Muscle spasms. Numbness or tingling in your arms or legs. Stiff muscles.
If you’re living with secondary progressive multiple sclerosis (SPMS), symptoms like these can make it hard to tackle daily tasks. SPMS damages your nerves, and as your condition progresses, you may experience symptoms such as:
- Trouble walking and balancing
- Problems learning, processing, or remembering things
- Vision problems
- Bowel and bladder issues
- Fatigue
Over time, you may notice that you can’t move around as well as you used to. Still, it’s important to get and keep moving as much as you can.
“Every system in the body works better when we are active,” says Brian Smith, PT, DPT, a physical therapist and neurologic clinical specialist at the Andrew C. Carlos Multiple Sclerosis Institute at Shepherd Center in Atlanta. “Staying active has a positive impact on muscle strength, flexibility, heart and lung health; it improves sleep, reduces pain, improves mood, reduces stress/anxiety, and can improve cognitive function. Whether it’s age-related declines or MS-related declines, staying active and mobile will help slow those declines and maintain your ability to participate in activities that are important to you. Or as one of Newton's laws of motion states: ‘An object at rest stays at rest, and an object in motion stays in motion.’”
Here are some ways you can tackle everyday tasks, even when you have mobility issues.
Assistive Devices
No two people experience SPMS in the same way. Your symptoms may get worse over the course of years. For others, it might happen more quickly. Assistive devices — tools that help you perform everyday tasks without help so you can be more independent — can help.
Getting in and out of bed
Stiff muscles, poor balance, and numbness in your legs can make it harder to get into and out of bed. These tools can relieve pressure on your joints, help with balance, and make getting in and out of bed easier.
Bed ladders. These flexible ladders are made of rope or some other soft material. You clip the ladder to your bed frame and pull to adjust yourself up or down in the bed. Bed ladders reduce strain on muscles and joints.
Grab bars. Install these bars (or rails) on the wall near your bed to help with balance and coordination.
Transfer boards. These flat boards allow you to move safely from one surface to another — for example, from a chair to a bed — without help. Slide the board underneath you to bridge the gap you want to cross.
Floor-to-ceiling poles. This stationary pole runs from the floor to the ceiling. Grab the pole to help you stand up, or for extra support while taking steps or sitting down.
Getting dressed and undressed
Pain, numbness, muscle weakness, and fatigue caused by MS can make it hard to get into or out of your clothes.
Adaptive clothing
These clothes are designed for people with mobility challenges and use things like Velcro or elastic that can make getting dressed easier. Examples include:
- Slip-on shoes with elastic bands and no-tie laces
- Compression socks with side zippers
- Socks with loops for easy pull-up
- Pants with elastic waistbands, pull tabs, zippers, or snaps
- Breathable fabrics that help regulate body temperature
Other ways to save your energy and manage MS symptoms while getting dressed include sitting down while dressing or undressing and laying out your clothes the night before.
In the bathroom
Slip-and-fall accidents can happen in the bathroom, especially when you’re living with common SPMS symptoms, such as poor balance, fatigue, and muscle stiffness. These symptoms also make it challenging to maintain good hygiene.
Some tips and tools that can make your bathroom trips safer include:
- Grab bars in the shower and near the toilet
- Raised toilet for easier sitting
- Handheld shower head
- No-skid shower mat
- Long-handled shower brushes
- Transfer boards to slide from the wheelchair to the toilet
In the kitchen
As in other areas of the house, SPMS symptoms can make it hard to prepare meals and handle other kitchen duties. Adaptive tools that can help include:
- Three-tiered rolling carts
- Small stool with backrest
- Cooking utensil with hand clips or grips
- Battery-operated can and jar opener
- Push-and-cut slicer instead of knives
Jennifer Nash, PT, DPT, a professor of physical therapy at the University of Nevada, Las Vegas, says that while adaptive tools can help, it’s important to manage your energy while doing kitchen tasks. “Energy-saving ideas might include preparing meals while sitting at the kitchen table and using a rolling cart to bring ingredients from the pantry to the counter, which means fewer trips back and forth and more energy left for enjoying dinner with family.”
Housekeeping
Stiff muscles, joint pains, and balance issues can make housekeeping difficult if you’re living with SPMS. Robotic vacuums and long-handled cleaning tools, like dusters, can make it easier to handle household chores.
Smith advises pacing yourself and breaking up big tasks into smaller tasks. “This can be done with any task. Dishes: Unload the top rack, take a break, then unload the bottom. Laundry: Wash in the morning, fold in the afternoon. I have some clients who tell me, ‘I just have to get it done with. I have the energy,’ but then they crash and burn and take two days to recover. When they schedule in rest breaks, they find they can get more done overall.”
Ask for help from friends and family. If you need housekeeping help but can’t afford it, talk to your MS care team. They may have a list of resources or organizations that can help.
Driving
SPMS can make driving challenging, but with the right tools, you can overcome them. Talk to your occupational therapist. They – along with a certified driver rehabilitation specialist – perform tests to check what accommodations you need in order to drive safely. Some of those may include:
- Hand controls to operate the gas and brake pedals
- Spinner knob to turn the steering wheel
- Lifts for stowing wheelchairs and assistive devices
Mobility Devices
As your SPMS advances, you may need extra help to stay mobile and complete daily tasks. You may want to consider a mobility device.
What are mobility devices?
These tools help you walk or move around if you have mobility challenges. Your occupational therapist can examine your needs and recommend a mobility device to fit your needs. These include:
- Canes
- Walkers
- Crutches
- Wheelchairs
- Motorized scooters
- Scooters
“An initial fear of many clients is that using a brace or assistive device is a sign they are giving in to the MS progression and losing independence,” Smith says. ”But they really are tools to maintain independence and function. Each person needs to identify their real goal. This might be to continue working, or go to their son’s baseball game, or go to dinner with friends. A mobility device can help achieve these goals.”
How to pay for mobility devices
You can rent, buy, or borrow them.
You can buy mobility devices online through various medical equipment vendors. Ask your MS care team for recommendations. Medicare and most private insurance plans cover mobility devices. Other places that might offer coverage include:
- Vocational rehabilitation programs in your state.
- State protection and advocacy systems through the Administration for Community Living (ACL).
- National nonprofit organizations or private funders.
How to borrow mobility devices
If you want to borrow equipment, visit your local Center for Independent Living (CIL) or GotDME, a national directory where you can find places to borrow or donate mobility devices and other medical equipment.
Always check with your MS Care team before accepting donated equipment to make sure it meets your needs.
Things to consider before buying mobility devices
Talk to your doctor, physical therapist, or occupational therapist. They’ll help you decide which device will best suit your needs. Other things to think about before buying are:
Comfort. Is it well-cushioned, and will it hold up for long-term use? Does it include adjustable features, such as armrests?
Easy to transport. Does it fold easily? Will it fit in a car, or on public transportation, such as a bus or plane?
Warranties, repairs, and return policy. Check for any manufacturer’s warranty on the original equipment, as well as for repairs. Review the vendor’s return policy in case you’re not satisfied with your purchase.
Smart Technologies
In addition to the tools discussed above, there are several apps and voice-activated technologies that can do things like adjust lights, change thermostat settings, or unlock doors. Examples include Amazon Alexa, Siri, and Google Assistant.
Final Thoughts
Everyday tasks can be difficult when you’re living with SPMS, but there are things you can do each day to maintain your independence, reduce your risk of falling, and enjoy your quality of life. Remember, no two people experience SPMS the same. Do what you can, rest when you need to, and don’t be afraid to ask for help.
“Give yourself some grace,” Smith says. “We live in a time with so many high-tech and low-tech options to maintain mobility. If there is something you enjoy doing that has become a struggle, there is a good chance that there is a tool or device that will make it easier so you can continue to enjoy it.”
