Movers and Shakers: Living Alone With Parkinson's

This week’s episode of the Movers and Shakers podcast is all about living alone with Parkinson’s. I’m in Scotland for a book festival and have been lying awake in th early hours listening to the episode before it is uploaded - and I think, like me, that you will find it both extraordinarily moving and at times very funny.

We start by reflecting that we are the lucky ones, each with a partner who in different ways helps us cope with this incredibly annoying condition - which often makes us incredibly annoying companions.

We are then joined by Nick, who has had to cope with Parkinson’s without a partner:

“I was diagnosed in 2016 and had been living on my own for over 20 years anyway” he tells us. “I find it quite easy because I'm used to being on my own and doing things myself anyway.” He admits that the rigidity and increaing lack of mobility that Parkinson’s brings does present challenges - like rolling over or getting out of bed - but he has found practical solutions: “A device was given to me by social services that goes under the bed that I can hang on, like a kind of a rail, and pull myself out of bed.’

He also describes a device for pulling on your socks called the SoxOn which we all thought sounded very useful and must investigate. But Parkinson’s offers emotional as well as physical challenges. Nick does have a support mechanism in the form of a brother and sister who live nearby and some friends he can call on but perhaps most important is his membership of the Oxford Parkinson’s UK Branch.

Our other guest is the redoubtable Sally Bromley, a leading member of the Oxford group - Gillian Lacey Solymar and I attended the Big Cream Tea she organised earlier this year and came away impressed by the energy of the event and the sense of community. Sally tells us the group is all about mixing a variety of people - not just “Parkies”, but their carers and people involved in researching the condition:

“I have this passion that every time you meet somebody with Parkinson's, you must try to learn something more about it- doesn't matter what it is - just so you have a better understanding of what it's like.”

The Oxford group also has an initiative called First Steps designed to help newly diagnosed people come to terms with living with Parkinson’s with the help of those who are further down the track. Most of the Movers & Shakers have not yet joined a group - apart from our own pub-based support bubble - and some of us admit to having been distinctly queasy about the idea.

For me, it was about not defining myself as an old person with a life shortening condition. And Paul Mayhew-Archer, himself an energetic member of the Oxford group, says that may be a common view: “People have also told me that they don't want to join a group because they don't want to see people further down the track and think, oh, that's where I'm heading.”

Sally herself admits that she very nearly walked out of her first meeting:“When I first went to the Oxford branch, I walked in and saw four people in wheelchairs - I just thought, this is not for me.” But she stayed , soon found herself doing a sky dive, and has spent fifteen years helping to build a thriving connected community.

But it is clear that far too many people are still left alone and confused after getting a Parkinson’s diagnosis. Since launching this podcast we have heard from dozens of people who say they are glad that finally they are hearing Parkinson’s discussed openly and receiving information that they never got from their doctors.

Now, obviously Movers and Shakers should be approved by NICE as an essential resource for Parkinson’s care. But people should also be pointed towards their local Parkinson’s UK group - just a cursory glance at the Oxford group’s website will show just what rich resources of information, advice and friendship are on offer from these communities.

Oh, and if you think this episode of the podcast sounds a bit heavy going, there is plenty of light relief - including a hilarious anecdote from Paul Mayhew-Archer involving a condom. There, that will get you listening.

Do please let us know what you think of the podcast by emailing us at feedback@moversandshakerspodcast.com