The EPDA looks at how a vibrating metronome designed for musicians has encouraged person with Parkinson’s Kristen Grey to explore these types of products
When the makers of Soundbrenner Pulse, a vibrating metronome, launched the product for musicians, they didn’t imagine it might be of interest to people with Parkinson’s (PwPs).
But when speech-language pathologist and PwP Kristen Gray discovered the device by chance, she noticed an effect on some of her symptoms. Although the product was not meant to be used for relieving symptoms of Parkinson’s, and has not been tested for this purpose, Kristen says the experience has encouraged her to try out other sensory products to see if they can help.
However, the Pulse isn’t a cheap purchase (USD99) and was not designed with PwPs in mind – so how beneficial could it be to those with symptoms such as tremors?
The EPDA spoke to the creators of the metronome, to PwP Kristen, and to a physiotherapist, to get an idea of how these types of products might be helpful to people living with Parkinson’s.
Florian Simmendinger, CEO and founder of Soundbrenner, is based in Hong Kong.
“The Soundbrenner Pulse is a vibrating metronome that was designed for all musicians. Instead of having to listen to the annoying click sound of a regular metronome, it allows a musician to literally feel the beat. It helps them to keep a steady tempo and makes for an excellent practice tool. The vibrations are seven times more powerful of most other smartwatches or smartphones.
“We actually never considered an option for people affected by Parkinson's. We only learned about it when people started self-experimenting with the vibrations and wrote us about their experience. This news quickly spread in our company and we were blown away!
“It was not designed specifically for people with Parkinson’s, and so we have not tested it in this way. However, we know of one study using the Soundbrenner Pulse, called Wearables for Long Term Gait Rehabilitation of Neurological Condition by a team of researchers of the Open University in Milton Keynes in the UK.
“While we do not have any announcements yet officially supporting its use for Parkinson's, we would encourage anyone who is curious to research more online and read the study mentioned above. Besides this you should of course consult your doctor.”
We actually never considered an option for people affected by Parkinson's. We only learned about it when people started self-experimenting with the vibrations and wrote us about their experience
Kristen Gray, 48, lives in Ponte Vedra Beach, Florida, USA, with her husband Eric and two daughters, age 14 and 15. She is a retired speech-language pathologist (SLP).
“In 2014, I began to notice a twitch in my finger as I was driving my girls to school. The twitch was infrequent, but over that summer it developed, involving more of my hand. I had a series of appointments with healthcare professionals over the next few weeks, as my hand began to shake more frequently. I’ll never forget when the neurologist said ‘I think you have Parkinson’s disease’, but I knew I could find a way to live well with the condition.
“In 2016, I raised USD$12,000 to start an affiliate of the Rock Steady Boxing program in my new hometown of Jacksonville. The following January we opened our doors to nine fellow Parkinson’s fighters and now we have over 50 active members!
“In an effort to help one of my fellow fighters with his rapid speech pattern, I came across the Soundbrenner Pulse vibrating metronome. The device is able to provide visual, tactile, and auditory rhythmic cues, and there’s a mobile app allowing you to program which cue you prefer including flashing, vibration or sound.
“At home, I turned the device on and began investigating how to use it. But when I went on to do some work around the house, I noticed that as I moved out of range from my phone, the device stopped, and my tremor started. Unexpectedly, it had an impact.
“I was pleasantly surprised that when used at a lower beats-per-minute (bpm) of around 90, it not only reduced my tremor, but also had an overall calming effect. I find it helpful to reduce my tremor when doing daily tasks, especially when my tremor seems more pronounced than usual. I like to set mine to the strongest intensity and longest duration to get the greatest input. In higher stress or exciting times, however, this device doesn’t seem to be as effective. Unfortunately, it didn’t seem to be powerful enough to effectively help my fellow fighter’s rapid speech pattern.
“I think if a person struggles with tremor while driving or dining, for example, this can help. Several of my fellow Rock Steady Boxing fighters with tremor found it to be helpful in situations such as that.
“My advice to other PwPs is be open-minded and creative when looking for ways to ease your symptoms. There are a variety of products on the market targeted for other uses which might be helpful. Vibration is known to have a calming effect on people and is often used to reduce anxiety.
“I have since branched out to try other, larger devices, to help during more stressful times. For instance, Hyperice’s Venom vibrating back massager provides a more full body experience and effect. In addition, weighted vests and blankets could have a calming effect.”
I was pleasantly surprised that when used at a lower beats-per-minute of around 90, it not only reduced my tremor, but also had an overall calming effect
Susanne Brühlmann is a physiotherapist who has worked with people with Parkinson’s since 1999, and has been a certificated LSVT Big trainer since 2010. She works in a leading Neurological Rehabilitation Center in Switzerland with a special unit for 23 Parkinson’s patients, and was member of the Association of Physiotherapists in Parkinson’s Disease Europe (APPDE) from 2000 to 2018.
“I first discovered electronic and vibrating devices through articles and workshops led by Alice Niewbeur, Samira Keus and Mariella Graziano, more than 10 years ago. Alice is the leading specialist in cueing using tricks and cues to reduce freezing of gait.
“She was testing a prototype tool with vibration which was very discreet – the noise of auditory cueing often attracts attention or means the person has to use headsets – but unfortunately as far as I know it did not reach the market.
“We use a normal metronome (walking in time to a metronome beat) and other auditive cueing methods, which led to bigger step length and overcoming freezing situations. From my point of view, the metronome is an easy device and training tool which improves mobility and quality of life, but it works through auditory perception and not by tactile vibrating perception.
“A vibrating tool could be better because it is also discreet, and it is good to have choices. Every person reacts differently to cueing and needs different solutions. I saw the video about the Soundbrenner Pulse device which is very impressive, but I have no practical experience with that.
“The Soundbrenner Pulse sounds like it might work, but I do not know of any scientific research for its benefits to people with Parkinson’s. So before buying it, I think the person should have the opportunity to test the device with a professional physiotherapist or occupational therapist who could give advice about cadence and use (maybe by following the criteria for auditive cueing) until there is evidence showing the benefits of vibrating tools for Parkinson’s.”
- Soundbrenner website
- Islam R, Theodoros G, Holland S, Price B A. Wearables for Long Term Gait Rehabilitation of Neurological Conditions, 2018 – research paper
- Video demonstrating the use of the Soundbrenner vibrating metronome by Rock Steady Boxing Jacksonville
Have you tried using a vibrating device to help with your Parkinson’s symptoms? Email firstname.lastname@example.org and tell us your stories.
The EPDA is sharing this article for information purposes only; it does not represent the EPDA’s views and is not an endorsement by the EPDA of any particular treatments, therapies or products.