PSP Association

Car journeys

Hi, Dad is becoming much less active now and tends to spend most days sitting in his chair. He also needs assistance getting in/out of bed and dressing etc. He can't walk un-aided. We have a family trip planned to Dorset in a few weeks, we've managed to book Dad into a nursing home that does 'holidays' so that we can stay near by and all enjoy the time together. However Mum is getting increasingly concerned that he may not be fit enough for the journey. Just a short trip is quite painful for both. Dad is like a naughty child and can't help but mess around with the controls. This is very distracting for Mum. I've suggested sitting Dad in the back, but we're worried he'll undo his seatbelt and try and get out. He complains he's not comfortable if he's in the car too long. We're trying to sort it that one of the family sits with him in the car, but we're all going at different times/days so its proving quite difficult. The journey is 3 1/2 hours. Any suggestions?? It would be such a shame for them both to miss out on a few days by the sea, but I feel that Mum will cancel if she can't find a solution. :-(

14 Replies

How about trying to hire a wheelchair car. So he can be pushed into the back in his wheelchair and be strapped in. That way he will have more room and be sitting in a better position. Janexx


Thanks Jane, I suppose that might be an option, I'll put it to mum and see what she thinks, although I suspect she'd prefer to be driving her own car. Thanks for the thought. x


I can understand your mum being concerned. My husband became a nightmare sitting in the passenger seat. He fiddled with the controls and when he went to sleep he flopped over on top of the hand break. He also removed his seat belt. We also had a 3 1/2 hour journey from Kent to Dorset. I stopped at Arundal and had a break, took him for a walk in the wheelchair and to the disabled toilets and had a picnic lunch, soup with soaked bread from a flask for C. After the break he slept so the second part of the journey was better. I think Janes suggestion was a good idea. We went to Dorset on several occasions and the last time was in a wheelchair adapted vehicle. No trying to get him out of the car when he had stiffened up and I could drive without him fiddling. I still stopped and he always slept during the second part of the journey. I also took my dad on four occasions and to help me, on the last two trips, my brother drove to us from Nuneaton, stayed the night with us and then took dad in his car, helping me load up mine first. It is exhausting getting ready to travel, trying to keep your eye on someone with PSP, thinking of everything you will need and loading the car and then driving 3 1/2 hours with a fidgety passenger. I can understand your mum wanting to drive a car she is used to but having experienced several similar trips, I think it will be far better if someone else can go with your parents, even if it means getting to them the day before. I hope she doesn't cancel but she is probably feeling overwhelmed, I did and have given up trying to get away again.

Best wishes for a successful and happy holiday.



Thanks so much for your reply, its so reassuring to know we are not alone. I'm sorry that you have given up now, but well done for doing it when you could! I will have a chat to mum and my sister who is also coming with us, I'm sure we'll come up with something. Thank you for your best wishes x


Safety comes first, Fiddle, even if it's a lot more hassle. We've been using the wheelchair taxis, just for short trips now (1hr max), and mostly because my dad finds it hard to get in and out of the car. It's all adapting to changing circumstances but in the end, you want to enjoy your holiday together, and that's what counts! Here's wishing you some lovely weather to boot!

Lieve xx

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Yeah I definitely think someone to help on the journey would be good! My mum luckily only fiddles with the stereo (which doesn't work!) and although she leans over the handbrake and gear stick someimes she will move if I ask her to. But on a journey that length id probably need to stop at least twice for bathroom breaks and to stop mums legs going totally stiff so she can have a short stretch of her legs. I also take a flask of pre thickened drink, special cup and own cutlery to make things easier! But the packing can be exhausting itself! But sounds like your mum, and dad!, could really use the break and family time. Hope you have a lovely holiday :)


Hi we are at a similar stage luckily Margaret does not play with switches controls brake etc probably due to very fixed vision. My problem is that Margaret starts coughing and choking alarmingly when sitting in a position for a long time. When the choke starts usually as I am doing 70+ on the motorway, if she is in the passenger seat I can do a quick check to either pull over or continue depending on her reaction. If she is in a wheelchair behind me in a wheelchair adapted vehicle (WAV), I can only pull over which is not always easy. Hence why I have not yet bought or gone to motorbility for a WAV but the new NHS wheelchair is so big and cannot be broken down easily changing the car maybe the next option. Thanks for the suggestion about the adapted taxi for short distances I will try that.

Margaret can only now stand 3/4 hr in car at a time, luckily that matches the service station distances but it does take journey planning. She does fall to sleep usually after 15 min but can lose vertical control, so I now have jury rigged a belt of material to provide a cross belt to keep her from falling towards me when in the passenger seat.

Best wishes and enjoy Dorset Tim

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Thanks all, its really useful advice from everyone ;-)


Hi, it would be a real shame if your Mum had to cancel. I think with all long journeys, you have to adapt a very pro active attitude, like you would for young children. Plenty of toilet breaks, lunch etc. a bit of exercise at these breaks, what ever your Dad can do, even moving his feet and circling his arms. Anything! Something to do in the car, book, iPad, even something to hold and fiddle with. How about some good old fashioned sing a long CD's, so they can both sing, very good exercise for your Dads vocal chords!

Of course your Mum, could always try putting him in the back seat. I know this is hard, but at least, the car should have kiddie locks on the doors, so he can't open them! Do seat belts come with kiddie locks as well? Ask at your local Halfords!

The best bet though, is to try and work it that one of the family goes with your Mum. Even if it means altering the plans slightly.

Hope it all works out well for you all.

Lots of love



Best of luck with the journey, sounds as if would be best to have an extra person in with you so that you can concentrate on the driving and get there safely. Enjoy your holiday and fingers crossed that the weather is as good as today, perfect temperature and wall to wall sunshine. That has got to lift anyone's spirit. Xxx


Thanks, all good advice :-)


hi fiddle sorry for your great great loss ive had so much go wrong with me I could not reply to you I just did not know what to say mate I do not know if you are still watching the programme on here or not I just wanted to say how sorry I was to hear about your father but at the same time I did not want to open old wounds mate it has been 6 monhs or more now so I hope you and your mum will have settled down a little bit with the knowledge that your dad has no more suffering and is free of the psp mate. so please except my condolences and I am truly sorry peter jones Australia psp sufferer q.l.d........................ ttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttttt55


Hi Peter,

So lovely to hear from you, I was worrying that you were unwell. I hope you are doing ok, all things considered. Thank you for your kind words about Dad, yes 6 months have flown by, its still very surreal, however we are all coping well. Mum is amazing, although she has lots of low days, its especially difficult this week as it would be Dads 74th Birthday this Sunday.

Sending you the best of wishes and hope that this terrible disease isn't causing you too much pain and discomfort.

Kind regards,



hi fiddle thanks for your concern and thank you for your prompt reply mate

I am really glad that and your mum are doing ok or as well as can be expected matey

I'm sure that your dad is looking down on you and saying good on them they are managing ok now ]]]]]]]] try not to be to sad life is for the living mate take care the two of you

peter jones q.l.d. Australia psp bloke


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