By the looks of it, and by my feeling, this blog has come to its end. For more than three months, I have not felt the slightest hint of any symptoms. From the understanding I have gleaned reading what http://www.pdrecovery.org has published, I may assume that I am fully recovered.

For guidance towards recovery, the posts beginning at #24 in November ’23 should have enough information to embark on the path to recovery.

For musicians, particularly keyboard players, the early posts will contain useful hints on how to reduce tremors and restore lost abilities due to these tremors, as part of the way towards recovery.

For anyone interested in getting an idea what a person who discovers to have Parkinson’s Disorder may go through, the whole blog may give a glimpse into one individual’s experience. My experience may give hope for some. This was my plan from the beginning and inspired me to create the whole website.

John Feeney “stumbled on my blog posts” recently and shared the link to his experience with Parkinson Recovery with me. Considering his professional background in psychology, his blog might be giving more clear insight into the method that helped me. His blog began in 2020, after he started Dr. Janice Hadlock’s approach in 2019. Therefore there is more clarity compared to my blog, because all of it refers to the available information of Dr. Hadlock’s PD Recovery project http://www.pdrecovery.org. My blog also started in 2020, but I only read Dr. Hadlocks publications in November 2023. Although many of the “methods” I applied were helpful to deal with the symptoms, the final step helped me to recover after reading Dr. Hadlock’s publications. I made the necessary adjustments and I credit the fast recovery in part to the work I did during the years leading up to last November.

Once I applied Dr. Hadlock’s method, the recovery was immediate and so far I haven’t had any hint of relapse. I keep maintaining my dialogue with my Friend. On John’s blog, challenges with keeping up the dialogue are also addressed, as are many other aspects. For a broader picture of how the recovery process can develop or evolve, I highly recommend visiting his website and Blog.

https://pdrevelation.writeas.com/introduction-read-first

Most Likely (I hope) this will conclude my blogging about Parkinson. Up to #24, I posted whatever I felt was relevant to move towards recovery of Parkinson’s. After reading Dr. Janice Hadlock’s books (available for free to download at https://pdrecovery.org/) I got a much clearer understanding about this condition. I can only recommend anyone interested in trying to find recovery from Parkinson’s to read her books (best from beginning to the end). I realize that I am not just “done” with PD. I will have to keep cultivating my relationship with my “Invisible Friend” for the rest of my life. This is no hardship at all. It is actually very serene and quite amusing at times.

Neurotheology is a new discipline that will, as it evolves, be able to give us answers to many questions we might have wrestled with. Some answers I just recently have already found. I have written in the last Parkinson’s blogs how I learned from Dr. Janice Hadlock’s books to understand the primary cause of my type of Parkinson’s and managed to recover from it. An important factor is to be able to establish a dialogue with an “invisible friend” (rather than a monologue of compulsive rants). Dr. Hadlock emphasizes that it should be an invisible, not an imaginary friend. She also strongly recommends that one should not choose god to be this friend. Why, becomes clear from the research described below. My ten cents worth to this distinction is that god, as I understand it, is visible everywhere anyway. Once I managed to follow her advice, I was able to “flip the switch” with the result that the last and persistent remaining Parkinson symptoms disappeared instantly (details in the most recent Parkinson’s blog).  

This Reflection should explain why some readers of previous reflections and musings occasionally scratched their heads, asking themselves how can one come to such conclusions, or be so cynical? Reading Dr. Janice Hadlock’s books, in particular Recovering from Parkinson’s and Stuck on Pause helped me not only to recover from Parkinson’s and switching off Pause, but also to understand my troubled “relationship” with the concept of a god. Rather than giving my own spin, I will paste what gives a proper neurological explanation of where in the brain the god concept can “reside” and what this means to our relationship with a god or religion:

Here begins the quote copied from the book Stuck on Pause

What happens in the brain when conversing with a Friend? From p. 62-65 in Stuck On Pause by Dr. Janice Hadlock, available for free to download at https://pdrecovery.org/

“In the early years of the 21st century, medical researchers in the field of neurotheology saw unexpected brain responses in people who were told to think about god during their brain scans. Different areas of the brain showed increased activity in different people. What type of god a person had determined which brain area(s) showed increased activity. 20)

For example, if a person’s god is a critical or vengeful god, then thinking about god brings about increased activity in the amygdala (the fear and rage centers on the left and right sides of the brain).

If a person’s god is presumed to be knowable through word-based study such as memorizing or quoting scriptures, then thinking about god increases activity in certain word-driven brain zones, such as the Broca’a area on the left side of the brain.

If a person’s god is feel-able and/or something one can physically resonate with, including causing the sensation of expansion in the heart/ pericardium, then thinking about god increases activity in the brain’s thalamus, tucked inside the striatum. The thalamus processes somatic feelings (awareness of sensations inside the body) and regulates how and where we sense that we physically exist.

If a person’s god is someone or something with whom the person can enjoy loving, mutual, thought- and/or word-based communication, then thinking of god increases activity in the brain’s striatum. 21)

The neurotheology research project described in How God Changes Your Brain, cited below, started out as a search for where the idea of god was located in the brain. The discovery that god wasn’t located in one place in the brain, but that different types of god activated different locations was actually more intriguing than just finding a brain location for god. 

It appears that word-based communication with an unseen anyone, remembered or fictional, who is unconditionally loving, will have the same benefit to the striatum. This brings us to the subject of the new, twenty-first century understanding of the benefits of a parasocial relationship.”

20) How God Changes Your Brain, Andrew Newberg, M.D., Ballantine Books, 2010, Chapter 3. Some of his other books are Why We Believe What We Believe, Words Can Change Your Brain, Why God Won’t Go Away, and The Metaphysical Mind: Probing the Biology of Philosophical Thought.

21) For an example of further confirmation of the relationship between loving, word-based communication and the striatum, research done in 2019 used brain scans to show which brain areas are activated in children when they are being read to, as opposed to when children use computers or other “screen” devices for self-amusement. While books are read out loud to children – a type of loving, word-based communication, the children’s brains’ striatums become highly activated. This finding is from a study done by the Reading and Literacy Discovery Center of Cincinnati’s Children’s Hospital. “This is your child’s brain on books: Scans show benefit of reading vs. screen time”; CNN Health, Sandee LaMotte; Jan 16, 2020; http://www.cnn.com;2020/01016/health/child-brain- readubg-book-wellness/index.html .

Here ends the copied quote

The understanding I gleaned from reading about this research also gave me some insight into how a difference may be experienced between toxic and healing religion. When the fear and rage centers on the left and right sides of the brain are activated, the teaching or relationship may become toxic. When the thinking about god increases activity in the brain’s thalamus, tucked inside the striatum, the teaching or relationship can be healing. 

In my Theological Musings which also contain critical reflections and cynical rants it can be easy to tell if I talk about the toxic version or the healing relation. At least it is now clear for me. With this new shift, my future contributions will very likely become more differentiated – hopefully for the better. 

OCD and being Stuck on Pause (2023-11-12)

I now finished reading Stuck On Pause  https://pdrecovery.org/stuck-on-pause/

Unlike with post # 24 about Recovery from Parkinson’s, I did write post # 26 before I finished this book. Stuck on Pause repeats much of what is said in Recovery from Parkinson’s. While there are still many references to PD, it addresses a wider audience in a more compressed form (about 170 pages less). 

I found this book especially helpful for people dealing with OCD (negative circular thinking). The techniques to deal with OCD are very helpful to get off the internal Hamster Wheel. After having presented all the necessary theory, Dr. Hadlock explains why she repeats herself often throughout the book. She observed that many people “don’t get it” the first time round, but eventually get it after she rephrased the same instructions and explanations many times. Because of this, she does no longer talk about it, but just tells people to read her books. 

A few pages before finishing Stuck on Pause I realized how much I would have missed, if I would not have read it to the end. In my case, OCD was a major contributor to remain stuck on pause and therefore manifest Parkinson’s symptoms. In my previous post I mentioned how something has clicked and that I got my energy back. Throughout Stuck on Pause Dr. Madlock emphasizes the importance of integrating the practice of “Duologue” with the “Friend” all and every day. So far (and I don’t see why it should ever end) I find this to be a lot of fun and creates many laughs.

I am emphasizing reading the whole thing, because I can see in the statistics how few people actually read my posts and musings. And I suspect that like with the videos on my YouTube channel, the majority clicks off after about 10 seconds. Maybe 10% listen to the end, while the average listening time is between 40 and 60 seconds. Reading a complete post or listening to a complete recording seems to be quite outlandish. So if you managed to read to this point, let me know by clicking a Like. Thank you. 

PS. I now (2023-11-14) have completed a whole week of walking an average of 6 km per day without any signs of fatigue.

Here is the link to the website which has all the information that helped me switch off Pause and with it Parkinson’s.

Parkinson’s Recovery Project

(If you haven’t yet, start reading at #24)

I took to heart what Dr. Hadlock writes about the importance of having an “Invisible Friend” throughout the book Recovery from Parkinson. After also reading Stuck on Pause, particularly chapter five which is fully dedicated to this topic, I managed an unexpected breakthrough. Considering that the causes for my PD type 1 go back more than 6 decades, I expected a long haul ahead of me (and I expect to keep on working toward a full recovery and to maintain it. Dr. Hadlock repeatedly emphasizes the importance of having dialogues with the invisible friend. While it made perfect sense to me, I had no clue how to get this going. But two days ago, I gave it a name. Yesterday I had my first “conversation”. Today I was chatting along with my friend. It actually makes me laugh!

For those who have not read the earlier posts, I mention again that while most of the PD symptoms had disappeared, the EIS (energy intolerance syndrome) clung on and got worse. Six days ago I was exhausted (as usual), when I walked home 5 blocks uphill from downtown. That is ½  km with an altitude difference of about 60 m. If I would do longer walks, I was often toast for the next day or two. Yesterday, I walked non stop for 6 km managing 150 m altitude difference. Today I walked 8 km with three little chats on the way. After a short nap, I played the piano for three hours. Usually I need a break after 40-60 minutes. It seems that something got unstuck. Of course, I will keep on with it. 

These chats also stop those mental “hamster wheels” in my head dead in their tracks far more effectively than the SSRIs did, when I first started taking them (I went off them long ago).

Needless to say, I can only recommend reading Dr. Hadlock’s books, which are all available for free to download from the website www.pdrecovery.org . Dr. Hadlock not only tells what you have to do, she also explains clearly why, with all the available and necessary footnotes and academic sources. Also people without Parkinson’s can glean many ideas for their own health concerns. 

P.S. The invisible Friend may be compared to the spirit animal of the indigenous cultures in North America. More on this can be read in Stuck On Pause Chapter six.

This is an update I sent to Brett Ellis, VP and head of product development at Mindful Meds

Here is an update to my micro dosing approach with Mindful Meds https://mindfulmeds.io/. In August I took a break of one month from micro dosing. Then I tried for 4 weeks the schedule

Monday 1 Mikro, Thursday 1 Connect 

In the off days I experimented with the supplements, taking the suggested 2 capsules/day either alternating or Lion’s Mane Tuesday and Wednesday and Maca root Friday to Sunday. 

I was not able to feel or sense any difference, so I doubled the doses to the suggested 4 capsules/day. The result was quite intense, but pretty well the opposite of what it should be in the description. Also I was pretty much “useless” on these days, no energy, no focus etc. So I stopped taking them. 

Last week I read the book Recovery from Parkinson by Dr Madlock. www.pdrecovery.org

Based on that book I have a combination of type 1 and type 2 Parkinson’s Disorder (PD).

What is crucial for recovery is that type 1 is cleared first. This clearing is to be done on a mental level only, because PD 1 is basically induced by a mental “decision”. Only when PD 1 is cleared, can one treat PD 2, which is caused by blockages from physical trauma. 

To use Dopamine enhancing or producing methods, regardless if they are based on allopathic or natural remedies including Qi Gong or acupuncture, is an absolute no go. Fortunately, psilocybin is not a dopamine enhancer, but Lion’s Mane and Maca Root are. This explains my reaction to taking 4 capsules/day (which I only did one day each). 

Now I take ⅓ of an Inspire capsule on Monday and Wednesday and 1 Connect on Tuesday and Thursday. ⅓ of an Inspire capsule contains only 50 mg of Lion’s Mane which is very low compared to 5600 mg in 4 capsules. 300 mg Maca Root in 1 Connect capsule is a bit higher in proportion to the 4800 mg in 4 capsules, but should be monitored by my health practitioner. I am also due for another 4 week break again.

I post this update as #25 on my Parkinson’s blog. Blog #24 gives a summary of my reaction to reading Dr. Madlock’s book which might be of interest to you as well. 

https://pubmed.ncbi.nlm.nih.gov/24730393/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6982118/

Parkinson’s #24

Today I finished a three day marathon, plowing through Dr. Hadlock’s book Recovery from Parkinson’s (downloadable for free at https://pdrecovery.org/recovery-from-parkinsons/  ). It is close to 400 pages of profound knowledge. I highly recommend this book to anyone who is interested in finding out what the possible causes for Parkinson’s (PD) are and what ways we can choose to recover or find healing. 

About the author (Copied from the last page of her book, p. 399)

“Dr. Janice Hadlock, DAOM (Doctor of Acupuncture and Oriental Medicine), LAc (Licensed Acupuncturist), is the founder of the non-profit (NGO) Parkinson’s Recovery Project. She has led the research aspect of that project since 1998.
She is a professor at the Santa Cruz acupuncture college, Five Branches, since 1997. She teaches channel theory and psychology/counseling. Her findings on Parkinson’s disease and asthma have been published in top-level, peer- reviewed journals including the Journal of Chinese Medicine, The American Journal of Acupuncture, and the New England Journal of Medicine.
She lives in Santa Cruz, California.

I can’t offer a review of this book that would do it justice. I can only strongly recommend everybody to read the whole book. It builds up gradually, giving an overview in the beginning that might give the reader the idea that “yeah, I get it” as it did to me. After a few chapters, I was just about going to share my first impressions in this blog, being all excited. That would have been a disaster. Chapter by chapter, more information is added that made me change my hasty conclusions time and again. So, buckle up and read the whole book! I will now make my post, without yet reading the other books (also free for downloading at the same website) which will give me more specifics to work towards my recovery. 

Spoiler alert! This doctor of acupuncture tells us that acupuncture is neither needed nor recommended to treat PD. 

Those who followed my previous posts remember that I experienced a remarkable recovery. I described what I did, why I did it and how it worked. Now I know that I made some cardinal mistakes and I will have to regroup to untangle some of the mess this caused. 

What I learned first of all is that there are four types of PD. I have the combination of type 1&2. Type 1 requires mental work to restore proper flow of channel qi. Only then should one proceed to ‘hands on’ treatment to tackle type 2. By going for acupuncture treatment as soon as I realized that I had PD  this may have put at least a twig in the spokes for an ideal way to recovery. So why did it work anyway? My conclusion is that similar to taking dopamine replacers or enhancers, the intervention showed results. Unfortunately, people who take the allopathic path (either by choice or because they let themselves be led by the nose by their GP or neurologist) will initially enjoy a reduction of symptoms. However, what I did right was the visualization of dopamine flow from my head to my toes. So I did the right thing for a not so solid reason. I helped this visualization along with the choice of music and activities like rowing and cycling.

This fits the mental work needed to visualize (and learn to feel) the flow of the stomach (meridian) channel qi to go down from my head to my toes. Experience in music therapy, reiki and using intuition may be credited along with good luck. Readers of the preceding posts may have noticed that I gradually diminished my obsession with dopamine over time. I also posted links to some YouTube channels pointing out the functional difference between dopamine and serotonin and the possibility of dopamine addiction. 

Reading through the book, I could observe in hindsight that I have been oscillating between correct and reverse flow of channel qi for the past three years. I also realize that the conditions that eventually manifested in unmistakable PD symptoms were laid at the latest by reaching the age of seven. That is the tough part to work out of my system compared to the three years of twigs in my spokes. 

Mind over matter was an important part in our upbringing as was mind over feelings. I was proud of this virtue, but in a nutshell, this is what reverses the flow of channel qi. It is also important how we are programmed linguistically (neuro linguistic programming or NLP). The cultural influence on NLP can add insult to injury when growing up in a Swiss/Dutch household. In both languages it is difficult to directly say “I love you”. At least in Dutch the word love is in the saying “I have you dear” (ik heb je lief), in Swiss-German, the word for love is more evasive (I ha di gärn). Adding to this is the circumstance that the Swiss hated the Germans, who can say “I love you” without any extra words. In my upbringing, popular “Schlagers” were despised, so singing “I love you” as was intrinsic to Schlager singers, was a double whammy of no go. (I will have to see how my Dutch cousins and friends feel about this.) Nowadays, Swiss-German is more tolerant of imported German (and English) words.

My parents, with all their shortcomings, were caring and loving. But until I met my Canadian wife, I never heard anyone ever say to me “I love you”. This is what hit me, when finally on page 354 I read the following:

“Many people with Parkinson’s also pride themselves on their ability to show love for others through their hard work and/or strong moral compass. 

However, many people with Parkinson’s often are unable to feel the resonance between their own hearts and their own bodies, or between their own hearts and the love that others are directing towards them.” 

At this point I realized that I can not recommend just reading parts of the book. Every part on its own has valuable information. But when it comes to healing, one needs to get the whole picture in order to not just treat symptoms. Now it is time to include my mind (and soul) into my matter, as I begin a new and somewhat unknown stretch of my journey.

A friend sent me the link to this article:

A Pianist Adapts to Life With Parkinson’s Disease: A Pianist Adapts to Life With Parkinson’s Disease. Just paste this into the browser. I cant paste the direct link, because it is embedded in another website.

I found this article interesting, not only because the contrast between this pianist’s approach is quite different from mine. Below is my response to Christian:

Very interesting. A quite higher strung musician than I am, whose ambition, I assume, is part of his dopamine regime. I already had retired from teaching, performing and ambition after the first bout of Parkinson’s “ending” in 2016 as soon as I went off the medications for my bi-polar disorder, which has “disappeared” as soon as I fully retired that year. 

My playing is now better than before. The only symptom remaining is the feeling of lack of balance when walking and turning my head more than the body. 

I have read that Nordic Walking is, after Bicycling and dancing the best physio to keep Parkinson’s at bay. So I just use my high tech walking sticks, also in town. I “dance” with them, varying the usual rhythm of 3 steps to 2 sticks to 4-3, 5-4 and 6-5 sticks. Those are my “gears”: The highest gear is 1-1, when it gets really steep. This is an excellent brain gym as well.

The walking sticks also give me more power. My arms are stronger than my legs, and I am one third faster than without the sticks and can go longer distances. I have used them for more than 15 years, although not regularly, so I did not have to learn how to deal with them. Now I use them “all” the time.

One of the symptoms of P. is that the arms stop swinging when walking. So when dopamine does not reach the arms to naturally swing, I swing the arms (dancing) to “produce” dopamine. With the sticks, of course, the arms are moving too. What the science behind this is, I don’t know. However, placebo can be a proven healer.

So far, I manage quite well without any pharmacological dopamine replacers and I hope to keep it this way. 

The Gift of Parkinson’s

In this blog I write in detail how Parkinson’s affected me and how I dealt with it. In the fall of 2020, Parkinson’s descended on me suddenly and fast. Within about two weeks my ability to play was reduced to around 40% of what I could normally do. I slipped down to a grade 4-5 level. So I began to methodically work on retraining my mind and my fingers and gradually regained the previous levels. Because I had to rebuild my technique, I also managed to evade many of my bad habits I practiced before Parkinson’s. Within about 18 months I reached 100% again, but it did not stop there. I keep improving and now can play pieces I never managed before. I think I am now at around 130%. 

Another factor that helped me to get here was to understand the mechanisms of Dopamine vs Serotonin (see previous posts). From this I learned that overstimulating Dopamine can cause an addictive situation. I felt a bit that this was happening to me. One month ago I began experimenting with micro-dosing Psilocybin. It has a very relaxing effect on me and I feel a sense of serenity.

On the “Personal Reflections” (#1 & #2) I describe my relationship to Brahms and Schubert. I often had to stay away from much of the Brahms repertoire, because it triggered severe depressions. For the last three weeks I have been almost exclusively practicing Brahms Intermezzi on the piano (I still play the clavichord, hammered dulcimer, tenor horn and recorders as well) and I have had not the slightest sign of being drawn into depression by this music as I was before, even when working on those pieces which Brahms called the “Lullabies for his Sorrows”. 

The “gift” of Parkinson’s forced me to regroup and rebuild my music making. This now enables me to play Brahms’ music I love so much, without paying the price of depression.  

I notice more and more exhaustion, even for smallish efforts. The Exertion Intolerance Syndrome (EIS) appears to progress. I also have more challenges with balance. As a result, I decided to give up rowing, since the pleasure to strain balance became totally out of whack.

Occasionally I have a day, where my hands loose aim on the piano and clavichord, but when I employ the techniques I use at the onset of Parkinson’s, I can regain control of my playing.

Faith and Reason, True and Right?

While watching

Resetting Your Brain’s Dopamine Balance – Dr. Anna Lembke (on youtube)

I was reminded of two things. My chiropractor telling me that one can do the right things for the wrong reason, and how ancient practices and rituals can now be “explained scientifically”. 

(see also Parkinsons #18)

Dr. Lembke’s lecture is full of information and quite enlightening. The way she describes the gremlins’ function in our brains, make the complex interaction of neurotransmitters easily understandable. 

There can be an overstimulation or production of dopamine which can lead to dopamine addiction which can express itself in whatever we get addicted to. To restore the balance of “pain and pleasure” and a healthy production of dopamine, three factors stood out for me that would help overcome addiction: 

30 days of complete abstinence

Acceptance of some pain through exercise

Being truthful by stopping to lie to yourself and others 

This makes very much sense to me. However, in a way it is not anything new. What is new is the neuropsychological explanation. Her metaphorical gremlins are of great help.

The ancient practices and rituals I refer to are found in many religions and practiced in many forms. As a western theologian, I draw these obvious parallels based on my traditions:

30 days of abstinence – 40 days of fasting 

Acceptance of pain – ascetic practices (time in the “desert”)

Stop lying – sacrament of confession

On the one hand, addictive behaviour is fed by availability of the addictive substance or activity. Because of new technologies, we are flooded with consumer goods and information that can drive us into addictions without us noticing it until it is too late. What before industrialisation was an occasional treat (releasing dopamine) is now available 24/7. Public or peer group pressure are also factors to push us into unwanted dependencies. 

On the other hand, going to church and following the ritual practices embedded in the liturgy of the service and the liturgical year have diminished in inverse proportion to the availability to physical and digital consumer goods (dopamine producers). To me this is a simple (and perhaps also simplistic) explanation for the apparent explosion of addictive behaviours. It is simple for me, because I am experiencing the challenge of finding the balance or homeostasis, as Dr Lembke calls it, in producing enough dopamine to keep Parkinson’s at bay and avoiding dopamine addiction.

There is sometimes a trade off, which for some is acceptable, for others it is not. One of the consistently effective “methods” to get people off hard drugs is conversion to a faith. Unfortunately, quite often the kind of faith that does the trick is itself toxic because of the rigid fundamentalist approach it employs. There are enough stories of gurus and preachers who exploit people who turn to them for the help they promise. By them, “Truth” is being sold employing bold lies. This abuse is countered by “pure reason” represented by so-called new atheists. Both sides include a few “truths” in their approach. The use of such truths easily turns into abuse by turning them into absolute non-negotiables. I am skeptical about the existence of such things as absolute truths and pure reason (see also Musings #5, Thoughts on Ecumenism and reflections on the diversity in the four Gospels, #6 on my Theology page). There is clear evidence that placebo (faith) can play an essential role in a successful healing process. I consider it therefore as justifiable when people use the wrong reasons to do the right thing. However, I might add some conditions. The right thing, regardless of the correctness of the reasoning, has to be administered with integrity and in good faith.

In a less extreme (perhaps agnostic) way one may consider the liturgical and sacramental practices that help people in maintaining a neurochemical homeostasis to be a harmless wrong reason to achieve the right result.