PD Revelation

The current pandemic naturally stirs anxiety for many. That is perhaps especially true for those with PD as we are at greater risk if we contract the coronavirus. Though the infection/mortality risk appears to remain rather low, anxiety is still an issue. What I can offer here is that actively working the JWH protocol can be quite calming. That time spent in the company of and talking with your “other” provides solace. In fact, that's the whole point of it. So stay healthy and let's keep working at the dialogue. Let's try, perhaps, to view the current situation as a challenge we accept. If we can make progress under these conditions (and we can!) we can come out the other end the stronger for it!

In the current version of Recovery from Parkinson’s Janice Walton-Hadlock (JWH) describes the “new exercises.“ (Search for that phrase in the book to find the relevant section.) These are the core of the protocol for anyone on self-induced pause. So for now these are my focus on this blog. But so far I have talked only about the first exercise, the dialogue. For this post, I want to shift to the second exercise, the requests for the felt presence of the “other.“

In Recovery from Parkinson’s JWH says, “The second exercise could begin when, in response to the first exercise, the constant communicant began to seem real and trustworthy enough. This sense of a real relationship took some people years to attain.”

While that might suggest giving a good deal of time to the basic conversation with the “other“ before adding in the second exercise, it’s clear it depends on what constitutes “real and trustworthy enough.” My experience was that at a fairly early point in the process, perhaps no more than a month into it, my communications with the “other” did feel somewhat real, at least slightly real to me. I took that as an indication that it might be worth giving the second exercise a try. Even if I was starting too early in the process, I saw no reason to believe it should cause any real problem. Of course you, the reader, will have to make your own decision. But now, months later, I am not aware of any problem caused by my selection of that early point for beginning the second exercise.

I don’t recall whether I felt anything in particular the first few times I made the request, “Let me feel your presence.” But before long it was leading sometimes to mild tingles in my arms. Fast forward a month or so and the tingles had shifted to my face. Soon these took the form of a fairly well defined band of slight tingles around my eyes. Before long I found I was expecting precisely those tingles, and wondered if that expectation might be limiting other feelings the request could bring. After discussing it with a friend well versed in practices such as meditation and finding what seemed to be some relevant online discussion, I decided to try not to expect anything in particular. The result was that the tingles now came not just to my face but also to my arms and legs.

In any event, while I tend to feel tingles, JWH makes clear in Stuck on Pause that a given individual may feel any of many possible sensations: “The feeling might be an expansion of your heart, or it might be an electrical tingling that makes every hair on your body stand on end. Or something else entirely.”

These days I use those tingles as an indicator that I have clicked into the right mental state, that is that I have connected with the “other.“ I repeatedly make the request, “Let me feel your presence” as well as related requests (see Recovery from Parkinson’s) at various points during my dedicated sessions and here and there throughout the day.

A couple of months or so after beginning the second exercise I was delighted one day to notice the tingles coming unbidden. Perhaps not coincidentally I had, just a day or so prior, asked the “other“ to help me stick better to the dialogue, to be less distracted. Make of it what you will, but it seemed almost as though these unbidden tingles were the “other” saying, “Hello, I’m here... please stop being distracted and connect with me.” And I’m pleased to report the tingles continue to come unbidden from time to time. :)

How do you feel the presence of the “other”? Let me know!

In my experience it was helpful first to notice what kind of internal monologue or dialogue was my default. It's my understanding that people with PD typically engage in an internal monologue, talking to themselves. In my case, I do some of that but also a good deal of talking to others I know, as if rehearsing conversations with them.

It seems helpful to recognize your default so you'll be able to see when you have you drifted back into it or have successfully replaced it with dialogue with the “other.”

(I don't know if there are people with PD who don't engage in any internal monologue or dialogue at all. I have read that some people don't. If by some chance you don't, it raises interesting questions concerning the applicability of the JWH method for you. But I would guess it should still be workable. You can simply engage in the dialogue with the “other” out loud or in a very soft whisper. I believe that is an acceptable option for anyone anyway.)

In any event, I began by simply trying to engage in the dialogue as much as I could. The idea is to make it nearly constant, if possible. For some folks this may be easy. For me, it is all too easy to slip back into my default mode, before long realizing I've gotten away from the dialogue for the last little while. So for me a major challenge has been to try to remain more constantly engaged in the dialogue. In fact, just to make sure I put in some significant chunks of time in the dialogue, I've regularly put in one or two dedicated sessions per day for just that, retiring to a private room in my home and spending somewhere between 15 minutes and an hour in quiet dialogue.

Aside from in a dedicated session, it seems easiest to do the dialoguing during activities that don't require great deal of active thought. I have had some success during dog walks, at the gym, etc. It is difficult to be in the dialogue while reading, though I have developed a way, which I'll get to later, to do this to a small degree. That said, surfing the internet is a distraction, and if it detracts a great deal from your time in the dialogue you may wish to set some limit on your screen time.

If at first it seems you're not getting anywhere with this, just keep at it. My progress at first seemed minimal, but very slowly I have noticed an increase in my time in the dialogue and simply more frequent little connections with the “other.” (I'll address the latter in an upcoming post.) I still have quite a ways to go, but the progress is there!

I'll talk much more about this process in upcoming posts.

As I write this, I've been following the Janice Walton-Hadlock (JWH) PD protocol for something close to six months. Having concluded that mine was very likely a case of Type I PD with a good possibility of Type II as well, my focus so far has been on the dialogue with the “other.” (I have not yet tried the visualization exercises for helping mechanically to turn off pause described in Stuck on Pause. All in good time...) For now, that will be my focus in these posts, which should also be appropriate for 95 percent of those PD folks reading this.

I've already forgotten some of the details of the experience during the early going. I can say, though, that initially my efforts at the dialogue with the “other” were considerably less intensive and less consistent. Even today, during daily activities I manage to engage in the dialogue only sporadically. Getting that to be more constant is a continuing challenge, though I do believe I'm making slow progress. More consistent is my use of a couple of daily, dedicated sessions reserved for the dialogue.

One of the key items I do recall: When you begin the JWH approach you have to decide first who you will be talking with. I came into the process somewhere between an atheist and an agnostic. So I could not just begin talking to the God of some established religion. Even if you are a practicing member of some religion, you have to make sure your version of God fits the profile held by JWH to be necessary for the process to work. That is, the god or “other” you talk to must be loving, benign, someone you can talk freely with, laugh with, etc. So if your version of God is stern, judgmental, punishing, or anything similar, you'll have to make some changes, develop an image of a different sort of “other.”

Fortunately, JWH makes clear that the entity you talk to need not be any traditional version of God. It can be “a deceased beloved friend or relative, a 'higher power,' some saint or sage, or even a beloved, deceased pet” (Recovery from Parkinson's, 2019, p. 79). More generally, it seems it can be “whatever it is that a person understands to be universal Love or the source of all creation” (Stuck on Pause, 2017, p. 158). See JWH's writings for still more options.

For me it was easy enough to believe in the universe and the interconnectedness of everything in it. So that was my start. It was my impression that this “other” should be somewhat humanized to make “him” more relatable. So I gave him a name and a vague look designed to seem gentle and benign yet wise and knowing. JWH suggests not spending a great deal of time fretting over who you will choose as your “other.” Probably best to let it unfold organically. In fact, at first I tried our deceased dog Daisy. I'm sure I could have made her work, but after a couple of days I felt it a bit difficult to see her in quite the right way. So I switched to the idea of “everything,” in all its mystery, in a humanized form. Do what works for you.

But what if you are such a staunchly logical atheist that even options like those I've described seem like too much “woo” for you to tolerate? Well, are you really going to let that stand in the way of taking a fair shot at recovery from a progressive, degenerative condition? You're human. That means you can change. Talk yourself into believing a little something new!

Once you've chosen your “other,” you need to get going on the dialogue. I'll share much of what I've learned about that in subsequent posts.

[Updated: May 6, 2020 added an additional link; May 15, 2020 mentioned “centering prayer”; 11/30/20 minor edits; 7/5/21 added link; 7/26/21 added link; 11/2/21 added link; 1/13/22 minor edits; 9/29/22 minor edit; 3/14/24 added link]

For this post, I'll assume you've read the Introduction linked to at the top of the page.

If you're pondering Janice Walton-Hadlock's (JWH) ideas, this post's title is probably one of the first questions you'll grapple with. After all, the Western medical establishment insists there is no cure for PD. Moreover, her ideas, derived from a great deal of clinical observation, have received only limited documentation in the professional medical literature. (e.g., for papers documenting some of JWH's earlier work see here and here)

But I believe too few people with PD have examined that question with sufficient care. One reason appears to be that some folks who are on prescription medications for PD are inclined to dismiss JWH's work out of hand once they read of the potential risks such medications carry for anyone following the approach. Unfortunately, some then go on to respond scornfully to inquiries about the JWH protocol, attempting to steer even those who are not on PD medications away from it.

How might those of us for whom the protocol could be appropriate better approach assessing its merits? Might humans have discovered some health-related truths outside the Western medical research establishment? And might JWH's work be an example of one of these discoveries? The question is not whether every detail in JWH's work is correct. She has revised her ideas before, and they will undoubtedly continue to evolve for as long as she continues her work. For our purposes, what is important is whether she is generally onto something to a degree that makes it worth pursuing her approach. Here's how I see it...

Anyone who concludes JWH is not onto anything important, that her ideas have no validity at all, would have to conclude as well that she is either fabricating stories about all she has seen or is grossly misinterpreting most of what she has seen. I leave it to you to assess the likelihood of either of those possibilities. (e.g., gather information, read over materials including the 2020 edition of Recovery from Parkinson's in which she describes the evolution of her ideas, watch her webinar on the “links” page, listen to her being interviewed, consider possible motives, and weigh the facts before mulling it all over to reach some conclusion.) In my own estimation, the likelihood of either is vanishingly small.

Nevertheless, one might ask why there are not more online reports from those who have recovered via JWH's methods. First, I should mention that a little digging does turn up some reports. They begin with JWH herself as she describes her own recovery from PD in her books. There are of course also quite a number of patients' successful recoveries described at varying levels of detail throughout her texts.

Beyond her writing, there have been a number of cases reported online. I saw mentions of remarkable successes (and some frustrations as well) in the old archives (unfortunately no longer available) of an email support group for those following her protocol. (The group itself lives on!) Available today is this report from a few years ago, before JWH's newer ideas about pause. Another older report of recovery is this comment from 2011. More recent are this blog and this webpage from people who report ongoing or complete recoveries resulting from JWH's newer approach. Update – 7/26/21: Another recent success story is mentioned in this post. Update – 11/2/21: Another is this blogger who has reached the stage of recovery symptoms. Update – 3/14/24 Yet another is this blogger who reports a rapid recovery.

Note that the newer ideas about “pause,” which should benefit a much larger percentage of people with PD, only came to light a couple of years ago. So, much as with this blog, my tentative impression is that we are just beginning to see more accounts of experiences with the newer protocol.

Then there are cases not directly related to JWH's work but which nevertheless lend some support to its validity. For example, when I performed a search along the lines of “miraculous recoveries from Parkinson's,” wondering if there would be common elements to any such reports, two of the first cases to come up prominently were this one and this one. Each features a person who reportedly recovered from PD following what may be seen as a minor variation on the JWH method, involving a history of conversing with a somewhat God-like figure. A third case appears in the medical literature, a case of remission from PD that the authors link to a specific form of meditation. This again provides support for a brain retraining approach. In fact, to my mind, certain elements of the form of meditation involved, known as “centering prayer,” share commonalities with the JWH recommendations, particularly the second of the two core exercises.

Still, it's fair to ask why more people who have recovered have not come forward. JWH discusses this in both the old version and the 2020 version of Recovery from Parkinson's. (see pp. 21-22 of the 2020 version; pp. 215-217 of the 2013 version) (I was able to find the 2013 edition, still available for download, somewhere on her website. Note that it is very much superseded in terminology and concepts by the newest edition. Still, it does contain info that may be of interest to those following her approach.) I leave it to the reader to see the details there.

Suffice it to say that when JWH's recovered patients have returned to their neurologists (or even their own colleagues or friends) to report the news, they've invariably been told their PD diagnosis must have been wrong, that they'd been feigning their symptoms, or even that they were psychotic. With that sort of reaction, it's no wonder many who recover have little interest in further publicizing their stories. This seems especially so in light of the kinds of personality changes encouraged by the JWH protocol. That is, working toward coming off pause, leaving the “Parkinson's personality” behind, seems to me to nudge people in precisely the opposite direction from one in which they would be motivated to debate others about what they had been through. So I suspect many of these folks just go on with their lives.

I see JWH's ideas as a remarkably insightful blend of Chinese medical theory, Western neuroscience, and clinical observation that cannot easily be dismissed, and that offers a very real possibility of recovery. As long as you don't neglect the other low risk things you can do for your PD, it offers an unmatched risk-reward ratio!

Update – 11/29/20: I now have an additional, very substantial piece of evidence supporting the validity of JWH's work. I have my own recent experience with having turned off pause. It was an utterly distinctive, very real, intense, transformative experience, with pervasive impacts, perfectly consistent in many details with what JWH has written about it. In short, it was the most amazing mind-body experience of my life. I don't believe anyone who has experienced pause turning off abruptly could possibly harbor any doubt about the validity of the protocol.

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“Stand up and fight back, You got nothing to lose” ~ Jimmy Cliff

[Updated: 8/7/20; 9/19/20; 10/9/20; 2/21/21 Expanded discussion to include Type III and Type IV PD; 9/15/21 Slightly revised comments concerning medication; 11/6/21 Added comment about “psychogenic condition”; 2/5/22 Added paragraph about the phase of recovery symptoms]

For your convenience and review, I offer here an extremely condensed thumbnail sketch of my understanding of the Janice Walton-Hadlock (JWH) approach to addressing PD. It is no substitute for reading JWH's books Recovery from Parkinson’s (2020) and Stuck on Pause (2022).

Note that the JWH treatment approach is fully appropriate for those who have not started on prescription PD medications. For those who have been on such medications (or mucuna) for more than a few weeks, however, it may carry excessive risks. Find information to help guide you on this issue in Recovery from Parkinson's (2020) and in Once Upon a Pill (2003).

As outlined in Recovery from Parkinson’s (2020), JWH learned that idiopathic PD is a psychogenic condition. She divides it into four categories, Type I through Type IV. About 95% of people with PD have Type I. About 90% have Type I and Type II. Type I is self-induced “pause.” This refers to having willed oneself, at an earlier time in life, into a kind of “near-death neurological mode of relative numbness,” (Recovery from Parkinson’s, 2020), the result of some emotional or physical trauma. Type II involves a subconscious dissociation from an injury, and is sometimes referred to as “pseudo” pause. Types III and IV are less common. Type III involves conscious, self-induced dissociation from an injury. Type IV is normal, biological pause resulting from a life-threatening injury. Any of the four types can lead a person to get stuck in its version of pause mode, setting in motion processes that lead eventually to PD. Both Recovery from Parkinson's and Stuck on Pause provide some self-diagnosis exercises you can try to help determine whether or not you are on pause.

If you have Type I, the treatment involves retraining your brain to come off pause. You do this by engendering in yourself a sense of safety via stimulating areas of the brain believed to be inhibited in people with PD, specifically the striatum and thalamus. This is accomplished, in the first of two primary exercises, by carrying on in your mind, as constantly as possible, a conversation, speaking from the heart, with an “invisible friend” you perceive as loving and knowing, who hears your every thought. This “other” could be your version of God, the universe, a deceased grandparent, etc. (It is important to pick an invisible friend who is consistently unconditionally loving, supportive, and nonjudgmental.) This communication is intended to replace the internal monologue more typical of people with PD, and is aimed at stimulating the striatum. (Search Recovery from Parkinson's, 2020 for “the new exercises.”) This exercise can be seen as a form of cognitive behavioral therapy. I believe it might also be viewed as a type of “spiritual meditation.”

Once that relationship feels real enough, the second exercise involves repeatedly asking the “other” to feel more physically present. This is intended to stimulate the thalamus. The exercises were inspired in large part by research evidence concerning how thinking about “God” in certain ways activates particular parts of the brain. See JWH's writings for the detail.

[Update – 10/9/20: The 2020 edition of Recovery form Parkinson's adds a third core exercise, involving visualizing energy flowing into the body at the back of the neck. It also adds four auxiliary exercises to hasten recovery and brings cognitive behavioral therapy (apart from the two primary exercises), which had been prominent in the 2013 edition, back into the mix as a supplementary tool.]

When Type I and Type II (or Type III, I believe) occur together, and the self-induced pause is properly addressed, the injury issues of Type II PD often resolve themselves. Otherwise, for Type II PD, the treatment includes primarily Yin Tui Na (a simple, hands on, supportive holding therapy). For Type IV, there is a simple five step sequence for turning off biological pause. For those with only type II PD, other therapies, such as Qi Gong and craniosacral therapy, can be helpful as well.

I leave it to the reader to explore in Recovery from Parkinson's and Stuck on Pause the further discussion of Type III and Type IV PD.

Importantly, JWH cautions that for those with the combination of Type I and Type II PD, the self-induced pause should be dealt with first to avoid possible troubling complications.

Once pause stays turned off in a lasting way (a process that may take some time) you enter a phase of temporary “recovery symptoms” as your body repairs the damage done by your time on pause. In character, these symptoms are often the opposite of Parkinson's symptoms (e.g., becoming limp rather than stiff). After this phase your recovery is complete.

Again, see the latest versions of JWH's books Recovery from Parkinson's and Stuck on Pause for the detail. What I provide above is not enough, in itself, to get you started. It lacks important detail and, in any event, comes with no claim of complete accuracy.

You need not be concerned, by the way, that this is all packaged as a DIY treatment. JWH makes the case that it actually works best that way!

Simple enough? Sure, but it's not without challenges. I expect to talk about those on this blog.

Update – 8/7/20: How long does it take to come off pause? A rough answer is days to years, depending in large part on how long you have been on pause.

Update – 9/19/20: Minor revisions made in accordance with the release of the 2020 version of Recovery from Parkinson's.