My experience learning to drive with Muscular Dystrophy

Motability Scheme customer, and disability and lifestyle blogger, Emma Muldoon has Muscular Dystrophy – a progressive muscle weakness. Here, she discusses her experience of driving with Muscular Dystophy, the Motability Scheme, and why ultimately she’d prefer to be a passenger. 


I remember thinking about learning to drive when I was around 16 years old as this is the age you can legally learn to drive when you have a disability. But I didn’t go for it then. It was largely down to my lack of confidence and self-doubt as to whether I would be physically able to drive because of Muscular Dystrophy.

The fear held me back for many years until my determination got the better of me. I just really wanted independence from being able to drive. After making some enquiries and speaking with the Motability Scheme, I was given all the information I needed to take the next step.

The first stage was attending an assessment center in Newcastle so that my driving abilities could be tested. Initially, it was daunting, but the assessors made me feel completely at ease especially when driving around the practice track in a Mercedes Sprinter van, which was much larger than the typical Wheelchair Accessible Vehicle (WAV) I would learn to drive in.

Surprisingly, I couldn’t believe how easy the different driving manoeuvres were. So I was delighted with their decision that I would, in fact, be able to learn to drive and could go ahead with the next stage. It gave me a huge confidence boost.  

The months following consisted of finding an instructor, choosing what WAV I wanted and sorting all the paperwork.

Once I picked what WAV I wanted (a black VW Caddy), I then began visiting my Motability Scheme supplier every couple of weeks and months. This was to ensure that the adaptations they were installing were suitable for me and give us the opportunity to make any necessary tweaks as and when.

How does Muscular Dystrophy affect my ability to drive?

I have Limb Girdle Muscular Dystrophy which means that I have progressive muscle weakness in my arms and legs. I was worried that my muscle weakness would affect my ability to drive because I can’t use my legs to operate the foot pedals or my arms to turn the steering wheel or gear stick.

Instead, the WAV was adapted with hand controls. The joysticks and soft-touch buttons enabled me to accelerate, steer, brake as well as activate the horn, indicators and lights.

Whilst waiting for my WAV and all the adaptations to be complete, I began preparing for the theory. I was so excited to pass the theory test first time, which made me even more excited to get on with the actual driving lessons.

Learning to drive with Muscular Dystrophy

5 CMP.jpgEmma and her WAV 

Once I took delivery of my new WAV, I quickly began driving lessons. I was nervous going out for the first few lessons and it was hard to believe that I was finally driving after all these years of wishing I could.

Although the driving instructor had dual controls on the passenger’s side in case of emergencies, it was still quite a surreal feeling being in control of the vehicle.

I believed my confidence would continue to grow the more lessons I took. Unfortunately, for me, it was the opposite. I found the more lessons I took, the less I want to do it. I wasn’t excited to work on new manoeuvres and I dreaded having to go on roads over 30mph. The faster the roads, the more unstable I felt in my wheelchair due to my lack of trunk.

I also noticed changes in my physical abilities that weren’t apparent when I was first assessed. Once again, this made me doubt my ability to drive and question how safe I felt driving.

Why I decided driving wasn’t for me

IMG_20200808_151356 CMP.jpgEmma as a passenger in her WAV 

It wasn’t easy, but I came to the difficult decision not to continue with driving lessons. But, I made the right decision for me. I’m happy being a passenger and haven’t lost any independence.

Named Drivers

Did you know that your Motability Scheme lease includes insurance for up to three named drivers, so if you don’t want to or aren’t able to drive yourself, your car can be driven by a family member, friend or carer?

For more information please see the link below.

Find out more

If anything, I’ve likely gained more freedom being a passenger as I may not have used my vehicle as much if I was the driver.

My current Motability Scheme vehicle is a Ford Tourneo Connect WAV which is driven by my partner and Mum. I enjoy being a passenger as it allows me to relax and enjoy the journey especially on days when I’m feeling tired or sore. It also means I have the opportunity to enjoy the views or do some work on my phone like reply to emails. Most importantly though, I’m the best navigator.

I joined The Motability Scheme around fifteen years ago. Throughout these years they have supported me as my condition changes. I’ve had various Motability Scheme vehicles and have always felt reassured that they will help whenever I need something. Whether it be breaking down on my way to the airport to catch a flight, needing a temporary hire vehicle or replacement tyres. All the insurance, mot and servicing is taken care of, which means we don’t have to worry about it.

You can read more from Emma on her blog Simply Emma

Interested in joining the Scheme?

About the Scheme

The Motability Scheme offers an all-inclusive package that allows anyone in receipt of higher rate mobility allowances to use their mobility allowance to lease a car, scooter, powered wheelchair or Wheelchair Accessible Vehicle. The Scheme provides flexible and hassle-free access to a brand new, reliable vehicle of your choice. As well as a great choice of cars, we also provide a wide range of Wheelchair Accessible Vehicles, scooters and powered wheelchairs.

Eligibility

To join the Scheme, you must be in receipt of higher rate mobility allowances (such as the Enhanced Rate of the Mobility Component of Personal Independence Payment or the Higher Rate Mobility Component of Disability Living Allowance). Use our eligibility checker tool to see if you’re eligible.

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