Our Parkinson's Life

Following on from our last episode, Jakkie presents some thoughts for carers and other loved ones on coping with dementia, then she and Barry explore the challenges of progressive PD on holidays and event planning.Meanwhile, the pair feel fantastic as they learn this episode's title is a finalist for this year's Annual Alliteration Awards.

Episode 19. In a personal and emotive episode, Jakkie explores how the onset of dementia in someone close has such a devastating impact on others, and Barry recounts how making the wrong decision for the wrong reasons resulted in a thoroughly miserable day.

Episode 18. Receiving a Parkinson's diagnosis is a life-changing moment. The days and weeks that follow can be extremely worrying. If still employed, one question at the front of our minds will be, 'When should I tell the boss?Barry & Jakkie welcome their first podcast guest, Steve Davis, an experienced HR professional, to guide us through the support that should be available, employee legal rights, a range of options to manage a likely steady decline, and rights and responsibilities at the point the employee and organisation part company.

Episode 17. Barry and Jakkie, back from their holiday by the sea, reflect on how understanding our limitations means we can still have a fabulous time.Barry shares a painful reminder of the necessity to take medication carefully, and how an unfortunate and painful visit was an excellent reminder of the need to make more people aware of Parkinson's.We end with an innovative idea which really would take us back to our school days.

Episode 16. Join Barry & Jakkie on their holidays in the beautiful seaside town of Aberdovey.They remember chaotic but fun holidays when their children were young, crabbing from the jetty, productive visits to a local market, and how a glass of wine provided a coping mechanism amongst the chaos.It's not all plain sailing. We explore the reasons behind, and solutions for, Barry's occasional bouts of anxiety.Give it a listen – you can almost smell and taste the sea air.

Episode 15. Receiving a Parkinson's diagnosis is life changing for the partner as well, thrust into the role of carer, one they never expected or asked for.Over time, as the disease develops, their partner may become increasingly withdrawn and non-communicative, leaving the carer feeling isolated, alone, worried about the future, even scared.Barry (diagnosed 2015) and Jakkie (his partner and carer) explore what help may be available, the importance of breaks and other human contact, and how communicating with each other, however tough, is essential.

Episode 14. In an honest, at times uncomfortable, episode, Barry and Jakkie explore the issues of persecution, jealousy and suspicion of care - the medical reasons for this - and the damaging impact this can have on many with PD.They recount how, through the strength of their relationship, they have dealt with aspects of these issues.

Episode 13. Jakkie dives deep into the burden that lands on the shoulders of carers following their partner's diagnosis, and how, over the months and years that follow, that burden grows.We start to explore ways to cope, which we will return to in our next podcast.

Episode 12. We all know that hot weather can worsen Parkinson's symptoms, and with UK temperatures predicted to hit the mid-40s by 2050, these intense summers could be here to stay. But you don't have to navigate the changing climate alone. In this episode, Barry and Jakkie bring together the best cooling tips and handy hints shared by our community so we can all support each other, stay comfortable, and beat the heat together for years to come.

Episode 11. Barry and Jakkie remember back to the day Barry was diagnosed, and that feeling of panic.Reliving those days they share five thoughts on what to do, and what not to do, next.

Episode 10. When we receive a diagnosis of Parkinson's, it is very easy to make our world smaller, to withdraw inside ourselves answer to feel things can never be the same again.This reaction is completely understandable. Parkinson's can feel like a life sentence. We watch our friends doing all the things we don't believe we can any longer do. But could we? In their latest podcast Barry and Jakkie explore how we can adapt to a new circumstances and still live a rewarding life.

Episode 9. In their latest podcast Barry & Jakkie share their experience to date with the Produedopa pump, reflect on such a warm welcome from their local PD groups and explore the challenges carers face.

Episode 8. Barry and Jakkie explore how waking with a positive or negative mindset determines the day ahead, from living your best life to a downward spiral of negativity. As Barry strives to tackle anxiety, Jakkie recalls a much loved bedtime story from her childhood.

Episode 7. Barry wilts, feeling the impact of the hot weather, while Jakkie breezes in fresh from her air-conditioned carers get together.  They discuss the essential need for carers to have breaks, however short. We return to the challenge of developing a ‘can do’ attitude, a great day together at the County Show and the ease of booking accessible seats for a forthcoming concert.

Episode 6. Barry & Jakkie explore the reasons for launching ‘Our Parkinson’s Life’, putting ourselves out there, and the difference we hope our podcasts might make. There’s an update on the Produodopa pump, and we report back on our 800 mile road trip and the lessons we learned on the way.

Episode 5. Barry & Jakkie share how a vibrant and enjoyable Parkinson’s exercise class leaves Barry exhausted next day, consumed by negative thoughts and behaviour.Jakkie, the ‘toughest carer in town’, soon has a solution…

Episode 4. Barry & Jakkie chat about how this progressive disease makes longer-term forward planning essential.Barry shares the challenges he faced when long working hours with travelling becomes impossible, and how he has managed the transition from a busy job to pursuing a variety of hobbies and interests.They also chat through the challenge of adapting and equipping their home for Barry’s future needs led to them choosing to move early to a more suitable property.

Episode 3. In the latest episode of our new podcast Jakkie and Barry share the experience of moving to the Produodopa pump after a decade of oral medication. Sometimes brutal struggles through the first two months are followed by a sense of real benefit and progress.Jakkie and Barry also chat about the difficult decision of when Barry should stop driving - a real backward step in maintaining a level of independence.

Episode 2. Together Barry and Jakkie explore three facets of a life with Parkinson’s.How, over ten years on from diagnosis, they still find things to laugh about every day, even in the most unpromising of situations.How a Parkinson’s diagnosis need not be a life sentence, a recognition that every single day is an opportunity to share, discover and explore together.How a Parkinson’s diagnosis is life changing for the carer as well, and how too often this role is taken for granted.

Episode 1. Welcome to our new podcast, Our Parkinson’s Life: Laughing, Living, Caring. A gentle, honest, sometimes humorous look at life with Parkinson’s.I’m Barry, I was diagnosed in 2015, and together with Jakkie, my wife and carer, we share the everyday realities of living with Parkinson’s - the challenges, the unexpected moments, and how we find laughter and connection along the way.We also shine a light on carers, an often-overlooked group who can feel isolated and unsupported.Who cares for the carers?