2021-05-03

After my Acupuncture treatment on April13, I was able to go full steam. I rowed 4 days in a row, I played the clavichord and the horn each day for hours, it felt as if I was at 95% pre-parkinson-capacity (ppc) Then followed a week of very low energy. I went rowing only twice and practiced each instrument only every second day. I also noticed that my endurance is limited to 50-60 minutes of playing. Then the mistakes start piling up. At rowing I usually went for 30-40 minutes straight (at an easy pace) in one direction against the wind, then drift for about 5 minutes before returning to the dock (with the wind, unless it changes direction). Now I have to rest every 10-15 minutes and feel tired after an hour on the water.

April 27, I had another treatment. This time, although feeling much better, I pace myself and stop playing before I hit a full hour, and rest when rowing before I get tired. I am testing if I can maintain a reasonable level of functioning while spacing the treatments two weeks apart. The playing is satisfying at about 90% ppc and I hope I can maintain this level for a while.

2021-04-13

I fine tuned the TCM herbal compounds during the last 3 weeks. The last two weeks I was away, so I skipped one week of acupuncture treatment. For these two weeks I did not play any instruments at all. Upon return my level of playing was only minimally impaired. 

Today, after the treatment I was able to play through 3 hours of clavichord repertoire, and on the horn I was able to tackle two Telemann Flute Fantasias (#2&3). I managed to get the lower register under control, down to F3. Lips and tongue are still a bit sluggish, so the speed in the fast movements is about 20% slower than I was able to play back in October. 

I am trying out spacing acupuncture treatments two weeks apart again. 

In consideration of the possibility of releasing more dopamine when playing enjoyable music, I am mindful of avoiding any activity that could cause stress or displeasure. In the past weeks I think I was quite successful in this respect. The positive side effect is that it makes life quite pleasant. Considering my history of living for the better part of five decades with anhedonia, dysthymia and severe depression, this is quite an achievement. “Look ma, no drugs!” and possibly a bonus release of dopamine (could it be this simple?).

This raises another question: Is there a connection between prolonged depressions and developing Parkinson’s? 

2021-03-24

Within a few days after the next treatment (after 14 days) things went back to normal. After two treatments things actually picked up a bit and I am now again able to enjoy playing the Goldberg Variations reasonably well, so I am about at 95% of my pre-Parkinon’s abilities on the clavichord. Variation 27 is the canary in the mine. It lacks the playfulness and beauty of the other 29 variations. It is only two part, not much to hold on for finger-pedalling and rather dry. 

The dopamine release seems to react immediately when I don’t fully enjoy what I play. This also shows when I play the horn. The lower register was always more challenging for creating a beautiful tone quality. This means that forcing myself to work on tone quality with extensive warm ups (I averaged about 40-60 minutes each day) won’t work; it actually makes things worse. So I stick to my song collection which I really enjoy.

Today I tried the piano. It is a bit of a challenge. The keys are slightly wider than on the clavichord (and harpsichord) and the action is heavier. This creates tension, which I can overcome with music I fully master. 

Since I have plenty to play and end enjoy on the clavichord, and since I prefer the gentle sound of it, I decided that for time being I won’t be playing the piano anymore. Sofar however, whenever I pick up the recorders, playing them works really well. On the hammered dulcimer I have to be more choosy with the music I play and it has to be perfectly in tune, otherwise I lose the aim for the right strings. This gets the shakes going which are augmented by the length of the hammers (about 30 cm).

Taking the TCM formulas prescribed bed by my practitioner helps quite a bit too. I definitely notice when I run out. To sum it all up, I am close to normal functioning. I also keep my balance better. 

2020-03-07

Until last week the situation remained quite stable. I observed a very slow increase of symptoms in day to day activities like tremors in the hands and loss of balance. Sometimes I find it difficult to hold back shaking. It feels like I just want to let my whole body shake. Keeping constant control of my movements is somewhat tiring.

Playing my instruments, the clavichord, tenorhorn and hammered dulcimer remained stable. We decided to move to try acupuncture treatments every 14 days. This seems not a viable option. During this second week I lost about 10% of my playing abilities, particularly on the clavichord. So I will return to weekly treatments.  Playing the horn seems to have a stabilizing effect for my overall condition. It appears that I should not skip any days on the horn, but give it priority over the other instruments.  

Parkinson, Dopamine and Music 

Does music release dopamine? 

In my last post I considered symptoms and causes. Today it clicked. We know that the cause of Parkinson’s is in simple terms a deterioration in the nerve cells which hinders transmission of dopamine needed for fluent motion of the limbs etc. I figured that if dopamine is released by music, making music should ease the symptoms of Parkinson’s. My latest literature on music therapy is from 2008. So I googled my question and found various articles. A report in BBC news from January 9, 2011 about the first study on this question done by researchers at McGill University in Montreal had tested dopamine production in response to music. This gave me a clue when the research was done. Scanning through other articles that reported on this brought me to the conclusion that the focus of research was on how listeners to music can achieve the feel-good experience with music.

For me this confirms that there is a connection between dopamine release and music. The gist is that dopamine is released depending how much we like the music. So it is not music per se. The links below give you more (very basic) information.

https://www.inc.com/scott-mautz/listening-to-music-you-love-has-surprising-brain-benefits-according-to-new-science.html

https://www.ucf.edu/pegasus/your-brain-on-music/

Robert Jourdain in his book Music, the Brain, and Ecstasy in chapter 9 also describes how music affects people differently depending on their background. 

My caveat is that while for working to ease Parkinson’s symptoms this basic information can be helpful, it is not necessarily applicable to other health challenges. In my experience, illnesses like mood disorders may have to be tackled quite differently. I will address this in detail in a future blog about depression.

The information is very useful for anyone who likes to plan for the eventuality of dementia. Making up a playlist of favorite music and songs can be helpful to maintain long term memory for some time. It is also very helpful for caregivers and family of people with dementia. The list of songs (and hymns) should also be complemented with printed versions (or saved downloads) that can be sung for, or with the patient. Songs that were popular seven or more decades ago, are now often forgotten and difficult to find. There are many stories out there about people who appeared to be in a vegetative state that were ‘woken up’ upon hearing their songs and began moving to the rhythm or even ‘sang’ along. 

When I noticed the beginning of the symptoms in November 2020 I reacted immediately with the (self-) treatments described in previous posts. The symptoms only manifested at that time in my music playing and I managed to get them reasonably well under control which enables me to continue enjoying making music.

In the last weeks I began noticing slight tremors in non-musical activities like holding a spoon to get coffee out of the jar. (BTW, a strong coffee after waking up is recommended on various medical websites.) Aiming cups and dishes into the cupboards or microwave does not happen just normally. I actually have to slow down and aim. Again, it is not near as bad as it was 5-6 years ago, I now just recognize it earlier. 

This would indicate that while I am so far reasonably successful with my approach to control the symptoms when playing music, the progression of Parkinson’s disease appears to be carrying on, and now manifests in day to day operations. Therefore it is time to see what (if anything at all) can be done to address the root cause and slow down the progress (progress is not always good…).  Suggestions are welcome.

The Importance of Being in Tune

Basic Principles of Music Therapy

It can be observed that while listening to a person speaking with a hoarse voice can cause one’s own throat to feel sore. It appears that when we listen, our vocal chords ‘try’ to vibrate in ‘tune’ with what we hear. When I practiced the violin, and produced a scratchy sound for a few minutes, I would get a sore throat. The same happens when my clavichord gets out of tune, esp. when the string pairs that make up one note are slightly out. This produces a kind of grinding sound. To me, this is an indication that we do not listen with the ears alone. Already five decades ago scientists began measuring by means of EEG, EKG, breathing patterns and capillary contraction and expansion how our body reacts to different sounds and music. Some generalized conclusions can be drawn from the result of these tests, which by today are becoming increasingly more sophisticated. 

It is clear that if you want an army to march to war, that you won’t play a lullaby; the Marseillaise will hardly put anyone to sleep either. However, the choice of music has to be relative to the recipient’s background. While I observe many people falling asleep when hearing Bach (perhaps because it is too complex to follow, and/or because it is unfamiliar). Bach wakes me up and makes it difficult to go to sleep with. Therefore the choice of music in therapy is a delicate balancing between what the therapist can competently produce and stand behind, and how the client can relate to it. 

The choice of instrument can also be important for achieving particular outcomes of the therapy. There are many suggestions out there. However, (I use this word quite frequently;) If a therapist is competent on a wind instrument, it would not be wise for him/her to use a stringed instrument that is indicated for a particular treatment, if competence thereon is lacking. 

Specific examples for using Finger-Pedalling to hold back tremors.

The technique of finger pedalling is going a bit against contemporary trends, particularly in interpreting music by Bach etc, when keyboard players play just about ‘everything’ detaché if not staccatissimo. However, it does not go against the wishes of Bach himself who emphasises the importance of playing cantabile, as in the foreword to the inventions. 

Girolamo Frescobaldi in his introduction to his Toccatas describes finger pedalling when instructing how to play Toccate di Durezze e Ligature (Durations and ligatures).  These are best played on the organ (example Toccata 8 from book 2 of Toccatas). Frescobaldi’s instructions suggest to hold down notes of chords into the following chord as long as the fingers or the ear can, to create more interesting dissonances/tensions. So we may consider him the ‘inventor’ of finger pedalling.

Gustav Leonhard demonstrated finger pedalling in a masterclass attended on Bach’s English Suites, particularly #6 in d-minor and #3 in g-minor. 

So I dug out the Frescobaldi Toccatas, after I had established some degree of stability from playing Scheidt and Bach chorales. Today (Feb 11), I played through the two above mentioned Suites with reasonably satisfying results, emulating what I learned from Leonhard. 

There can be a danger when battling tremors and holding down notes longer than one is used to to create tension in hands and arms leading to carpal tunnel issues. Caution is therefore advised. The clavichord comes in handy for bio-feedback. When one holds down the keys with too much tension, the pitch gets sharp or the tangents get stuck between the strings. 

This is an additional benefit to the purely beneficial effect for controlling tremors when using finger pedalling is that some players might get away from playing to choppy (anyone sensing I might have a bias?;). I also believe that playing melodies as cantabile as possible lets the soul soar on the melodies. In my approach to music therapy the soul should not be ignored. If nothing else, a soaring melody physically influences heart rate and healthier breathing. This has been objectively measured and documented since about five decades.

P.S. The famous prelude in C-major by Bach from WT clavier is of course a great example of written out finger pedalling (at least for the left hand). Glen Gould contrasts this by playing the right hand with a (in my opinion arbitrary) consistent pattern of staccato and legato. For therapeutic (if not aesthetic) reasons, the finger pedalling can be extended to the right hand as well. However, it should always be pleasing to the mind (zur Ergötzung des Gemüths), as Bach used to say.

Below is a copy of the documentation I began December 21, 2021

After this initial jumbo-post giving an overview, the posts will be shorter and more manageable.

2020-12-21

A news update I wrote to some friends

At the beginning of November I had exceeded my own expectations by getting the Goldberg Variations completely by heart. I then enjoyed playing them almost daily along with the other repertoire of about 5 hours I had by heart on the clavichord. I viewed this as a foundation for my enjoyment of just playing and had no further plans to add more heavy weights to the list, I was going to take it a bit easier.

Also on the Euphonium/Tenorhorn I reached a level I could enjoy, playing Bach Cellos Suites and all the Telemann Flute Fantasias.

A month later all has changed. I started having troubles keeping the lower notes on the Horn steady. In hindsight I see now that this challenge began later in Summer. By now (December 1) I have lost almost two octaves in the bass. I switched  to playing songs from around the world, so I can still create a bit of beauty on my horn.

A week after the tremors manifested on the horn, they began esp. in my right hand on the clavichord. By last week I stopped playing my beloved Goldbergs and most of the repertoire I had established. I can still play music that is slower and has more than one voice per hand. Somehow holding two keys down keeps the shakes better in check. So Bach Chorales etc still work, but I don’t know for how long. It looks like I have to once again re-invent myself anew.

I am only glad that this time around I know what is going on. Seven years ago I had to quit my organ job because I could not play a single Sunday anymore without screwing up at least one hymn. Two years later, I was finally diagnosed with pharma induced Parkinson’s disease. Back then it was highly frustrating having no idea why my playing got worse despite intensive practicing. As soon as I went off the medications (gradually) things came back to normal. This time around I have no meds to go off from, and my lifestyle just about includes everything that is recommended to deal with Parkinsons. 

Neuro-pharmaka is not an option, because they also screwed up my hearing considerably, which I hope to avoid this time. I am looking at alternative methods to make my life a bit easier. 

So much for planning a retirement filled with music making. Now all I can do is enjoy the moments, stay serene and calm and plan to not plan.

2020-01-27

My initial reaction to coming down with Parkinsons was naturally being devastated. However, I also was grateful for having experienced a bout 5-7 years ago, so I knew what was going on and was able to react in a constructive way. 

When at the beginning of November I noticed my difficulties of keeping straight tones in the lower registers of the horn (euphonium or technically more correct a tenor horn, which I play with a french horn mouth-piece) I immediately stopped any alcohol consumption. When at the beginning of December I realized that Parkinsons had returned I began researching the disease. Researching Parkinsons in English is very discouraging. The gist is basically that it is downhill only. The side effects of the usual drugs administered were not an option I was willing to risk. When researching German sites, the first things that popped up were more encouraging. Alternative treatments indicated a fair chance that progres of the disease can be slowed down (or even stopped, which I don’t dare to hope for). So I booked myself in for Acupuncture and TCM treatment which began on January 4, 2021. As for diet and life-style, there was very little I had to change.  

The first thing I did was to apply my music therapy skills immediately. Understanding that Parkinsons is broadly seen as an inhibition to the transport of dopamine that enables fluent motion throughout the body and that people with Parkinsnons who have difficulties walking can dance to music, made me choose music that would help to counter the tremors.

On the horn I started playing through my collection of about 700 folk songs in 13 volumes (Das Lied der Völker, selected by Heinrich Moeller Edition Schott 551-560 &1228-1230). The power of these beautiful melodies, I reasoned, would carry me and change the playing habits that developed because of the tremors. Since only the lower range of the instrument and fast speed was affected, the songs were ideal because their range was generally tremor free. Songs that went below C3 (C1 being the lowest on the piano) I transposed up four or five notes to avoid triggering tremors. I played for 1-2 hours each day, enjoying the beauty of these songs and clear tremor free tone. After about three weeks I did not need to transpose down anymore.

On the clavichord I stopped polishing the Goldberg-variations and played Bach and Scheidt chorales, etc. Having more than one finger per hand at one time holding down a key helped stabilize the hands and I concentrated on letting the beauty of the music carry me. Once I regained control of my hands, I added more lively renaissance dances and polyphonic canzonas and ricercate. 

By this week, between treatment, supplements and my change of playing style have stabilized the tremors considerably when playing music. I will now tackle the hammered dulcimer (HD) to see if I can stabilize my hand when holding a spoon. I also apply Victor Frankel’s method of paradoxical intention. Playing tremolos on the HD allows me to control the tremors instead of the other way around and the sound helps to override the involuntary tremors. I sometimes managed to use this method in concerts when I felt that I am getting the jitters, I would voluntarily start shaking my hands, which allowed me to stop the shaking after a few measures. It actually worked sometimes…. 

2020-02-08

The trick with the Hammered Dulcimer seems to work as well. I do have to take it easy and play more lightly and slowly. On the horn I can do the warmups again all the way down to C1 (the lowest c on the piano). Playing my songs below G2 is however not enjoyable. As far as speed is concerned, I managed an Irish Jig (a bit more comodo than presto). 

I am not a fan of vibrato, however; pulling a Frankel (applying paradoxical intention) by attempting vibrato also seems to help.

Today I also tried to play the Goldbergs, got through ten variations and then I felt some tremors returning. So I back off again.

All in all I feel quite happy that my playing is returning to somewhat normal. It is at times a bit of a challenge not to push. But knowing the likely consequences is a formidable motivator.

The difficulty with documenting my approach of course is that there is no way of determining in a clinical way, which of the treatments and coping mechanisms are the ones that give me these positive results. In therapy though, it is usually better to apply as many different treatments as possible, as long as one does not interfere with another. I do react positively to acupuncture and feel improvement after every treatment (at this point weekly). I tell Shauna my current issues, and the next day I feel better. While playing I observe myself as I would a client and can gauge how it works. If it does not work, I back off, as in var.10 of Goldberg.

A list of supplements and dietary changes will follow.

Summary: In November 2020, I found out that I was coming down with Parkinson’s. By mid December I had lost about 60% of my playing ability (based on my own subjective estimate). I immediately engaged my music therapy skills, booked myself in for Acupuncture treatment, adjusted my diet and added supplements.

After less than three months I regained about 40% of my abilities to play, feeling I have about 80% back. 

The details, how it went and what I did is documented in this blog.

I suggest to new visitors who wish to get a good idea to scroll down to the first entry.

Important!

While sound can heal, it can also injure. The same goes for music. Documenting my self-therapy does not mean that it will work for everyone. I share my experience to encourage or maybe even inspire other musicians/therapists in similar situations to find a way to help themselves or others. One rule however, applies to everyone: Instruments must be well tuned and produce good sound quality. More on this in an upcoming post.

I welcome constructive questions and critical questions.