MS in Wonderland

Navigating the Unpredictable Path of Multiple Sclerosis and Mobility

• By Elisha Bury
• Jun 01, 2012

A diagnosis of multiple sclerosis (MS) is something like falling down the rabbit hole in “Alice in Wonderland.” You land in an unknown part of the world where the rules don’t quite make sense.

Part of the unknown is that you’re never sure how MS will play out. Essentially, myelin sheaths surrounding the neurons—those little nerves that are responsible for communicating your brain’s messages to the rest of the body—are destroyed and signals are disrupted, according to the National Institute of Neurological Disorders and Stroke (NINDS). Which neuron happens to lose the myelin sheath makes a big difference: If it’s a vision neuron, then vision is affected; if it’s a muscle neuron, then muscles become weak.

To add to the confusion, the relapsing remitting variety of this disease, which happens to affect 90 percent of people with MS, according to NINDS, can put you on a whirlwind tour in which sometimes function is there and sometimes it’s not, depending on if the body can repair the damaged myelin sheath. It can feel like one moment you’re having tea and cakes with the Queen of Hearts and the next moment she’s decided to behead you.

All of that is to say that navigating the mobility effects of such a variable disease can be frustrating at best. How can you make a plan if you and your doctor don't know what your body will do next?

Get on the Mobility Path

People with MS can experience a variety of symptoms that impact mobility, including muscle weakness, fatigue and decreased endurance as well as challenges with range of motion, coordination, fine motor skills and gross motor dexterity, says Steve Boucher, a registered and licensed occupational therapist and clinical education specialist at Sunrise Medical, a Fresno, Calif.–based manufacturer of home medical equipment.

Equipment can play a major role in helping people complete daily tasks without tiring out, he says.

However, the biggest obstacle to using mobility equipment is not the changing MS symptoms; it's the emotional impact of the disease.

"Normally (MS) hits people in the middle of their lives when they're active with children and they're running around, and they're worried about the social acceptance of equipment," says Matt Weaver, a physical therapist, certified assistive technology professional (ATP) and the national product education manager at Permobil Inc., a Lebanon, Tenn.–based manufacturer of power wheelchairs and seating systems. "They need to focus more on the quality of their lives than what society will think about them using a cane or a scooter or a chair."

Weaver says getting people comfortable with using the equipment is one of the biggest challenges for clinicians when they are trying to prescribe equipment. People tend to downplay their symptoms to avoid getting into more complex equipment, but that can hurt them down the line.

Sometimes talking to someone else who has MS can help people become more comfortable with using equipment. For example, through support groups, Weaver says, people with MS can connect with someone who fought using equipment at first and understands what they are going through. Just knowing someone else who is benefitting from equipment can make someone with MS feel better about using mobility devices, he says.

Understand Mobility Options

Because of the variability of the disease, several different types of mobility equipment may be appropriate throughout the disease process—even throughout different times of the day. It’s not unusual for a person with MS to use a rolling walker, cane, manual wheelchair, scooter and power chair.

So don’t think that just because you’re having mobility issues that you’re immediately going to be put in a wheelchair.

“MS clients can have more energy throughout various times of the day, and therefore may be able to use a walker instead of a wheelchair, or a manual wheelchair instead of a power wheelchair,” Boucher says.

With that kind of variability, how do you know what piece of equipment is right for you?

The first step is to find a mobility provider who you can trust early in the disease process and establish a relationship, Weaver says. "Count on your neurologist, your therapist and your equipment vendor to help you case manage," he says. "Ask a lot of questions."

At the same time, the clinician doing the evaluation is going to ask a lot of questions.

“As a clinician, you try to understand how long the individual has been diagnosed with MS, how long they have had symptoms, and then what the good days and bad days are like—on any given week how many good days versus bad days,” Boucher says.

Understanding how the disease is progressing helps the team choose the right equipment. The team will also try to place people into equipment with the lowest profile so that independence can be maintained for as long as possible, Boucher says.

“Most do not want to get into a power chair right away,” he says. “Depending on the severity of disease, therapists work on upper body strengthening and want their patient to maintain as high level as possible.”

When power is eventually needed, Weaver says that often people with MS are prescribed a scooter to help them get from point A to point B. That piece of equipment is easy to use and perfect for when the disease has plateaued for a long period of time.

However, Weaver says that once a person begins to experience frequent worsening symptoms, a scooter cannot accommodate the added components, such as tilt and recline, to help someone sit comfortably in the equipment for eight hours a day. That's when a power chair might be appropriate.

Consider Mobility Components, Funding

Seating systems are important to the equipment selection because clinicians often use these components to address issues such as pain and comfort, which are common for people with MS, Boucher says. People with MS also need seating systems that are adjustable to address progressing and changing symptoms.

Power options, such as tilt and recline, help with pressure management, Weaver says, which means people can sit comfortably for longer periods of time. In addition, seat elevators assist people who have trouble moving from sitting to standing positions. These elements are important not because people with MS lose sensation but because "they'll know they need to move and shift the pressure, but they're not going to be able to physically at times," he says.

Managing body temperature is also an important consideration for people with MS. According to the National Multiple Sclerosis Society, heat can cause symptoms to become temporarily worse by further inhibiting the ability of damaged nerves to conduct signals. Weaver says the types of materials chosen for seating components can help keep the skin cool.

Planning ahead is something to consider when looking at power chairs.

"I've seen MS cases that present like a high-level quad; they can be very severe," Weaver says. "So early on it's important that you have the electronics on the device to allow for other types of drive controls other than a joystick for worse-case scenarios and then the flexibility of the seating system to be able to add seating components."

A very experienced mobility provider, especially one with the ATP or assistive technology professional credential, can recommend mobility products that have built-in flexibility as well as provide advice on working with insurance providers to get the equipment funded. Such a provider can prevent people with MS from making costly mistakes.

Weaver says he has seen many cases in which a person billed their insurance for a scooter and then a month later needed a power wheelchair but couldn't get it. An ATP can recommend that you save your benefits for the higher-priced items and take advantage of loaner scooters or other mobility devices in the mean time.

Modify Your Behavior

No matter what mobility equipment you use or are likely to use in the future, there are some things you can do to reduce the symptoms you experience. The most important is to conserve energy.

“Energy conservation training teaches individuals to complete tasks that require the most energy first thing in the morning when they typically have the most energy,” Boucher explains.

Weaver says budget is the key word. "You've got a budget of energy when you wake up in the morning, and you need to budget it out throughout the day. You've got to be careful not to try to be completely independent up until lunchtime because you may not have anything left."

Mobility equipment can help with energy conservation, such as using a scooter so you don't have to walk far, and clinicians typically recommend very lightweight mobility products that require less energy to use.

However, you should also consider other aspects of your life. Can you take an elevator or escalator instead of using the stairs? Do you need a ramp to help you more easily get into your home?

Weaver says that keeping cool is another important way to help prevent worsening symptoms.

"If you're doing things outside, working in the yard or even going for walks with an ambulatory device, do it while it's cool," Weaver says. "Don't do it in the heat of the day."