Join us as we take a peek into the lives of community members of all ages and from all walks of life as they show us how they’ve adapted to navigate their world with Nemaline Myopathy.

Hit the open road with Lucinda in the very first episode of our new multi-part series, InstaNM!

As a 15 year old, Lucinda Lee had the same dream as many teenagers: gaining the independence and freedom of getting her Driver’s License! In this episode, Lucinda shows us how she was able to make that dream a reality and how it’s opened up her world:

“Driving had always seemed exciting and I wanted independence so badly, but I found driving to be stressful, fatiguing, and harder than I had expected because of my muscle weakness.

I met with an occupational therapist who specializes in adapted driving to have an assessment of my needs done. I evaluated a lot of adaptive driving options, then I had the the final recommendations made a reality in a customized vehicle.”

Changes made to the van from factory:

  • BraunAbility wheelchair ramp
  • Middle seats removed to allow space for a large wheelchair
  • Automatic lock for powerchair to be securely tied-down
  • Manual locking hooks for mobility scooter
  • Power station for charging medical equipment
  • 50% less effort steering
  • Fully articulating driver’s seat with remote control to adjust
  • Custom seat cushion and left armrest
  • Hand controlled gas and brake option
  • Foot pedals (gas/brake) the same height and moved closer to me
  • Heel platform to reduce leg fatigue

Factory features that make driving easier for:

  • 360 degree camera view all around the vehicle
  • Back-up camera with guide-lines and warning alarms when obstructions are present
  • Adaptive cruise control that works down to 0 for when driving in stop & go heavy traffic
  • Lane changing assistance with alarm when it’s not safe to move over
  • Easy to use electronic transmission shifter as a dial
  • Many automatic features that do a certain job so thatLucinda doesn’t have to, such as rain sensing wipers and high-low beam sensors in the headlights
  • Van model with the most interior room so Lucinda can turn her wheelchair all around, get out of it, transition to the driver’s station, plus bring along lots of equipment and passengers.

Pros and Cons of Independent Driving:

“I feel safer and more confident while driving my customized vehicle. I like having the option to go wherever I want, being able to get my mobility devices into and out of the vehicle on my own, and being able to transport myself. I know I’m not stuck someplace if I don’t want to be, and that is liberating.

Because I keep the driving station accessible for anyone who’d like to drive, it provides the most options for my lifestyle and my family. We can switch drivers at any time during an outing or road trip, for example. I can get too tired to drive pretty easily so it’s good to have options.”

Thanks for showing us around, Lucinda!

*Stay tuned for future episodes of InstaNM to see how other NM Community Members and their families have found unique tips and tricks to meet every day challenges.

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