Questions for Musicians with Parkinson's!

Hello all!

I am a bioengineering student working on a capstone project with Parkinson’s patients, specifically musicians. I would like to develop resources to help musicians get care and help that can keep them performing as long as possible! If this is you, I would SO appreciate if you could answer a few simple yes/no questions for me to help me get a better scope of your needs/ expreiences in therapy thus far.

Three yes/no questions can be found in the link below, and if you could fill that out I would be so grateful! (questions are coppied below)

Musicians with PD survey

Additionally, if this applies to you, I would love to hear about your experiences in music, how PD affected your ability to play, therapies that have helped, and anything else you might like to share. Thank you so much for your time, and I look forward to learning about your experiences!

Questions from google form:

Have you sought occupational and/or physical therapy specifically to help in your ability to play a musical instrument?

Would a website/ online space where you can 1) connect with other musicians with Parkisnon’s and 2) find therapists in your area that have experience working with musicans be helpful to you?

Do you believe involvement in music has impacted how well you manage your PD symptomes, and if so has this been positive or negative?

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I don’t know how I would manage life without music. It’s not only playing but also the social aspect of being involved in bands. My problem at the moment is that I am not able to consistently reach high notes and I’m sure that is PD affecting the muscles of my embouchure. A therapist who understands these issues and can suggest exercises/strategies to help would be fantastic. I had real problems with tremor before I started on Madopar but (for the time being at least) that has gone away. I play tenor horn and french horn.

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Although I am only an amateur musician, music is a crucial part of my life. Learning the piano makes me focus on my hand co-ordination and concentration levels and playing bass clarinet in a wind band helps too. It’s not just the social aspect, but again concentration is crucial and the bass lines of band music are more accessible for hands that can’t move quite as quickly as before

I am a retired music teacher. It is almost seven years since I was diagnosed. My first instrument is piano and I am still able to play, apart from off times when the stiffness of movement is a problem. I have experience in choral directing and just before I was diagnosed, was asked to lead a local community choir. At the time, I thought I might manage to keep it going for a couple of years, however I am still going seven years later! My choir now has 150 members and we do concerts twice a year, all of which are sold out. I am sure the music has been a major factor in keeping going. I am constantly amazed that I am still able to enjoy music and its undoubted benefits in dealing with this condition. I still try and play piano daily and the choir is a great source of encouragement and support, along with my very supportive husband and family.

Hi everyone, I am completely new to this (and any other) forum, and also new to Parkinsons Disease, having been diagnosed last May. So forgive my lack of skill in navigating this process.

I am a drummer, with moderate capabilities, but PD has impacted my ability to use drumsticks as I should, and I have had to withdraw from various bands, some of which were gigging regularly, playing jazz/rock/pop etc. However, I can still keep time, and have been using various forms of hand percussion to continue involvement with some groups of musicians.

I really miss collective music making, and wondered if there were any “ex” musicians within reasonable distance of where I live (Reading) who were in a similar situation: no longer able to play our instrument at the pre-PD level of competence and enjoyment, but still able to create music in a less demanding setting. I should say that I am no classically trained musician, but enjoy playing most genres of music with some sort of beat, and I hope that there might be some like-minded musicians out there who share some common ground. I’d also be very interested to hear from members living further afield from me who have attempted a similar thing, or indeed have their own experiences of trying to continue playing while PD has eroded some of the necessary physical skills.

Thank you!

Andrew

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Hi Andrew,
We just noticed this was your first post so we wanted to say hi and welcome you to the forum. You’re sure to hear from our lovely community soon, and it’s a good bet there are some musicians amongst them, especially judging by the attention given to our suggested songs section. We’d like to make sure you’re aware of our website at https://www.parkinsons.org.uk/ and our free and confidential helpline at 0808 800 0303. The helpline in particular is a great way to find local resources, including activities groups, so please do reach out if you like.
Best wishes and warmest welcomes,
Jason
Moderation Team

Hi Andrewlast
Have been playing a melodian for around 4 years now.
I also find I cannot play music by ear and have to resort to sheetmusic . Anything too fast is impossible . I beleive this is not only down to rigidity but also my brain to hand coordination . Does anyone find the same? Cheers Kram

Hi Andrew. I’m an amateur bass guitarist, live in Caversham, diagnosed a couple of years ago. Stiffness in right arm is a bit inconvenient, but I still play a bit. Ben

Hi,

I am a drummer and have just been diagnosed with PD after speaking to a Dr about the fact that I was losing the ability to play certain rhythms on my drum kit with my right hand and right foot. I have been able to continue playing by using some work-arounds but am concerned that these will only work for me for a limited time. I find the faster rhythms are the most difficult to maintain with this condition. I’d be happy to contribute to any research that would result in some future support for musicians and the wider PD community.

Hi @Rael and welcome to our forum. You’ll find everyone here very friendly and I’m sure some will be along soon to answer this post. There are other musicians here so you’re in good company.

How wonderful that you’d like to take part in our research. You’ll find these pages good first steps to getting involved: Take part in research | Parkinson's UK and
Volunteer to help shape research | Parkinson's UK. Explore them at your leisure.

I’d also invite you to read through the information for anyone with a new diagnosis. Our helpline is a great confidential service for anyone needing support and advice for Parkinson’s so give them a call on 0808 800 0303 should you need them.

Best wishes,
Janice
Forum Moderation Team

I am by no means a professional, although I have had musicwith me all my life. Although I am now limited in chord range on my guitar I have found a creative capability that had been very dormant. I have replaced the actual instruments with software, which allows more feeedom and means mistakes can be simply re-recorded. I use a well known app you could store a car in…

My father is diagnosed with Parkinson’s and he is very sad that he cannot play the guitar now. I recently won at content removed by admin and decided to send him on a medical vacation. I hope that he will be happy.

Hi looking for a wee bit of advice. Started relearning guitar a few years ago, I’m a lefty by the way, as lefty guitars became easier to find and cheaper to buy. I noticed that i was finding it more difficult to make chords. I’m hoping someone can give me advice on exercises to help my fret hand. At the moment I’m using some easier (normally 2 fingered) chords but would really like to try and get back to using regular chords.
Thanks for any help or advice offered

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I find that soaking my hands in hot water for 10 minutes before playing quite helpful.

Hi Lemom
thought about it but would soaking my fret figers not ruin the calluses that I’m just starting to develop again. But I will give it a try, usng my chord cheat mode.

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Hi Ben
Many apologies - I’ve only just picked up your post and should have got back to you sooner! It sounds as if you might be just the person to get together with - bass and drums, very local, ideal starting point for a band! Why don’t you give me a call on 07813 193038, or email at [email protected] (that’s “andrewlast” without the “e”!) to see if we can take it further. BTW don’t get too high expectations of my drumming - I rarely play a drum set these days, but hopefully what I can do with other percussion might be sufficient…
Look forward to hearing from you
Best wishes Andrew

Hi Rael
Apologies I’ve only just seen your reply to my post: sounds as if you are in much the same situation as me - in my case, finding it was getting more and more difficult to maintain timing and dynamics with my left hand, especially things like shuffles and jazz comping. I’ve now virtually stopped playing drumset, but continue to play a Cajon and other hand percussion with some tolerant musical chums. Like you, I’d be very keen to get involved in research about PD in drummers - our neural pathways must be a bit weird, give our four-limbed (five if you include counting) co-ordination/independence thing!
Keep in touch and keep playing as long as you can…
Best wishes
Andrew