We had the pleasure recently to meet with the inspirational Andy Butler, founder of Facebook Group ‘Parkinson’s People’ and the drive behind the upcoming ‘Parkinson’s Vision 2020’ Conference. The global Conference will be held in Leicester in April 2020 and is the first of its kind - focusing on the needs of those living with Young Onset Parkinson’s Disease (YOPD).
Andy is a laid back, softly spoken, bubbly character; quick witted with a contagious smile. He clearly feels deeply for the reality of those living with YOPD and explains with subtle disappointment how traditional charitable organisations could do more to meet the needs of those with a diagnosis under 50 years of age.
Filling the gap
He describes how the need for job advice, childcare and family support as well as general well-being and lifestyle guidance has been virtually non-existent in the past. When discussing the websites run by the major charities, he explains that a lot of it comes down to funding and as a result there isn’t as much specific information as those with YOPD would like. With YOPD classified as ‘rare’ it doesn’t attract the same level of financial support as Parkinson’s Disease, and there aren’t the peer communities needed.
It is this lack of available advice that drove a group of young people at the World Parkinson's Congress (WPC) in Kyoto last year to organise this year’s Conference.
“They don’t want to sit and listen to someone talk and drink tea” Andy explains. “They won’t live near anyone that’s got YOPD”. He paints a picture of a very isolated existence. Social media has become an oasis for most, with worldwide conversations and friendships created across Instagram, Twitter and Messenger.
Facilitating a worldwide community of over 55000 people as well as extensive travels supporting international awareness events means that Andy has had plenty of insight into the concerns of younger People with Parkinson’s (PwP).
He describes concerns around employment, childcare and family life. When you’re in your 60s or 70s you’re not necessarily worried about how to pay your mortgage, who will look after your children, or whether your partner will stay with you…
Diagnosis of an incurable condition early in life can be devastating and a supportive community can make all the difference, particularly when it’s lifestyle advice that’s needed. Everyone’s symptoms are different, but if someone has discovered a food that helps, or an exercise that works, then that can have a real impact on someone’s daily life.
The primary concern for a person with a diagnosis of YOPD becomes how to function. How am I going to get through the rest of my life? What will happen to me? To my family? Andy explains how GPs often advise a 5-year plan to help with this; but with a constantly changing condition, medication in flux and an uncertain future for healthcare, planning for a week – or even a day – is an achievement for some. He states in earnest that the real challenge is patiently trying all the options available to find the right solution for each individual.
Treatments or Cure?
Given this understandable shift in priorities, it is no surprise to learn that there are few younger PwP investing time and energy in drug research or long-term trials and “lots of them disagree with what should be done and what should happen”.
“They know, in their heart of hearts,” he says, almost apologetically, “that the cure is not going to be in their lifetime”. And with immediate concerns like children and mortgages, it is easy to see why a questionnaire revealed interests in stress management, future treatments and exercise advice over mobility and research.
His no-nonsense description of the challenges reveals how hard it would be to contribute even if they wanted to. “If they want to go to a trial – a clinical trial – who looks after the children?” Indeed, with employment concerns high on the agenda, how would they juggle working life – already challenged by their symptoms – and further time for trials and research activity?
Andy tells us the story of a young woman with a partner and two very young children, in a responsible job at a retail Head Office. All the usual stresses of raising two young children in a working family are compounded. She could have a sleepless night with the kids and by 8am she can barely function and not even get to work. In this case she can work from home, but the situation is clearly unsustainable.
“You won’t hear that story from the older generation” he says. There are an entirely different set of circumstances that people with YOPD are dealing with. “How do you help her?” Is it a childcare solution? An employment question? This is what the Conference is hoping to highlight and help with.
Andy’s respect for the Parkinson’s Community at large is evident when he states that he “doesn’t want to be rude,” as he divulges that people living with the reality of YOPD have “waited a long, long time for this one meeting…”
When we discussed medication, Andy was very clear that most drugs either do not work at all or only 20 – 30% of the time. This means that a single dose - intended to cover a four-hour period - may work for perhaps 30 minutes to an hour and a half then wear off. “For the other two and half hours it’s back to being in a nightmare” he declares, “all the symptoms repeat themselves”.
He explains how these times are often referred to as “off-periods” and are “probably the most horrific things for people.” He goes on to point out - with genuine empathy and care - how awareness of this cycle means he can “keep an eye” on someone with YOPD and account for it when working with them.
When discussing relief from these symptoms and side effects, he states the only thing that really eases or soothes is exercise. Yet with mobility a subject most tend to avoid (“They won’t even sit in a wheelchair – it has a psychological effect on them.”) it is clear that PwP will need support and expert advice to keep activity high on their own agenda in their future.
Never the same
Where there is some relief from the medication, Andy describes how there is still a constant “tweaking, tweaking, tweaking” to get it right and keep up with evolving symptoms. When we touched on the effect of M-co, there is hope that the stimulation can alleviate some discomfort. Andy reveals his belief that “Something like that… Even knowing that it’s there will give some kind of comfort – it will console people”.
This can be particularly true in the case of those whose symptoms are erratic and unpredictable, striking unexpectedly and disappearing just as quick. People with a diagnosis of YOPD “will never be the same again,” Andy states with a sad, yet pragmatic tone “They know that they will always be different people. They are not going to go back to what they were”. Yet we get the very strong impression that this is not a group of helpless victims. This a lively, curious community, actively pursuing the solutions and prepared to do whatever it takes to get the answers they need.
With an advocate like Andy Butler, confidently and fluently stating the facts of the situation with his kind, open manner, it is clear they will be well supported. We are looking forward to meeting attendees of the Conference when we join them in April and exploring how M-co can help.
Thank you Andy for sharing the story.
Author : Victoria Duggan