My Mother was diagnosed with PSP earlier this year after a scan. She is in the early stages of the condition and her symptoms are mild, although she has fallen on more than one occasion and we are aware her recall has been effected. We believe the symptoms have been around for a year prior
After diagnosis we have been seeking to engage with as much care as possible and the support so far has been incredible (Would like to take a brief moment to compliment the team behind this site and the PSP association as a whole, not just for their knowledge, but their generosity of time and advice)
One of the areas we have discussed is ensuring Mum stays as independent for as long as she is able to living semi rurally in Sussex.
She is a keen driver though, but her current vehicle is an unsuitable (for getting into etc) salon and we are looking to get a small SUV (higher seating position / access / better power steering ) after having her eyes retested and her competence verified by QEF.
Buying a vehicle under normal circumstance is a bit daunting, but trying to future proof it for Mum is a new degree of challenge, so we thought we would put it out to a more experience crowd in the hope you may share your knowledge and experience.
Is there any features / styles / makes and or models that people would advise to look out for?
There is a huge range of features that are available now, but as a driver myself, many are of little value - but is there something that someone with PSP has found uniquely beneficial? or perhaps something we would not have thought of?
While Mum is looking for something in Blue with a Sun roof, I feel we should be future proofing the purchase as much as possible. We could go as far £20,000.00 - but honestly would like to stay under that (well under if possible!) but we do want her to be safe as the priority
We would be grateful for any thoughts on the subject - even if not car specific, but thoughts on driving and independence too would be welcomed
Thank you all in advance
Kindest regards
Benjamin
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bgduggan
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Like your Mum I was a keen driver. I started with a scan which showed signs of psp,in December 2021,but I was able to live relatively normally . After just over a year I broke my neck and then my symptoms suddenly got much worse. I got my formal diagnosis this April . And have stopped driving.
It will take a lot of readjusting for you all- sadly your Mum must not drive anymore. It isn’t safe or fair on other people.
I would have very real concerns over your mother continuing to drive, the restrictive eye movements which come with PSP are problematic for safety of both driver/ passenger and other road users.
When my husband had taken 3 wing mirrors off in as many months having previously never had an accident I was terrified for cyclists and pedestrians . We sold his car, bought a mobility scooter and set up a taxi account- which initially he was in charge of and would book taxis whenever he fancied a trip out and I wasn’t around to drive him - this was still way cheaper than running a car and ensured his independence.
Long term future planning may include family members having a car with a boot large enough to have a wheelchair and or walker or even a wheelchair accessible vehicle (WAV)
DVLA need to be notified of your mother’s diagnosis and they would undertake an assessment, which she may pass but weeks later her safety to drive could have changed. It is really hard giving up driving but it is the responsible thing to do. Try to seek out appropriate alternatives to driving to enable independence
I don't think you can future proof a vehicle for PSP unless its a driverless vehicle really, and even then its a risk. If she is already at the stage she has difficulty getting in the vehicle, then thats a sign her driving days are ending. I would get her a vehicle that is easier that she can get into and thats it. Best she enjoys her driving days while she can is the approach I would take. Please do note that symptoms can can occur suddenly. My father was at home and slow but 100% independent........a rail in the bathroom and thats it. One day he fell and that was it. He went from independent to mostly wheelchair and only able to walk a few steps by shuffling. Dont assume its going to be a long slow decline. Good luck.
I would not underestimate the vision factor. My husband drove far too long before he confessed he had been experiencing double vision. A thorough eye test would be prudent. The instinct to maintain independence is universally human. But not at the risk of everyone’s safety. I’m sorry you are dealing with this.
Sorry to be direct but your Mum shouldn’t be driving. She will get worse over time and could end up hurting someone including herself.
I’ve told the DVLA and they have taken mums licence away. My Mum up driving before she got diagnosed she lost her confidence and had a few mishaps which in hind sight may have been early signs.
The difficult reality is, in the space of a few months my Mum went from semi independent to fully dependent, after breaking her ankle on a simple fall getting up from the sofa and although can still just about walk with a rollator short distances - she has no ability to do much else.
If she is semi rural it might be worth considering how this will work in the future especially when her falls increase, I am only 12 minutes in the car seat from my mum and she lives in extra care housing but this week I’ve been three times including one night waiting for an ambulance. I don’t want to scare you but this illness is unknown as to how quickly it progresses - they think Mums in about year 5.
I’m gobsmacked at how quickly things can change hour to hour rather than day to day.
Please get everything in place such as power of attorney health & wealth. Understand your Mums wishes for treatment e.g tube feeding. I’m finding now it’s a little easier to have conversations with medical professionals as I know what she wants.
Sorry, I’m learning my experience and be prepared for a tough run. She’s my Mum and I will do this to the end but it’s very hard.
Please, please do not let your Mother drive. You will have to advise the DVLA of her diagnosis and they will revoke her licence. Fortunately my husband realised he wasn't safe and didn't have to be told.
With regard of choice of YOUR car, if you regularly take her out go for something a little higher so it's easier to get in and out and with plenty if space in the boot for a wheelchair. But there will come a time when even getting in and out of a car becomes impossible.
The progression varies from person to person and our journey was only 4.5 years from diagnosis. So please do get everything mentioned above in place, as soon as you can. Tough conversations, I know, but necessary.
It's going to be a tough journey for you all, but keep on keeping on.
sorry to add to the bad news but my mum at a similar stage (but starting with CBD and fewer of the vision issues) managed to acquire several bumps in the car hitting the kerb while driving and denting it when parking. As soon as she moved near us she stopped driving and we used her car to drive her round until she could no longer get into it. A second hand wheelchair accessible vehicle that you or others can drive her in is my best suggestion.
Firstly sorry to hear about the diagnosis and everyone’s journey will be different. I don’t think Mum drove at all after diagnosis as she was no longer confident and we revoked her license. We did look into higher seated cars and mobility cars so we could take mum out as she lived in a hamlet but before we had decided it was too late and she was wheelchair abound needing two people and standing aid to move her - this was within four months of diagnosis. It’s so hard as everyone is different in how PSP progresses but as you say PSPA are fantastic.
Sorry to hear about your mum’s diagnosis, there is such a lot to take in.
My mum stopped driving before her diagnosis as she had lost confidence. I remember being shocked when she announced she was selling her car but it was the right thing to do. Her eye issues hadn’t yet been picked up on but the limited eye movement must have affected her peripheral vision.
Although there were symptoms for a while- fatigue, confusion, balance issues- mum quickly changed from being a very independent person to someone who needed help in many aspects of her life.
It’s a very difficult balance trying to plan ahead but also live and enjoy the present. I would get everything in place for when you need it, power of attorney, advance care plan, referrals as they can take a while to come through, minor adaptions hand rails etc and think about future care options. At the same time enjoy your mum’s mobility and energy and have some good days too.
Sorry to hear you have received this diagnosis. My husband had just bought a new car with lots of extras, we then noticed things weren’t quite right. The car had the ability to give a warning sound if you were too near things and actually brake if in a dangerous situation. In only a few months these devices were put into action frequently! He was unable to turn his neck, so at junctions and especially at roundabouts these systems were put into good use. Added to this, his actions were slowing and the eyes were a problem too. He had to admit he wasn’t safe driving and sold the car, we hadn’t been given the diagnosis at this point.
Getting into cars became a problem and we had a couple of gadgets, one a handle ( called a car cane Amazon (£14) that hooked into the lock loop on the car-wasn’t so useful and a handle ( car standing support Handle Amazon £5.95) that he could grab onto to help him swing into the seat. This was on the door.
We then had to hire a WAV and are thinking of buying one.
The rates that this progresses is different for everyone but for us it’s only been a few years.
Please think carefully. My husband loved driving and it was difficult for him to sell his new ‘all singing and dancing car’ that he had treated himself with but it wasn’t safe for him or other road users.
Hi, in the early days of the disease and before diagnosis my mum had spacial aware problems and struggled with basic manoeuvres in traffic and road systems after being a very confident driver over the years. Her confidence dropped significantly and was sensible enough to stop driving after a few knocks and prangs. It’s tough to give up driving as it’s giving up a significant level of independence but it’s the safest thing to do. Mum made this decision herself before having the diagnosis. In hindsight, my dad would have invested in a decent wheelchair vehicle, this would have made many trips out far easier and pleasurable when trips out could be maximised. Dad bought a 2nd hand one within the last year which has cost money to keep roadworthy but it has been fundamental to giving mum some basic trips out (local park, see the sea etc) to provide a quality of life (we have to use hoist to wheelchair). If we had it earlier the benefit would have been far greater as moving mum in and out of the car in the early/mid stages of the disease would have not been a problem and less stressful for all. Hope this helps a little for forward planning.
We are in the US, so a little doubtful this available in UK. As my mother is almost immobile and can no longer ambulate, I purchased a new/used car a few years ago to better serve our needs. I love it! 2018 Ford Edge Titanium. The Titanium level has very bolstered seats that hold her in place. The upholstery is very slick so that I can slide her in place. The seat is near enough to the door that it is relatively easy to get her behind in place. We test sat every single comparable SUV and this was by far the easiest for her.
It has lots of space in the back for her wheel chair and feed for her old horses. It's fun to drive.
Thankfully my mother decided to stop driving many years ago. I suspect there was a wreck that she still has kept a secret. I encouraged her to let me drive her as much as possible due to the side effects of CL meds. It seemed to go over better blaming the meds rather than her pointing out her potentially diminishing abilities.
Hello and best wishes in ur predicament! I was diagnosed PSP 5 ys ago at 76. Mine seems a slow developer .... there are about 8 main variants all develop differently, and also age comes into it. Older you are at diagnosis, slower it seems todevelop!
Don't report to DVLA, they'll take her off the roAd. I had my doc refer me to ARDAC, who give a much gentler test for the disabled. Am now tested every year, and still going, tho maybe not for long! And not at night.
Eyesight? I was seen by a specialist orthoptist recently who said my eye movements are fine, and not what the diagnosing neurologists told me. "Neurologists are good at their job, but they know little about eyesight, or testing it!" (I also have double vision which complicates matters!)
I can offer much more info, but 4-A4 pages, so prefer if you send me your email address, please.
absolutely don’t buy a car , you have no idea how quickly or slowly this awful illness can progress and how it can suddenly accelerate when you don’t expect it . My late wife lost her sense of special awareness almost overnight so be prepared .
I quit driving a couple years ago when I started to experience stiffness in legs or arms at random times. I also had slowed reflexes. I made the decision while in traffic one day when I couldn’t move my foot to the brake. Very narrowly avoided a major problem.
I was not safe on the road. I worried about how easy it would be for me to seriously injure or even kill other drivers or pedestrians. All because in my pride I still wanted to be behind the wheel.
My daughter uses the same car to drive me places now. It has higher seats, between a sedan and an SUV, and that’s good for me getting in — on the passenger side.
No idea about cars, but I will say that when my guy was first diagnosed his doctor notified the state that he thought he shouldn’t drive. We appealed, he took a driving test, and he drove well for another 2 years. He even worked. Getting him to stop after that was a wrench, but his capacity declined fairly rapidly and there was no question.
same here but i wasnt allowed to drive imediately even though i was actually capable of drvig for months afterwards ... i havent had an acccident for some forty years and with them taking my drivng licience away made my world a whole lot smaller ... i am glad i am not driving at the moment! hell i would drive into a brick wall im sure of that( i was diagnosed as having psp a year ago)
We purchased an SUV last year specifically to load an electric wheelchair or scooter on to a ramp and tow it with us. Pretty naive of us to find that the vehicle we purchased did not have enough “tow weight” to accommodate that plus an electric lift. We have been able to make it work with a sort of mini crane which attaches to the bumper and pulls them inside the suv. Apparently as manufacturers are making lighter vehicles to be more energy efficient, the frame of the vehicle might be where they pull some weight. I know not exactly what you are asking, but a consideration for the future.
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Hi just looking for some advise my mum was diagnosed with psp
My mum has PSP
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