Adaptive Driving for CMT

Getting into a car feels automatic until your body stops cooperating. One day, you’re running errands on muscle memory, and the next, you’re pulling over because your foot won’t reliably find the brake. That frightening gap between “I’ve driven for decades” and “I’m not safe anymore” is where adaptive driving begins, and it’s far more human and more high-tech than most people realize.

We follow Bernadette, who lives with Charcot-Marie-Tooth disease (CMT), as she goes from surrendering her vehicle to rebuilding her independence with adaptive equipment. Along the way, we lean on Susie’s perspective as an occupational therapist and certified driver rehabilitation specialist, a profession that evaluates vision, reaction time, strength, sensation, and cognition, then matches the driver to the right setup. The goal is simple and tough: protect public safety while keeping people connected to work, family, and community.

Then we get practical: safe transfers, ramps, six-way seats, left foot accelerators, hand controls, and the clever “low-tech” solutions that let a spouse or valet still drive the car normally. We also unpack the leap from mechanical levers to modern drive-by-wire adaptive controls, and why retraining your brain can feel like learning to drive all over again.

Thanks for listening! Learn more at hnf-cure.org and subscribe for more updates on CMT research and advancements.

Transcript

When Driving Becomes Impossible

SPEAKER_01 0:00

You know, for most of us, getting into a car is just well, it's a completely mundane chore.

SPEAKER_00 0:04

Oh, absolutely. It's totally automatic.

SPEAKER_01 0:06

Right. You'd grab your keys, you hop in, turn the ignition, and decades of muscle memory just take over. You don't even think about it.

SPEAKER_00 0:12

Yeah, your brain is probably on your grocery list already.

SPEAKER_01 0:14

Exactly. But imagine what happens when an illness or like an injury suddenly makes that deeply ingrained routine physically impossible.

SPEAKER_00 0:24

It's terrifying.

SPEAKER_01 0:26

Welcome to this deep dive learner. Today we are exploring the hidden, really fascinating world of adaptive driving.

SPEAKER_00 0:33

It is such an incredible topic.

SPEAKER_01 0:35

It really is. And we're pulling from two amazing sources today. We have an expert presentation by Susie, who is an occupational therapist, and a certified driver rehabilitation specialist.

SPEAKER_00 0:45

A super specialized field.

SPEAKER_01 0:46

Very much so. And we also have a firsthand account from Bernadette. Now, Bernadette is a woman with a disability who navigated this exact journey.

SPEAKER_00 0:54

From losing her mobility entirely to fighting to get it back.

SPEAKER_01 0:57

Yeah. So, okay, let's unpack this because this isn't just about cars or technology. This is really about preserving human independence.

SPEAKER_00 1:05

I mean, driving in America specifically is so heavily equated with freedom.

SPEAKER_01 1:10

Oh, 100%. It's a rite of passage.

SPEAKER_00 1:12

Right. It dictates where we work, who we see, and in many ways, our identity within our communities. So when an illness or a sudden trauma happens, the immediate assumption, the terrifying assumption is that the keys are just gone forever.

SPEAKER_01 1:27

Right. Like that part of your life is just over.

SPEAKER_00 1:29

Exactly. But what's fascinating here is that instead of just taking the keys away, there is an entire obscure medical field totally dedicated to keeping you on the road safely.

SPEAKER_01 1:40

But before we dive into the wild technology, and we will get to that because it is wild, we have to establish the emotional toll of hitting that physical roadblock.

SPEAKER_00 1:49

Yeah, you really can't ignore the emotional side.

SPEAKER_01 1:51

Right. And Bernadette's story paints such a vivid picture of this. She was 35 years old, she'd been driving completely normally since she was 16, but she lives with a condition called CMT.

SPEAKER_00 2:01

Right, charcomery tooth disease. Which is it's a neurological disorder that essentially degrades the peripheral nerves. So for the person experiencing it, the nerves

Bernadette’s CMT Turning Point

SPEAKER_00 2:10

in their extremities, like their hands and feet, they just stop sending the correct signals to the muscles.

SPEAKER_01 2:15

Wow.

SPEAKER_00 2:15

Yeah, it leads to gradual weakness, particularly in the lower legs and feet. So lifting your foot or holding steady pressure becomes increasingly difficult.

SPEAKER_01 2:25

And you can see how that translates directly to driving.

SPEAKER_00 2:28

Oh, instantly.

SPEAKER_01 2:29

Bernadette noticed she was struggling just to switch her foot from the gas pedal to the brake.

SPEAKER_00 2:34

Oh.

SPEAKER_01 2:35

She talked about this one specific drive to her brother's house. It was an eight-minute drive.

SPEAKER_00 2:40

Just eight minutes.

SPEAKER_01 2:40

Eight minutes. But she had to pull over multiple times. She nearly got into several accidents because her legs just weren't responding.

SPEAKER_00 2:47

That is so scary.

SPEAKER_01 2:49

So to protect herself, and honestly to protect everybody else on the road, she made the agonizing decision to surrender her vehicle. She literally called her uncle and told him to just come take the car.

SPEAKER_00 3:00

Wow. And that single decision to hand over the keys, I mean, it cascades into every other area of a person's life. Yeah. Bernadette described the next year and a half to two years as the hardest time of her life. Outside of losing her father, she entirely lost her autonomy.

SPEAKER_01 3:16

Because she had to rely on this mobility scooter. And the kicker with the scooter was its sheer weight.

SPEAKER_00 3:22

Oh, right. Those things are incredibly heavy.

SPEAKER_01 3:24

So heavy. She needed a strong friend just to dismantle the thing and load it into a trunk anytime she wanted to ride somewhere.

SPEAKER_00 3:32

Which means she couldn't just leave her house on a whim.

SPEAKER_01 3:35

Exactly. It's like a it functions like a social phantom limb.

SPEAKER_00 3:38

Oh, that's a great way to put it.

SPEAKER_01 3:39

You keep reaching for the independence that used to be there, expecting to just grab your keys and run to the grocery store, only to realize you are completely severed from your own community.

SPEAKER_00 3:49

Yeah, and the first step to treating that phantom limb, as you called it, is entirely medical. Right. You don't just go out and buy a modified car from a dealership, you start with your doctor. Which makes sense. The critical question is have you maximized your physical recovery? If the doctor determines that your current physical state is your permanent baseline, that is when you get referred to a driver rehabilitation specialist.

SPEAKER_01 4:12

Which Susie, the expert from our sources, calls the world's best kept secret.

SPEAKER_00 4:17

And I have to admit, I assumed these specialists were just like DMV driving instructors with a bit of extra training.

SPEAKER_01 4:23

Oh, not at all. They are highly trained medical professionals, usually occupational therapists.

SPEAKER_00 4:29

Okay.

SPEAKER_01 4:29

Their job

The Hidden Field Of Driver Rehab

SPEAKER_01 4:30

isn't just to measure how much leg strength you've lost, they evaluate how your brain processes information, how you learn new motor skills, how you coordinate your movements under stress.

SPEAKER_00 4:39

Wow, it's so much deeper than just physical mechanics.

SPEAKER_01 4:42

Exactly. Their entire goal is balancing public safety with your personal independence.

SPEAKER_00 4:46

But you know, solving the physical challenge of driving doesn't matter if you can't even get to the clinic to be evaluated in the first place.

SPEAKER_01 4:52

Which is a huge hurdle.

SPEAKER_00 4:53

And I love this detail from Susie's presentation. The evaluation actually happens in the comfort of your own home. The specialist comes to you. Yeah, it removes a massive logistical barrier right off the bat. When the specialist arrives, they do a thorough clinical assessment. They test your vision to ensure you still meet state legal requirements. Right, safety first. They test your physical strength, your reaction time, your sensation. But crucially, they do cognitive activities to understand your learning style.

SPEAKER_01 5:22

Because everyone learns differently.

SPEAKER_00 5:24

Right. If you are someone who learns by doing rather than by listening, they need to know that before you ever get behind a wheel.

SPEAKER_01 5:31

And a huge part of this initial assessment is figuring out the geometry of just getting into a vehicle.

SPEAKER_00 5:36

Oh, the transfers. Yes.

SPEAKER_01 5:38

Susie mentioned a client named Dave who used a power wheelchair. To even begin training in the specialist's modified van, they had to figure out a safe transfer method. He ended up using a specialized sliding board, acting almost like a bridge, to shimmy from his chair into the driver's seat.

SPEAKER_00 5:55

Because if you can't transfer safely, the driver mechanics are completely irrelevant. But once the transfer is solved, we get into the hardware playground. Depending on the physical limitation, the engineering solutions are just incredibly customized.

SPEAKER_01 6:08

Yeah, give me an example of that.

SPEAKER_00 6:09

So for

Transfers First Then Adaptive Hardware

SPEAKER_00 6:10

instance, if a client has had a right leg amputation, or maybe a severe neuropathy affecting the right side, a specialist might install a left foot accelerator.

SPEAKER_01 6:19

Wait, how does that actually work mechanically? Do they rip out the entire floorboard and rewire the engine?

SPEAKER_00 6:24

No, usually it's a simple mechanical linkage. They install a new pedal on the left side of the brake, and a metal rod crosses behind the brake pedal to physically push the original gas pedal on the right.

SPEAKER_01 6:34

Oh, that's clever. And if both legs are impacted, like in Bernadette's case with CMT, they move to hand controls.

SPEAKER_00 6:41

Right.

SPEAKER_01 6:41

Or if a driver only has the use of one arm, there are specialized steering devices. But and this brings up a massive practical question for me.

SPEAKER_00 6:50

What's that?

SPEAKER_01 6:51

If a car is literally bolted with crossbars and hand levers, what happens if the driver's spouse needs to run an errand? Or, you know, they need to hand the keys to a valet? Is the car totally useless to anyone else?

SPEAKER_00 7:03

Specialists hear that concern constantly.

SPEAKER_01 7:05

I bet.

SPEAKER_00 7:06

But the engineering accounts for this beautifully. They use what are called low-tech blocks.

SPEAKER_01 7:11

Okay, what is that?

SPEAKER_00 7:12

Think of it as a heavy-duty physical shield that drops down over the original pedals. It prevents an adaptive driver from accidentally hitting the gas with a foot that might be spasming. Gotcha. But that shield can be quickly unclipped and removed by a family member. The original manufacturer pedals remain completely intact behind it.

SPEAKER_01 7:30

So a spouse or a valet can just pop the block off and drive the car completely normally.

SPEAKER_00 7:36

Exactly.

SPEAKER_01 7:36

That is a brilliant design. And the transfer technology is just as impressive. We're talking about remote control side ramps that deploy mechanically and these incredible six-way transfer seats.

SPEAKER_00 7:47

Oh, the six-way seat is a total game changer for preserving a driver's stamina.

SPEAKER_01 7:52

How does it work?

SPEAKER_00 7:53

The driver's seat uses an electric motor to slide all the way back into the cabin. Then it swivels 90 degrees to face the interior of the car.

SPEAKER_01 8:00

Wow.

SPEAKER_00 8:01

Right. And then it physically lowers or boosts the driver from their wheelchair directly into the seat. That's amazing. It means the driver isn't exhausting their upper body strength, just trying to hoist themselves behind the wheel.

SPEAKER_01 8:13

Which is huge. But mechanical solutions are great until you don't even have the shoulder strength for heavy mechanical levers anymore.

SPEAKER_00 8:19

Yeah, that's a real issue over time.

SPEAKER_01 8:22

And this brings us to the next generation tech. Bernadette's journey over the last decade really highlights this shift from analog hardware to digital interfaces. A huge leap. Eleven years ago, she got her first adaptive van, the Toyota Siena. It utilized manual hand controls. She physically had to push a lever forward to accelerate and push it down to break.

SPEAKER_00 8:46

And the problem with mechanical rods is that you are still using your own physical force to move the car's mechanisms. Over the course of a decade, that repetitive manual pushing actually damaged Bernadette's shoulder.

SPEAKER_01 8:56

Oh man.

SPEAKER_00 8:57

The physical toll of the solution was mimicking the very fatigue she was trying to avoid in the first place.

SPEAKER_01 9:02

Right. So a couple of years ago, she realized she needed an upgrade.

Drive By Wire And Modern Controls

SPEAKER_01 9:05

And the emotional side of this is so compelling, she desperately wanted an SUV.

SPEAKER_00 9:09

Yeah, not a van.

SPEAKER_01 9:10

She had been driving a van for 11 years because she thought that was the only vehicle that could accommodate a wheelchair. But she said an SUV made her feel more like herself.

SPEAKER_00 9:19

That identity piece.

SPEAKER_01 9:21

Yes. It was a smaller footprint, meaning she had to squeeze her chair in a bit more tightly, but she didn't care.

SPEAKER_00 9:26

And the technology in that new SUV is astonishing. To get in, she hits a remote just four times. The door slides open, LED lighting illuminates the ground for safety. Which is so and the ramp deploys automatically.

SPEAKER_01 9:41

And once she's inside, the electronic controls are a completely different universe from her old manual levers. She's utilizing a drive-by-wire system now.

SPEAKER_00 9:50

Right. Instead of a metal rod physically pushing a pedal, her hand controls use potentiometers.

SPEAKER_01 9:55

Okay, so digital.

SPEAKER_00 9:56

Exactly. When she moves the control, it sends a digital electronic signal directly to the car's engine control unit.

SPEAKER_01 10:03

She said barely touching the controls makes the car fly. It requires almost zero physical effort.

SPEAKER_00 10:08

Wow.

SPEAKER_01 10:09

Yeah. She also has a tripod mounted on the steering wheel for low effort steering, a seatbelt extender so she doesn't have to twist her spine, and a push-button start.

SPEAKER_00 10:17

And because her hands are entirely occupied with the gas, the brake, and the steering, the engineers installed a custom button pad right by her door panel.

SPEAKER_01 10:27

So smart.

SPEAKER_00 10:28

She can literally just tap it with her elbow to activate the windshield wipers or the turn signals without ever taking her hands off the primary controls.

SPEAKER_01 10:37

It really makes me think about the transition from traditional driving to adaptive driving, like switching from a heavy, clunky manual typewriter to a highly sensitive iPad touchscreen.

SPEAKER_00 10:48

That's a perfect analogy.

SPEAKER_01 10:49

It's thrilling and it's effortless once you know how to use it, but it requires completely rewriting decades of deeply ingrained muscle memory. Your brain has to unlearn everything your feet used to do and remap those instincts to your hands and elbows.

SPEAKER_00 11:02

Yeah, and this raises an important question. How do you safely rewire a brain like that? You have to adapt the driver to the car? If we connect this to the bigger picture, the training process takes anywhere from four to eight weeks. It usually involves three to eight hours of actual on-the-road driving practice.

SPEAKER_01 11:19

That sounds intense.

SPEAKER_00 11:20

It is, but the specialist breaks it up into manageable hour and a half to two-hour chunks.

SPEAKER_01 11:26

To prevent the driver from getting physically or mentally fatigued, because getting behind the wheel with entirely new controls is incredibly daunting.

SPEAKER_00 11:34

Oh, absolutely.

SPEAKER_01 11:35

Bernadette talked about her very first lesson. The specialist brought the training car

Training The Brain For New Inputs

SPEAKER_01 11:40

right to her neighborhood. And despite having driven for almost 20 years before her CMT worsened, she felt like she was 16 again.

SPEAKER_00 11:47

The nerves must have been crazy.

SPEAKER_01 11:48

On her very first try, she accidentally put the car in forward instead of reverse. She was terrified and ready to quit.

SPEAKER_00 11:56

But the specialist is trained to manage that exact psychological panic. They guided her, assuring her the brain would eventually map the new controls just like riding a bike. It worked. By the end of it, she ended up passing her state parallel parking test on her very first try.

SPEAKER_01 12:11

Which is better than I did when I was 16.

SPEAKER_00 12:13

Same year. And that mental rewiring takes time, which actually synchronizes perfectly with the bureaucratic side of things.

SPEAKER_01 12:19

Oh, right. The paperwork.

SPEAKER_00 12:21

During that four to eight week process, there is a vital state licensing pause. The specialists will intentionally pause the physical driving training while they wait on state medical board approvals to update the driver's license with new adaptive restrictions. That makes sense. Yeah, they time the final driving lessons perfectly so the driver's skills are completely fresh right before they take their official road test.

SPEAKER_01 12:43

It is so easy for us to sit here and fall in love with all this technology, right? The remote ramps, the elbow buttons, the digital signals. But the financial reality of this has to be brutal.

SPEAKER_00 12:53

It is definitely a hurdle.

SPEAKER_01 12:54

How on earth does an average person afford a highly customized, structurally modified, brand new SUV?

SPEAKER_00 13:02

While the sticker shock is severe, Bernadette's custom SUV cost a total of $125,000.

SPEAKER_01 13:09

$125,000. How does anyone navigate a system like that without going completely bankrupt? That is the price of a small house in some parts of the country.

SPEAKER_00 13:19

It requires a highly layered approach to funding. First, you have the base cost of the vehicle itself, which was about $45,000.

SPEAKER_01 13:26

Okay.

SPEAKER_00 13:27

Bernadette managed that portion by selling her old adapted van on the secondary market, receiving financial help from her family, and working directly with a local dealership team Toyota to get the base car.

SPEAKER_01 13:37

But that still leaves an $80,000 gap

Licensing Paperwork And Road Testing

SPEAKER_01 13:40

for the actual modifications.

SPEAKER_00 13:42

Exactly.

SPEAKER_01 13:42

And this is where a truly incredible resource comes in. It's a state agency called OVR, the Office of Vocational Rehabilitation.

SPEAKER_00 13:49

They are amazing.

SPEAKER_01 13:51

They stepped in and paid the staggering $75,000 cost for the mobility equipment.

SPEAKER_00 13:56

Wow.

SPEAKER_01 13:57

But why would a state agency justify spending $75,000 on a single citizen's car?

SPEAKER_00 14:03

It really comes down to the economics of disability. OVR's entire mandate is helping people with disabilities secure and maintain employment. Right. If Bernadette cannot drive, she cannot get to her job. If she loses her job, she stops paying income tax and likely shifts onto permanent state disability pensions and subsidized health care.

SPEAKER_01 14:20

Oh, I see.

SPEAKER_00 14:21

For the state, investing $75,000 up front to keep a citizen actively employed and paying taxes actually saves the government hundreds of thousands of dollars over the course of that person's lifetime.

SPEAKER_01 14:34

That is a fascinating economic reality. It's an investment with a massive return.

SPEAKER_00 14:38

Exactly.

SPEAKER_01 14:39

Because of that grant, Bernadette drove away with a fully customized $125,000 vehicle and entirely zero car payments.

SPEAKER_00 14:48

That is incredible.

SPEAKER_01 14:50

But for people who might not qualify for that exact vocational grant or who don't have family members

The Real Cost And How It’s Funded

SPEAKER_01 14:55

able to chip in for the base car, there are their paths, right?

SPEAKER_00 14:58

Absolutely. The secondary market is a massive part of this ecosystem.

SPEAKER_01 15:01

Oh, used cars.

SPEAKER_00 15:02

Yeah. Bernadette's quote unquote new car actually had 200 miles on it because the previous owner had unfortunately passed away shortly after it was built. Oh, wow. Companies like Brawnability specialize in refrigating and selling used adaptive vehicles for significantly less than a brand new custom build. The financial hurdle is high, but there are dedicated pathways designed to get people over it.