stepping into the shoe and removing them just the way you and I do; by stepping against the heel with the opposite foot and stepping out of the shoe. Again, an obvious and very notable improvement.

Finally, and you’ll forgive me here; I wasn’t raised to discuss such things publicly. It feels wrong, but I did promise to be open and honest about her progress, and I do believe this is important.

Jacquelynn has begun expressing real interest in physical relations again. Not that we’ve never discussed it before, but for the first time since her diagnosis early last year she is giving the idea actual thought, rather than responding to stimuli.

We had a long talk about it, and I made it clear that I was never going to ask it of her, but that she should never hesitate to raise the subject.   Everyone wants to feel desired, and I made it as clear as I possibly could that she is what I want, and I’m not going to go looking elsewhere for anything. I’ll be here when she needs/wants me to be. For reasons she couldn’t express, this brought her to smiling tears and a great relief I had no idea she needed. She didn’t suspect otherwise, according to her, but hearing it had a profound effect on her.

I realize that some/all of this is resultant of her hormones returning to a normal level via her meds, but this is key to full and proper cognitive function, so I’m calling it a full-fledged win.

Jacquelynn is also having a better time with her pills. Some of them (tablets, mostly) still give her a bit of pause, but overall it’s much easier for her today than just a few days ago.

I want to take a moment to thank you all for following this blog both via WordPress and through facebook.com/SimplyUplift/. Many of you have shared and helped to disseminate this page so as to help get the important message that Alzheimer’s isn’t a death sentence. SO many people are diagnosed each and every day whose doctors (like Jacquelynn’s former PCP) won’t, for whatever reason, expose them to the “alternative” (i.e. only) treatment protocols. If not for a truly charitable stranger who sent me the name of Dr. Bredesen in hopes it would be of help, I don’t know where we’d be today. I do know that without the help we’ve received, it’s very possible that Jacquelynn wouldn’t even know me by next Spring. Maybe sooner. I was losing her very quickly, but now I have her back and our future is open-ended and without limit.

Spread this blog, and spread the word. Do for someone else what he did for us.

 

Save a life.

 

Thank you.

Sunshine On My Shoulders

Wow.

Yes, that’s honestly the best word to sum up the day. I do have a couple of other relevant adjectives, though.

More. Yeah, that’s a good one.

Radiant. I used that one earlier, and suddenly she was even more so.

So, yeah, Jacquelynn had a terrific day. It started with good energy and just got better as it went.   For starters, all of her pills went down exactly the way you’d want; with no difficulty at all. One took an extra swallow, but otherwise perfect.   Two fun, energetic walks helped, too.   I think the highlight, though, was Joyce’s visit.

I’ve mentioned our neighbor before. Joyce has been Jacquelynn’s best friend for some years now. Having lost her husband to a long battle with cancer recently, Joyce has been dealing with the loss and they haven’t spent much time together for quite a while. So, when I finished repairing the chimes we gave her a couple of months back (she dropped and tangled them pretty badly), I invited Joyce over to show off our Christmas decorations and (covertly) so the two of them could spend a little time catching up.

Joyce spent most of that time gushing to Jacquelynn over how much she’s improved since they last visited. She went down the same list I do, citing so many areas where Jacquelynn is clearly so much better than before. From her thicker and more lustrous hair to the brightness of her smile and the fact that there is, very simply, just so much MORE Jacquelynn behind her eyes than had been the case for so long.

It’s 100% true, by the way. Maybe today, especially, but it’s been increasing gradually for some time, and she was truly radiant today, and Joyce saw it.

When Joyce left after half an hour or so, Jacquelynn was even bouncier and happier than she was when she got out of bed. We immediately went for a walk before I made lunch, and she asked me if it was time for her pills yet. Yes, she asked for her pills.

It was only one day, I know, and I promise I’m nowhere near figuring we’re “there” yet. But it was an outstanding day, and I’ll bloody well take every one of those I can get.

 

And so will she.

Holidays and Pill Troubles (or Two Steps Forward and One Step Back)

It’s been a while since my last update, and I apologize for that, but it has, overall, been a very good week.

Honestly, I’ve been enjoying decorating the house for Jacquelynn and trying very hard to bring as much holiday joy into the place as possible, and a lot of things have been sidelined in favor of that task.   We’ve also had a run of incredible weather and have therefore been taking more and more of her beloved brisk walks through the neighborhood.

I even took an hour-and-a-half to myself for a motorcycle ride yesterday. It’s never easy leaving her here alone, but she insisted I go, and I must admit that I had a very good time just riding and breathing.  She had a nice nap while I was gone, too.

Jacquelynn has, for whatever reason, taken a bit of a step backward in relation to taking her pills.  As I’ve mentioned before, between three prescriptions and all her supplements, she now has between 37 and 40 individual doses to take daily (some are only 2-or-3 weekly).  By working as many of these into her food (smoothies, primarily) as possible, I have her down to 20 actual pills daily. These have begun to give her a problem.

Initially, and for many weeks now, Jacquelynn has simply drunk her water or cranberry juice and shot each pill down on command. She has begun, however, to fight them. She moves her jaw around, maneuvers the pill about her mouth with her tongue, and makes a very tense production over almost every pill she takes. I think it began several days ago when one, in particular, gave her fits going down, and she finally resorted to chewing it.* Since then, she has difficulty with even the tiniest of them, often requiring repeated attempts with each.

Unfortunately, my attempts to help are sometimes interpreted by her as complaints, and occasionally even insulting. She is still very sensitive and emotionally fragile. There have been multiple tear-filled confrontations as she felt I was judging or criticizing her when I was simply trying to help.

Yes, I still make the mistake of assuming she’ll understand my intent when I reach out. And sometimes, she will. More often, though, she feels put down and will respond with a tearful “I’m not stupid.” I’d give anything to avoid ever letting her feel that I’m calling her such a thing, but it can be difficult to see her reactions coming. I never really know what to expect as far as reactions from her, to be candid, and that’s both frightening and exhausting.

On a lighter note, she seems to have completely avoided any adverse side effects from going off the Risperidone. Aside from the few times she awoke and thought she saw something scary (usually my shadow on the ceiling from the nightlight), there hasn’t been a single scare. I’m going out on a limb and conclude that she’s past the need for any antipsychotics.

But she still struggles for words, and is, in fact, having a rough couple of days on that front. The more difficulty she has in finding the right word or expression, the more she feels as if she’s not actually getting better, and the harder it can be to lift her confidence again. I need for her to stay confident. She needs to feel confident, because if she stops believing in her success, then she will inevitably fail.

But thus far today (it’s almost 6 p.m. as I write this), her pills have all gone down with relative ease. We took a trip to the library to pick up a book I had on reserve and did a little shopping, and she always enjoys her time out of the house. She has even asked if she might read the book when I’m finished with it. Now, it has been a long time since she expressed an actual desire and intent to do any reading, and I’m extremely pleased to hear her do so. I’m very curious if her short-term memory will allow her to get anything out of it. Fingers crossed, I’m very hopeful.

Tomorrow is another warmer-than-usual day, though it may rain a bit. We’re still planning a couple of walks and a trip to Whole Foods and Costco. She’s looking forward to taking a drive tomorrow evening to see some of the outdoor light displays in our area.  That used to be a favorite activity this time of year, but we haven’t done so in years.  I’m hoping it’ll make her smile.

 

*Fortunately, this particular pill was not one which forbids chewing.  Some few of them prohibit cutting or in any way breaking the pill before swallowing.

And, yes, I know I’ve used this lead image before.  Still, it seems more than apropos of late.

Small Steps Are Still Steps. Always Forward.

Now, that was a nice weekend! It was peaceful, fun, and had a great feeling of positivity and progress.   We listened to Christmas music and got a start on decorating the house, too. I have five of my planned nine trees up thus far.

I think maybe some of the new meds (hormones, primarily) are beginning to level. Her moods are a bit more stable than they were the first few days, for one thing.   Also, she seems to be a tiny bit better with short-term recall. This isn’t something I can quantify, rather more of an impression. Still, it feels a bit better to me.

There are, of course, still issues, some old, and some new. As her capability for independence has increased, I’m cautiously letting her do more things for herself, though I try to at least be close by if it’s anything of importance or carries any level of risk.   For instance, taking pills. As her motor skills have improved, she’s begun to take issue with me placing the pills into her mouth, so I will just put whatever she needs on the counter in front of her and busy myself somewhere close.   Occasionally (I’m guessing because she’s grown used to me doing it for her), she’ll just drink and swallow without the pill. Unfortunately, when I remind her of the pill, she thinks she’s taken it and doesn’t understand why I’m asking her to do it again. The cross feeling fades quickly, fortunately, but I wonder if that’s likely to change as her short-term memory continues to improve.

She still loses track mid-conversation and struggles for the right words. For some reason, nouns are the most difficult. The phone is “so you can call”, for example. Names of things and people are what she struggles with most, and I do understand that this is common. If the brain has to sacrifice something, nouns are more expendable than verbs.   Fight-or-flight, the most primal part of the primitive brain, seems almost always the last part to go as a patient declines, and that impulse needs no nouns, only verbs.

I’m also taking as an improvement the fact that she has consciously started a very important (to her) new daily regimen; she has told me that she wants to make sure that, at least once every day, she says “thank you” to me for all I do. I’ve told her it’s not necessary, but I do know how important it is to express your gratitude, so I’ve stopped discouraging it, and in fact, I believe it a big step that she made a commitment to do so all on her own, and she’s done so every day for the last week without anyone but herself to hold her to her promise to do so.

Personally, I’m calling that a clear improvement in memory.

Tomorrow we’re running an experiment. I’m going to a movie. I was going to go Friday, but I became a little uneasy about it so I postponed it.   It’s not a movie she wants to see, and I’ll be gone about 3 hours, total. She’ll have instructions to call me if anything comes up, and of course, I’ll leave the phone on (and probably hold it nervously in my hand the entire time). This will be the longest I’ve left her alone since I left my job at the beginning of September. I was away from 8-12 hours each day then, and she’s definitely better now, so this shouldn’t be a big deal.   But I’m nervous and I can tell she is a bit, too. But she’s also the one insisting I go. I know she’ll feel guilty as hell if I cancel again, so barring a setback, I’m figuring on going.

Wish us luck, and once again, I’m very grateful for all your thoughts and prayers. Many of you comment on these posts via Facebook, and I welcome any comments, questions or any other input you may wish to offer, either by commenting here at the blog or on FB.

I also want to thank a couple dear friends who have come forward and volunteered their time to help me get a bit of time to myself. You know who you are, and it remains very possible I may take you up on your kind offers.

Jumping At Shadows

There are still those moments…

 

When she sits up in bed, terrified of a shadow on the ceiling;

 

When the bed just feels off to her, even though nothing at all has changed, and only by reading to her and taking her focus off the fear can I help her to relax and fall asleep;

 

When I try to take her glasses off without waking her completely and she immediately gets cross and almost mean, wanting her glasses back right now (to which I always accede);

 

When she gets so angry at me for not listening and needing to be “reminded” of what she said in a conversation that never happened (and which she’s apparently been having in her head)…

 

Yes, there are still those sobering moments. Those instances when I wonder, just for a second, if I was projecting and imagining all the improvements I’ve cataloged over the last couple of months. The nights I cry myself to some close semblance of sleep where the nightmares rend and tear at me endlessly until I awake in a sweaty start only to learn that I’ve “slept” mere moments.

I sleep better than I did when I started this project, but that’s a qualified statement. Better still ain’t awesome. But it is better, and sometimes she can climb out of bed en route to the restroom without waking me at all until she hits that one creaky floorboard.  Every day and every night I learn something new about how to better serve her needs and help her on this path.   And every day I do chronicle a new improvement, whether in speech, fine motor control, eating habits, physicality, or cognition. They’re all related, and they’re all vitally important. And no, they’re not my overactive imagination like my doubting mind sometimes asserts. Jacquelynn is getting better, and at a much faster rate than ever predicted by the doctor.   Her hairdresser made a special point to make me aware of the improvements she could see since her last visit, which was two months back, just before our trip to Savannah to see Dr. Ross for the first time.

So yes, fear is a constant companion, but it is one to which I do not surrender. I listen to what it has to say, and then I process that information like any other data. Then, albeit with difficulty, I set it aside and move forward. For Her. For Us.   I move forward in love and in confidence and in excitement for what the day holds. Because it holds Us, and Us is the greatest thing anyone can be a part of.

Consume Mass Quantities!! (of pills)

Well, with most of the labs back and a fair grasp on most of the causes for Jacquelynn’s condition, the doctor wrote her a couple of prescriptions and boosted her supplement intake.

To begin with, her hormone levels were completely out of whack, so she’s been prescribed Estradiol and Progesterone in addition to an herbal supplement called EstroSense, which is designed to support production of key hormones. Also (yes, Terri, you were right about this one) her thyroid, in particular T3, which is a key cognition supporter, were low, and she was prescribed a medicine called Naturethroid, which is apparently facing some production issues. Since that can’t be had at all right now, an alternative was selected and we’re taking it now.

Other than those, everything else Dr. Ross changed was related to specific vitamin deficiencies. For example, Jacquelynn’s been on a daily D3 since March; originally 6000 IU for the first 60 days then 2000 IU daily thereafter. However, her D levels are still quite low, and Dr. Ross has changed her to a drop, to be administered under the tongue, 5 drops daily. We’re still waiting for that one to arrive.   In addition, she put us on a buffered Vitamin C powder (2 grams daily), a 100mg B6, and a sublingual Methyl B12 in 1000mcg (1 daily, and still awaiting shipment), and lastly, a massive “Ultimate E” vitamin E to be taken thrice weekly..

Other supplements added are: a CoQ10, a 600 mg Curcumin (4 daily), a Methyl CPG (a homocysteine balancer and methylizer), and CystePlus, a homocysteine supplement.

So, in the grandest CONSUME MASS QUANTITIES tradition of Beldar and Prymaat Conehead, this raises Jacquelynn’s daily pill count to 35, plus the vitamin C powder and the three-per-day BEG nasal spray. Not an easy task for anyone, and though she’s getting incrementally better every day, a TON to ask of her. But she’s 100% committed to her recovery, and so am I. I do what I can to moderate the burden by breaking several of her dailies down and mixing them into her smoothies. Even doing this, I’ve broken the rest into 6 dosings, approximately 2 ½ hours apart, throughout the day. I would be exaggerating mightily to say she’s enjoying it, but she’s so strong and so committed. She’s handling it without complaint, which is very likely more than I’d be doing if the tables were turned.

Several days into this, I will admit that her emotions are a little bit wonkier than before, which I attribute (right or wrong? Who knows?) to the hormones. I’m quite sure her body will adjust to the increases quickly.   I also note, on a strange but potentially important point, that her hair seems much healthier and is growing thicker and shinier than it has in years. As I’m the one showering her and washing/drying her hair, I noted just this morning how some of the spots that had grown thin were filling in very nicely.   It dries softer and combs more easily than it ever has in the ten months or so I’ve been doing it for her. In my view, this can only be a good sign.

She still struggles occasionally with finding the right words, and is even less patient with herself when this happens than she had been, but that’s because she does feel better, so she naturally thinks everything should be back to normal, and the reminders that we’re not there yet (and still a long way short of it, of course) hurt her deeply. She does recover (I mentioned how very strong she is, right?), but it’s a difficult few moments for her when this happens.

The improvements which I see, many of which I’ve shared with you here, are real and quantifiable. They’re also coming more and more quickly. She’s legitimately excited for Thanksgiving and Christmas this year, and I’ll be decorating this weekend to help elevate the spirit in the house.   When I asked her what she wanted for Christmas, she first just said that she wanted to spend it with me and that was enough. We say this to one another every year, of course, but always end up doing more. When I pressed her just a bit, she stopped and gave the idea due consideration. When she reached a decision, she initially struggled just a little with expressing it.   Finally, she smiled as the right words come to her, and said, “I want to dance with you.”

For the record, I’m no dancer. I have less and poorer rhythm than Elaine on Seinfeld. She used to be quite good, but obviously her physical coordination and muscle tone have decreased strikingly in the last year and change.   But we’re going to take it slow, maybe try a lesson or two, and dance to Christmas music in our kitchen on Christmas Day.

After she opens a couple of presents I’m not supposed to get her.

Lights

A quick (and vastly oversimplified) lesson in the mechanics of Alzheimer’s:

As the disease progresses in the brain, neurons and synapses become blocked and inaccessible. In essence, they die. This neuronal death is a very normal part of daily life; just like your skin (or any other organ) brain cells die and are replaced constantly. With Alzheimer’s, however, the brain’s ability to generate new tissue is compromised, and these regions of the brain begin to shut down. This used to be considered permanent and irreversible.   Traditional medicine still believes that. Still, as available brain storage decreases, the mind must select the most important things to preserve. This is basic survival; preserving the aspects most important to continuation of the organism. Thus, for example, retention of a beloved childhood experience may be sacrificed so that the ability to speak is retained. A common analogy pictures the brain as a massive house: as the disease progresses, more and more rooms are locked off. Eventually, no access remains beyond the entry and vestibule.   The lights are all off and the doors locked.

Yesterday, I marked an unmistakable example of a light coming back on, and it may be the single most thrilling moment of the last year.

One wouldn’t typically share this sort of information about one’s wife, but as we set forth on this path, such concerns take a back seat to telling a very important story. Context matters.

So…

Since her hospitalizations late last winter, Jacquelynn has been very uncomfortable wearing underwear. It simply feels too close and triggers her no-longer-latent claustrophobia. As a result, she doesn’t wear it around the house, and not often outside of it, either. Unless we’re going somewhere like a doctor’s office or similar, she just finds them too uncomfortable and is unable to relax or focus on anything else. As an inevitable side effect of this, she occasionally spots or stains her pants, though she’s never really been aware of this. Until now.

This is going to seem very odd, I realize. But it is from such seemingly insignificant moments that great strides come.

Beginning just yesterday, Jacquelynn became concerned with the fact that she was perceiving a bit of spotting/moisture in her pants after going to the restroom. She would clean herself properly, but would still feel little drops of “water” in her pants a moment later. As I said, these spots had been there all along, but now, a couple of months into the treatment protocol, the part of her brain which notices such things and assigns a level of priority to them has awakened. Lights are coming on in rooms that have been dark for quite some time, and that is very exciting indeed.

It took some talking to convince her that what she’s experiencing is quite normal for women staring down the barrel of their approaching sixtieth birthday. Wearing underwear and maybe a little bladder-pad would put her on even ground with a LOT of women her age.

When I explained that she had been essentially ignoring these things happening to her all along, she was a bit surprised, of course. She understood (after I explained) why I hadn’t pointed it out to her at the time, but was frankly at a loss as to why she’d not made note of them herself. So I elucidated for her as I did above for you. As she realized where I was going, yet more light came up behind her eyes.   As she begin to understand how significant a sign of her recovery this was, and as I teared up talking about it, her eyes also filled with tears.

Yes, we held each other and wept joyful tears, for a good three or four minutes, over pee.

And, she wants to expand her experience a little and trying to endure underwear again. Baby steps, of course, but still steps.

So, yeah. Good weekend.

 

Coming up soon, I’m going to update you all on how Dr. Ross altered Jacquelynn’s regimen following all the labs. Where was she weak, and where was she stronger than we maybe expected? How do those results allow us to focus her treatment further for her specific situation?   All that is coming later this week.   Stick around for that, please.

“…and Now For Something Completely Different, or “aahh…shi…”

First World Problems

In the wake of our teleconference with the doctor last weekend, it has been an eventful couple of days.

Let me preface this little anecdote by stating that I NEVER expected, no matter how long I live, to feel the way I did (and still do) about a little incident we had on Saturday. You’ll understand soon.

Saturday was a pretty nice day, all things considered. Nice conference with Dr. Ross (read The Kidney Correlation for more details), and nice weather to go for a couple of brisk walks as well. It was one of those walks that led to a new and wonderfully weird memory for me.

After we went for our first walk, immediately following the teleconference with the doctor, we split into our individual routines for a bit.   After helping Jacquelynn out of her jacket, she headed to the restroom and I retired upstairs to meditate and do a bit of writing. About half an hour or so later, Jacquelynn called for me, and I came running, as I always do. Toeing a new dark spot on the carpet, she said “I think this is coffee,” and asked my opinion. Now, some of you know that I’m colorblind, so not really knowing, but feeling an instant need to defend myself, I replied, “Doesn’t really look like it, but let me check.”

I’m the only one of us who drinks coffee, and I honestly didn’t remember even having an opportunity to spill where she was indicating as of yet that day.

So, I knelt down and touched the offending area. Not really wet, but a little cold, I still wasn’t sure, so I got down really close to smell it.

“It’s poop.”

“What?!”

“Yep. Poop.”   I looked immediately over to her shoes, and sure enough, there was poop on her right shoe, oozing from between the treads.

Being mostly interested in getting it all off the floor and preventing further spread, I helped her out of her shoes immediately. She was still a little incredulous, so I offered her the sole of her shoe and a quick sniff proved me right. Then it hit me; she’d already been upstairs to the master bath.   Which meant there was likely poop on the stairs, in the hallway, master bedroom and bath, and probably the laundry room and kitchen as well, as those were the first areas we entered when we returned from the walk. Awesome.   Not.

So, with a kind but firm rejoinder about where NOT to step, I set about with my trusty GP66 cleanser and microfiber towel. First addressing the obvious spots, then carefully retracing her steps. Oddly, I only found one more mark, but it was in my nose but good and for hours to come, I was smelling only poop, everywhere I went, so was convinced that I’d missed some. It wasn’t until after our next walk that I realized that it had been (mostly, anyway) in my head. Once I got out of the house for a while, it smelled nice and clean when I returned.

After I was finished cleaning, Jacquelynn came to me with another sheepish apology and was shocked to see me smiling happily. When she asked why all I could say was that it was so incredibly normal to have to clean up tracked-in dog poop that it had made me very happy. She offered me a confused smile, so I explained further; for so long it seems that every issue we have faced has such dire consequences. Honestly life-and-death stuff, day in and day out.   Doing something as unpleasantly pedestrian as cleaning dog shit out of a shoe and a few spots of carpet was the most normal I’d felt in ages. I seriously rejoiced in it.

Weird? Hell yeah.   Our lives have been eaten to death by weird. But NORMAL weird? I’ll take a shitload (pun very much intended, of course) of that any day.

Gratefully and with true joy.

The lead image is of a fake poop novelty toy.  Please do not take offense.