MS: Busting the Myths
December 17, 2024 | Life with MS, Mobility Aids, My Story, News, Newsletter
I always enjoyed driving, be it around town or going further afield and my role for work also required going to meetings out of town.
Like a lot of people with MS my legs are the most affected and back in 2022 I thought what would I do if I couldn’t use my feet to drive my car. That put a little bit of panic in as I thought “oh no there goes jumping in the car to by ice-cream”!! It was a little more serious than that, it would be by independence and psyche as jumping in the car and going out keeps me sane.
I knew you could get hand-controlled vehicles and heard that Burwood Hospital may be able to help.
I contacted them and organised for what I thought was a test drive with a hand-controlled car. When I got there, it wasn’t quite what I expected, I was told I shouldn’t have bought my car as if I failed my test, they would take my licence off me there and then. They were putting me through an actual driving test, which I was very apprehensive about, after driving for over 40 years, had I picked up bad habits? I did pass but only got to try the hand-control vehicles for 5minutes around a carpark. The person testing me said I was fine; wrote a report and said you can contact Enable to see if funding would be available. That was that I went on my way.
This year (2024) I thought I would look into hand controls more deeply as I found I wasn’t driving as far anymore.
Step 1 – I spoke with a couple of places that organised car modifications and after speaking with Abiliquip found they were the most helpful to talk to. I naively thought you just talked to them and could organise everything yourself, but they advised you have to go to Enable.
I phoned Enable, and they gave me 3 contacts Burwood Hospital, a place in the North Island and DriveMed. They said give one of them a call and have a chat, they will talk me through the process as I may be eligible for funding.
I contacted Shelley DriveMed, and she was great, I met with her, and she did an assessment, checking my foot movements, but mainly my hand/arm movements and said she felt hand controls would be good, so we went through the process. She explained the different funding options, Lotto, MSD and Enable as there was the possibility I would be eligible for funding of up to $15,000.
I have a Travelscoot which weighs 15kg with the battery and was lifting that in an out of the boot of my car, so she suggested we look at a crane to help with this and add it to the funding proposal.
She had a hand-controlled car so after our meeting we went for a drive. I drove around a huge carpark, concentrating on turning left / right / parking, going round a small roundabout / driving into carparks. I wasn’t going very fast, and it was a long couple of hours. I will be honest; we stopped for a minute, and I did have an emotional moment.
I thought am I going to be able to do this on a main road, motorway, in town. We had a chat, and she said I was doing really well, told myself I have got this, breathed in, and went on my way and learnt to use the indicators as well. It was a push pull hand control (there are different options to consider) so with my right hand, I would push for the brake and pull for the accelerator on the control there is a switch for the indicator which you operate with your finger. The left hand I had a ball thing (?) you used to help turn the steering wheel.
I left Shelley that day, exhausted, nervous but excited, she sent the application in to Enable for funding.
I felt I needed a new car as my one was 2007, took 95 Petrol and could have looked happier! I thought Hybrid was the way to go if possible as it needs to last me for the next 10 years or so and saving in Petrol would help. Once the modifications were done, you can’t just take them in and swap them over.
Shelly phoned me about a couple of weeks later and advised I had the funding for her fee, which was great. We still had to wait for the funding to be approved for the rest of it. Shelley phoned and advised the application had been accepted which was fantastic news.
She organised with Abiliquip for a quote for the hand controls and the crane for my scooter and most of it was covered by the funding, I needed to pay the shortfall. I am with Rotary, and our President helped get some funding for me which helped me enormously as I need to also buy a new car and pay for the driving lessons.
Step 2 – the hunt for a new car! I have been given a Honda Jazz courtesy car when I had taken mine in for a service and really liked it so spoke with Alec from Honda, I found the car I wanted.
Shelly was kind enough to take me around some car yards to have a look and thought I would be best to go for a larger/taller (for ease getting in) vehicle ie SUV as will need automatic headlights, window wipers and cruise control as with hand controls I wouldn’t be able to use my hands for certain tasks.
I had to convince Shelley to let me show her why the Jazz was right for me, I needed one lower to the ground as it is easier to get my left leg in if I needed to lift it up. When she saw me in it at the car yard, she said she understood why it was a better fit for me. It had all the requirements except the automatic window wipers.
Abiliquip advised yes crane would work in the Jazz, so car bought, and I traded in my old car. Alec took the new car to Abiliquip to get fitted and I was allowed to keep driving my old one until it was fitted, when Alec would go and pick it up and swap over.
I received a letter in the mail from Waka Kotahi to say my current licence is now cancelled and gave me one saying hand controls required so discard old licence. I panicked as I had planned everything so there was no interruption. I tried to contact Shelley, but she was unavailable, so I was unable to drive until I got my car back which ended up being just over 5 weeks as I also need driving lessons. Shelley did apologise as she always sends form off at the beginning and the process is normally 2-3 months before new licence is issued. She will now not send until sign off, when car given to me.
I was put onto Derek at Car Dads Driving School who was great. He was great, made me feel very comfortable, always building my confidence. I had 6 lessons, we went around town and on the motorway and he said after the 5th one I was good to go but I was, “I don’t think so, just one more!”
The saying is practice is the best thing, so I jumped in the next day and drove around. Depending on which way I come home, I need to do a U-turn to get to my place and I couldn’t bring myself to, not sure why so kept going the long way home. Finally did it and wondered why I had a problem.
After driving for a while, there were some adjustments I felt I needed, move the ball on wheel as arm was getting tired and the indicators were going for too long. Abiliquip were happy to listen and fixed for me.
It was the best decision I made, and this probably sounds corny but everyday I get in the car I think I am so pleased I did it.
If you decide to have a look into hand controls, every one’s needs are different so don’t be shy in asking questions and talking about what you would like. If it can’t be done, there is always a compromise.
Thank you, Ingrid, for sharing your story.