Caring for someone with advanced MS
‘We have MS’
My wife and I always say “WE have MS…” and we’ve now been living with MS as part of our lives for 20 years.
The advanced MS tipping point for us came in 2014-2015 when Portia had a series of epileptic seizures which hospitalised her over a number of months. This, combined with the progressing MS, rapidly accelerated her level of disability. She went from using a walking frame to being fully dependent on an electric wheelchair. Eventually she was unable to move much from the neck down.
Portia's reduced independence means we now need a wide range of support to enable us to live family life with purpose. The battle for support is sometimes more overwhelming than the condition itself. Sadly, the social care system is currently struggling to deliver the care people need.
A diagnosis of progressive MS
When our diagnosis changed from relapsing remitting to progressive MS we fell off a support ‘cliff edge’, as many others have too. The Disease Modifying Treatments (DMTs) stopped and liaison with MS nurses stopped too. We were left, alone. It was a daunting time with an unknown path ahead and no one to guide us.
Sharing knowledge and support
Ever since I became ‘aware’ that I was not only Portia’s husband, but also her primary carer, I’ve been struck by how many times it’s felt as if we’re the first people to go through this. Learning and shared knowledge always seems lacking within the support system.
I’ve always supported initiatives that pool and share lived experiences, so that the next person in line can access this rich and valuable knowledge. Hopefully, they won’t then feel like the first person to go through it. The MS Society brings people together from across the MS community to do just this type of work.
Contributing to the advanced MS carer's handbook was my pleasure. It was a way to put the hard won lessons learnt down on paper along with many others with varied, yet amazingly familiar, experiences to share.
Living with advanced MS
If you’re affected by advanced MS, I hope this new booklet will help show you that others have been through this stage. It gives pointers for next steps to help guide you through.
The key message is that you are never alone. There are lots of people who have been through this who you can speak to in the MS community. Many of us are more than willing to share our experiences as you continue to adapt and live as well as possible with advanced MS in your lives.