PD Revelation

A Parkinson's recovery journey

[Updated – 11/24/20]

In two prior posts (here and here) I reported on symptomatic improvements I've experienced while doing the JWH protocol. The first was a substantial reduction in anxiety/fatigue. This has been a major improvement, as the anxiety/fatigue fusion was, for some time, by far my most debilitating PD symptom. Second was the disappearance of a patch of seborrheic dermatitis on the side of my nose. These are improvements in symptoms along the road to coming off pause. [Update – 11/24/20: And I believe they may, themselves, indicate a chipping away at the depth of pause] at which time, you might say, the final, more dramatic phase of recovery begins.

I've waited on reporting further symptomatic improvements, wanting to be sure they were lasting. Also, I don't spend a lot of time thinking about these symptomatic improvements. (That said, as a list they do provide me reassuring evidence that I'm on track, and the anxiety/fatigue reduction gave me unmistakable evidence of the psychological underpinnings of my most troublesome symptom.) The prospect of turning off pause is a bigger deal. But my impression is that people considering the protocol wonder about this sort of thing. So here are several additional symptomatic improvements I've experienced:

  • Diminished tremor. [Conservatively, perhaps 30% less overall.]

  • Improved swallowing. [When taking supplements, I swallow multiple pills much more easily.]

  • Less excessive mucus production.

  • Much less orthostatic hypotension. [This had progressed to become fairly troubling around a year ago. Now it essentially never happens.]

  • Seem to have mellowed a bit in certain interactions with my wife. [I'm told I less often respond with a harsh tone, a habit of which I was often unaware when it happened, but which had developed in the environment I grew up in and was compounded in its effect by the monotone voice common to many with PD.]

Concerning other symptoms of note, mediocre sleep quality and blunted sense of smell may have improved slightly. I've not yet seen any significant reduction in the bradykinesia in my right hand and arm, nor much reduction in some annoying muscle tension arising in my right leg. When any of those improve in significant, lasting ways, or as I experience more dramatic recovery symptoms, I'll report back.

[Updated – 10/5/20]

I'm still early in my reading of the new edition of Recovery from Parkinson's. And I can already tell it will inspire topics for new posts. In the meantime here's an idea for which I've been considering a post for some time.

As I've written previously, for some of us one of the most difficult challenges in following the Janice Walton-Hadlock (JWH) protocol lies in keeping consistently in touch with the dialogue with the “other.” In a prior post, including a number of updates, I offer some ideas that might help in this process. Some of those updates could have been their own posts. One, especially, has proven helpful enough that I think it's worth a new post. That is what might be called the “companionable silence.”

In the updates to that post I described it this way:

Given that the “other” is always with you, hearing your every thought, try clicking into connection with “him” (or “her/them/etc.”) by imagining him located, for instance, vaguely over your shoulder, receptive and listening. See if you can experience a sort of companionable silence. For me this has been one of the most useful techniques of all, allowing me reliably to click into the desired mode, even triggering some of the tingles I feel when asking to feel the “other's” presence. It's a short step from that mode to continued dialoguing with the “other.”

To elaborate, consider this quote from JWH in Recovery from Parkinson's (2020):

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Just a note to let readers know that the full, new 2020 edition of Janice Walton-Hadlock's Recovery from Parkinson's is now available at the Parkinson's Recovery Project website:

http://pdrecovery.org/recovery-from-parkinsons/

I think we have some reading to do! :–)

Thank you Janice!

[Updated: 9/8/20]

If you believe you are on self-induced pause, you are undoubtedly working with the two “new exercises” from Recovery from Parkinson's. As you know, the first is the dialogue with the “other.” [1] The second is the requests for the felt presence of the “other.“ In a prior post I offered some ideas to help in making the dialogue more constant. I have updated that post a number of times with additional ideas. I may soon devote a new post to the technique I call there the “companionable silence” as I have found it particularly helpful.

Here I want to mention some possible ways of deepening the two exercises, especially the second one, and of combining the two exercises.

For the second exercise, JWH first suggests in Recovery from Parkinson's (2019), “A patient could ask the invisible friend to palpably hold him or her, or manifest as some sort of feeling or sensation either inside or on the periphery of the patient’s body.” A few pages later she offers two possible specific requests: “Let me feel your presence” and “Let me feel your joy and love inside of me.” I have used those two from the time I started with the second exercise. And based on JWH's first suggestion, I have also used, “Let me feel you hold me.” (I have also used slight variations on all of those: “Let me feel you here,” “Please hold me,” “Let me feel your embrace,” etc.)

Bearing in mind that the idea behind these requests is to gradually increase our felt sense of safety, I couldn't help wondering if there were ways to deepen their effects, perhaps additions to the requests that might accentuate the feelings they are intended to stimulate. My experience suggests to me there may be.

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As I've mentioned here previously, I've found certain songs helpful in this journey. I've already posted a couple of songs that I find inspiring, that to me speak to the nature of this process. I've also used songs simply to move me, to stir feelings from which I might otherwise be a bit out of touch. I did this more regularly a few months back to try to better open my heart prior to dedicated sessions with the “other.” These days I don't seem to need it quite as much as I seem more readily to well up with tears in response to fairly mild things. Since I am lately experiencing more feelings in my heart, I will probably soon go back to listening to some moving songs to see what heart feelings they may be stirring.

I keep a small list of songs that, for one reason or another, I find particularly moving. One that I've had on that list from the start is “Guadalupe,” written by Tom Russell, performed by Gretchen Peters, a gorgeous song about Our Lady of Guadalupe.

More recently I came upon and another Peters/Russell collaboration, the song “Saint Francis.” For me it is perhaps even more moving. And it has a little added meaning here owing to JWH's comments about St. Francis in Stuck on Pause.

(By the way, please don't conclude I am in any way pushing Christianity. I'm not Christian. Not at all. But I find some images and ideas in some of the more ancient strains of Christianity to be helpful.)

Some info on Saint Francis

See if this song stirs feelings for you, perhaps feelings in your heart! Oh... and have a tissue handy.

Lyrics

written by: (Gretchen Peters/Tom Russell)

Saint Francis walking on the water All his lambs have gone to slaughter All the creatures who receive his grace You can see them all in his haggard face

Saint Francis begging at your doorway You want to let him in but what will the neighbors say And you know you can't go on but you can't give up And he answers you with his begging cup

Saint Francis sitting at your table A cup of tea among the faithful Behind a wall that's made of little lies Much to your surprise you start to cry

By these wounds you will be whole again By these signs you will know You'll feel a stirring in your soul again 'Til sweet amnesia takes a hold

Saint Francis sleeping in the meadow His halo is a raven's shadow He's been sleeping for 800 years In a potter's field full of sparrows' tears And while we sleep and dream of heaven's gates Down here on earth the old man waits

[Updated: 8/12/20; 8/18/20; 8/21/20]

The importance of experiencing feelings in your heart is a recurring theme in Janice Walton-Hadlock's (JWH) writings on PD. She explains that many people with PD have difficulty with this. So it is well worthwhile spending some time nurturing our ability to experience feelings in the heart. More specifically, the feelings take place in the pericardium. Searching the PDFs for Stuck on Pause and Recovery from Parkinson's for “pericardium” will turn up passages that inform most of the comments below.

JWH addresses feelings in the heart from a number of angles: In the dialogue with the other you want to talk from your heart. In general you want to be guided by your heart, live from your heart. (Perhaps more precisely, you want to be guided by the “other” through your heart.) The feeling of safety necessary for coming off pause starts as a feeling in the heart and, on the other side of the coin, speaking from the heart begins to engender that feeling of safety.

For months I struggled to bring about or notice much in the way of feelings in my heart. I did notice that the “lips on the heart” technique described in Stuck on Pause triggered a slight feeling, perhaps like a slight tension, in the area of my heart. Maybe that was actually some resistance to feeling in my heart. Still, even that is a start! It did make it easier to feel the tingles that, for me, seem to signal some success at feeling the presence of the “other.” But I was not feeling the sense of expansion in the heart that JWH describes in number of places.

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Just a note to mention that some posts contain updates. I have indicated this at the top of any post where it applies, and have generally made clear where an update is within the post.

[Updated: 7/30/20; 8/11/20]

A friend and I would like to invite interested readers to a monthly support group to be held via Zoom session or conference call. Our hope is to generate support, information sharing, and inspiration in a small group of like-minded folks interested in the Janice Walton-Hadlock approach to PD. This will be free and leaderless, though my friend and I are glad to handle the logistics. To gauge interest in such a group I invite you to email me through the contact form on my regular website. If we get enough interest we will work out the details through email and schedule the first session. Let me know if you're interested!

Update – 7/30/20: We've had enough response that the group will almost surely be happening. Details will be worked out soon through email.

Update – 8/11/20: I'll incorporate subsequent updates into the pinned post about the support group at the top of the page.

[Updated: 7/22/20; 9/21/20]

Following on the recent post on emotional surrender, let's look a little further at that idea. I hope coming at it from a few different angles will help fill in a picture of how surrender might feel to someone following the Janice Walton-Hadlock (JWH) protocol.

First, here's a helpful article on the benefits of surrender for anyone, including tips for entering into it.

Note Amy Johnson's observation that “control is rooted in fear.” For anyone on pause that gets to the nub, pause involving a perception, on some level, of a risk of imminent death.

Trust becomes a key feeling in the JWH protocol, trust in the comfort of the “other” (or the universe or higher power for which the “other” may be a representative), trust that the “other” will not mislead you and is keeping you safe.

Johnson submits that “Surrender = Complete acceptance of what is + Faith that all is well, even without my input.”

Note how similar this is to JWH's statement quoted in the prior post on surrender: “The 'surrender' was simply the admission that, no matter what, even if they did nothing in self-defense or self-maintenance, they were actually safe: safe enough to go back to living via the heart.”

The Johnson article provides several worthwhile ideas for helping to enable the experience of surrender. I especially like the imagery of the boat, dropping the oars, and going with the downstream flow. Note the suggestion that surrender means “to stop fighting. Stop fighting with yourself. Stop fighting the universe and the natural flow of things. Stop resisting and pushing against reality.”

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Well worth a listen...