Parky apps by Parky People

Two great innovations by members of the Parkinson's community

One common symptom of Parkinson’s is said to be apathy but sometimes when you meet fellow members of the “Parky” community that is difficult to believe. Take Kuhan Pushparatnam and Carl Beech, both of whom have refused to lie back and just accept what Parkinson’s throws at them. Each has come up with an innovation which could improve their own lives and those of many other Parkies.

CARL BEECH:THE BEECH BAND

It is just two years since Carl Beech was diagnosed with Parkinson’s at the age of 50, yet he has achieved so much for the community he risks making the rest of us feel inadequate. He is already chief executive of Spotlight YOPD, the charity lobbying for people with young onset Parkinson’s and now he’s come up with a quite remarkable gadget.

I was dubious when I heard that the device had something to do with cueing, the use of visual, auditory or physical signals to treat symptoms of Parkinson’s. I had seen a few examples of this working, like the Strolll visual cueing system I wrote about in July.

But I had also seen plenty of examples of gadgets, often devised by individual ‘Parkies”, which just didn’t appear to deliver what their inventors claimed. Then Carl Beech showed me his Beech Band in action with the demo you can see above and I was blown away,

For Carl, the most distressing thing about his Parkinson’s has been its impact on his voice, something he had begun to notice long before his diagnosis. For many years, as a church leader then through his work in development in Africa, public speaking has been a key part of Carl’s working life. But not only has his voice become a lot weaker, his speech has slowed down and become more and more disjointed. This, he says, is not just a practical problem, it leaves this usually positive character feeling seriously depresssed.

After noticing that things got slightly better when a friend put a hand on his shoulder as he spoke, Carl developed a technique which involved him tapping himself on the chest. After a while he found that a constant tapping at a rate of between 60 and 70 beats a minute seemed to work a treat.

The next step was to construct a device which would help others to use this technique. He contacted a friend who ran a small technology company and together they quickly came up with what looked like the least smart of smartwatches - all it did was give the user a gentle buzz on the wrist between 60 and 70 times a minute.

Carl says the device then proved effective on a range of people, not just in improving their speech but in some cases helping them to walk better, or reducing the impact of a tremor. He sent me a number of videos of people using the device and apparently seeing great benefits from it.

But it was only when I got my own demo, with Carl suddenly speaking fluently within seconds of switching on his Beech Band that I began to be convinced. The fact that Parkinson’s UK has now provided some funding to enable further consumer testing of the device also gives more credibility to Carl’s efforts.

Now , I can hear the sceptics say this is all the placebo effect - it only works because Carl Beech and others believe it is going to work. But even if that turns out to be true - so what? If the placebo effect can help me walk or speak better, then maybe NICE should clear it for prescription on the NHS?

KUHAN PUSHPARATNAM:PARKINSON’S ON

Kuhan was diagnosed with Parkinson’s in 2013 at the age of 38. He has a long track record of innovation, starting a website More Than A Tremor, and the podcast 2 Parkies in A Pod which he presents with former Sky Sports presenter Dave Clark and when I first met him a couple of years ago he was already at work on an app.

Now Parkinson’s ON has been given the official seal of approval by Parkinson’s UK and is available for free download on the Apple and Google app stores. The app is designed to be a multipurpose companion for people with Parkinson’s. It has a simple intuitive interface and is easy to set up - you list your symptoms and medications and can add your carer if you wish to give them access to your information.

You are then encouraged to record your daily experience of Parkinson’s, rating your symptoms, logging your medication and deciding whether you feel you are ‘on’ or ‘off’, in other words whether your drugs are working. There is also a wealth of information and advice you can consult on every aspect of the condition.

Nine months after it was launched the ON app has been through many iterations and now has over 2,500 users. With all of them inputting all sorts of information every day, quite a data mountain is building up: “Put it all together,” says Kuhan,”and you start to develop a quite a rich picture that you can then share with your healthcare team.”

Until recently Kuhan, who works in telecoms, and his partner Helen have been funding the development of the free app themselves. Now support from Parkinson’s UK has allowed them to add new features including a meal planning tool which allows users to time meals so that they don’t hinder the passage of medication to the brain.

Kuhan says he has a picture of what he wants the Parkinson’s ON app to be: “Simple, easy to use, has a benefit for the individual, but also, going forward to to those that care for me in terms of my healthcare team.” It feels as though he’s getting there.