Learning to drive with neuro disease

Driving Ambitions

ROLLING INSPIRATION reader Anne Moon shares her experience of learning to drive with a neurological disease.

As we enter a new year, I find myself reflecting on the challenges and victories I experienced this past year, along with the knowledge I gained – especially in terms of accomplishing my daily commute as a person with a disability. I’m a 53-year-old Capetonian who spent the first 37 years of my life without a disability.

In my younger days I was a brisk walker. However, that began to change gradually after I was diagnosed with a disease that damages the spinal cord, optic nerves and brain. Between 2002 and 2007 I experienced three episodes during which I was unable to walk without holding onto the walls and furniture.

These episodes lasted several weeks and were accompanied by a host of other signs that something was seriously amiss with my health. During the first of these episodes, I was also physically unable to drive a car for three weeks. My wonderful colleagues took turns ferrying me to and from work every day.

I underwent numerous tests, including two lumbar punctures, three MRI scans and countless blood tests. However, the results drew one blank after another until, finally, after five years of diagnostic limbo, the MRI scanner was suddenly able to pick up that I had central nervous system (CNS) lesions consistent with a demyelinating, neuro-degenerative disease.

Additionally, oligoclonal bands were detected in my cerebrospinal fluid. This provided further evidence that I had an autoimmune disease of the CNS. My neurologist handed me a diagnosis of multiple sclerosis (MS) and said that, although the disease is not fatal, it is indeed incurable.

The proverbial silver lining

I was living alone in Grahamstown at the time and I had no family in the province. The absence of a support system and the knowledge that I had an unpredictable disease that could strike again at any moment, leaving me dependent on a wheelchair and/or blind, did not deter me from taking risks and embracing change.

So I holidayed overseas alone, changed jobs and moved provinces. I became involved with the Multiple Sclerosis Association of South Africa (MSSA). Later on, I also joined the QuadPara Association of South Africa (QASA). Through my involvement with these associations, I got to know many fellow sufferers, MS activists and caregivers.

Many are among the most phenomenal, compassionate and inspirational human beings I have ever encountered. They have enriched my life in a way that I cannot begin to describe. I am immensely indebted to these earth angels who have given me the tools to manage my MS in an ultra-confident, upbeat manner. They are the proverbial “silver lining”.

Fast-forward to today. I have had 12 attacks of MS to date. Each has lasted several weeks or months, and the cumulative damage they have caused has left me with significant neurological deficit. For more than two years already I have been unable to ambulate independently.

I now require a four-wheel rollator to mobilise. I have developed bilateral foot drop and myoclonus in both feet. As a result of this, I am no longer able to drive an unmodified vehicle.

I have the type of MS that is optico-spinal in nature. It manifests itself much like a similar disease called neuromyelitis optica, in the sense that it attacks my spinal cord and optic nerves but leaves my brain (and cognitive faculties) relatively unaffected.

This has been a blessing and a saving grace for me, as it has enabled me to continue performing a full-time job in an office. It has also enabled me to continue driving, something that some people with MS are unable to do. The problems with my feet only manifested when I reached the more advanced stage of my MS.

However, my feet became floppy and I struggled to move my feet on and off the pedals. I also developed extreme spasticity in my feet, which presented as myoclonus or sudden uncontrollable jerking movements that caused my feet to bounce on and off the pedals involuntarily.

My wake-up call came when I started noticing that cars behind me were keeping a larger than normal following distance. I knew then that it was time to have my car fitted with hand controls. Relying on a lift club to get to work would not have been a long-term solution for me, as I am a very independent person.

Uber and/or UberAssist wouldn’t have been an option either, as my daily commute to and from work would have cost me thousands per month. Having said that, UberAssist is a splendid solution for the odd special-occasion trip, as it caters specifically for people with disabilities and the elderly. Its vehicles can accommodate mobility aids and service animals.

Getting your driving ability tested

When I realised that my driving was becoming dangerous, I decided to have myself assessed by an occupational therapist (OT) who specialises in driving fitness assessments. She conducted numerous tests, including an on-road driving evaluation, to determine whether I had the necessary physical, visual and cognitive function to drive safely, and whether my vehicle would require any adaptations.

(Now that I have done this assessment, I should be able to claim back tax relief from the South African Revenue Service [SARS], as a person with a disability, for a portion of the financial outlay necessitated by the adaptations to my vehicle, based on the findings and recommendations in the OT’s report.)

The final verdict of the driving fitness assessment was that my cognitive function is still unaffected by my MS and, hence, not a threat to my own safely or that of other road users. However, it was recommended that the vehicle I drive be an automatic transmission car, and that it be fitted with hand controls. These restrictions reflect on my new driver’s licence.

The OT recommended that I undergo the driving fitness assessment on an annual basis, as MS is a progressive disease. According to Dr Ellen Lahti, a US neurologist, about 22 percent of MS patients on the road are unfit to drive, based on a formal road-safety test. However, many of them are unaware of this until they are tested. 

Adapting the vehicle

My vehicle adaptations were done on August 27, 2018, and took about eight hours. When the car was returned to me, I was pleasantly surprised to find that the foot pedals had been left intact. Hence, my car can be driven either way. This allows me to drive it using the hand controls whereas someone else could still drive it using the pedals.  

Retesting for driving licence

I was advised to redo my driving licence for insurance purposes, as I would not be covered in the event of an accident following the changes to the vehicle without a restricted licence. However, the driving test would only comprise an eye test and a 15-minute road test to determine whether I was able to operate my hand controls safely. I would not be required to do any of the dreaded K53 manoeuvres!

I knew that I would need driving lessons in order to feel confident driving with my hand-controls. The gentleman who adapted my car advised me to contact QASA in this regard. I soon learnt that QASA runs a marvellous programme called the Driving Ambitions Programme, which was started by CEO Ari Seirlis.

The programme makes it possible for people with limited mobility to learn to drive. QASA has a fleet of vehicles with various adaptations for people with mobility impairments to participate in driver training, with the ultimate goal of obtaining a licence. It was through the Driving Ambitions Programme that I was introduced to my driving instructor, Theuns Botha of MIB Driving School.

My lessons with Theuns were conducted in an adapted (hand-controlled) vehicle that was made available through QASA. It was a dual-control car, meaning that there were also pedals on the passenger’s or instructor’s side of the vehicle for safety reasons. Theuns was an awesome instructor. After 10 lessons I was ready to take my test.

I am pleased to say that I passed on my first attempt on November 26, 2018, at Durbanville Traffic Department. There really was nothing intimidating about the test at all. QASA’s Driving Ambitions Programme has enabled me to retain my “wheels”, thereby safeguarding my independence and enabling me to remain in the workforce until the normal retirement age. For this I am immensely grateful.

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