Music and Ménière’s Disease

Alan JacquesAlan Jacques is a musician based in Edinburgh. He was interested in talking about his experience of changes to his perception of music as a result of Ménière’s Disease, a rare progressive disorder of the inner ear. Read his story below:

 

 

“I am a retired psychiatrist living in Edinburgh.  I retired early with a view to pursuing a lifelong interest in music.  I am a pianist and gained the ATCL and LGSMD in Performance shortly after retiring.  My particular interests have always been in accompaniment and chamber music and I have considerable experience of public performance, both on the piano and as a choral singer and for a short period a not very competent choir conductor.  My musical abilities are circumscribed: I am a good sight-reader and enjoy the interpretative aspects of reproducing music, but I am poor at memorising, improvising, or creating music.  And I have never had much ability to ‘hear music in my head’.

“Looking back I wonder if I have always been hard of hearing in my right ear, since when Stereo arrived to the great excitement of musical teenagers I never could work out where the various instruments were.

“About twelve years ago (aged 58) I began to develop Ménière’s disease with all the usual symptoms of fullness in the ears, tinnitus, hearing impairment and severe dizzy turns, and the characteristic very variable course.  I am now moderately-to-severely deaf in both ears and constantly require hearing aids.  About two years into the illness I began to notice a problem with pitch perception – I wrongly accused a highly competent singer of singing the wrong note, for example.  I then noticed that I heard different pitches if I listened to a tuning fork in each ear.  I only recently learned that this is called diplacusis.  Like the illness, it was very variable.  At its worst, I couldn’t recognise music I was listening to because I was hearing all the wrong notes.  A striking example was a wedding I went to ten years ago where the choir sang Parry’s I Was Glad, which I have sung hundreds of times – I had to ask what it was they were singing.  At best there were times when everything got largely back to normal, though even then I noticed that when I moved from playing one piece to another it took me a few bars to register the tonality.

“Things have got steadily worse particularly in the last two or three years and I appear to be now permanently at the worst level.  If I play a note several times I can sing an approximation to it, but if a tune is played I cannot recognise it unless by inspired guesswork.  I cannot recognise chords, can’t tell major from minor, cannot understand modulations, and have great difficulty even in guessing what instrument is playing in broadcast or recorded music.  Concerts are a no-go area, because they just sound like an awful cacophony. This is not just a problem caused by my hearing impairment itself, for I hear the noise of music.  It’s that my cochlea is sending the wrong messages to my brain.  Interestingly I sometimes hear a note related to the note I am playing (e.g. a fifth out), but more often it is just a pitch-less noise.

“My musical brain is as far as I know working perfectly well, indeed possibly overworking.  MRI scans and neurological tests confirm that this is a purely cochlear problem.  What I am noticing about the mental element in ‘hearing’ music is that my brain is, as it were, ironing out the messages it is getting, so simplifying what I appreciate.  When the music modulates I ‘hear’ it in the first key until it finally gets through that I’m in the wrong zone.  The other example of my brain being creative is in the difference between familiar and unfamiliar music I am playing.  With very familiar music I somehow imagine that I am hearing the tunes and some of the harmony, but if I try to play an unfamiliar score it is completely meaningless.

“I have continued to play throughout my illness and my teachers say I am producing a more than acceptable and improving musical performance.  To me it is a noisy clatter.  I had to give up all ensemble playing two years ago, but this was actually more to do with the fact that I had had to cancel two performances because of Ménière’s dizzy spells and, the last straw, had a dizzy attack in the middle of a public recital and had to terminate the performance.  I am now concentrating on solo playing and for example am now on my fourth cycle of studying the Beethoven sonatas and am performing them one at a time at a local little music club.  In the past year I have found it necessary to stick almost entirely to music that I know to some extent – I simply can’t make sense of unfamiliar music.  I surprise myself with how much I enjoy playing, though I do wonder how much of that is a lifelong habit rather than present experience.

“I would be interested in meeting or corresponding with other musicians with similar problems.  I gather that diplacusis is a much commoner problem than I thought – a survey of British orchestral musicians is said to have reported it in 5% of respondents with 12% experiencing distortion (Laitinen & Poulsen, 2008). I know that the needs of hard-of-hearing and deaf musicians are at last being addressed, but I guess I am not the only musician who has this severe form of ‘cochlear amusia’.  I have only located one other person with the problem through the Ménière’s Society (he had felt forced to give up his musical life), but I intend to try again.

Alan Jacques

June 2015

Laitinen, H., & Poulsen, T. (2008). Questionnaire investigation of musicians’ use of hearing
protectors, self reported hearing disorders, and their experience of their working environment. International Journal of Audiology, 47(4), 160-168.

It seems to me that music perception is a very complex process. Our brain works hard to make sense of musical information and, when things go wrong, our auditory brain can to some extent ‘fill in the gaps’ but not perfectly.

Alan’s story reminded me that the amplification of acoustic sound and music using hearing aids is only one part of the process – there is always a person at the end of the technology.

If you want more information about Ménière’s disease, please see the Ménière’s Society website.

Or to share your experiences, click to our Discussion Forum and tell us more.

RF

Hearing aids at the Thackray Medical Museum

Thackray logoGoing back in time: hearing aids through the decades

In March this year, just a few weeks into our project ‘Hearing aids for music’, the project team visited the Thackray Medical Museum in Leeds.

We wanted to learn something about the history of hearing aids from the important collection of amplification and audiology equipment housed there.

But we also had another agenda… We wanted to see if there was any evidence in the collection of hearing aids having been used to amplify music – not just speech.

Read moreHearing aids at the Thackray Medical Museum

‘Hearing aids for music’ project secures £250k AHRC funding

ahrc-logoThe School of Music at the University of Leeds is celebrating as Dr Alinka Greasley has secured a significant research grant from the Arts and Humanities Research Council.

Dr Alinka Greasley is a Music Psychologist who has secured an award of £247,295 for a project that will explore the music listening behaviour of people with hearing impairments.

The three year interdisciplinary project will bring together researchers in the fields of music psychology and clinical audiology and represents the first large-scale systematic investigation of how music listening experiences are affected by deafness and the use of hearing aids.

She will lead the project accompanied by Co-Investigator Dr Harriet Crook, from Sheffield Teaching Hospitals NHS Foundation Trust and Dr Robert Fulford, Post Doctoral Research Fellow in Music Psychology at the University of Leeds.

The research will benefit from the input of a highly esteemed advisory panel consisting of academics and practitioners with expertise in auditory processing, signal processing, HA fitting, HA manufacturing, hearing therapy and deaf education.