What worked for me: Rapid cycling

By Esther Boyd, who began the Lewy Buddy UK peer support group, now part of LBSN UK. Esther cared for her husband who was diagnosed with LBD in 2011, until his death in 2019.

​My husband Howard was a keen cyclist and at first, when his balance became unreliable, he rode his racing tricycle (on which he had cycled to Egypt when he was 19). Eventually his road sense also became unreliable, so he exercised on his bike in the garage on a turbo trainer instead, at a leisurely pace for about an hour, a few times a week.

We then heard a 12 minute BBC Radio 4 programme that mentioned a tandem ride that benefitted someone living with Parkinson's.
 
This inspired us to buy a tandem and to cycle together in a low gear at high revs - 80 rpm. I found it exhausting (I had to take lots of rests) but I found a few fit volunteers to help. We tried to do three 20-minute sessions a week. You’ll see from the photo that I’m wearing a T shirt and Howard is wearing a jumper.  This is because I was forcing the pace; it wasn’t exhausting for Howard.

​Before Howard started the rapid cycling, he often fell over, and he needed to sit when having a shower. When we first started using the tandem on the turbo trainer, Howard lent to the left so much that I always asked a third person to be in the garage with us, to prevent us toppling over. Howard also had problems with 'festination' - speeding up uncontrollably when walking downhill.
 
It wasn't many weeks before Howard:

• stopped falling; 
• stood in the shower;
• cycled upright;
• hardly ever had problems with 'festination'

 
These improvements lasted for at least two years.
 
The tandem, with its wooden stand and turbo trainer, has not been used since Howard’s condition eventually deteriorated. They need some TLC, but if anyone would like to borrow them, I would be delighted. However, I realise that few people will have the space to be able to make use of them – or perhaps the strength to reach 80 rpm, dragging a partner behind you!
 
If anyone has access to a smart exercise bike that records revs, they could see if an exercise programme works for them. I’m planning to investigate the possibility of using an electric exercise bike, which would make cycling at 80 rpm for 20 minutes more feasible.

Further reading

• In the US you can join a Parkinson's cycling class in a gym - and train as a coach. I didn't manage to persuade anyone to start this in the UK, and in any case it was easier for me to do this at home.  I think that introducing this in the UK would be a good idea. 
• The attached article 'Forced Exercise...' was written by the neuroscientist mentioned in the radio programme (Jay L. Alberts).
• There's a lot of positive information on the website for the David Phinney Foundation as well.
• ​'I reversed my Parkinson's symptoms with one lifestyle change - doctors are gobsmacked' (The Mirror)