Adjusting to life with progressive MS
I’ve been involved in MS research for over 10 years now, and in recent years I’ve become particularly interested in understanding more about how people adapt to living with progressive MS.
Three years ago, the MS Society awarded me a junior research fellowship to do just that.
For my research, I interviewed 34 people with progressive MS and their partners. We explored some of the challenges they faced after their progressive MS diagnosis and the ways they’d found to cope with them.
Here are three of the major adjustments people made:
Scaling back goals and focusing on one or two critical areas helped some people. For example, Amelia told me that she used to go to the gym for at least an hour every morning, but she recently had to cut this time down.
She discovered Pilates, and started doing it at home two or three times a week instead.
Tweaking goals to make sure they were still achievable was another option.
People who liked gardening chatted about using modified tools. Some even hired people to help them do the more physically demanding aspects of gardening. These changes enabled them to still enjoy the hobby they love.
I spoke to people who changed their plans entirely or shifted long-term goals to shorter term goals – or even made daily goals.
In her interview, Lily told me she used to be very career driven and always tried to achieve more at work. Now she was focusing on other things, like being a good mum to her teenage daughter.
It can be useful to reflect on our priorities, and if what we’re doing is what we really want to be doing.
Lots of people told me how life changes had led them to focus as much as possible on things that give them joy, like old hobbies or activities.
Being adaptable and next steps
The most remarkable point I took away from the interviews is how adaptable we are. No matter what situations we are thrown into we try our best to find a way to make things work.
We’re now conducting a large online survey to understand these adjustment processes better.
We can use what we learn to develop programmes that can provide long-term support for people with progressive MS.