IN LESS THAN four months I will mark a milestone event, it will be ten years since my diagnosis with Parkinson’s at the age of 47. Since then, there have been good days and there have been bad days, without a doubt though it has taken me on a journey I could never have expected, from completing my first ever marathon, to setting up a charity and establishing a choir for people with Parkinson’s their family members and friends – one which has released its first single and at the end of this week will travel to Montreal to both perform at and attend the World Parkinson’s Congress.
It might seem that, like buses, you wait ten years for a story on Parkinson’s to come, and then three come at once. First was the news that Linda Ronstadt had stopped singing following a diagnosis of Parkinson’s, then the news that Billy Connolly has been diagnosed with early stage Parkinson’s, and just last week my good friend Shay Healy shared his personal Parkinson’s story, in his own searingly honest, at time humorous, at times challenging way, on TV3’s Midweek.
Each of them is on their own unique journey with this often misunderstood illness, the second most common neurological condition after Alzheimer’s.
My story though isn’t just about Parkinson’s, it is about our relationship with medicine and doctors in Ireland, it is about a new paradigm of healthcare that is needed for all chronic illness, one which is patient-led and holistic.
We all know that our healthcare system is under-resourced and over stretched, we have one of the lowest ratios of neurologists to patients in all of Europe, but I don’t believe that the answer is to put more money into doing things in the same way that we always have.
The truth is that we have a relationship with our healthcare professionals that doesn’t work. As patients we need to take more responsibility and ownership for our illnesses. Rather than just take our tablets and wait for our next appointment, it is vital that we understand what we are taking, why we are taking it, how it should work.
We also need to look beyond medication; at exercise, nutrition, our mental well-being and other treatments which can form an effective arsenal in our battle against whatever illness it is that we happen to have.
We are the ones who understand our illness better than any doctor might, we understand best how we, as unique individuals, are experiencing the illness we have. This is because we are living with our illnesses every day. If we pay attention, we will begin to really understand; how medicines make us feel when we take them in different ways, or at different times; which exercises support our well-being; or how our mental health is being affected by managing a chronic illness every day.
This patient-led approach to healthcare is commonly known as ‘self-management’. It’s not about patients deciding alone what medications or other treatments will work for them, it’s about putting patients at the heart of their treatment. It’s about better communication between patients and healthcare providers and a multi-disciplinary approach that sees our professionals communicating with each-other; neurologists, GPs, physiotherapists, speech therapist and others, all working together with the patient to determine the best course of action.
It might sound like a sensible approach, but we shouldn’t underestimate how far we currently are from that model and how much work it will take to change the culture and ways of working needed to get there.
A first step, is for us as patients to educate ourselves. According to the WHO, among patients with chronic illness, approximately 50 per cent of us do not take medications as prescribed. This poor adherence to medication leads to increased morbidity and death and is estimated to incur costs of approximately $100 billion per year. It is vital that we take responsibility for learning how to manage our illnesses and take our medication.
This is where organisations such as Move4Parkinson’s come in. When I was diagnosed I had nowhere to turn, I was told not to research online because it would scare me, but even without doing it I was terrified, so I figured I had nothing to lose. What I found online was an amazing community of other people with Parkinson’s and specialists around the world.
They were also realising that traditional approaches didn’t work, that regular exercise was hugely important for Parkinson’s, that changes as simple as taking medication with a glass of water would make it work better than just dry swallowing tablets.
With Move4Parkinson’s we are working to make that information accessible in one place, in a simple way, that is easy to understand. We are working to educate people with Parkinson’s on how to manage their illnesses and how to work with their neurologists and health care workers to achieve the best possible quality of life. The 12,000 people with Parkinson’s living in Ireland deserve that at least.
Uploaded by Move4Parkinsons
As patients, regardless of what illness we have, we have to take ownership for our illnesses, empower ourselves, feel in control of our lives once again. As patient organisations, we can support those with chronic illnesses by teaching them self-management skills. A 2007 study showed that patients with high levels of engagement and active participation in their own care are ten times more likely to report high patient-satisfaction scores, five times more likely to report high quality-of-life scores and report significantly higher physical and mental functional status scores.
We need to make self-management more accessible and to come up with more creative and (dare I say it) enjoyable ways, of managing chronic illness. This was one of the drivers for setting up our Move4Parkinson’s choir. It provides not just a sense of community but also supports the speech therapy needs of those with Parkinson’s, to improve and strengthen their vocal power.
I believe that it is possible for the Irish healthcare system to move towards this model. This approach works, it has been proven in countries such as The Netherlands, with their ParkinsonsNet initiative, but we need everyone in our health care systems, including us patients, to get behind it in order for it to become a reality.
Mags Mullarney is founder of Move4Parkinson’s. Further information on their ‘five elements’ self-management programme can be found on www.move4parkinsons.com. On Sunday29th of September a group from Move4Parkinson’s will travel to the World Parkinson’s Congress in Montreal, their progress at the conference can be followed via their blog on their website.
Facebook: facebook.com/move4parkinsons
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