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5 top tips for living well with SPMS

Multiple Sclerosis (MS) progression isn’t as simple as having relapse-remitting MS (RRMS) one day and secondary progressive multiple sclerosis (SPMS) the next. Symptoms don’t suddenly worsen; MS is a spectrum and changes may happen over a long period of time, even after an SPMS diagnosis1. 

So this means that, if you’re diagnosed with SPMS, you don’t suddenly have to change your lifestyle. Instead, as symptoms change over time there may be a number of small, gradual shifts that can be made to help live well with the disease. Research is beginning to show that healthy lifestyle changes may help improve managing MS and its symptoms, even when the condition is progressing2. 

These lifestyle adaptations will be different for everyone living with SPMS because everyone has a different experience of the disease. The adaptations needed are also likely to transform over time as symptoms may continue to change and your everyday activities may change too. 

Here are some tactics that may be useful when it comes to figuring out the changes you could make to help you live well with SPMS: 

Knowledge is power: One thing that everyone diagnosed with SPMS can do is to learn more about this stage of the disease. Knowledge is power and learning about the disease can help you feel more prepared to manage it. To start with, check out our article all about the different phases of MS and how it can change over time. 

Get everyday creative: There are lots of small changes that can be made to the activities you do everyday to help preserve your energy and deal with SPMS symptoms. Things you may have done to cope during a relapse, may now become useful tricks for everyday life. Some examples could include:
⦁    Using a stool for tasks like washing up or ironing
⦁    Setting up a seat in the shower or getting a bathtub with a door fitted
⦁    Getting meals or ingredients for recipes delivered to your door instead of going to the shops

When it comes to SPMS, any hacks you can think of to save time and energy everyday will mean more energy to do the things you enjoy most like time with family and friends. Spend some time working through all the activities in your daily routine and get creative with the ways you can adapt them to fit your symptoms. You could even get family and friends involved to come up with ideas (a unique alternative to a game’s night perhaps?).

Embrace the tech: Remember there’s lots of tech available that can make life easier for you. Assitive technology can be anything from adjustable bed and chair controllers to smart home devices that allow you to turn on the lights, switch on the television, open the front door and plenty of other tasks, either with the push of the button or sometimes even with voice control. It is a good idea to do a bit of research to see how you can make tech work for you and you symptoms. 

Staying mobile: Something else to think about could be mobility aids. As symptoms progress, things like walking aids may become more necessary. It may seem scary to think about using something like a walking stick or a wheelchair, but if it saves energy and means you can continue doing what you enjoy, it can be a good idea. You may not need the aids all the time but they could be super handy for the days when you are experiencing more fatigue or muscle weakness than usual, to conserve your energy. Some people with SPMS find motorized scotors a great way to get around and feel they provide a sense of freedom. Talk to a doctor, nurse or mobility specialist about what’s right for you.

Dealing with “cog fog”: Problems with memory and thinking (cognitive issues) may worsen with SPMS and this may have a knock-on affect on other aspects of your disease and life. But, just as with the physical symptoms, there are ways to manage the cog fog too. Cognitive rehabilitation involves completing certain learning and memory exercises as well as making practical changes to compensate for memory issues. A neurologist or another cognitive specialist may be able to help you construct a rehabilitation plan. Some exercises could include:

⦁    Using multiple modes of processing the information when learning something, to help you remember. So instead of just reading the information, also say it out loud and write it down. And then repeat! Repetition is a really good way of improving memory.
⦁    Building associations is also a great trick. For example, when learning someone’s name, you could associate their name with the place you met them, a colour, someone else you know with the same name or even the name of a random object which sounds like their name. Getting into the habit of making simple associations like this can really help with remembering everyday information.
⦁    Getting organized is a practical way of making sure you are on top of things and haven’t forgotten any important events or tasks. Designate a place in your home as the “information center” and keep your calendar, mail, bills, to-do list, keys, lists and anything else you’re likely to need, so you know where it’s going to be. Checklists, phone reminders and detailed calendars are all handy tools which keep you in control.3

Remember, it’s always a good idea to talk to a doctor, or another person in your medical team, to figure out the best ways to adapt your life around SPMS and your specific symptoms. Just like with RRMS, there are lots of tricks and ideas for managing SPMS and live well with the condition. 

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