One thing I wish more people understood about Motor Neurone Disease is that right now, despite all the hope, fundraising and research, THERE IS STILL NO CURE.
We all desperately wish for that to change one day. We need it to.
There are a small number of medications that have shown limited success in slowing progression for some people, and some promising trial results in a very small group of people with specific genetic variants. That absolutely matters, and continued research is critical.
But the reality today is that there is still no effective treatment, and there is definitely no cure.
MND IS TERMINAL.
It’s confronting for people to hear that there is no cure. To hear that a disease is terminal. But imagine being the person receiving that diagnosis, or the family living beside it every single day.
Having spent the last 2.5 years as part of the supporting my Mum Marlene Answer-Lewis care for my stepfather Shane Lewis, and after also losing my aunty to this disease 30 years ago, I also want to say something that can be hard for people to hear.
Telling someone with MND that they are going to “beat this” or to “get well soon” is often not helpful, even when it comes from a good place.
The fact is, this is a LIFE LIMITING CONDITION. Families living with MND are NOT navigating a journey toward recovery. They are trying to preserve time, quality of life, dignity, communication, mobility and precious moments together while facing a disease that progressively takes those things away.
When someone receives this diagnosis, the conversations are often about getting affairs in order, making memories while there is still time, adapting homes, navigating systems, preparing carers and trying to make every remaining moment count.
Please don’t stop wishing for a cure though. We desperately hope for that too. But it doesn’t change what we are facing right now.
Donations, where people are able, to organisations that provide care and support to people living with MND and their families, along with organisations helping fund research into causes, treatments and hopefully one day a cure, are incredibly important.
If you want to help and are not sure where to donate, reach out and we will happily share some links to reputable organisations doing important work in this space.
Hope matters. Research matters. Support matters.
But so does honesty and understanding the reality families are living with.
