PD Revelation

A Parkinson's recovery journey

This will likely be the first of two or more posts on this topic.

Here I treat the material in Janice Walton-Hadlock's (JWH) Stuck on Pause (SOP, 2017) as fully current. That might not be quite correct, as judging by the progression to the current, available portion of the new edition of Recovery from Parkinson's (RFP, 2019), JWH seems to be refining her ideas. On the topic of this post, though, my impression is that it's not far from correct. We may know more when the new edition of RFP becomes fully available, probably this summer.

This is a big key: JWH says, “Talking to a distant God who is unknown, emotionally, will not do the trick.” (RFP) As well, “Merely talking, in a mechanical manner, such as rote prayer, is not going to change anything. You will need to talk from the heart. Literally.” (SOP)

My own experience confirms that talking in a mechanical way or merely on an intellectual level will not be especially helpful. This is about opening up your heart. It needs to be as emotionally real as possible. You can't just go through the motions. In other words, this is no joke. My strong sense is that anyone wanting to come off pause will, in all likelihood, need to experience emotional rawness and do some hard emotional work.

I have had to re-learn this lesson on multiple occasions. I can too easily slip into discussing issues with the “other” on a not-so-heartfelt level. When I do, it usually feels as though my progress slows. I may experience an increase in symptoms or simply feel I'm not getting anywhere. Once I'm able to return to emotional openness symptoms recede and I have the distinct feeling progress has once again commenced.

A good place to get started with talking from the heart is the “lips on the heart” technique described in SOP. This visualization technique prompts you literally to engage your heart in your communication. This seems to be foreign to many PD people, and the technique gives it a jumpstart. JWH says you can set the technique aside once you've got the feeling, but I find I return to it fairly often to keep in touch with the feeling.

It may be difficult to have a heartfelt conversation at all times. My impression is that there is some value in the dialogue even when the content is more trivial. But make efforts toward emotional openness and talking from the heart whenever feasible.

JWH writes in SOP:

It is perfectly possible that, once you develop a trusting relationship with God or your “talking partner,” you will spontaneously find yourself in a deeply connected, personal, honest and even intimate, heart-felt conversation with whomever you have been talking to....

It is possible that, during this conversation, you will feel even more safe ...

When you do feel these new and/or deeper level thoughts and emotions, and feel the love behind them, actually feel them rather than mentally assessing your emotions and behaviors, you will very likely find yourself turning off pause.

That reference to actually feeling those thoughts and emotions seems extremely important. I'll get into that, and soon the idea of emotional surrender in upcoming posts.

“I'll be the Earth to ground you From the chaos all around I'll be the home you return to I can be your middle ground And I will serve as a reminder If you jump you will not fall Go on and spread those wings of reason We are water after all” ~ Nahko and Medicine for the People

This Hidden Brain podcast episode is quite relevant. I found it both fascinating and inspiring, a reminder that these things do take time but can produce remarkable results.

Secret Friends: Tapping Into The Power Of Imagination

[Updated: 5/31/20; 6/26/20; 6/29/20; 7/20/20; 9/29/20]

I recall well some of the early difficulties I had maintaining the dialogue with the “other” and feeling “his” presence. Here I'll focus on the former. I still struggle in this area, so I can't say any of these tips are sure to make it a breeze for you. But they are things I have found helpful. They come from my own brainstorming, Janice Walton-Hadlock's writing, and ideas others have shared with me. I will add to these as additional ideas come my way. So check back.

Remembering to engage in the dialogue

  • Increase activities that don't distract too much from engaging in the dialogue, such as walking, listening to some non-distracting music, sitting quietly, light workouts, light stretching/yoga, artistic activities, gardening.

  • Likewise, reduce time in activities that do distract from it, such as surfing the internet or other “screen time.”

  • When you do engage in distracting activities, try sharing them with the “other,” so that you remain together, viewing and discussing what you're experiencing. Recognize that the “other” is your constant companion. Naturally you'd want to share what you're doing with your constant companion.

  • [Updated – 6/29/20] Designate certain times each day for the dialogue. You can of course engage in dedicated sessions devoted to it. But one way to begin to extend the dialogue into the rest of the day is by also making sure to engage in it at such times as prior to falling asleep at night, prior to getting out of bed in the morning, while showering, etc. After a few repetitions it may become habitual. From there, try to extend the dialogue into as much of the rest of your time as possible.

  • Try designating various cues as reminders to return to the dialogue.

    • On a walk, tell yourself that every tree (or every window, or...?) you see is a reminder to engage in the dialogue.

    • Use your symptoms as reminders to return to the dialogue.

    • Try setting a timer to go off at regular intervals as reminders to reengage with the dialogue. Update – 7/20/20: A more effective alternative may be to use the timer to repeatedly designate short segments of time during which you commit to staying in the dialogue (or perhaps simply in the presence of the “other” via “companionable silence”... see below.) When the timer sounds you reset it and recommit to the next interval. I've found this effective when browsing the internet, a reminder to share what I'm seeing with the “other.”

  • Consider thinking of it as rude to ignore the “other” (who is always waiting lovingly, receptively for what you have to say) in favor of your default dialogue.

Read more...

This post pertains primarily to the first of the “new exercises,” the dialogue with the “other.” You may be wondering what you're supposed to talk about. Janice Walton-Hadlock (JWH) provides the essential guidance (Search PDFs for the quotes given. Recovery from Parkinson's, 2019 = RFP, Stuck on Pause, 2017 = SOP):

“Treat all thoughts and spoken words throughout the day as if they were part of a silent two-way conversation with a 'friend': a deceased beloved friend or relative, a 'higher power,' some saint or sage, or even a beloved, deceased pet.” (RFP)

So the idea is to turn everything you think about, everything you might otherwise talk to yourself about, into conversation with the “other.”

“Every person’s experience in turning off pause has been different, other than the fact that they were talking to God and really being open about some things that they’d never been open about before.” (SOP)

So... emotional openness. This is key, so much so that I'll write a whole post on it soon. Suffice it to say for now that you want to talk from the heart. (See SOP.) In my view, that tends to shape what you talk about. That is, if you are talking from the heart, you're probably talking about things that tend toward important emotional issues for you. Still, whatever is going through your mind should be directed to the “other.” For many of us this is much easier said than done. Nevertheless, that is the goal.

In sum, whatever would be going through your mind otherwise, whatever the internal monologue or dialogue, it should now become talking to the “other.” I've kept this to the gist, but let me know if it seems I've left out anything important.

[Updated – 6/15/20]

Before returning to fundamentals I want to dovetail on the previous post by saying a little more about immediate or at least short-term benefits of working the Janice Walton-Hadlock (JWH) protocol. While the goal over time is of course to come off pause and completely recover from PD, there are shorter-term benefits along the road to that destination.

The first such benefit I noticed some months ago was that I generally “felt better” after a good session of dialogue. I'm not sure I could, at the time, put my finger on the exact effect. But it was probably some combination of reduced tremor and increased calm and energy.

Recently, I believe I've identified more precisely what is going on. In my case fatigue has been my worst PD symptom. I've been well aware of anxiety too, but hadn't fully connected the two. A few weeks ago, though, following some unusual, problematic events, I found myself experiencing a pronounced rise in anxiety over a couple of days. (Ironically, this did not seem to be a reaction to concerns about the coronavirus, media coverage of which was just beginning to take off at that time. No doubt that didn't help though.)

I went into a session of dialogue with the “other” and, figuring I needed some self-analysis to determine the real cause of the anxiety, asked him what I should talk about. A memory of a tendency arising in interaction with my brother during my adolescence came to mind. I talked through how this tendency surely arose out of a fear, perhaps at base a fear of death (the key emotional element involved in pause). I was able to see how the fear was irrational, that the situation involved did not in fact present any risk of death. Immediately I felt a marked decrease in anxiety which remained after the session. Contemporary events in my life had likely stirred feelings going back to those adolescent circumstances. Unexpectedly, in the weeks since that session I have had significantly less fatigue, my best stretch of decent energy days in a year or more. It seems the anxiety and fatigue are clearly linked.

One day midway through that stretch the fatigue/anxiety returned with some intensity. This time I do believe it was triggered by media coverage of the pandemic. I was again able to move past it with a good session. But it reminded me that the fatigue has a very palpable, anxious quality about it. I described it to my wife as a kind of “crackling fatigue,” the crackling being the anxiety with which the fatigue seems to be laced.

Now that I've clarified the fatigue/anxiety connection for myself, I expect to be able to address fatigue more effectively going forward! If I'm right about the connection, then this is one example of how the JWH approach can have nice symptomatic benefits prior to coming off pause.

I'll report on other symptomatic improvements as it becomes clearer they are lasting changes.

Update – 6/15/20:

Read more...

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; 1/10/25 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 involving JWH's work per se 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, cases that came up prominently were this one, this one, and this one in the medical literature. 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 God or a somewhat God-like figure. Another case also in the medical literature, is 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.

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