…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.