PD Revelation

A Parkinson's recovery journey

[Updated – 9/26/20]

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

Emotional surrender has been on my mind lately. In Recovery from Parkinson's (2019) Janice Walton-Hadlock (JWH) writes, “As it turns out, an ability to emotionally surrender is a better predictor of recovery than a determination to 'succeed'.” So this would seem to be a pretty important topic!

Let's talk about what emotional surrender, an important phenomenon in various spiritual traditions, might involve in the JWH protocol. First, note that coming off pause certainly qualifies as the most pivotal event in the recovery process. So, given the quotation above, it seems fair to say emotional surrender must be centrally important among the internal processes that ultimately prompt coming off pause.

How does surrender link with turning off pause? Successful surrender clearly requires a strong feeling of safety, the key ingredient in coming off pause. Pause and emotional surrender seem incompatible. Pause includes a kind of wariness, a guardedness (~ the opposite of feeling safe) that surely runs directly counter to surrender. Pause would appear then to stand in the way of emotional surrender, suggesting that if you can accomplish the latter you have likely (and possibly via that very process) eliminated the former.

Read more...

I want to share some inspiring news. Emmy, at Gezond met Parkinson, whose recovery process has centered on the Janice Walton-Hadlock (JWH) approach, let me know she recently visited her neurologist. The neurologist admitted she has recovered, that she is now free of Parkinson's!

Now, we already knew Emmy had recovered, but to get that concession from a neurologist is a rare thing! As JWH has written, when recovered patients return to their neurologists to report their news they are almost always met with dismissals of one sort or another (see, e.g., p. 15 in the currently available chapters of Recovery from Parkinson's). So I would say Emmy has made a little bit of history here! Congratulations Emmy! (Also, this neurologist deserves credit for being open to a possibility generally rejected by the mainstream medical establishment.)

By the way, Emmy is now offering coaching for those with PD. See her website for details. The site is in Dutch but easily translated with Google Translate or the Chrome browser. (Emmy speaks excellent English.)

While I work on a more time consuming post it seems a good time for another inspiring song. This one needs no introduction. If you're following the JWH approach you might find you hear it with new ears.

As I mentioned in the first post on this topic, some symptomatic benefits can result from this process prior to coming off pause. I expect to document more of these benefits as I go along, but am waiting to discuss some of them when it is clear they are definite, lasting changes.

Here I will just report on one small but clear change. About 2.5 to 3 months ago, a patch of seborrheic dermatitis which had lingered on the side of my nose for several years simply disappeared. This may not seem a huge thing, but it's worth noting a couple of points.

First, seborrheic dermatitis accompanies PD so commonly that neurologists often look for it as one of many small signs that can help confirm the PD diagnosis. Second, this minor skin condition had resisted a few go-rounds with prescription corticosteroid creams. It would show only partial improvement, and would come right back every time I stopped such a medication. Its final disappearance came many months after the last use of such a cream. A good sign, I think!

P.S. I've added a significant update to the first post on symptomatic benefits.

To elaborate on one part of the recent post on emotional openness, it matters how you deal with new ideas and emotions. Recall that in Stuck on Pause Janice Walton-Hadlock (JWH) writes, “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.”

So it is of fundamental importance to fully grasp those ideas and to register those emotions on a very palpable, feeling level rather than merely an intellectual level.

The need to feel increasingly safe, for example, is central to the protocol. The point here is that you can't merely acknowledge the rational thought, “I am safe” or “I'm in no danger of dying right now.” To fully grasp this new idea of safety, you have to feel it. You have to actually experience new feelings of safety. The same could be said for related ideas/emotions such as trust, being loved, the experience of letting your guard down, and other ideas and emotions that come into play.

Of course thought may precede feeling. And turning over an idea in your mind may round it out and give it nuance, ultimately fleshing out the feeling.

At any rate, I've been mulling this over a lot lately, as I have a strong sense that if I can grasp these things more fully, really embrace them on a feeling level, my progress will accelerate. This then has become one of my major goals.

But how to do that? I have just a couple of thoughts. First, notice that JWH's “second exercise” is all about enhancing the feeling level. So if, for example, you ask the “other” to hold you, and under those conditions consider that you are feeling safer, or even add something like, “Let me feel the safety you provide,” then you are focusing on palpable sensations, a focus that should help promote a feeling rather than rather than just an idea of safety.

Second, it's going to take some time, revisiting new ideas, repeatedly and from different angles. (There is food for thought in comparing this with views on “insight” in psychoanalytic therapy.) In any event, I try not to be too quick to assume I have fully grasped a new idea/emotion. I try to stay open to new levels and facets of it. And I still have a ways to go! Perhaps the gist is that we want to grasp these things on a “gut” level.

Please email me with any thoughts you may have on this! I'm always trying to build on these ideas.

“I grow silent. Dear soul, you speak.” ~ Rumi

When working the JWH approach... Inspiration –> optimism –> better mood –> feeling better physically –> more optimism and perseverance.

Clearly then we need inspiration, inspiration that nurtures enthusiasm for the things we're doing in the JWH protocol. That might come from reading, music, conversation, or something else. One of our daughters recently introduced me to the music of Nahko and Medicine for the People (thanks L! <3). Full of themes of spiritual connection and growth, it has been a great source of inspiration! If you're working to develop the relationship involved in the dialogue, you'll likely appreciate the content of this song...

I've found many more songs helpful for inspiration and for other purposes in pursuing the JWH method. I'll touch on some of them in future posts.

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.