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'

 
Howard’s positive mood and thinking ability also improved after cycling.

These improvements lasted for at least two years.

The benefits of rapid cycling to reduce both movement and cognitive symptoms are now recognised.  If this interests you, I recommend that you contact your local Parkinson’s UK group to find out if they have, or plan to have, a Spin Class that you can join.  This is recommended for carers as well as people with a diagnosis.

If there is no Parkinson’s UK Spin Class, there may be a suitable Spin Class in a local gym, or you could investigate the availability of exercise bikes with a rev counter that would be available for you to plan your own programme.

Motorised exercise bikes are an excellent option.  

My 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!

Please get in touch if you would like a chat about this: [email protected]

​Further reading

• 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)

After my mother’s first diagnosis, I realised I knew nothing. There was no escape from the fact that I was now responsible for my Mum, and I had to learn how I could help. I bought books. I joined websites. I scrolled through forums, but found them overwhelming, and lacking information specific to mum and our situation. 
 
I’ve found that becoming that expert in Mum, what she needs, has been my approach. Learning a new way to communicate has been key, based on emotion and need, not fact and logic. It’s hard, and is another sort of loss, but ultimately rewarding. 

First off, the SPECAL method – via Contented Dementia – was most useful. There are 3 golden rules: 
​

1. Ask no direct questions
2. Learn from the expert (ie Mum) 
3. No contradictions

 
Conversational ‘ping-pong’ gains trust – I still use a lot - taking something neutral to talk about, like a pretty cloud or the cold rain, something Mum can feel confident in talking about.  I found the whole book overwhelming in the beginning, not answering my issues, but I go back to it, and I share it with friends and family. 
 
I’ve learned to trust information Mum gives me. For example, a common refrain was ‘there is nothing to eat in the house’, it took me ages to realise this meant that she was hungry. When I visit in the care home I always start by sharing food. I still have not found a good answer to ‘there is nothing to do’, but I know means she is bored, frustrated, and restless. 
 
Another technique, via Teepa Snow, is for difficult conversations that may escalate. It adds one extra step in the conversation. It might be ‘I just want to go home’, or  ‘I don’t know where Father is ‘ – something unsolvable, but highly emotional. 
 
First repeat the question/issue, with genuine interest. 
It might go like this: 
 
Person: I want to go home!  
Carer: Ah I see, so you want to go home? 
Person: Yes, I want to go home! 
Carer: Hmm, I see. Is there something you need to do, or you just want to be there?
Person: Likely to give more info, e.g. ‘I need to look after the children’ or repeat ‘I just want to go home’. It will give a clue how best to respond. 
Carer: Ah, that sounds complicated/hard/upsetting/ difficult /a good idea. You will have a more information to offer a solution, or distract, to take the pressure out of the situation. 
 
It is hard to do, but keep going even if it feels clunky. I even use this technique in talking about scary hallucinations, and in non-challenging conversations. Teepa Snow’s work is so practical. 
 
Dementia By Day (Rachel Wonderlin) podcast is great too, with ‘what ifs’ for specific situations. I used her method EXACTLY for washing. It worked! It started with a change of socks, a foot wash… breaking down the task into tiny parts.  
 
Believing that I am the expert in my mother, and that I have every right to share this knowledge is helpful. I keep banging on, though sometimes it has been hard. 
​ 
Dementia, and LBD, is heart-breaking, unpredictable, and difficult. So it’s essential to find moments to treasure. I give mum a big hug when I arrive, tell her I love her, in those words. If she says ‘I know’ I take that as my reward. I know there will be a time when she says nothing, and then a time when she is not there for me to hug. 

​In November 2020, my mum started showing obvious symptoms of Lewy body dementia. We'd had our suspicions in the preceding months that something wasn't right - mainly due to memory issues. But then she started seeing people who weren't there, which kickstarted my family’s crash-course in LBD. Within two months, my mum had been sectioned under the Mental Health Act.
​
A formal diagnosis during this time helped us understand a bit more of what was happening, but information was still found in a piecemeal way. Some came from sources in the US, some from charities, and some from medical professionals. It wasn’t easy – and harder still to find support that felt genuinely relevant to us.

I found plenty of general dementia-related support, or things for people with Alzheimer's. But little seemed to cater for the unique challenges of LBD – especially the vivid and often traumatic hallucinations that had caused my mum so much distress. 

As so many do, I turned to social media to try and find some form of support network – people who might understand my experience. Yet all of the big groups I found on Facebook were heavily US-centric, with much of the advice around medical care irrelevant for a UK audience – not to mention the significant cultural differences. As a simple solution, in March 2021 I set up a private UK-specific group, only admitting people who clearly lived in the UK. Within 2 years we had more than 370 members, providing informal support and advice to one another, and the seeds were sown for creating the Lewy Body Support Network. 

Inspired by the positive response to the group, in 2022 I ran an anonymous survey to see if others shared my difficulties when attempting to access information and support. To encourage participation, the survey was kept as short as possible – just five key questions – with optional places to provide further information and feedback. 82 people completed the survey, providing a clear snapshot of the general experience of people affected by LBD.

Having worked in the charity sector for a number of years, I knew I wanted to ensure any other proactive steps I would take would be relevant and any services genuinely needed. I didn't want to reinvent the wheel or replicate services that existed elsewhere. Overall, from the survey responses there was a clear indication that existing information and support either didn’t exist, or was difficult to find. It seemed my experience was far from unique.

At this stage, I was contacted by Esther Boyd, who had already been running her own support services (Lewy Buddies UK) for a number of years. We've since combined our efforts under the LBSN UK name, with the simple aim of making support and information easier to access.

This 'What worked for me' series of blogs or articles is a big part of what we want to do. So much of the information available is highly professional, generic and medical in its approach. We want to de-formalise this, by encouraging people to share their stories, ideas and techniques that have worked for them. These may not work for everyone, but there might be someone out there who could really benefit from hearing what you have experienced and what you have to say. We want everyone affected by LBD to know that their experience and knowledge is valued and important.

Having a family member affected by LBD can so often leave you feeling powerless - that you're fighting a losing battle. And while I can't stop the progression of the condition in my mum, what worked for me is doing something - however small - to try and help other people in similar situations to feel less alone or overwhelmed. 

​If you have a story to tell, please get in touch. We'd love to hear from you.

When my husband Howard received a diagnosis of Dementia with Lewy Bodies in 2011, neither of us had heard of the disorder.  We were fortunate that Howard’s psychiatrist was well informed – he was on the steering group of the Diamond Lewy project.  He advised us to keep active and to meet other people with dementia, at Dementia Cafés and other dementia events – but, due to GDPR, he was not able to introduce us to other people living with LBD.  

We went to numerous dementia events over several years, but never met anyone with LBD which you will no doubt know presents very different problems from Alzheimer’s and other common dementias. We felt our problems were not understood by others, and we felt lonely. 

​​In April 2016 I posted a message on the Alzheimer’s Society Talking Point Forum, “Looking for Lewy Buddies in the UK” and I received a positive response from a wife living about 35 miles away. We were then banned from the Forum as planning to meet was forbidden, but we became good friends, meeting regularly until the untimely death of her husband.
 
In April 2017 Howard’s psychiatrist invited me to chair a focus group at the Mental Health Trust, to discuss ways of finding ‘Lewy Buddies’, with staff from the NHS and the Alzheimer’s and Parkinson’s Societies. He told me that my task was to care for Howard and that I didn’t have time to organise a support group for Lewy Buddies. It appeared to be a useful meeting, but I was the only person who followed up action points. I produced flyers which I left at my GP surgery, gave to agency carers and distributed at dementia events. 
 
Then, in early 2018 I was contacted by two women whose husbands had LBD. The three of us gave each other massive support for the remainder of our husbands’ lives. With two local ‘Buddies’ - to phone, email and meet for a cuppa - my life was transformed.
 
That’s why, sometime after Howard’s death in October 2019, I decided to set up ‘Lewy Buddies UK’: an online and telephone support group for family members who care for people with a Lewy Body Disorder, and for people at an early stage of the disorder. 
 
The growth of access to video call technology like Zoom since the pandemic has been of great benefit to support groups. My original vision was to set up a group in Birmingham, but now there are Buddies in Scotland, Wales, Cornwall, the Isle of Wight, Suffolk and many places in between.
 
Finding other people in similar situations worked for me, so by now working with LBSN UK, I hope we can reach more people and support them through the many challenges, ups and downs they will inevitably encounter.