Category: Recovery

NOVEMBER QUICK DIARY

Sunday 3 – RLS was always everywhere, any time. What has occurred recently is only in my left leg (mostly thigh) between midnight and 07:00 and only in the recliner.

Monday – the shrink wrap that usually binds me, is off.

Tuesday – better movement than usual, not quite as loose as yesterday.

Wednesday – the US election made of me a trembling cripple.

Thursday – I’ve stopped trembling while still moving very slowly, but am resolved anew to confront the foe and vanquish sit.

Friday – For the first time in at least four years I was able to regularly and consistently pick up my feet while walking, indoors and out.

Saturday – Feet continued into morning (having slept hardly at all) then I took a half hour nap and woke tight and trembly. Got feet back pacing the hall for a half hour, but remained with awkward fingers and tremors.

Sunday – Flashes of liberty tucked between rafts of immobility.

Monday 11 – I am not a victim, I am a participant. And a creator. 

Tuesday – Turns out I’m averaging 2500 steps a day on my walks.

Wednesday – RLS seems to have returned, but only evenings in the recliner.

Thursday – Friend is more and more a part of my hourly experience.

Friday – Orvieto’s glorious Friday evening parade.

Saturday – Morning walk very difficult, evening walk almost normal. And so it goes. Had a spontaneous and strong turning off of pause just before lunch (I think).

Sunday – Sleepy all day.

Monday 18 – Stumbly legs, fingers more agile than normal, a little dull-witted but clear on the inside.

Tuesday – Arms tight and uncomfortable, walking quite good.

Wednesday – Walking very good, arms relaxed.

Thursday – Walking almost impossible, sleeping a lot, day and night.

Friday – Morning walk very ragged, evening good and almost smooth at times. Evening voice strong and clear.

Saturday – Repeat Friday. 

Sunday – Great disappointment; RLS has returned with a vengeance. Wish I knew why it was gone for so long. (turns out the bad stuff only lasted for a day)

Monday 25 – Gone for several weeks now; excessive nasal discharge after eating or sneezing (for years). Don’t know if that was typical of PD, but in any case, I hope it stays gone.

Tuesday – Sleeping a lot. Was complimented on an improved stride today, several times.

Wednesday – The stride tightened, but only Roman was around to see it.

Thursday – Made rare for several weeks; my body tightening into a plank (board of wood) involuntarily after a nap.

Friday – Momentum. Don’t interrupt.

Saturday – “I’m doing this to myself!” makes me stronger.

Sunday 1 December – Callouses hurt so bad I can barely walk.

TUESDAY 29 OCTOBER

Unable to find much coherence in what I’ve experienced in the past few weeks, so some bullet points will suffice.

• Walking is random in quality, good walks followed by stumbles a few hours later.
• After several months of sleeping in the recliner, I started sleeping in bed again at the top of October, and quite comfortably, too. Since the first ten days of that, it’s been about half and half.
• Gone symptoms went from 90% gone to 75% gone (estimates, not science). I have no idea why.
• When the pericardium is energized, movement is more enjoyable and often freer and more fluid.
• A new gone symptom is a full body jerk in reaction to a sharp sound when awake or asleep; half asleep the jerk still happens but not as violently.
• Swallow reflex seems to be reasserting itself as incidents of rampant drool have been waning.
• Getting out of bed is slowly getting easier.
• What I tell my brain when it wants to over-react – Freak thee not out, all is as it should be. I love you.
• Other stuff, too, but typing remains difficult so I will stop here.

Thanks for reading.

TUESDAY 2 JULY

The improvements reported last time – easy swallowing, pee retention, limp legs, snap jaw gone, sharp pains reduced – continue to improve. Add to those dramatic reduction of Restless Leg Syndrome (from daily to once or twice a week) and a morning last week when my perception shifted to be heart-based for several hours (it was awesome), and there is reason for hope. On the flip side my voice is barely audible, movement after sleep is almost totally inhibited without help from a caregiver, and typing and mousing are extremely difficult at all times. General discomfort flips between severe to practically none in an instant and without warning.

The journey continues… very slowly indeed but better this than sliding into torpor.

Friday 19 April

Tuesday of this week, walking in the garage was almost normal for 20-30 meters at a time. Wednesday night I slept straight through after only two restarts, and turned freely and spontaneously in bed. Thursday I felt released of some burden. This morning my session on the rower was ninety percent perfect. And so it has been for the last few weeks, one good step ahead per day, but not yet anything that repeats itself immediately or seems to build on its previous occurrence.

I’m also involved with re-mounting my play, Colloquia, which soaks up my limited time on the computer, so that accounts for my recent absence from this blog. But if you see a fund raising notice somewhere, that’s me struggling to type, so please respond if you’re able and/or pass it on. The when, where, and how of production will be announced later in April.

[from Recovering from Parkinson’s by Janice Hadlock]

“Some people turn off self-induced pause gradually, some even going two steps forward, one step back, for months or years. They might find at first that they have odd moments, now and then, during which they feel different – not on pause. In these moments, the mind is more relaxed and movement in some parts of the body feels more fluid. If a person keeps up or intensifies his mental self-therapy, these moments gradually increase in frequency and duration. Eventually, these people find that they are using self-induced pause mode only once in a while, usually when they are concerned about something. The people who recover gradually, who turn off pause in fits and starts instead of instantly, might have a harder time believing, at first, that something is changing for the better. Even when their use of self-induced pause mode occurs very infrequently, maybe once a week for a few hours, they tend to be terrified, each time, that their Parkinson’s has returned as strong as ever. Even so, they can eventually recover fully and have no more relapses.”

Monday 18 March

Typing was good, but I didn’t know what to write. This past week walking has been good, and recovered quickly after falling apart on Saturday, but typing is a disaster. So, this is it! Check back in a week or two.

MONDAY 12 FEBRUARY

It’s a longish quote, but it generally describes my current situation with astonishing accuracy (“generally” because, for instance, there are no detested cousins-in-law, but the opinions of others can act as triggers). I have a lot to say but my typing ain’t up to it right now, however before I paste the quote, let me say with absolute sincerity that, annoying symptoms notwithstanding, in terms of personal growth and insight, Parkinson’s (coupled with the Parkinson’s Recovery Project) is the best thing that has ever happened to me. So there, I’ve said it, now the quote from Stuck on Pause by Janice Hadlock.

A person who is slowly but steadily recovering from the habit of triggering self-induced pause might be astonished by the flip-flops his body goes through before he is completely recovered.

Imagine this scenario: A person feels unusually relaxed one morning after an inspirational reading of Marcus Aurelius, the deeply spiritual emperor/ philosopher of ancient Rome. He has no symptoms of pause. He thinks to himself how lately, he has been free from pause symptoms for an increasing number of minutes every day. Due to his recent ability to relax more and more often, he assumes that he is truly making progress. He says to himself that, surely, his pause-related symptoms are diminishing. He tells himself, incorrectly, that the recent episodes of milder than usual symptoms are proof that he is recovering. He is inwardly delighted: everyone will soon notice how much better he is doing. What praise shall soon pour in!

But then, looking out the window, he sees his detested, gloomy cousin-in-law unexpectedly coming up the walkway to the house. He knows that this critical and negative person will be looking for any sign that the Parkinson’s symptoms are not going away. Instantly, the person’s rigidity and tremor reappear and with seemingly heightened power. Dismayed, he concludes that he has made no progress at all! He is getting worse, not better! His thoughts of progress were wrong: he has been deluding himself. He is not recovering, after all. He is worse!

This incorrect negative conclusion can be utterly paralyzing. This paralysis can increase the person’s conviction that he is doomed, and this thought further enhances his need to use pause mode – his accustomed mode for emotional self-protection.

In fact, the person’s healthy, I’m safe pathways might be steadily growing stronger. However, all the links to the brain’s pause behaviors are still there, inside the brain. All of them. As soon as a person again uses the brain pathways associated with pause mode, all the old links might be activated. If you haven’t ridden your bicycle in a long while, you might no longer have your strong bike riding muscles, and it might feel a little strange at first to be back on the bike again, but you will have one hundred percent of the brain information and linkages necessary to ride that bicycle. When you climb on the bike and start pedaling, all the brain linkages associated with riding a bicycle will kick in. All of them.

Just like all the old skills for riding a bicycle will be activated when you climb on a bike, no matter how long it’s been since the last bike ride, when a person’s gotten good at using pause mode, all the old brain skills for riding the “pause bike” will always still be there, patiently waiting to be activated. When you re-activate self-induced pause, after a break of a few minutes, hours, or weeks, all the pause-based brain linkages might become fully activated.

My patients have all assumed that recovering means having fewer symptoms in a somewhat linear fashion: symptoms should steadily decrease in frequency and strength, as a proof of recovery. In the early days of the Parkinson’s Recovery Project, I assumed this as well. I was thinking of Parkinson’s as an affliction like the flu or a torn ligament; remove or fix the cause, and the symptoms will slowly melt away. This understanding was not correct, because Parkinson’s disease symptoms are not the real problem. The symptoms are a side effect of using pause mode. A person’s varying intensities of symptoms can be related to the intensities of his pause-activating thoughts, at any given time

TUESDAY 9 JANUARY

To provide context for this series of notes, a quote from Stuck on Pause by JJW Hadlock. “For many people who’ve grown up in western culture, learning to stay in tune with subtle changes in heart feeling is a challenge, at first. For many people who are using pause, it is nearly impossible. Therefore, I do not ask patients on pause to listen to their hearts. Instead, I ask them to talk to a Friend. Talking to and learning to love and trust the Friend who is always there, always listening, and always answering with truth is much, much easier. The result is the same: talking to the Friend helps make the heart more accessible and feel-able, and vice versa: learning to keep the heart as open as possible allows the most intimate sense of connection with a Friend. And they both stimulate the striatum and thus restore the Du channel flow through the center of the brain, which allows for the release of midbrain dopamine, which makes a person feel safe, and which is the immediate goal in working to turn off pause mode. So, talk to your Friend!”

Friday 5 January

Friend(s) have taken me into their care several times tonight. A move that seemed impossible I turned over to them and instantly it was completed and I could feel the energetic difference in my body and in the pericardium. Very inspiring.

Saturday 6 January

A vivid and long “visitation” dream of Robin M. (my fifteen years flatmate in Manhattan), heart wide open the whole time. Perhaps a new Friend?

Sunday 7 January

Waiting for eyes to adjust to dark before crawling onto bed, stood up using core strength only (look, Ma, no hands!) Tried to repeat, couldn’t, but did several iterations of slappy-clappy rhythmic patterns. Tried repeating those later and couldn’t. Complex moves are easier, though, and fun to figure out. 

Monday 8 January

Early morning movement at home was looser than usual, and quicker. Then we went visiting to a beautiful small castle with an astonishing view of Orvieto and I reverted to cripple mode, as if the change of venue confused my brain. But on the way home it became obvious that I’d contracted an intestinal virus and thus proceeded the rest of my day. By bedtime things had settled down, and I was easily able to repeat the rhythmic sequences. Lots of communication with my new Friend, always with the effect of making a challenge easier. Typing, by the way, is pretty good.

THURSDAY 7 DECEMBER

T ypding stills usckss. But forging on…

I use walking as a sort of benchmark for state of symptoms. These are tallies of walking events between November 5 and December 6:

• Exceptionally good 21
• Moderately good 24
• Moderately bad 12
• Exceptionally bad 6

The evening walk on the sagrato, December 3, was spectacular; fluid, relaxed, largely automatic, and for more than a kilometer. The next few days the walks were good, but I was unable to match the walk on Sunday evening. However, a persistent PD symptom is limited ability to turn the head from side to side. That same evening, head turns gained 20 degrees each side, and that new flexibility has sustained since then without exception. 

Pause was off Monday morning when I awoke, and I made a conscious decision not to crawl back into that spider hole. Pause has stayed off.

I am working on replacing a mental habit of regret with one of gratitude.

Friend says as I’ve stayed off pause for several days, now muscles and nerves have to catch up.

I’m taking my metaphorical arms down and running in towards life.

MERRY EVERYTHING!

Rather than repetitive daily logs, I’m gonna just cut to the chase in my report for October… 

Wednesday 1 November

Morning on sacrato, four laps pretty good, full program on rower, also pretty good. Evening in the garage, the best walking I’ve done in years; no dragging or shuffling, good strides, good posture about half the time, arms relaxed if not swinging. Seven laps without degrading at the ends. Otherwise, periods at home of full body tremoring, full body calm. Slept well last night, 7 hours in bed and without pause. Typing awkward. No RLS.

Thursday 2 November

Using yesterday evening’s walk as the Gold Standard (at 90%) this morning’s was 75% and this evening at 80%. I’m thrilled. The pattern until about a month ago has been — increasingly good movement, a crash for a week or two, then a crawl back up, and repeat. The past month has set a new pattern where the “good” periods have been longer and stronger, and the “bad” periods have been milder and shorter. Sleep last night was interrupted once but I was able to get out of bed without real difficulty. Typing awkward. No RLS. 

October 5, 2023

This exactly describes my experiences – there is nothing to add at the moment… [from Stuck on Pause by Janice Hadlock]

The progression of recovery from self-induced pause 

After some period – it might be hours, it might be years – of talking to one’s invisible, loving Friend, one starts to feel as if the Friend is actually listening. The person who is using pause mode but talking constantly to his Friend will eventually experience the awareness that “I am not alone!” This is a somatic feeling – a physical sense of being connected to someone else. This feeling further stimulates the thalamus and striatum and creates a sense of being safe.

Immediately following this sense of being safe, a person might also feel physically lighter, due to the release of dopamine in the midbrain. His movements might be smoother. If he is tremoring, the tremor might decrease significantly. For a moment or two, or a day or two, or for some period of time – until the next wave of negative thoughts arrive – this person will be using a Friend-activated, “I am safe” set of brain grooves: grooves that drive parasympathetic mode. These are very different grooves, or pathways, than the ones that direct self-induced pause. But when the next wave of negative thoughts occurs, the brain can easily slide back into the old familiar habit groove that drives all the physiological symptoms of pause.

During the first stunning moments of feeling physically lighter and relaxed, a person might think he has switched off pause for good. After all, when a person uses biological pause, a genuine neurological response to the possibility of imminent death, when pause turns off, it turns off for good…or at least until the next time the person is at genuine risk of dying. But self-induced pause is a condition sustained by a brain habit not by an actual, biological near-death situation. The habit might have started with a command to not feel pain. But there was never any actual physiological condition of imminent death. Neurologically, it’s as if the person told his brain to pretend to be dying, to feel as if he were dying. And the brain obeyed and gradually became very, very good at it.

And here’s the main point of this chapter: even if a person experiences some moments, or whole weekends, of lightness and joy, and it feels as if he is no longer using pause mode…those habit-grooves in the brain that inhibit the release of dopamine, cause tremor, and generate risk-based thoughts associated with pause mode are still there.

The brain loves habit. The brain especially loves habits that feed the ego and the sense of self-importance and power. The ego-associated part of the brain likes using those pause-mode grooves. Also, the brain resists change. A person might begin to establish a new, non-pause route for the currents in the brain in response to feeling safe. But at first, the pause grooves are deeper and smoother than the new, narrow groove of healthy neurological behavior. This is how the brain “resists” change. At the first sign of familiar, negative, pause-sustaining thoughts, the brain will happily revert back to its comfort zone. It will use the wide, well-developed electrical pathways of the old habit: the paths of least resistance.

When this happens, the person who thought he had switched off pause for good is baffled: “Darn! I thought I was recovering!”

He is recovering, sort of. He’s made the first, shy foray into using thoughts that don’t support pause mode. However…the old, well-established brain grooves for self-induced pause still exist and they are easier to use than the new ones.

The preceding sentence might be the most important one for understanding why recovery can appear to be “two steps forward and one, or maybe two or three, steps back.”

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