The possibility of losing their driving licence would alarm anyone owning and driving a car. For someone with Parkinson’s it is much more serious. For people trapped in their bodies through difficulties with mobility the car represents freedom and independence, especially in rural areas. Fortunately few of the people interviewed had had to give up driving.
I drive an exceptionally flash car, a soft top with a very powerful engine, a little baby. So when I get in that car I’m not on my feet anymore. I can move like the rest of you. I can overtake you, I can cut you up, I can be mega-aggressive, because that’s how I move best in this life. And it’s a sheer relief, in the car and just feel you can go like the rest of the world. But I’m on a three-year licence and they take advice every three years from my consultant. So you are in a double bind there. Would you tell your consultant you were unsure about your ability to drive? Or would you not? It’s a difficult one.
So I, I’m honest as I, I can be under the circumstances. But the idea of not being able to drive again is what I’m going to have to face in the future, and not one I’m looking at now. What I think I will do is I will organise life so more of it comes to me and, not quite sure how but, for example, I’m not going to buy a little cottage in the country. I’ll probably buy a flat in town.
The law requires a person diagnosed with Parkinson’s disease to inform the DVLA or DVA (in Northern Ireland). When Rafa did this, the DVLA wrote to him asking for him to return his licence. But this was later returned to him with instructions to renew it in three years. Most people had similar experiences and said that all they needed to do was to ask their GP or their neurologist to help them complete a 'medical fitness to drive' form stating whether they considered them fit to drive. People may also need to have a medical or driving assessment to confirm their ability to drive safely, but for some people the DVLA may withdraw their licence altogether.
Married, 2 adult children, retired special needs teacher.
I didn't really go anywhere without having somebody with me and fortunately I've got a fantastic family and friends and so I hadn't really been that conscious of it myself. My roommate from college who's Polish English, we went on a holiday to Poland three years ago and she said you know, I, it was after that that it really hit home to me that I had to be helped up and down even down small changes, that I really was reliant on other people. And one of the horrifying things was that when I got a social worker from the PDS, who was wonderful, we notified the DVLA and everything that I filled in with her I was okay for so I got my disability allowances. But a small form to the DVLA, they took my licence away. Well look where I live, eight miles from the nearest town, a mile and a half from the village, I was absolutely stuck. But we revised it and sent it back and I've now got a temporary three year licence which was what I'd expected to get. I'd still don't know what I filled in wrong [laughs] but whatever it was we undid it and got it, it was done within a month, full marks to DVLA they were very, very helpful.
Some people wondered themselves whether it was still safe for them to drive and had asked to be tested. Fiona’s husband was gearing himself up towards being told he could no longer drive. Alan had reluctantly given up and agreed to allow his wife to do all the driving. Fred had agreed to go for a test which he expected to take four hours.
The main problem I’m having is that any classes I’ve got to go have got to be on a bus route or get a lift, because I’m going to have to stop driving very soon. I was sent by my GP to, the DVLA asked me for a, a test last year. And I think it was a combination of the Parkinson’s and my eyesight. I had a two hour twenty minute test with the DVLA asking me questions, giving me a physical, slightly physical examination, a mental examination, then driving an unknown car round a track and then driving with two passengers all round the city and down the motorway. Two hours twenty minutes. And I passed and felt, that gave me such a boost to my morale. I hardly ever drive down motorways, but I had to do that in the test and felt oozing with confidence. But I’m not driving much now.
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With the narcolepsy. I raised the issue with the hospital. The question is what about the question of driving when you suffer from narcolepsy? And the advice of the medical profession is that you’re the best judge. We don’t presume to be the judge in the in the matter. The individual is the best person to judge and I started out on the road in 1949 on a motorcycle and ended up with a three wheel and I had a van. I’ve been driving all the years and I’ve never had never had an accident, got a completely clean record. But well, my brother raised the issue with me one day when he and he said, “Eddie, your driving is deteriorating.” He said and he was quite right. And it was when it was when my right leg was beginning to get affected and so that was it, finished. All done.
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Married, adult children
Network IT consultant (now home-based).
I’m based at home, I can, as long as I’ve got an internet connection which I have broadband, and my laptop and a mobile, I do now ninety percent of the job from home. And one of the other reasons for that is that , that I think I’ve got a problem driving, which I’ve, I’m told the doctor and neurologist but they don’t consider it to be a serious problem at the moment, where I tend to lose my, it seems like I’m losing my balance, at night on a narrow country road. On motorways, roads that are lit up, no problem at all. But I tend to, for some reason I feel like I’m losing control between the, the white lines and the traffic coming the other way. Especially with bright lights, to the degree where I feel like I’m going to hit the kerb or hit them. So that I’ve given up driving at night, down dark roads, especially narrow roads, and that affects my job because in the Winter I could be in somewhere like Newcastle and I’ve got to drive home in the dark and, so they, they tend not to send me out to customer’s sites any more. So it has impinged on my job. But they’re very supportive and , you know, they’re, they’re sort of sticking in there with me.
The main problem affecting driving for people with Parkinson’s disease is tremor in the arms or legs or both. Several people had obtained advice from the government motability scheme and in some cases financial help with adapting their existing car or buying a new one. Usually the only adaptation needed was conversion from manual to automatic.
Married, 2 children, still working as a nutrionist.
I’ve been a driver since I was twenty-one and got my licence and we have an ordinary car and I had difficulty using my right foot because of the shaking. So I learned to, it was an automatic gear car and I learned to use the left foot. But now, when I was dyskinetic which I was sometimes, I did find I had to concentrate very much to keep on track and maybe my driving was a bit unsteady. So once I was haunted by a lady who insisted that I must be drunk and there she even managed to get the police to believe that. Actually I wasn’t drunk of course, but I had forgotten to tell the police that I had Parkinson’s. So he discovered that and felt so elated about his finding that he took my drivers licence. So that was a, a bit of a setback but I got it back but with the message to get a new one, a new licence or a permit every second year, which was okay. I mean you need to keep an eye on these people.
But after the operation of course my right leg didn’t bother me any more, so I could shift back to the right leg and I’m not dyskinetic so I’m back to my normal driving. And well, still I have to go every second year and that’s okay but that’s a total normalisation of a function, I must say. And it’s very good for, because we have a veteran car which is not automatic and I’m the only person who can, can manage to gear down so my skills are needed.
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Married, 3 children, Retired director of BBC monitoring.
Well, the disabled badge is about the best thing you can have, because it enables you to park practically anywhere...
Within my own borough it’s particularly helpful because you can use it for three hours in any bay, whether it’s ordinary parking bays or residents’. And because I’m a student I got permission to extend it into the so-called green zone, which in my borough goes right down to central London. And then there are the other disabled parking spaces, which enables you to park outside the National Gallery. All major galleries, both Tates, have special parking allocated for the disabled. And in Tate Modern you have wheelchair buggies, electric buggies, and in the National Gallery you have wheelchairs. So they’re very user-, friendly towards the disabled badge holder. Terrific advantage. Wouldn’t do without it.
Some people admitted that their tendency to suddenly fall asleep made them nervous about driving, especially long distances. Fred had once nearly fallen asleep on the way to Wales but had dealt with this by drawing over to the side of the road and resting. Obviously where such bouts of sleeping were sudden and unexpected driving was not advised. Several people were now driving only short distances or had reluctantly handed over most of the driving to someone else. Some people now travelled by public transport and although they were slower getting on and off buses or trains, they could get around quite easily.
Married, Adult children, retired training advisor.
Well you can buy a railcard, disabled person’s railcard and you get, I think it’s half price each. My friend takes me down to London. We’ve been to the Parkinson’s Carol Service two, two Christmases now and various other events that they’ve had on in London. And it’s wonderful to go by train. If you go in your wheelchair and make the rail company aware that you’re going and what times you’re going they are absolutely brilliant. The first time I tried it was two years ago when we went to the Carol Service. And we got on at Northampton and we were going to Euston and the guard was there to meet us. They knew which carriage we were going in and we were, planned to be back for about twenty past ten at night and, no half past ten. And we got to the station at twenty past ten and this gentleman jumped out from behind a post and he said, “You must be my two ladies for Northampton. I’ll take you up.” And he took us up, made us a cup of coffee, and he said, “I’ll come and fetch you when the train comes into the platform and put you in the carriage.” And, British Rail are criticised but they are good if you, if you tell them. If you don’t tell them you can’t expect the help. But they were very good.
And the pictures, cinemas you can go to, you can get a card from the cinema and they will give you a reduction and theatre will give you a reduction for, I think your carer goes free. Because on a hospital stay last year my son had bought me tickets to go and see Pam Ayres for my birthday and I was in hospital, coming to the 10th day, so I was recovering and I jokingly asked the doctor if they gave pass outs at the hospital because I wanted to go there and he said, “I’ll go and ask the physios, see what they say about it.” And he came back and he said, “Yes, you can go at seven and you’ve got to be back by quarter past ten.” So they provided a wheelchair, my daughter-in-law got a taxi that carried a wheelchair and we went to the cinema. But my son had had to change the tickets and he got a refund for one of the tickets. So we could go to the cinema again, to the theatre again. But how amazing, a hospital giving you a pass out to go to the theatre? That was, that was really good.
Holidays and travel were something that people with Parkinson’s often had to organise differently. Airports became extra stressful, though several people mentioned the advantage of making it clear at the time of booking that someone had mobility problems. This could often make things much easier.
Married, 2 children aged 18 & 20, still working as a clerk.
Holidays to me are a great release. I’ve always been determined to enjoy holidays right from the time I was first diagnosed, in fact when I was first diagnosed the first thing I did was went along to the travel agents and booked a holiday to Disneyworld because I was determined to go. And I think you, you know, everybody can go on holiday. You might have to think about things in a more round about way.
When you go through the airports it’s always a good idea when you’re booking your tickets through the airports just to advise them that you have a disability. And we have found, from our experience that they’re very, very helpful. And, you know, they can help you get through the airport without too much hassle. And so it’s always worth being, like I said before, be honest and, you know, letting people know that you do have a disability. And something like Parkinson’s it’s strange because you can look at me at one time and I just look perfectly normal and I’m moving perfectly okay and people must think ‘well there’s nothing wrong with her’ and then an hour later and my medication has worn off and I can hardly put one foot in front of the other. And it’s very difficult to explain to people. You feel like you need a badge, you know, telling people what’s wrong and why you’re like that. But, you know, you do have moments when you cannot move properly and you need to let people know that that can happen, and they can help you, but I’m a great believer in holidays.
Married, 5 children.
I’m aware of it, they’ve given me a card that I bypass the Airport Security, the household stuff like microwave, radio, tv don’t affect this. The shop detectors don’t affect this, you know when I go to shopping I will pass through the security you know the shops, you know, that don’t affect it, the only thing affect is the airport security, and I’ve been given a pass and a letter and a drawing of the thing that I have done to me, I show them at the airport and they, they’ll fingertip search you, you know, and let you bypass the system. If you, I said, “Well what happen if I go through the system?” They said, “You will go quickly through the system, quickly, through the middle, if you go slowly, or if you are stopped then it could either turn it off or it could make it faster.” But it could affect it in other words, you know?
I’m travelling next month to the Damascus and Saudi Arabia my family and I’ll show them the letter and if they don’t, you know, I’ve got an actual letter from hospital, and a drawing, and a card.
And the battery to show them.
Yeah, yeah and, I hopefully they, well these days are very, very careful. The bomb or gun or something like that, you know, but, that’s it meant to be seen that’s my first experience when I go abroad I’ll see what they, I mean British Airports no problem they know, there is something called Parkinson’s Disease, there is something called operations, stimulators, things like that, you know? But foreign countries don’t know that do they? So, you know, they, they’re a little bit iffy.
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Married, 2 adult children, retired salesman.
We wouldn’t dream of going abroad on holiday now. One reason is that I hate hanging around in, we both hate hanging around in airports anyway. Two is what might happen to me when I’m abroad. Your premiums go up when you’re 70 anyway on holiday insurance. And I think with Parkinson’s disease I’d probably have a job to get insured anyway. So, but that’s not a problem. But we do have to think twice about if we’re going away anywhere. And we’ve done very little of that in the last three years.
My home town is Bournemouth. I lived there for a good part of my life. And we do like to go back there once a year. And we’ve found a nice hotel in Bournemouth that if necessary would be able to cater for me. They’ve got invalid rooms, although we’ve just made sure we’ve got the right kind of room at the moment. They’re very understanding. We’ve, we’ve found a nice comfortable hotel there. And so, yes, we’re, we’re looking forward to going again for, just for a week maybe.
Ann and her husband decided to go to New Zealand. They gave themselves plenty of time so that there were always opportunities to recover from exhausting aspects to the trip. They did their own driving which meant they could stop whenever they felt like it. As she said, if she was tired they ‘did nothing, just sat and looked at the view, did a short walk.' Fiona and her partner went on a cruise which worked well as there were things for each of them to do.
Getting around an airport can be awkward with mobility. But it’s no more difficult than going anywhere else. So I’ve not had any real difficulties with that. Given that the travel is over a protracted period of time and I take quite a relaxed attitude to that. That’s fine, in comparison to sort of business travel, when you’re in and out for a day and you’ve got things to do. It’s quite a relaxed approach, so I didn’t have any real difficulties with it.
What about stiffness after a long haul flight?
One of the best things I did, because of the resort we were staying at, was get a massage. So that was good. I did have a bit of an adverse reaction to it because I was quite stiff, but I got over that quite quickly. Swimming was useful. It’s interesting I don’t have any difficulties with gross movements like swimming. It’s the fine motor control and the small movements that I struggle with. So I appreciated that, so that was another form of exercise while I was out there.
Business travel, I feel is a bit more pressurised. In that it’s much more intensive for me. Our head office is in Toulouse. So it’s a flight there and back in a day and it’s a long day. And that’s quite intensive and that I struggle with, and you’ve got to do a days work while your there and all that sort of thing. So that can be a bit awkward.
Some people mentioned that they could no longer stay overnight with friends. All sorts of problems which they had succeeded in resolving at home became unbearable when away. The bed needed to be the right height, and probably not shared with anyone. They needed to get out of bed often at night and needed easy access to a lavatory. Some people had difficulty sleeping and needed to be somewhere where they didn’t disturb anyone else, and maybe also to be able to make a drink or find some food. People had got stuck in baths which weren’t adapted. Brian to whom this had happened now used a travelling grab rail which he could attached to any bathroom wall.
Last year we had got a wee towing caravan and, it worked out okay last year whenever we went away, I, I was fine. This year we were gonna go away a fortnight ago and we were going right till, up until the morning we were, we had planned to go and I just felt really terrible that morning. And I knew there would be no point in me going away because I knew I would have to come home again because I just felt bad, really bad, really down, very painful, very stressed. And I just thought, ‘no it’s not, it’s not worth it.’ I just, I didn’t want to go anywhere, so my husband and I ended up really kind of falling out because he had taken time off his work for us to go away and he had, you know, got everything ready and just at the last minute I just said, “Look I really can’t go.” And he was saying, “Oh, just come you’ll be fine.” But I, I know myself that I wouldn’t be if I went. I know there’s no point in going when I feel like that, because I would just have to come back.
For advice on all aspects of driving the government has a very helpful website GOV.UK - see the disabled people section 'Disability, equipment and transport' which has information about public and community transport, adapting vehicles and options for buying or hiring cars, vehicle tax for disabled drivers and transport rights and details of the Blue Badge scheme. Also information about train and bus travel, bus passes and shopmobility.