What’s in an anecdote?
We all love stories, especially ones with happy endings. But when it comes to making decisions about our health it’s important to be able to distinguish between stories and scientific evidence. In this blog, we explore the power of stories, and when to ask questions.
One of the most important ways we learn is through the experiences of others, and with a condition as complex and challenging as Parkinson’s, hearing how others manage their condition can be extremely helpful.
Sometimes a single story can even trigger a whole new area of research.
Perhaps one of the most compelling examples of this, is the remarkable story of Joy Milne. Joy’s husband Les was diagnosed with Parkinson’s at the age of 45 but she first noticed a change in his smell about six years before that.
However, it was only when they joined Parkinson’s UK and started meeting people with the same distinct odour that she started wondering if there might be more to it.
“I mentioned that I thought I could smell Parkinson’s to one of the scientists from Edinburgh University — who was very surprised and intrigued. So much so, that they decided to put me to the test!” — Joy Milne
Joy’s amazing story has now led directly to research funded by Parkinson’s UK at the University of Manchester.
The research team are studying about 200 people with and without Parkinson’s to help them identify differences in the chemicals present on the surface of the skin that are responsible for the odour Joy can smell. If this project is successful, it could produce the scientific insights required to develop a simple test that could be used to diagnose Parkinson’s accurately in the very early stages.
A cautionary tale
Hearing the stories and experiences of people living with Parkinson’s — like Joy’s — can be such an important and inspiring way to learn more about the condition and there’s wealth of these to browse on our YouTube channel and forum.
But when it comes to making choices about our health and medical treatments they are no substitute for scientific evidence.
One particularly poignant example of this is James DeLittle, a gentleman with Parkinson’s from Yorkshire who in 2014 made the difficult decision to travel to the Ukraine for an unproven and unlicensed stem cell procedure.
Initially, James felt a lot better after receiving the therapy and there was quite a lot of coverage in the newspapers which highlighted the perceived benefits he had experienced.
“After just one of the two treatments, the doctor asked me to touch my nose with my eyes closed and I was spot on — I couldn’t believe it…”
“My Parkinson’s feels like there is a spring which constantly pulls me to the left hand side. But immediately after the treatment the force didn’t feel as strong and my balance was much better as a result.” — Mr DeLittle
Some of the papers who featured James even used the words miracle cure in their headlines…
The first person in the UK to undergo pioneering stem cell treatment for Parkinson's disease has described it as 'a…www.yorkshirepost.co.uk
However, last year James bravely revealed that his condition has since deteriorated significantly and he now says that he feels ‘conned’ having paid £6000 for the treatment.
You can watch a short video of James by clicking on the link below.
Unable to talk and barely able to walk, York man searching for Parkinson’s cure warns others.www.bbc.co.uk
We’ll never know how many people heard the first half of James’ story and decided to follow his example. But we do know that more people are traveling abroad to undergo untested therapies, and the consequences can be serious. Earlier this year experts from around the world have called for more stringent regulation to prevent people pursuing unproven and potentially deadly treatments overseas. Read more.
When to ask for evidence
Many companies know the power of personal stories and use them to market their products — which can range from medical procedures, to supplements and equipment. But what should you look out for and when should your alarm bells be ringing?
Asking yourself these three simple questions should help you decide what you can trust and when to ask for further information.
- Does it sound too good to be true? Sadly stories of miracle cures are rife on the internet and even sometimes in the newspapers. If something sounds too good to be true, particularly if it claims to cure or reverse Parkinson’s, then it usually is.
- Are they selling something? Next, check whether the story leads you towards buying a product. If it does then this should ring an alarm bell. Many companies use patient stories and ‘testimonials’ to market their products and the stories they use may be edited, unbalanced or even complete works of fiction.
- Who’s behind the story? Finally, look at who has produced the story. Do you recognise and trust them? If not, try looking for further information on trusted websites like NHS Choices or Parkinson’s UK to back up the claims being made. If you can’t find any there’s probably a good reason.
If the answers leave you with unanswered questions it’s time to dig a bit deeper.
Reliable, evidence-based information
Up to date information about treatments and therapies for Parkinson’s is available on the Parkinson’s UK website. You can also ask the medical professional you see for your Parkinson’s or get in touch with us at firstname.lastname@example.org.
This blog is not meant as health advice. You should always consult a qualified health professional or specialist for advice on treatments and therapies.