As an occupational therapist, I work mainly with patients who have multiple sclerosis (MS). My job is to help them remain independent in all the activities of daily life for as long as possible. It’s especially important with secondary progressive multiple sclerosis (SPMS). Unlike relapse remitting multiple sclerosis (RRMS), where periods of challenge are followed by periods of stability, SPMS can lead to physical, cognitive, and emotional changes that are often permanent.
When I work with a patient who has SPMS, I always ask myself, “What can I do to help promote their quality of life?” I want to make it easier for them to get dressed, take a shower, eat, and move around their home so that they have enough energy left to play ball with a grandkid or take a walk outdoors with their partner while the leaves fall. We want to make sure they can continue to love life.
An occupational therapist’s role is particularly key, as we show them ways to use their arms and hands as efficiently as possible to get things done. If you do have SPMS, one of the best things you can do is to start occupational therapy (OT) as soon as possible. Even minute changes can make everyday activities much easier. We want to be proactive, not reactive.
Here are some of the top bits of advice that I give my patients:
Lean on Energy Conservation Throughout Your Day
I live and breathe energy conservation techniques to help my patients deal with SPMS. They are more than management strategies — they should become part of your lifestyle. SPMS affects you more than just physically. It affects the way you process information, your emotional well-being, and sleep.
I use the analogy of 100 pennies in a jar. That’s how much energy most of us need in a day. When you wake up in the morning, your goal should be to spend those pennies as efficiently as possible.
It comes down to these five P’s:
Planning ahead
Look at what your day looks like. How many pennies do you think you’ll use? If it’s 95, that’s only five pennies left over. Will that be enough in case something unexpected happens? You need some sort of reserve; you never want to hit zero, or even worse, end up in the red. Otherwise, you may crash out entirely and not be able to do anything for a few days. You may have to cut back on a few activities to make sure that your body gets the rest it needs.
Prioritize
You want to prioritize tasks that require the most energy when you have maximum energy. Showering is a good example. Many of my patients with SPMS find it exhausting, as it requires them to use many muscles for a significant period of time. Most people find that their energy is highest in the morning or evening. Time your shower accordingly. This way, you don’t do it at a moment when you simply don’t have extra pennies to spare.
It’s also important to break down your needs vs. wants. Prioritize those tasks that you absolutely need to get done that day. You don’t want to neglect things that you want to do, such as taking a walk with your partner, for example, because those are activities that improve your quality of life. Your OT can help you find a balance between the two to make sure you complete everything you want to successfully.
Pacing
Many people with MS know that they need to take breaks, but just assume that they should do it at the end of an activity. But in reality, you should take those breaks as you need them. I often recommend patients try to take one in the middle. It can allow you to recharge enough to push through the task’s finish line. Otherwise, you may rush through the activity, which is a mistake. You’ll find that you expend even more energy, especially if you make a mistake and have to go back and fix it.
Placement
Pay attention to where you place things in your environment. During our morning routine, for example, we reach above our head and below our waist at least fifty times. At the moment, that doesn’t seem like a lot, but those types of motions add up throughout the course of a day.
Try to move all the objects that you need to an arm’s length location, to help you save more energy. If you use the same coffee mug each morning, place it on the countertop next to your coffee maker. When you cook, make sure all your ingredients are placed near you at a table. This allows you to sit and do everything at once rather than walking back and forth between multiple cabinets. I also recommend people have a plastic bag handy while they chop or peel. This way, they don’t have to keep getting up to go over to the trash can.
Physical activity
Exercise is also an energy conservation technique. My patients are often surprised to hear that, but research does show it can improve fatigue among people with MS. Why? The more physically active we are, the stronger we become, which means we can do daily lifestyle activities more easily. It also helps improve sleep, which in turn boosts energy.
Use Adaptive Tools
They can make it easier for you to do everyday activities, whether it’s exercise or getting dressed. If it normally takes you 90 minutes to get ready in the morning, you can shorten that time in half by using a few adaptive tools. You can put that extra energy toward something that promotes your quality of life. Here are some of my favorite items:
- Battery-operated jars and can openers
- Rocker knives with rounded blades, for easier fruit and veggie chopping
- Adaptive cutting boards
- Pasta baskets (wire baskets that you place in pans so that you don’t have to lift a whole pot of boiling water)
- Electric toothbrushes
- Long-handled shower brushes
- Reaching tools (so you don’t have to bend down or reach up for items)
- Pocket dressers, to help you handle buttons and zippers
Don’t forget even bigger tools, such as walkers and wheelchairs. Patients are often worried about their use, but I explain that they are simply another tool in their toolbox. If it takes a lot of energy for you to go out to dinner with your family, a wheelchair is an easy way to get from the parking lot to the restaurant. You don’t have to rely on them, but use them so that certain activities don’t become too tough to do.
Tweak Your Home Set Up
As your SPMS advances, you’ll need to make some changes in your home so you can stay there safely. What that looks like is different for everyone. One patient may just need safety rails for their toilet, while others require a toilet lift. Some people need a lower kitchen counter so that they can prepare meals from a sitting position.
Because every home and every patient’s needs are different, it’s a good idea to take pictures of your current setup and bring them to your occupational therapy appointment. Your therapist can help you come up with some options for independent living. You can also hire some companies that can send some professionals to your home to do a modification assessment. The National Multiple Sclerosis Society has a list of organizations that may be able to help you cover the cost here.
Try Smart Home Technology
Smart home technology has been a game changer for many people with SPMS, allowing them to stay independent. Initially, I encourage patients to start with lower-tech changes. Many people don’t realize that their cell phone has accessibility features. If you have a hand tremor, for example, you can turn off the double tap feature on your phone to make typing easier. You can also pair Amazon’s Alexa [Echo] with smart devices around your home to help you change your thermostat temperature, turn lights on and off, and operate stoves and TVs.
The Bottom Line
All of the above strategies can help you stay independent for as long as possible. The key is to be proactive and start with occupational therapy as soon as possible. That way, we can make sure that you continue to live as full and rich a life as possible.
