A wobble On The Path.

Today was a bit of an off day.

Part of me thinks it can at least in part be blamed on the weather; getting her exercise outdoors always puts her in a better state of mind, and the exertion is truly good for her, both physically and cognitively.

I know that’s the gist of it, I really do. She was fully emotionally stable, and if you asked her, she’d tell you that while she missed the walks, she had a pretty good day.   But the day began with her falling out of bed, and that seemed to color every minute that followed.

Don’t worry; she wasn’t hurt. Not even a bruise. It doubtless helped that we’re sleeping on a mattress on the floor; we never got a bed to go with the new king mattress we bought last spring.

This was an off day. She had familiar speech difficulties, and the same issues with balance when drinking that I mentioned a few days ago. Not nearly as bad as once was, mind you. Nowhere near so bad as that. To prove that point was a telephone conversation with her brother in which she was still a bit disjointed and unfocused. Afterward, her brother thanked me again for helping her get SO much better than she had. She sounded off to me, but to him she was still miles better than before.

Yes, I’m oversensitive. I’m even paranoid sometimes. Haven’t I earned that right?

Actually, No. I haven’t earned any such damned thing. What I have is an obligation to remain positive and to bring light and hope to this endeavor that most would deem doomed before it began. I am 100% confident in this path, but there will be off days. There will be fantastic, off-the-chart-AWESOME days. There will be tear-filled shit days. Mostly, there will be good days with incremental progress with the odd not-so-great day sprinkled in to keep us on our toes.

Today was a good one, in many ways, but parts of it troubled me, too.   I guess that’s to be expected. I do know that every day will continue to be a learning experience. For us both, and for you, as you read these posts. I learn every day how to deal with what that particular day deals us.   I don’t carry any unusual wisdom into this situation; I simply adapt and improvise as we go. Occasionally I fuck it up. Not very often, thank Heaven, but it does happen, and it generally leaves my beloved Jacquelynn in tears. Followed immediately by my own tears, of course.

Sucks.

 

But then she looks me in the eyes, and I see her. I truly see her, and I see the love and the trust she has for me. It’s unconditional and unquestioning. She knows I’ll see her through all of this. She has zero doubt in me and in us.

 

In her eyes, I’ve earned that trust and faith.

 

I will not fail her.

The Bulk Buy

One of the key instruments in our treatment (yes, our treatment; I’m in this with her 100% save for a few of the specifically targeted supplements and of course the meds) is true clean and organic food. Let me tell you that I have never enjoyed every meal like I am enjoying them now. Even though I’m personally cooking EVERYTHING we eat, as we can’t really get carry out to fit in this area. Especially keeping in mind that she’s not allowed any grains or sugar.

So, the food is a lot of work, but it is by-and-large spectacular, if I do say so myself.  I’m a decent cook, and getting better with practice.

It is also horrifically expensive. The best deal I’ve found yet on the grain-free paleo bread for Jacquelynn is $5.99 per loaf, and a loaf is about 2/3 the size of the artisan whole grain loaves of bread we were using before (and I still am). It’s probably a bit less than half the size of a loaf of the garbage brand-name white bread. Of course, she’s also off peanuts and on almond butter. The fresh-ground peanut butter I buy at a chain organic grocery is generally about $1.99/lb. The almond equivalent is $10.99/lb. Store brand frozen chicken breasts average around $7 for a 3.5lb bag in this area, but I pay $4.99/lb for fresh, organic, free-range breasts. Grain-free pasta? Good luck. $12 for a 1lb box.

I promise you this post isn’t about whining. Moving on…

To be clear, I wouldn’t waver from this path now if they came out and told us we could heal her on McDonald’s and Chick-fil-A. But this week, thanks to an article I stumbled across online about what you should and shouldn’t buy at wholesale clubs, we’ve found significant relief for our grocery bill.

Turns out, we never should’ve let our Costco membership lapse several years ago.

The article I read singled out Costco over Sam’s club (where we’ve been members for years) as a mecca for clean eaters, and I can confirm for you all here and now how very true that is. I expect to cut our organic grocery bills by more than a third, and even more if I break down and purchase a chest freezer.

Try just a couple of examples:

Organic almond butter $7.99 for a 3lb jar.

Amy’s Organic Vegan soups: $3.79-4.59/can depending on where you find them, $10 for a 6-can case at Costco.

It continues. From almond-flour pastas to chia-crusted sweet potato crackers to great big bags of organic dried or frozen fruit and an unbelievably tasty organic apple, lemon, mint, and raspberry juice cocktail in a 3L jug for $1.97 (I bought 7 to start with as they have an expiry date of Sept 2018)!

Yes, it’s going to be more expensive eating clean and organic than it was when we were eating more carelessly. I accept that, simply because crap ingredients are cheaper than their non-GMO, pesticide-free, as-nature-intended counterparts. But having found an avenue for at least partial relief of that expense is, to us at least, monumental.

Especially when we keep in mind that the vast majority of the tests and prescriptions (not to mention the doctor) are not covered by most insurance.   This is going to get expensive pretty quickly, and I want to thank Costco and whomever it was who wrote the article I can no longer find about what to buy at wholesale clubs.

I’ve placed a link to the Institute for Personalized Medicine and the Bredesen Protocol on the “About” page of this blog. If you have someone in your life with this diagnosis, or if you’re just legitimately curious, please give it a read. It’s changing our lives, and it’s going to save many, many more as we get the information out there.

When we finally get it truly proven and accepted by the medical community at large, insurance companies will have to cover it, mainstream doctors will stop treating people with limitless life left to them as terminal, and medicine will be forced to cease thinking only of a pharmaceutical “magic bullet” as the sole goal in treatment research.

 

And 160 million lives will be saved by 2050.

 

A valid goal, I should think.

Naysayers

Fear is the great human weakness. Fear has an insidious way of coloring our perceptions and showing us what we fear rather than what is actually there to see. Learning to see with my heart and my senses rather than with my fears is proving to be a, shall we say, gradual process. To be kind.

When my fears drive my reactions, I see Jacquelynn as very ill and constantly at risk of more and dire loss as well as in constant danger of another “disconnect” at any moment.

But when I look through love and hope, I see only love and hope.   This perspective is all-important in our situation, as she is inescapably going to feed off of what I’m feeling and perpetuate it. I’ve seen this first hand, too. Whenever I feel down and overwhelmed, it is inevitable that she will have a very bad day.   She’ll struggle for words, her energy will be low, and she’ll be argumentative and uncooperative.  Conversely, when my day starts bright and smiling, hers does, too.  If I maintain the sunshine, then by-and-large, so does she.

Alas, I do seem to be getting better at keeping my energy and therefore my attitude higher and brighter. Twice-daily meditations are helping, and I’m sure that eating the same fully organic and garbage-free diet I’m feeding Jacquelynn is helping, too.

But staying positive isn’t easy.

Many people have read at least some of this blog, and as well-meaning as they are, some of them cannot embrace the concept that mainstream medicine isn’t all-knowing and armed with the latest and greatest information.   Meaning n harm in any way, they’ve fought this battle or know someone who has, and they are either unable or unwilling to believe that there was a chance for recovery that they weren’t led to themselves. They think we’re chasing unicorns in our quest for a cure, and feel compelled to prepare us for our inevitable failure. After all, Alzheimer’s disease is an unrelenting death sentence.   “Everyone knows a cancer survivor, but no one knows an Alzheimer’s survivor” is the common wisdom, isn’t it?

I respect your opinions, all of you, I really do. I understand where you’re coming from, and I’m truly grateful for the love I feel from you. I’m deeply sorry if you weren’t shown the opportunities we’ve discovered.   Uninterrupted, Alzheimer’s is on course to claim 160 MILLION LIVES worldwide by 2050. We’re here to keep that from happening. It isn’t a death sentence. Not any more. We’ll make believers out of you eventually. Just stick around and keep reading. The improvements we’re seeing are real and quantifiable, and they’re going to continue. They’re going to grow and we’re going to get Jacquelynn back to herself. It’s real, and it’s happening right here. First, we save Jacquelynn, then we use her example to save the rest.

 

All 160 million of them. None need die.

The Lights Are On and Somebody’s Home

Smiles. Great big, purely joyful, ear-to-ear smiles.

Until very recently, these moments created silent, choked-off tears in my heart as I tried to smile around them and join in. The reason for this is that her smiles were all but empty; the kind of vacant, nobody-home smiles you see in nursing homes when it seems that there’s no thought behind the smile, no matter how large and happy it looks.  The kind of smile that you see and just know that the person is very, very ill.

I’ve seen this smile many times over the years. A coworker had a customer purchasing a car a few years back, and she brought her mother with her. At 91, many would say she’d “lived a full life”, but watching her clutch greedily at her suckers and laugh like a six-year-old at her own farts made me cringe at the emptiness in her grins. That was the emptiness lurking behind Jacquelynn’s smiles.

Not. Any. More.

I’m not making any grand claims of instant recovery. There is still SO far to go, and there are still hurdles to jump and mountains to climb. But the progress is already undeniable.

Her energy is up. Yesterday, we had to send a urine sample away to an out of state lab for one more Lyme test, and the instructions were for the sample to be taken following 30 minutes of vigorous exercise and an hour’s recuperation. With absolute focus on getting a perfect sample, she practically exploded out the door for her morning “walk”. It was actually nearly a jog. I had NO IDEA she had it in her, but she truly hustled. Arms pumping at her sides, I was forced to really stride to keep up as she put very nearly a mile behind her before even slowing down approaching our driveway.

The level of energy on display wasn’t the only thing that surprised me, either. We spoke the entire time, and she never lost a sentence or hunted for a word (aside from a couple of names). Her focus and determination never wavered, and her pace never once relented until we were almost home.

And her smile was bright as the sunrise and as full of meaning and promise as well. There was thought and intent and reason I hadn’t seen in more months than I can easily recall. The tears that I choked back this time (and again now as I write this) have a new genesis altogether. I honestly joined in her joy this time.

Today, we gave a gift to our beloved neighbor Joyce. You may recall that Joyce recently lost her husband after a protracted battle with throat cancer. Well, Joyce has stated that she feels as deep a need for Jacquelynn in her life as Jacquelynn has for her; two souls who need the companionship of a friend like they need air to breathe. We had been trying to think of something to give Joyce as a gift, but not a bereavement card or another tiresome bouquet of flowers. Something to help her move forward and to hopefully bring a little much-needed joy into her life…

The answer came fully formed from Jacquelynn’s lips a few days ago, and it was inspired. I’m honestly ashamed that I didn’t think of it, but thrilled that she did, for many reasons.

I wrote a card to accompany the gift, which arrived from Amazon this afternoon, and we called Joyce out for just a moment to give it to her. It was a tear-inducing success and proved as brilliant a gift idea as I knew it was from the instant Jacquelynn suggested it.   Her idea.  Not mine, HERS.  SO much more than she would even have attempted as recently as a few weeks ago.

She still tires easily, of course, though not as quickly as before.   She has an easier time swallowing her pills with each passing day.  She herself observed that her balance while drinking is improving.

There’s a new prescription on the way, too. Dr. Ross’ office called and they’re sending a nasal spray medication to treat her for a staph infection in the nasal cavities called MARCoNS (Multiple Antibiotic Resistant Coagulase Negative Staphylococci). This is (according to my research) found in people with mold exposure and Lyme disease as well as other toxin-related illnesses, which explains why they immediately sent out the kit for yesterday’s urine test. Lyme bacteria is a huge factor in type 3 Alzheimer’s, and may even be responsible for several of her other symptoms, as I explained in an earlier post.

She’s smiling at me from across the room right now. It’s a smile with love in it, and gratitude. It’s the smile of an incredibly strong and determined woman who feels better. She knows that she’s improving, and that creates the smile that I’d die for. More, it is the smile that I’d LIVE for.

 

And I do.

The lead image for this post is a scratchboard portrait I did for Jacquelynn this Valentine’s Day.  It’s based on her favorite photo of her and mine of me.  I gave it to her in the morning and took her to the hospital about 16 hours later.  Our lives haven’t been remotely the same since.

 

What kind of day will today be?

There are days, with this diagnosis, when you just regret getting out of bed at all. Days when you feel as if every moment is a punishment for sins you can’t even recall.   How could you ever have earned this?

I’m immensely grateful to say that this was NOT one of those days!

With two full days of the supplements in her system and the even cleaner diet we’ve been on for a full week, I can honestly say that I perceive differences in her behavior and thought processes. They’re difficult to quantify as yet, but I’m confident in my impressions.

Her speech is clearer. While she will still occasionally struggle for words, it’s not as frequent, and it’s not stressing her out as much when it does happen. Yesterday, she was particularly emotionally fragile early in the day, crying quite hard a few times. But come bedtime, she remembered it as a terrific day. Today, things didn’t bother her like they had, though the subjects that had triggered her so badly the previous day never came up again (I am capable of learning from my mistakes).

In another example, fresh ideas were coming to her today.   Suggestions for gifts, ideas of how to help people, and even meal concepts were coming to her almost unbidden.   Like I said, nothing mindblowing or even obvious to a casual observer, but noticeable differences for someone who spends every waking hour with her. Could I be imagining it? Could I be seeing what I want to see? Of course that is possible, but I’m confident in my observations. I’ve pledged to be honest here and to report both progress and regression, and I will do precisely that.

One thing that does seem to be getting a bit worse still is her physical coordination, including eating. She has a great deal of difficulty with a fork or spoon and generally resorts to fingers pretty quickly. She’s had problems with fine motor control for some time, and that isn’t improving yet at all. Her confidence with walking and navigating stairs has improved greatly these last few weeks (with occasional regression) however. Flatware and even drinking are different stories, though.  Drinking from a water bottle (when taking her pills, for example), she has difficulty tilting her head back, as if afraid to fall.  She sometimes wavers and wobbles trying to get under the bottle to drink. Sipping from her tea mug can be problematic as well, as she continues to tilt it over after pulling it away from her lips. I try to be there and vigilant when she’s drinking, but there hasn’t been a spill in a few weeks. Several close calls, but nothing more.

Dr. Ross had a theory about the tremors and twitches, too. When I told her about the progression from frozen shoulder to the involuntary twitches in first the right and eventually the left arm, she asked a question: very pointedly, she asked if there had been a rash on her sides at any time during that progression. In fact, there had. Rather a bad rash at that, on both sides. She then inquired about the appearance of the breakout: was it splotchy, or generally all over? Or was it perhaps linear, like scratches?

As it happens, it was very much like scratches. In fact, my initial impression when I first observed it was that Jacquelynn had been scratching at it fairly vigorously. Dr. Ross seemed to know I was going to say exactly that. Apparently, there’s a variant of Lyme disease which can lead to frozen shoulder and twitches, and it is characterized by that rash.

Needless to say, a full Lyme workup, including Borrelia. These Lyme cells, or spirochetes, are a top causative agent in type 3 Alzheimer’s.

More evidence yet that we’re on the right track.

 

What kind of day will tomorrow be? It will be a beautiful day. A gift. A blessed day. Because I will be here, with my Jacquelynn, working toward a cure.