• Musician with PD

    Posted by RosemaryG on June 28, 2023 at 1:01 pm

    My partner, aged 80, diagnosed with PD a year ago is a musician (sax, clarinet and flute). Finding fingering and throat issues. Does anyone know of program that might help? He played professionally before diagnosis and practices every day.

    RosemaryG replied 10 months ago 14 Members · 17 Replies
  • 17 Replies
  • Wobblygirl

    Member
    June 29, 2023 at 10:25 pm

    I hope you get some good suggestions. I’m nearly 80 and play French horn and tenor horn – although at nothing any where near professional standard. Five years ago when I was first diagnosed I couldn’t play anything because of the tremor, but Madopar calmed it down so I could get back to the bands. I do find though that my brain and fingers don’t seem to synchronize as quickly, and really fast passages are beyond me. I’ve dropped back several seats – and I must say I’m finding it stress free and more enjoyable. At least I can still play.

    Having said all that, it must be devastating for someone who was a really good player. Fingers crossed that someone comes up with a solution.

     

  • Judy Kay

    Member
    June 30, 2023 at 2:32 am

    Hello,

    Thank you both for posting.

    I have the same problem with my brain and fingers not working very well together.    I signed up for a couple of different piano courses on line.  They seem to be helping me get my fingers and brain working together somewhat.

    I started playing piano at 42 years of age and had lessons for 27 years, in which I practiced  a minimum of 2 hours a day, and up to 6 or 7 on various days of the week.  I loved practicing and learning new songs and at one time I would have loved to be a professional pianist.

    Now, at 76,  I can not  play a single song and it is a lot more challenging than before, I must say.

    I would really like to be able to play again, because I love music and can no longer dance and can barely walk with two sticks.

    I wish you well, and hope someone will come up with an answer soon.

    You two will be my inspiration to not give up.

    Judy

     

    • greg lintz

      Member
      July 12, 2023 at 9:55 am

      I would reiterate some of the other messages on this topic- never give up hope.

      I am 66 and was diagnosed in 2018. I have played the drums for over 50 years. That year I wrote a letter to the people I played with saying I have to stop – I cannot play anything. I sat down at the drums once in a while but it was quite discouraging,

      Then, in the fall of 2021 I noticed that more  often than not when I tried to play I could do much of what I used to. This culminated in going to a jam and playing in public for the first time in several years. Which lead to more appearances and auditioning for the band I quit in 2018 who re-hired me.

      I am now playing gigs in public again. I have to be very aware of timing medications properly to avoid a “crash” which can make it very difficult but for the most part it has gone well.

      One of the replies mentioned the social aspect. that is very important. I am grateful for wonderful musician- friends who organized jams and invited me to play even when I could not do much; and prodded me to get out in public again. And recently had me  rehearse and  record an album of originals with them.

      As hard  as it is do not give up- you never know.

       

      • D Hutchins

        Member
        July 16, 2023 at 11:09 am

        The most difficult aspect of the Pandemic for me was the isolation and the inability to make music with others. Olympia, Washington, where I live, has a wonderful Music Mends Minds program. It attracts musicians of all types who share a love of music with each other. Instruments range from the human voice to clarinets, banjos, shakers, guitars, violins, lap harps, mandolins, ukelele, a piano, harmonicas, and others. All are welcome, and music titles include folk, rock, spirituals, show tunes, and others that are suggested by the participants. Best of all are the opportunities to make new friends and savor old memories that the music within us all can generate.

        Carol Rosenstein, Executive Director and Co-Founder of Music Mends Minds, lost her husband to Parkinson’s Disease. She saw how transformative music was when her husband sat down and played the piano. That was the inspiration for Music Mends Minds. (https://www.musicmendsminds.org/carol-rosenstein) Thanks to an ever-growing number of partnerships, this program is spreading geographically, and includes live bands (https://www.musicmendsminds.org/musical-support-groups).

        Find the music that fills you with joy and embrace it!

  • Robert Brown

    Member
    July 5, 2023 at 12:22 pm

    I am 76 years old and have been a musician since age 10, when I joined 5th grade band. I played trumpet through junior and high school and during one year of college until music was no longer part of my study curriculum. I continued to play informally with dorm mates, and later military friends, and a few years later with church and community bands. At age 50 I gave up the trumpet in favor of the guitar, which was more versatile than a wind instrument. Bifocals played a big part of that’s switchover. An important part of my lifelong fascination with music was my ability to play most anything by ear, first on the trumpet and later the guitar. That ability came in handy with small informal gatherings of people. But it also provided a way around reading complex musical scores.  Due to a  certain degree of dyslexia, I struggled with reading anything. Nowadays, due to the 4-year onset of PD I’ve given up trying to read books. I can still play guitar by ear (I don’t read any music writing for guitar) but increasingly, I have trouble with brain-hand coordination. I sometimes lose control of the tremors and my strumming hand goes a little crazy! The thing that interests me today is the timing of this topic in my inbox. I planned to resign today from the only remaining musical group (after 13 years). My PD induced faltering was coming through loud and clear from an amplified guitar. My current plan is to practice with backing tracks and accompaniment CD’s.  Hopefully it will provide some personal enjoyment although half the satisfaction for me is the social aspect. If I don’t lose interest after time, I would like to work with musical accompaniment software such as Band-in-the-Box. It’s very fortunate that such technology exists. If you miss the musical group interaction, there may be some Zoom gathering of musicians. I’m not sure. You will have to enlist the help of a kid to learn your way around! Above all, don’t give up. I don’t believe it’s quite as severe as a”Use it or lose it” scenario. But it’s harder to pick it up again after a break. During the past Memorial Day I played Taps, in front of an audience, at a dusk celebration, by dusting off an old pawn shop trumpet . It was my first time playing anything in nearly 25 years. It was not a flawless performance, by any means. But it proved to me that in spite of PD, it can be done. Bob

    • Judy Kay

      Member
      July 6, 2023 at 4:22 am

      Hi Robert.

      I just spent over an hour putting my thoughts together to tell you how much I appreciate your response and why.  Then I clicked and lost it all and cannot retrieve it.

      Now I have to go to bed.  But before I do, I would like you to know I value your information and  will do my best to stay motivated, because it really is something I would like to accomplish.

      Hope you can stick with it too.

      Thanks again,

      Judy Kay

       

      • Michael Pfeifer

        Member
        July 19, 2023 at 8:50 am

        If I only had a dollar for every comment I have accidentally erased….I’m pretty sure some of them were good.

         

  • Fabio

    Member
    July 5, 2023 at 2:33 pm

    I’m 47 years old and a professional guitar player for almost 30. I got diagnosed at 41 and by the time I was 45, I couldn’t play a single note anymore, it was all gone, my career, and the thing I loved the most to do. Then I went for DBS, without any guarantees or expectations that I’d be ever able to play as a professional, maybe I could strum the guitar again and that would be all. Well, life is full of surprises and sometimes good ones. My surgery went so well that I’ve recovered basically 100% of my playing, over the last year and a half I had the chance to play festivals and other smaller venues, taught countless hours of lessons in my music school, and right now, I’m doing recording sessions 8 hours a day for an album of another artist. I’m aware I’m one in a million cases, I’m extremely blessed! But I know VERY well how it feels not being able to play. And my advice is to try to write music. This way was the only way I could find to express myself musically and getting great results. I know how after a certain age, leaning how to use a computer software for music notation can look daunting but it’s not that hard if you have a good musical education. In the case of a sax player, even not writing original pieces, but writing arrangements for horn sessions, let other players do the heavy lifting, do the brain work! I composed two full albums of new music in what I call my “shaky days” that I intended to invite other players to record for me, but now I’ll have a chance to record myself! I hope this idea can be helpful, or at least, sharing my story can give hope to other people that, even though our fates are not in our control, life is not only made of bad surprises.

  • Robert Brown

    Member
    July 6, 2023 at 11:51 am

    Judy Kay,

    I am on my THIRD  attempt at responding to tour reply to my message! A low battery shot down two previous attempts. So I know how it feels to lose a lengthy message that, at the very least, took a degree of effort to write. To me it always makes me feel like I lost that amount of time from the ticking clock of my life. Those clicks become more precious by the day!

    Anyway, I’d be interested in what you have to say if you want to give it another shot. It’s disheartening to lose things like that! Bob

     

  • John Citron

    Member
    July 6, 2023 at 2:49 pm

    I’ve played piano since I was about 5 or 6 years old and had my first lessons when I was 7 years old and I continued to study seriously for decades. In 2009, during the Great Recession, I became a music major for a year at a local university. I was diagnosed with PD and given the official badge in 2012 followed by 2014 when the US Gov’t recognized that and gave me my disability payments after I could no longer work.

    During this period as symptoms increased, I have found that there are good days and bad days. On the bad days, my fingers don’t talk to the brain and want to do their own thing which makes playing frustrating. Playing a simple passage becomes a minefield of mistakes as I miss notes, or sometimes have hands play totally different things.

    On the good days, it’s like I don’t have PD and I can accomplish what I want to do, albeit, a bit slower than I used to play. This is actually okay because playing slower allows me to focus on the beauty of the music which is lost when playing too fast, which is the thing these days. Pianists today feel they have to show off and treat music like a sporting event rather than something of beauty. The slower playing, meaning not crazy fast, gives us time to hear the music and savor it like tasting good food or enjoying the view from a train or car as we ride along.

    Since I am an avid sight reader, I have a collection of books that I hardly use today because turning pages quickly becomes a really, really frustrating ordeal due to that annoying hesitation and inability to grab the page quickly and I have set myself up with a Dell All-in-One PC instead. This touch-screen computer, running Power Music Professional and a PDF reader, makes playing so much more enjoyable. After downloading and converting PDFs to PMP format, I can turn pages easily by touching the screen on the edges. Being a 24-inch display, it can display 2 full-sized pages of music and if I have to, I can zoom in to make details bigger if I have to.

    The biggest thing is never, ever give up. The bad days come and the bad days go. If things don’t go well, take a break and try again later or another day.

  • Glen

    Member
    July 6, 2023 at 2:59 pm

    Hello,

    I am 73 years old and started playing the alto saxophone about 15 years ago.   I am self taught, working my way through a lesson book.. Probably not the best way to learn, but  I stuck with it.   Along the way I got better horns and improved my musical skills.  About 6 years ago I joined the New Horizons Band in Santa Rosa,  Ca,  playing with 70 to 80 or so fellow senior citizens, the best thing I could  have done.   My PD has gotten worse over the years, but I still get to play with a great group of people.  I wouldn’t call myself a musician, but I can read music, and meeting twice a week with a bunch of musicians makes me happy.

    Glen Hirschberger

    • Ginni

      Member
      July 6, 2023 at 5:32 pm

      I am a true music lover. My husband of 28 years was a master of Classical Guitar, trained from a very early age. He had the great good fortune to be among the few to study with the late great Andres Segovia. Robert made classical guitar his career.
      About 12 years ago he was diagnosed with Parkinson’s, and continued his beautiful music for a few more years. Although his progression was very slow, one day came when he just stopped. Quit. Never picked up a guitar again. No explanation, no discussion. There are at least 5 fine instruments sitting in the closet.
      In the last year or two his symptoms have really increased. He will do nothing for himself. Nothing. He cannot walk enough even to see a doctor. We are completely isolated, no friends, no resources. Just one house-helper two or three times a week. He won’t let her into his room to clean.
      There is no music in the house. None. He stopped even listening to music a very long time ago. Although my health isn’t great, I am his only caregiver. I try to keep a small flame of joy alive in my heart every day.
      Blessings to all of you for the music in your lives!

      • Judy Kay

        Member
        July 18, 2023 at 3:22 pm

        Hi Ginni,

        Sorry too hear that you, as a caregiver, cannot get out or have friends in.   And no music?

        Where do you live?

        Can you not listen to music yourself?

        Hope your situation improves.  I know how hard this must be on you and your spouse. I was diagnosed in 2o19 and still get around, barely.  It gets harder and harder to stay focused long enough to accomplish the things I love to do and to stay involved with all the friends I have.    I can see how easily my husband and I could fall into the same situation, although at the moment, he is golfing.

        There are a lot of nice people in the world, however, that are there for you if you just reach out.

        Thank you for posting.

        Lots of love and well wishes to you and your husband,

        Judy

  • Alan M

    Member
    July 6, 2023 at 10:55 pm

    Like Bob Brown, I was a trumpeter from ages 11 to 18 in a school band and later in a stage band.  I also enjoyed playing along with “Music Minus One” vinyl albums on an old gramophone my mum had gifted to her.  Maybe this is the old fashioned version of what Bob describes as “musical accompaniment software such as Band-in-the-Box”?

    I sold my trumpet (a solid silver Getzen Doc Severson model) in 1976.  Never should have done this!  But hey, the impulse of youth often doesn’t make sense.

    As I learned of my interest in my Scots heritage, I decided I might like to try to learn to play the GHBP’s.  I purchased a stand of Norm Kyle highland pipes whilst attending Uni in Edmonton, AB.  It proved to be my nemesis, unfortunately — especially since I had no way of connecting with a tutor, nor the funds to support lessons.  Online stuff had yet to have appeal with the old desktop comps of the day (they were a jokes, and the old screaming Mimi modems were even worse!)  I became a forester in 1985 and toted the GHP’s around with me to all the one-horse towns and backwater settlements.  Lived mostly in remote communities and logging camps back in the day.

    Me pipes sat idle until 2018… when I gifted them to our local pipe band.  It took me 3 years to locate and purchase a set of “kitchen pipes” from a local fettler.  They failed me, so I decided to purchase a stand of Fred Morrison Scottish small pipes (SSP’s).  For the past 14 mos. I’ve studied at the knee of a renown tutor and Grade 2 piper located in Halifax NB named Michael Roddy.  He is a expert musician, teacher and piper playing the SSP’s, the Border pipes, and the Uillean (Irish) pipes.

    My fingering isn’t 100% when my tremors are triggered, but I can at least attempt to play a recognizable pipe tune that Michael has shown me (I learn mostly by ear).  I can’t live without music.  Celtic music.  Pipe tunes.  I love ’em all.

     

  • Bruce Crowell

    Member
    July 12, 2023 at 9:53 am

    I am 62 and was diagnosed in 2019.  I played trombone in Junior high and high school and a few years ago picked up my horn and began to play.  Played in a small church group and then started playing in a community orchestra this year.  I was surprised I remembered as much as I did.  I found the community orchestra very forgiving and acceptable of all level of musicians.  This was great therapy for me as my symptoms got worse a few months ago.  One issue I had was some episodes where I could not form the embouchure to produce the buzz at the mouth piece.  This was surprising.  After researching this a little, I came across some information that described a condition called focal dystonia that can affect brass players.  It has something to do with the brain sending signals to the muscles of the mouth.  There is a lot of good information on the web about this and even some videos on how a french horn player overcame this problem.  My episodes of this were very limited and I am still able to play and looking forward to starting up in early August for our next season.  I would encourage anyone to challenge yourself and get involved in a group to play.  It has been a blessing to me.

  • Judy Kay

    Member
    July 13, 2023 at 2:10 am

    Hi Robert,

    Sorry I have not had time to rewrite my story.

    Will get to it again one of these days.

    I am so happy to find this page again, but now it is 12:10 am here.

    Thank you again,

    Judy

     

  • RosemaryG

    Member
    July 16, 2023 at 6:41 pm

    Thank you everyone for sharing your experiences playing with PD. I will share your comments with him. He is learning to take it one day at a time. Some days the flute isn’t responding so he switches to sax and clarinet and visa versa but it’s all about accepting and taking each day as it comes. I wish he would meet up with fellow musicians but he doesn’t feel comfortable and it’s his journey and I’m just along for the ride!

     

     

     

     

     

     

     

     

  • Gauri

    Member
    July 18, 2023 at 12:39 pm

    Music and Parkinson????
    Ohhh wow 👍👍👍👍👍👍👍!!!!!!
    Fantastic
    How will I not speak about it!?
    I Gauri khare am music. I am born music. I eat music I sleep music. Music is my friend, music is my companion….music is my everything.
    I have learnt classical Indian vocal music. Indian classical music is a combination of history, literature, art, mathematics that makes it a multidisciplinary subject. As a subject we can learn the theory and practical part both simultaneously.
    In Indian classical vocal music one is required to match his/her voice with any one of the base notes starting from c# or a# or d# etc as per ones voice matching.
    The starting note is called Omkar.
    OM is the sound of cosmic energy and contains all the sounds in itself. The spiritual efficacy of OM is heard, not by the ears but by the heart. It surcharges the innermost being of man with vibrations of the highest reality.
    Chanting omkar is as good as a meditation and has healing power.

    • Alan M

      Member
      July 18, 2023 at 7:11 pm

      Kia Ora from New Zealand, Gauri!  What a lovely post you submit about music in our life.  It resonates so deeply in my experiences throghout my life — singing that is.  Music used to be the essence of my life in my late teens and early adulthood.  Notice I say “used to be”.  As I let my lack of  social graces and my inability to read musical score get the better of my progress.  Instead of living and breathing the heart & soul of what I engaged with, I got stuck in the process of “excelling” at making vocal music (i.e. sounding professional).  This stance is more about Ego than about living / breathing the essence of what our heart hears.  Do you agree?

      Unlike yourself, I don’t believe we’re all born musically talented.  I know I wasn’t.  I just love how most music transports the soul to heights no other means can possibly achieve.  This is evident in PD and Dementia patients at latter stages of the disease.

      Thanks for your beautiful words earlier.  It reminds me to not lose why I even started  listening to rapturous music throughout my entire life and of it’s truly healing nature.

      Namaste, Alan

  • Susan Gelles

    Member
    July 19, 2023 at 8:49 am

    Please check out music mends minds. They have zoom and in person sessions

    Specially for folks with pd and alsheimers and caregivers

     

     

     

  • Edward Fritz

    Member
    July 19, 2023 at 2:55 pm

    I was a classically trained pianist through my college years, and in my 60’s competed in several amateur piano competitions, having been a finalist in my last one (I’m now 73).The most annoying thing about my Parkinson’s is what the muscle rigidity in my left arm has done to my left hand technique. My suggestions are:

    Contact some of the Parkinson’s national organizations and find a “Big and Loud” therapy program in your area (or an online one if there is not one nearby). Parkinson’s affects just about all of the muscles in the body, and as it progresses your body will try to adapt to smaller ranges of motion. This is why you often see things like softer voices, smaller handwriting, etc. Big and Loud classes make you exaggerate your range of motion, including in the throat, which will increase volume of sound, and likely strengthen his breath for playing the flute, and possibly the muscles used in fingering. It will feel odd at first, and maybe difficult, but what feels like an exaggerated movement is actually normal range of motion for people without Parkinson’s.
    Also NEVER give up. I still go to my monthly piano club meetings. Some nights I don’t feel like playing, but I tell myself I’m not letting this damned disease take away this pleasure from me. I’ve eased off a little bit on some of the more technically challenging pieces, but there LOTS of other wonderful pieces in the piano repertoire that I love to play. And what I have found is that when I sit down at the keyboard I may have a visible tremor, but the moment I begin to play the tremor goes away and I play beautifully.  Plus I still get to enjoy the company of the group and the music of the others – maybe even more so than I did before.
    Don’t give up – adapt as necessary. I don’t climb trees anymore, not because of my Parkinson’s but because of my age. But I still enjoy the outdoors.  In fact I appreciate it more than ever!

    • RosemaryG

      Member
      July 19, 2023 at 4:14 pm

      Thank you Edward for your feedback. I will suggest that he speaks to his neurologist to see if there is a program near him in Fort Lauderdale.

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