Doctors

Medicine X_MS Xplained_Ladywithms

MS Xplained: An app about MS

Being diagnosed with MS is hard

Ever been to the doctor and not understood what they said? It happens. And it definitely happens when someone says you have MS… The only coherent question I had when my diagnosis was confirmed was ‘can I still drink alcohol and eat cheese?‘ (yes, in the face of the unimaginable that really was my question).

Despite normally having myself together (with the ability to ask relevant questions), being told you have MS is overwhelming. There are questions you need to ask, and information you need to understand at a practical level. After all, it is your body and your disease.

But there is introductory information available

MS Xplained is MS explained by real doctors for real people with an MS diagnosis, in the form of an app. It is based on real MS stories – in this case, mine and Melissa’s. The goal is to help those newly diagnosed understand the disease and the treatment options available.

This app explains MS in a way everyone can understand. There is no judgement, and no doctor-speak. It is just the information you need to know to help you – or your friends and family – get the basics right.

As someone with MS, I can say this information would have helped me when I was diagnosed. Once you understand this information, you can choose how far you take it and decide what else you want to know (even if all you can consider wondering about is whether you can eat cheese).

Download it for free here.

 

Medicine X worked with MS Australia and MS Research Australia to develop the ‘MS Xplained’ app. Full disclosure: I am a National Advocate for MS Australia, and I did not receive any fee or reward for sharing my story or writing this post.

The Progress in MS Research Public Lectures

MS research is controversial

Medical research is controversial. And medical research into Multiple Sclerosis tends to be more controversial than most. The stakes are high. Plenty of people gave positive feedback on my last post, and a handful gave what I am going to describe euphemistically as ‘constructive criticism’.

So I am going to let the experts speak for themselves.

Progress in MS Research Public Lecture

The 2015 Progress in MS Research Conference held in Melbourne in October 2015. MS Research Australia has released four public lectures covering the highlights of the conference.

Current and emerging treatment for MS in Australia: An update

Impact of social experience on adult myelin repair

Physical activity and exercise: A lifespan approach to maintain health

Progress in MS Research Conference: Latest news and developments

All lectures can be watched at MS Research Australia.

Looking after your health: Doing what you’re told isn’t always enough

I love this 2011 TEDTalk from ‘ePatient Dave‘. The talk is relevant for anyone with health issues, and especially anyone with complicated health issues that require more than one specialist.

Dave survived a diagnosis of terminal cancer largely because he decided to proactively participate in his own healthcare and treatment.

In Dave’s words ‘Patient is not a third person word. You yourself will find yourself in a hospital bed, or your mother, or a child … the most under-utilised resource in all of health care is the patient’ (around 1:20 minutes).

Dave didn’t rely on one diagnosis or one doctor or one hospital. He managed his own records, he sought out information from other patients with the same condition, he sought out recommended doctors and medications, and he is still here years after a terminal diagnosis.

The key here is not to stick your head in the sand. It is to engage with others who know what you need to know and who have experienced what you are experiencing. This is because ‘Patients know what patients want to know. It is the power of patient networks’ (around 10:00 minutes).

ePatient Dave’s lesson is clear. Be motivated, be informed, and then advocate for yourself.

Thanks to TEDTalks and YouTube for the video.