Musicians with PD

[WN3SEV]

I am a tuba and piano player (first love = tuba) who was diagnosed with Parkinson’s Disease in 2018.

I resolved to keep my PD confidential for as long as possible so that personnel directors would not be hesitant to hire me for orchestras and other ensembles.  Without concrete knowledge of when the PD symptoms would become impossible to hide from others or from myself, it has been challenging to know when it is “safe” to accept gigs with confidence that PD will not deleteriously affect my performance.

2022 may be the year when I am forced to “face the music” and yield my public music-making to the PD.  Due to my shaky sound production in rehearsals, I was asked to resign from two regional professional ensembles.  I had practiced diligently. But I noticed that even in the privacy of my practice room, it was taking longer for me to master the music that I needed to prepare.  

I wondered if my uneasy feeling during the rehearsal could be attributed to Imposter Syndrome, as some of the players were members of the Chicago Symphony Orchestra.  But I felt the physical sensations generated by PD, internally and externally.  I began having doubts about what would come out of my bell as I played.

I just performed Christmas Eve Mass in the brass quintet with whom I have played for nearly 30 years.  Because ofj a tight rehearsal/performance schedule, there was no time to warm up, do some cleansing breathing, etc. before the Mass began.  I had played most of the music in previous years.  As I began playing, I felt the tremors not only in my hands, but to a certain extent throughout my body.   I got stronger as the Mass proceeded, but I had to make some accommodations in the music part (dropping octaves, etc.) to avoid “taking risks.”  The performance as a whole was “OK.”  But I had lost the JOY of playing, the joy of creating music, feeling the vibrations of my instrument.

The anguish of the loss of confident music making is heavy.  I want to keep playing, regardless of whether I am paid to do so because of the pleasure of making music and the neural benefits of keeping the brain musically active.

Do you know of any musicians who have faced similar circumstances?  I’d like to reach out confidentially to them to learn how they adjusted to music-making with PD, how they felt about their performances, how they knew when it was time to “hang up the horn,” etc. 

Thank you so much for any referrals and anything else that you can advise.

[VicArpeggio]

My situation was almost identical to yours.

[Farooqji]

You haven't shared about the medication you use. Sinemet can almost make you normal in the early stages of the disease

[busters_dad]

Someone just started another thread about a musician who took up ping pong and it helped his playing. pingpongparkinson.org/video...

[ghoegap]

If i recall correctly Daphne Bryan who wrote a book on the use of Vitamin B 1 is also a musician and has continued to play.....she is a member of this forum : DAP1948

[Hidden]

I’m only an amateur musician, I’m not in the same league as you but I’m also starting to find the loss of control distressing. My left hand has never required any conscious mental supervision on guitar but now I’m losing speed & fluency especially in my little finger.

I need an involvement in music to stay sane, so I’ve done something I swore I’d never do & dived deep into the world of digital audio workstations. Specifically Logic Pro X on the Mac. It took ages to learn but with a midi keyboard a decent mic & an interface for the guitar I can write, record & produce competently now.

I understand the reticence of any musician to engage with DAWs & software but there is one question which is relevant to all musicians in all situations at all times……what would Bach do? The answer, as you know, is that he would have investigated.

Good luck & keep making music.

Steve.

[Rikyster in reply to Hidden]

Similar here. Piano and guitar difficult now. I've been using computer aids for decades but my diagnosis prompted me to finish some projects and make them available.

I'm now considering forming a remote prog rock band of Parkies; anyone know of any?

To WN3SEV: find a genre you haven't explored before; jazz, ambient, modern, avant garde, experimental. Adapt as best can and retain social contact.

[Rikyster in reply to Rikyster]

Hope Ok to post this rikloveridge.bandcamp.com/t...

I couldn't play it so got a friend to play it! Still brings pleasure.

[Hidden in reply to Rikyster]

That's a lovely piece Rikyster, thanks for sharing. I'm in the process of releasing some tracks at the moment but I can't share just yet as one of them's a cover & I'm still waiting for the licence to come through. It's a Zappa track which was aimed at Nixon but is just perfect for Putin, the hook line being "I just can't believe you are such a fool". Uncle Frank often put down very simple ambiguous backings with a sort of lydian feel & then solo in free time over them, the whole thing's so musically vague that it's perfect for your average Parkies guitarist 😂.

Kind of intrigued by the idea of a remote prog band but apprehensive about anxiety & my increasing limitations. I'll let the idea live with me for a few days. Presumably it'd operate via Bandcamp or Soundcloud or something similar?

[Rikyster in reply to Hidden]

Yeah. My main genre is Prog Rock... new CD with remote collaboration out now.... 6391fc2164405.site123.me/

[Hidden in reply to Rikyster]

Loved the trailer Rick, right up my street. Got the CD on order & sent my email with it. I'll spend a couple of weeks absorbing it & see if I can come up with anything of interest. Your use of extended chords is waaay better than mine! Cheers.

[Dap1948]

Hi. I became aware that I had a problem when I realised that my right hand wouldn’t play as fast as my left. I am a classically trained pianist, teacher and accompanist. I was diagnosed with PD 12 years ago. For the last five years I am back to playing more or less as before PD.

I have written two books, “Music as medicine, particularly in Parkinson’s.” And “Parkinson’s and the B1 therapy”. The second book explains what took away all my rigidity and bradykinesia. I have a Facebook group “Parkinson’s B1 Therapy”. There are many of us getting our life back and finding we have days when we forget we’ve got Parkinson’s.

[PDWarriorJ in reply to Dap1948]

Hi! Is it possible to get B1 therapy on the NHS? Or can you do it with over the counter supplements? Thanks in advance for your help!

[Dap1948 in reply to PDWarriorJ]

Until a rigorous, double blind study to show the value of the therapy can be funded, medical authorities will continue to ignore it. In the meantime you can buy B1 hcl from Amazon. The book has all the information.

[PDWarriorJ in reply to Dap1948]

thanks, I’ll try it!

[JustJeff]

Hi i am a musician and was entertaining in care and residential homes and memory cafes for early Alzheimer's playing guitar and clarinet and sax plus singing. I started to notice erratic strumming on the guitar and fingers sticking when playing Clarinet. Also loss of confidence and getting tremors in front of a room full of people which they might have misinterpreted as nerves. Absolutely devastated madopar improved situation slightly but had to give it up. I still practice everyday for pleasure and as a mental exercise. Hope your situation improves Geoff

[sprildiver in reply to JustJeff]

Hi everyone, I play saxophone but not a high standard but it is an essential part of helping me keep sane, as someone said. I have played to the public in charity concerts. That is not an option now but I still keep trying. Some days it helps, other days it is a great frustration. I never know how I will be able to play or not. I was diagnosed 5 years ago and seem to be getting worse all of a sudden. My medication is being changed constantly and seems that I don't take well to the normal medications such as Sinemet and Madapor. So, good luck to everyone who is struggling with their instruments. Keep plodding on and try not to give up, even if you do sound like a strangled cat! Just get sound proof room !! My typing is now rubbish too!!

[DeanGreen]

I am not a professional musician by no means, but I do enjoy music. As part of my post-retirement activities, I wanted to spend my time improving my harmonica and guitar skills (what little there was to begin with). I had DBS done a few months ago and my tremors are greatly reduced, but the desire and the joy of making and writing music is gone like many other things. It is difficult to get "in the zone" any more and "get into the music" like I used to.

I guess it is "all in my head".

[bassofspades]

Hey, look on the bright side - automatic VIBRATO! I was wondering if you're on meds also. And B1 is something I would strongly recommend trying. I play many instruments. My keyboard chops have suffered the most. I reached a low plateau and never seem to get much better even with practice and warm ups. Guitar is not as strong as it used to be if I play speed-metal. Drums, I have to keep my bass drum foot simple or it tenses up in my right calf. But on bass guitar, my favorite of all of them, I can still out-shred the best of them! Glad to say. Sinemet and B1 certainly help. So does stretching my hand muscles. Also, it seems to work in reverse, meaning the more I play, the better my overall symptom manageability gets.

So sorry you are facing the music with this situation. I hope you can find a way to enjoy playing for many years to come. And thats the whole point of it, to enjoy it!

[bandmember]

I play tenor horn in a brass band and French horn. The first sign I noticed was I couldn't hold a straight note. Instant vibrato as someone else has pointed out - but sounds a bit weird when you're playing a tuning note. Then the tremor started in my left hand. This was OK on a French horn but disaster on a tenor horn. I tried straps but they didn't work. Then my doctor daughter said I should see a neurologist and, sure enough, PD was diagnosed. The neurologist was rather amused when I said all I wanted to do was play in the bands. That was four years ago and Madopar has certainly helped the vibrato problem but I can't play the fast stuff any more. I've been demoted to second horn in the brass band. The music is boring, but at least I'm still part of things and my French horn provides enough challenges . I do lots of exercise and haven't had to increase my meds - 100/25 Madopar 3x per day and Azilect 1 per day. I get a bit twitchy if I'm feeling stressed and I find getting up and down off stages hard. Nobody seems to bother about accessibility for musicians! All in all I feel pretty lucky to be managing as well as I am - I turn 80 next year. Can't imagine life without music. Good luck to all my fellow musicians out there.

[RonB1]

I play guitar in a classic rock band, although it is getting harder to play lately.

reverbnation.com/tminustentmx

[bassofspades in reply to RonB1]

sounds amazing!

[RonB1 in reply to bassofspades]

Thanks

[crewmanwhite]

I certainly miss making music. I was never really professional, but a good amateur French Hornist, very involved (founded the first non-professional Horn Club in Australia), and played many musicals and with some amateur symphony orchestras.

Loved every minute.

However, I lost music before PD as my teeth deteriorated rapidly (after too many years on antibiotics) and, eventually, even the best dentists/prosthetist was unable to compensate enough to help.

Now, at almost 80 years old, I am still working on finding a solution so I can just play for my own pleasure. I have no hassles with PD, but my embouchure is awful.

I thought of changing to other instruments but have severe Dupetryn's contractures in both hands which inhibit the free use of more than 3 fingers on each hand.

Still love listening and will keep on trying. I feel your loss.