Today I got some feedback from a friend who had a question:

“If I have no symptoms at this moment, do I still have Parkinson’s?”

This is a valid question that will get contradicting answers depending if it is answered by “school medicine” or by “alternative medicine”. 

According to mainstream school medicine  – or as it is ironically often called “traditional medicine” – there is at present no cure for Parkinson’s. Once you have it, it will be downhill, over a time of years or decades. It is not uncommon, when people get acupuncture treatment with a similar success as I had, they are told that it must have been a misdiagnosis. I find it interesting that some physicians rather admit that their diagnosis was wrong than admit that there could be a cure…

With the concept of brain plasticity it also took decades before it became accepted by “the mainstream”. Therefore I think it could be possible that with whatever causes Parkinson’s, a similar situation will be “discovered” by mainstream medicine in due time. 

Back to the question: In my case, I still think the answer is yes, because if I skip an extra week or two of acupuncture, or if I overstrain myself, some symptoms reappear, mostly with balance issues, and faintly with tremors and brain fog. This means, as far as I can judge that at this time I still have Parkinson’s. This does not mean that after some more years of treatment I could be cured, even though it will be difficult to know for sure, because by that time the normal aging process can manifest in similar ways. 

There is no doubt in my mind that the treatment I am getting is working for other people as well, as you can also read in the recent post “Reflections on this Blog”. Therefore I consider it possible that there actually is a cure, it just needs to become recognized by mainstream practitioners and researchers. 

Parkinsons # 18

In my latest posts I talked a lot about Dopamine, and how to keep it flowing. Recently I watched the Youtube post Serotonin vs. Dopamine (see link below). A few points struck me to reflect more on my Dopamine “fixation”, particularly when it comes to addictive behaviours that can overstimulate the dopamine transmission and block it. Because I had several bouts of addiction to caffeine and alcohol, I would not rule out the possibility that these bouts might have contributed to my getting Parkinson’s in the first place.

I actually began to get somewhat tired (tired of being such a goodie goodie) of constantly keeping the dopamine flow up and tried to find other ways to stay well . So far, I still feel much better than before Parkinson hit me, so I can’t complain, but the difference between pleasure and happiness, as described in the link below makes sense to me. 

I do not think that any of my methods to increase the flow of dopamine should be discarded, but I think it might be helpful to keep the arguments presented in the Youtube post in mind while using these or similar methods.

Serotonin vs. Dopamine – 7 Key Differences Between Pleasure and Happiness

Parkinson Summary Update Aug 3, 2022

I managed to reduce Parkinson’s symptoms to near zero by 

1. Reducing any stress
2. Acupuncture and TCM treatment 
3. Playing music that stimulates flow (details in Park. blog section)
4. Physical activities that stimulate flow like rowing and bicycling

At this point e-biking appears to provide the best results because I am active without physical strain. After an hour of gentle rowing on the lake, I have to skip a day to avoid getting tired. With the bike I can ride for two hours or more each day and I feel energized to do more. Cycling appears to be on top of the list in many forums to counter Parkinson’s as well as dementia.

Parkinson’s, a Reflection 

A bit more than a year ago when my Parkinson’s symptoms re-appeared, I googled the topic. As I mentioned in the introduction how I found in contrast to my English query, which on the first page only showed sites that describe Parkinson’s as an incurable disease, the first page in German showed nine sites that talked about slowing down or reversing symptoms. A few even talked about healing Parkinson’s. The latter I did not even bother consulting, because I was skeptical. 

A few weeks ago, my wife Joan found this site:

N.B. for people who are on Parkinson’s medication it is important to at least view the whole video talk (about 83 min.) 

Recovery from Parkinson’s Chapter One: Introduction

It appears that I chose a good approach to tackle my situation as these 17 posts on my blog demonstrate. The above site pdrecovery.org confirms this. Nevertheless, being completely free from symptoms caught me by surprise and awakened the skeptic in me. Questions like did I fool myself, was it really as bad as I thought etc surfaced in my mind. However, Joan confirmed that her observations were clear. During the first months of acupuncture treatment the first few days after treatment my playing noticeably improved. The next question followed: was this maybe not a bit too easily achieved? 

The answer is no. Besides changing my diet, daily habits etc, I actually worked a minimum of three hours per day (with very few exceptions) on clearly focussed music therapy. Another factor in my recovery is because I recognized the symptoms early and acted immediately and intensively. What also helped is that I enjoyed my treatment plan of playing music I like, in a relaxed fashion without any ballast. If I would have had to keep a job instead of being retired the challenge would have probably been more complex. 

In conclusion I am happy with the outcome and hope that my experience encourages the readers not to give in to the myth that Parkinson’s is incurable. At some point I will go back to explore those websites I avoided reading because of my skepticism and might even comment on them. In the meantime I continue with my maintenance program of monitoring my music making and general lifestyle to keep it “Parkinson compatible”.    

Parkinsons # 17

2022-01-18

With any luck this will be my last posting on this blog, at least for the time being. In post # 16 I describe how things have stabilized. Well they haven’t. Things got better. I went to Switzerland for the month of November. Of course my routine was interrupted. All I kept was the TCM herbal remedies. Occasionally I played the recorder and tried to avoid any stress, which I managed reasonably well. 

I enjoyed visiting friends and family and staying in the new house we got for my younger son. It is in a quiet little town in the canton of Jura. Most of my friends and family came there to visit, so I did not need to travel all over the place. Instead, I toured the countryside with my e-bike and enjoyed the – for Switzerland – remarkably natural state of fields and forests and the wild limestone cliffs and canyons. 

When I went for walks and when I traveled I used a walking cane to keep a better balance, since balance and occasional fatigue was the remaining issue with Parkinson’s symptoms. Upon returning home, I went to Acupuncture treatment which I plan to keep up once a month for general maintenance. I also picked up where I left my music playing. By the end of the year I added more to my repertoire, particularly on the piano. To my surprise I could tackle heavier stuff like Brahms, including the last Rhapsody without fatigue. 

In January we had a major dump of snow. This meant hours of snow shoveling and I could not use the bicycle at all, so I walke up and down the hills, an average of 3-5 km per day. To my surprise, I do not feel any extra fatigue and my balance issues have completely disappeared. 

I realize that in mainstream medicine, healing is not part of the vocabulary used in connection with Parkinson’s. However, for all intents and purposes and for lack of a better medical jargon, I consider myself healed. Actually I feel generally better than before I got this episode of Parkinsons towards the end of 2020. However, since this is not the first episode, I realize that another may follow; but by keeping up my routine of enjoyment, I might keep it at bay for a good while. So let’s keep our fingers crossed. In the meantime I will carry on writing on the other pages of this website. 

2021-09-21

The situation is quite stable, with predictable fluctuations depending on my activities or lack thereof. I keep up the regime of Acupuncture treatments every three weeks and take the prescribed TCM remedies. 

During the last months we were busy moving out of the Studio after Joan retired from tutoring. We sold the rental house with the studio and bought a little house in Switzerland for our younger son to live in. I built a shed for all the books and stuff we are keeping from the studio, I made several dump runs, and sold things to an antique store and on Facebook Marketplace. The days when I did a lot of physical work took a lot of energy away. This reduced the activities that keep me healthy, such as playing the music I love and rowing on the lake. The latter was also reduced because of the smoke from the forest fires during the Summer. So I had more days of being a bit shaky and having issues with balance. 

I often took brakes from building and moving to recover with music and managed to keep the symptoms from increasing. New is that I can play more piano (initially pushing down the keys was too strenuous), including Brahms and Schubert without struggling with the physical challenge this music presents. However, pieces like the Rhapsody op. 119 no. 4 are physically (not technically) beyond my available energy for the time being. In contrast to half a year ago I can now even consider that I might be able to play this music again if my condition keeps on improving. 

The area where I don’t see improvement is in the general energy levels. Walking up 5-6 blocks from downtown to our house (about 80 m elevation gain) is exhausting and requires a nap. What a difference to the times I ran up mountains to fetch the goats. On the other hand it is quite comfortable to know that I feel no obligation anymore to go for strenuous (but beautiful) mountain hikes. Rowing still works, but I can’t push much beyond one hour at a time, and it is better to not go two days in a row. So I pace myself accordingly. Less (manic) frenzie is actually quite peaceful.

Parkinsons # 15

2021-07-15

Notes I had for the neurologist today

Status of symptoms:

Tremors are not impeding playing anymore.

I have to consciously move my arms while walking

Balance better since Acu-treatment 2 days ago

Balance issues appear particularly 

when head is getting to higher level like getting up out of the sofa

when bending over getting back up

when turning and looking back or changing direction

when stepping over things

when standing on things like step ladders and stools

Remedies I take: 

For liver and kidney function, weak yin, negative wind

Rehmannia Six Formula (Liu Wei Di Huang Wan) NPN 80049497

For tremors

Tian Ma gou Teng Yin (Gastrodia & Uncaria Gambir combination ingredients)

For Sleep

An Mien Formula (An Mien Pian) NPN 80057340 and 

L-Theanine with Magnesium

Parkinsons # 14

2021-07-15

This is a rant….

I just got off an on-line consultation with a neurologist. While the virtual visit setup arranged by the health authorities worked from my end, it did not from the neurologist’s end, so we switched to the good old phone. 

I was referred to the neurologist by my family physician who had a trimmed writeup by me of Parkinons #2. I assumed that the neurologist would read up this report as my family physician did. I am not verbally versatile in communicating such things coherently. It made my phone visit (covid 19 rules) with my physician productive, because he had the information. From the questions the neurologist asked, I assume she did not read this information. All she knew was the results of my blood work done for this consultation;  however, she mentioned my cholesterol levels, failing to see that these were from a previous blood test done 5 years ago. So I had to repeat my history, but less coherent than it was in my written form. This was a waste of time. 

Since I at present am not impeded by tremors, there wasn’t much to talk about and she could not do a visual assessment. As to my balance problems, I will have to get assessed by a physiotherapist on my own dime. Also a blood test for possible lead poisoning would be on my own dime to the tune of about $300. If such a test would be able to determine lead poisoning that might have happened over 50 years ago she was not able to answer. The only concern she had was that the traditional Chinese herbal remedies might be contaminated with lead. I understand that the remedies I take are made in Canada. 

I will get a personal visit with her in September. My hopes are not very high for an informative outcome. I understand that there are guidelines that instruct physicians to not tackle more than one issue per visit. This would render a holistic approach rather impossible. 

My present conclusion is that I have to figure things out by myself and that anything that might be helpful for a professional assessment has to be paid for out of my own pocket. Also the treatment that works is not covered by BC health care (which claims to be universal). It took 5 weeks to get a phone appointment with my family physician and then another 5 months to “see” the specialists. Health care? The hell’s care!

End of rant.     

Parkinsons #13 

2021-07-15

Two days ago I had an Acupuncture treatment. Since hand tremors had not bothered me lately, we decided to try skipping the points in the hands and concentrate on my balance issues, which were steadily increasing over the past months to the point that I considered using a cane. Moving out of the studio and hauling boxes full of books, while building a storage shed contributed to the balance issues as well as I observed on other occasions when I physically over-exerted myself.

So Shauna concentrated on points that help with balance with immediate effect observable. I do not need to hold on to stuff while maneuvering through the house.and don’t need a railing going up stairs. This is again an indication how tangible the improvements are after Acupuncture treatment.

June 30, 2021

A half year of acupuncture and TCM have stabilized my situation considerably. Last December my playing abilities were down at about 40% of my usual abilities. My playing adjustments and slight change of diet along with going off alcohol and caffeine (except the morning coffee) allowed me to work on improving my playing. Since the beginning of January I had weekly Acupuncture treatments and took the prescribed chinese herbal remedies. 

I am now able to function with treatments spaced three weeks apart, my abilities are close to 100%, except for the low register on the Tenor Horn (Euphonium). The energy levels are still lower. Instead of playing up to eight hours of music per day, I can now get up to four hours, with rests after 40-60 minutes. As things keep improving I will be able to space Acupuncture treatments even further apart. I will keep you posted. 

While playing music is physically tiring, it gives me the mental energy to stay balanced and happy. The Dopamine factor appears to be significant. 

In two weeks I will finally have a video appointment with a neurologist. I am curious what her assessment will be. So more about this after July 15.

2021-05-15

The two week Acupuncture intervals seem to work well, as long as I pace myself. On days when playing the keyboard is more difficult to get in the groove, I play the horn first. I do a 10 minute warm-up over the whole four and a half octaves. This works again although the lowest 1.½ octaves are weak (C1-F2) I still work on them. It makes the songs I play sound better. After about 40 minutes of enjoying the music I can go to the clavichord and it works right away. 

Another thing I (re-)discovered the importance of tuning. I used to tune the clavichord with the help of a tuning app. The clavichord is very quiet and the porch unstable. The mic does not easily pick up the sound, so I play the pitch and tune by ear each note of the central octave. I find it very difficult to hear the exact pitch the app plays and I found out that when I turn up the volume, the pitch in my head changes. 5-6 Years ago, my hearing got quite distorted. I heard high notes flat and low notes sharp. I could not trust my hearing anymore. So I retrained my ears (comes in handy to have written the first master thesis on ear training:). 

It seems that I can’t rely on hearing sinus tones (electronically produced without overtones, like the telephone tone) accurately. I pulled out my pythagorean tuning forks. My original tuning was a-440 Hz Werkmeister III temperament. The tuning forks (Icall them pitch forks) are C 256 Hz, which would have the a at 427.6 Hz From the set I can use The F and B (exact) and the e-flat and e, almost exact, the rest I do by ear. With this I get a much better tuning, because simple electronic instruments can’t hear what makes the best harmonic blend for each particular instrument. Once I nailed the tuning and started playing I went on playing for more than three hours without getting tired. Usually I have to take brakes every 40 minutes. See the importance of being in tune (Parkinsons #4).