Voice therapy – a personal journey

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Koen Van den Brande CSO

If there is anything that really scares me about PD, it is the possibility that I might lose my ability to communicate …A few years ago, whilst attending specialized Iyengar yoga classes for PD in Mumbai, I met Merwan. He had been – like Mohammed Ali – a boxer and his motto was to always fight back … He was in his seventies and still fighting, but I saw in his eyes his deep frustration as he tried and failed to get out a few words, inviting me to come and see his iconic Yazdani bakery in old Mumbai Fort.

https://www.patientsengage.com/personal-voices/parkinsons-will-not-have-me

He was proud of having completed at age 76, a 6 km ‘marathon’ and pointed out the images of body builders on the restaurant wall … I am sure a picture in his heyday as a boxer was there too …

https://timesofindia.indiatimes.com/city/mumbai/in-passing-of-yazdanis-zend-city-has-lost-a-master-baker/articleshow/80219749.cms

I went back there a few times and enjoyed the traditional sweet tea with a crusty roll, but did not meet him again as he faded into the background. If there was ever any doubt that you can live a long life battling Parkinson’s – he fought on until 86 and passed away in January 2021…

He made a lasting impression on me – more than any of the PwPs I met on that three week yoga course which gave me a first glimpse of the range of symptoms one might expect.

He was the reason I sought out a voice therapist after having been told that my voice might deteriorate post my DBS implant …

Mrs Lee Silverman was the first PwP to take part in the Voice coaching programme at the University of Colorado Boulder and the program was named LSVT – Lee Silverman Voice Treatment – by Dr Lorraine Ramig in 1995.

https://en.wikipedia.org/wiki/Lee_Silverman_voice_treatment

There are several commercial offerings based on the 4 week intensive programme which was the basis of a study showing that neural-plasticity, the ability of the brain to grow and rearrange neural pathways, could be used to overcome some voice deterioration in PwPs.

So I was delighted to find an LSVT Loud trained  and certified voice therapist in Mumbai.

I signed up, paid the – for India – hefty fees, underwent the very unpleasant examination of my vocal chords by a laryngologist, visited once a day for my session with an assistant who was being trained, was told to download mobile phone apps for measuring pitch and loudness, did my daily home exercises and to have a basis for progress reviews, set up a spreadsheet to record details of every exercise … Sadly, the progress reviews rarely took place … so I still don’t know how ‘progress’ is measured …

Extracts of my spreadsheet …

The assistant helped me carry out the exercises correctly and I learned to improve my ability to modulate my voice pitch and loudness by looking at an app giving me near real-time feedback…

Typical general purpose voice app to analyse pitch and loudness …

The assistant helped me with another problem. I had already had one incident of aspiration – breathing in one of my tablets – and I regularly ended up in bouts of coughing, as I had problems with drinking and even my own saliva at times. She taught me how to drink liquids in a safe manner, by tilting my head forwards and slightly to the right – my PD affected side.

I am sure that the scarcity of reviews with my trained and certified voice therapist do not reflect the effectiveness of the LSVT LOUD programme per se and rather was an isolated case, but it did make me want to find a way to capture my efforts in a better way than my spreadsheet … so I would have the ability to get someone else to review and post-DBS, assess the impact …

Hence when I went to the WPC in Kyoto to present my KoDe Health poster, the associated demo of my Alexa-based voice activated proposal included an integrated voice therapy set of real-time loudness and pitch graphs …

Meanwhile I had started to worry – not just about the practicality and acceptability of a commercial voice-agent like Alexa but more so about how to adapt to a PwPs deteriorating voice. This was bought home to me personally, after my DBS implant, as I noticed that my voice slowly started to slur and my ability to speak in public with confidence declined …

This was particularly poignant for me personally because my ability at the height of my career to enjoy standing on a stage and engaging an audience to listen to what I was saying, had been hard won…

At the start of my career in banking technology, as a programmer, I had literally lost my voice trying to say something to a group of colleagues. It was as if air went past my vocal chords without me being able to produce a sound … Rather than deciding that speaking in public was just not for me, I recognized that this was likely to limit my career and instead started to volunteer for speaking opportunities – with my heart beating in my throat as I did … Over time I learned to do it and after a while to enjoy it …

So am I regressing ?

Is there a way to measure this ?

I first heard about the work being done by Max Little based on analysing smart phone voice data in a conversation with the team which put IBM’s Watson to work on reading PD research papers … 

I was introduced to Max, who is a mathematician and teaches at the Aston University in Birmingham in the UK. He featured with some of his work in a DW documentary about AI.

https://youtu.be/s0dMTAQM4cw  watch from 9:30 onwards

To date there is no test to measure PD … but what if voice could be used as a source of biomarkers … ?

Now, this is potentially where it all comes together …

We have placed both Voice Therapy and Voice-activated Agents on the NeuroPath roadmap.

If, by helping PwPs, we can get sufficient voice data to both identify relevant biomarkers and eventually apply machine learning, we may be able to measure how PD progresses and how to optimize the effectiveness of the voice therapy … 

These graphs are some of the things professionals look at when they look at voice symptoms …

A review of the latest research by

… funded by NeuroPath, suggests it may be possible to find biomarkers for PD ….

I may need to learn an entirely new vocabulary but I did spot this on my fist attempt …

We may even be able to find a way to compensate for voice deterioration so I can avoid the fate of Merwan Zend.

Things are moving fast.
I would love to speak to CPT-3, to find out what it already knows about PD.
I am lucky, I speak English …

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