Driving riders with multiple sclerosis: heat sensitivity, fatigue, and mobility that changes

Heat comes first

Temperature is the part of an MS rider’s trip that the driver controls most directly. MS damages the myelin coating on nerves throughout the central nervous system, and NINDS notes that many people with MS feel worse with a fever or in heat. The Multiple Sclerosis Association of America (MSAA) puts heat sensitivity at as many as 80 percent of people with MS.

The trigger is small. MSAA says even a slight rise in core temperature, from exertion, a hot or humid place, or a fever, slows signals along damaged nerves. The symptoms it lists are the ones that make a ride harder:

• Blurred vision.
• More fatigue and weakness.
• Poor coordination.
• Sometimes slurred speech or slow, cloudy thinking.

The good news is that it passes. MSAA calls this a pseudoexacerbation: no new nerve damage, and the symptoms fade once the person cools down. For example, a rider who reaches the van weak and unsteady after a hot walk down the driveway may steady once the cabin cools them. A rider who sits in a hot van may arrive at the clinic weaker than when they left home.

Set up the van before you arrive

Cool the cabin before the pickup, not after the rider is aboard. In a 2022 survey of 757 people with MS, the most common ways they protected themselves were air conditioning and changing what they wore, and fatigue was the symptom that heat and cold worsened most.

Some states write the standard down. Virginia’s fee-for-service NEMT vehicle rules take the reading at the back of the vehicle, not at the dashboard: the cooling has to bring the rear down to 68 degrees, and the heater has to bring it up to 74.

A few more habits:

• Keep the air running while you wait at a hot curb, where local idling rules allow it.
• Shade the loading. Park so the rider is not standing on hot pavement in direct sun while the ramp or lift deploys.
• Let the rider bring cooling gear. MSAA lists cooling garments and cold drinks among the ways to cool down, and it runs a program that gives cooling vests to people with MS who qualify.
• Do not overcorrect. The same survey found 13 percent of respondents were sensitive to cold only and 29 percent to both heat and cold. MSAA notes cold can bring more spasms and stiffness. Ask the rider what setting they want.

Heat days strain every rider, not just those with MS. Our bad weather policy guide covers planning for extreme temperatures across the schedule.

Fatigue changes the timing

Fatigue shapes the schedule as much as heat does. MSAA says disabling fatigue affects as many as 8 in 10 people with MS, and NINDS describes it as both physical, tired arms and legs, and mental, slower thinking. MSAA’s advice to people with MS is to plan activities for cooler times of day and to rest between them, because a short rest often recharges them enough to finish a task.

For dispatch, that means:

• Avoid long waits. A rider left waiting at a hot clinic entrance uses up energy they needed for the trip home.
• Keep the ride direct. A long detour for another pickup costs this rider more than most.
• Ask about the return leg. A rider who managed the morning may have little energy left for the trip home after therapy or an infusion.

Mobility that changes from week to week

Do not copy last week’s booking without asking. MSAA says mobility in MS can vary daily and even hourly. It lists the problems that show up most:

• Transitional movements: sitting to standing, and moving from one seat to another.
• Walking problems: foot drop, a knee that buckles or locks back, stiffness, and weakness.
• Balance trouble and falls while sitting, standing, and walking.
• Steps and changes in surface, such as a curb or the van step.

NINDS names ataxia, meaning unsteady and uncoordinated movement, as the most common walking problem, and says people with severe ataxia generally do better with a cane or walker. Some riders wear an ankle-foot brace (AFO) that holds the foot and ankle in position. MSAA also notes that some people use a wheelchair or scooter only in certain situations, to save energy.

So the level of service can change from one trip to the next. For example, a rider who walked with a cane in October may need a wheelchair van during a relapse in November, then go back to the cane. Confirm the mobility aid at every booking and again in the reminder call. When the van that shows up does not match the rider, the trip can fail or be paid at a different rate, which our guide to the wrong level of service covers.

Spasticity during transfers and securement

Spasticity is muscle tightness, and in MS it usually affects the calves, thighs, groin, and buttocks, according to MSAA. A study of 701 people with MS that MSAA cites found 85 percent reported some degree of it. Mild stiffness can even help a person stand. More severe stiffness is painful and makes every movement take more effort.

What drivers will notice is legs that resist bending, or that jerk or straighten on their own during a transfer. Move limbs slowly, give a spasm time to ease before going on, and do not force a stiff leg onto a footrest. MSAA notes that pain from something else, such as a skin sore or an infection, can make spasticity worse. If a rider who is usually loose is suddenly stiff, mention it to the caregiver.

Spasms can also shift a rider in a wheelchair after securement. Check the lap belt position again before you pull away, and again after a long ride. Our wheelchair securement guide covers the tie-down and belt rules.

Bladder urgency on longer rides

Bladder problems are common in MS. NINDS lists frequent urination, urgency, and loss of bladder control. MSAA explains that the bladder muscle can contract on its own, so a rider may feel an urgent need to go even when the bladder holds little.

This changes long trips more than short ones. MSAA advises people with MS to drink fluids at regular times and to empty the bladder on a schedule, about every 90 minutes to two hours, rather than cutting back on fluids. For a ride across the state, that means:

1. Ask at booking whether the rider needs restroom stops and how often.
2. Plan the stops where a restroom is accessible for the rider’s mobility aid.
3. Do not rush a rider out of the clinic restroom to save time at pickup.
4. Treat an accident as routine. Keep cleanup supplies in the van and handle it without comment.

Vision and thinking

MS can blur vision, cause double vision, or bring on optic neuritis, an inflammation of the optic nerve that causes pain and vision loss, according to NINDS. It also says thinking and memory problems affect up to 75 percent of people with MS. For the driver, that means reading the trip details aloud, confirming the destination, and giving the return plan in writing when the rider travels alone.

Infusion days and relapse treatment

Many MS riders travel to an infusion center for treatment that slows the disease. These visits are long and run on fixed cycles, so dispatch can plan them weeks ahead. The FDA labels for the three common infusions set the schedule:

The chair time is not the whole visit. Check-in adds time, and the Ocrevus and Briumvi labels call for a steroid and an antihistamine such as diphenhydramine before each infusion. MedlinePlus warns that diphenhydramine can make people drowsy, so expect a sleepy rider on the way home and give them extra help at the door.

Relapses add short-notice trips. Cleveland Clinic notes that severe attacks are often treated with corticosteroids such as methylprednisolone, sometimes given through an IV. A rider who usually walks may need a wheelchair van for those visits.

Because infusion times vary, book the return as a will-call and confirm the start time with the infusion center the day before.

Running MS rides in HealthRide

On the dispatch board, flexible return trips hold their place and activate the moment the passenger is ready, which fits an infusion that runs long. Wheelchair, stretcher, and oxygen needs are matched. When a rider’s mobility changes, update the trip, and Ryder Go warns you if that wheelchair trip is about to go to a van without a lift.