Does anyone suffering with MSA PSP or CBD ... - PSP Association
Does anyone suffering with MSA PSP or CBD still manage to drive? . I miss it so much but worry about all the medication I'm on.
I noticed how bad my husband's driving was long before he was diagnosed and on medication. Roundabouts were a nightmare as he couldn't see cars coming to the side of him, not being able to move his eyes as well as he used to. He couldn't understand my concern and kept telling me he had been driving for over 40 years and never had an accident. At the time of his diagnosis I asked the neurologist if he can continue driving and his response was that many people are first diagnosed after being involved in serious road accidents, caused by them. It is a huge thing to stop driving and losing your independence but better than killing yourself or someone else.
Nanna B
I so agree with you...I've just gotten lucky recently with a period of stabilization so I am driving a bit. And I mean a bit. But it sure makes me feel I have some competency and control over my life. I like it.
BTW...roundabouts are a fairly new concept here in the Upper Midwest in the States. They drive me nuts now; drove me nuts when I was well. A study was just published that those in the immediate area have caused an excessive amount of accident, with injuries, so they've pulled the plug on creating more for the time-being.
Just something about those things the majority of people her just don't get!
Judy
Hi Judy, I agree with you about roundabouts. I hate them, especially huge ones in areas I don't know. Before my husband was diagnosed, he did nearly all the driving, I only drove locally. When he stopped I was flung out of my comfort zone and now drive anywhere. I live in the South East of England, a beautiful part of the country but the roads are horrendous. When I have to go round roundabouts I haven't seen before, I have been known to drive round them 2 or 3 times before I find the correct exit, and that is with my sat Nav! My son lives 3 and a half hours away in Suffolk. I couldn't believe it the last time I drove there. It was 9 am in the morning (We had left home at 5 am to avoid the traffic at the Thames tunnel). I went round a roundabout and there wasn't a vehicle to be seen....great. If we didn't have two other son's in the South East we would move there.
Take care on those roads.
Best wishes
Nanna B
Nanna B:
Your response cracked me up
On more than one occasion, I've gone in circles a good 3 or 4 times w/o another vehicle in sight...all the while feeling panic rising; lol.
I have 1 daughter who drives; the other doesn't. When my driving daughter has been my passenger in one of the crazy round-about experiences, she ends up shouting at my how to 'do it right!
Uh...not helpful!
You take care on those roads as well!
Judy
Might open Pandora's Box a bit, particularly with a beloved member of this group, who had a strong opinion some time ago about me NOT driving.
I am mid-stage with PSP. However, I've arrived on a pretty stable plateau recently and the symptoms that were definite red flags that I shouldn't be driving are either gone or very occasional. There was no doubt I shouldn't have been driving over those 18 months or so; it wasn't safe.
I went thru a pretty rigorous course of physical therapy over the winter/spring which helped me immensely. I received their blessing as well as my Neuro to drive again; short distances, not at night, not everyday, and certainly not if I'm symptomatic. I always err to the side of caution and take no chances.
I also talked with my auto insurance carrier and purchased an "umbrella policy" ( relatively inexpensive), which gives me much higher limits/broader coverage should in cause an accident arising out of my illness, God forbid.
I only drive a few times a weeks, very local, and if there is even a smidgen of doubt, I just don't, period. Won't risk my life, lives of other's, of my daughters.
It has helped my morale tremendously. Can relate to your missing it, becoming so dependent on others, etc. Lived it and will again. It's isolating and demoralizing especially over time.
But you said it yourself...you question whether you should because of all the meds you're on. You raised your own doubt and red flag, so, please don't drive for now. At all. Period.
Please talk seriously with your physician but be honest about your own concerns so you don't get a go ahead w/o all the information. I totally understand where your coming from. It really stinks to be immobile.
There are also facilities that have special driving evaluators that will give you a solid 4-6 hour evaluation both in and out of a car, to determine your ability to drive, or not.
Please don't drive for now and consider a few of these recommendations.
I am having some testing done over the next few weeks which if it's negative result, probably will require me starting a more powerful med that will make me really sleeping and once again will have to park my van long-term. Hopefully not; staying optimistic.
Wishing all the best of everything going forward,
Judy Johnson
Minnesota,
USA
Judy, In my opinion we are not good judges of our capabilities for the most part. We tend to over assess them and minimize them. It's just our human nature. There is also risk taking that comes into play with us humans. These can be very devastating things. If you have an independent person who will drive with you and give you an opinion on your driving I'd do it and then abide by their conclusion. Stay safe!! Jimbo
I respect you and your wisdom tremendously, you know that. We've gone a round or 2 about this sometime ago. I did heed your advice but most of all, my ego aside, I knew I was a risk on the road nor felt well enough to drive anyway. I didn't drive for a year. Or more.
I did talk extensively with my Doc and those who worked with me at the medical facility for movement disorders, and go the go-ahead.
It's been a long time, I know, but the reason I was told not to drive-period-is because I almost fainted behind the wheel. Fainting had been a chronic condition with me since age 3. After that, I had a sleep-study that showed I had severe sleep apnea. Of the autonomic nervous system source, not obstructive.
I've been using a high-tech C-PAP machine for over a year now and my fainting spells stopped almost immediately and haven't returned. A true blessing. That was a debilitating condition unto itself.
Via PT, I've regained full motion in my neck, including the ability to look over either should for blind spots. During PT, the ability to move my eyes up/down, back/forth came back spontaneously.
These reasons, in addition to others I haven't mentioned, is why my providers felt confident I could drive again WITH restrictions. No night driving and only within a few miles of my home.
I go out maybe 3 times a week. I truly do err to the side of caution. If I don't feel confident, I just don't try it, meaning if my balance isn't good that day, or am experiencing tremors, etc.
I do respect your input very much and I know it comes from both experience and good will; please know that.
I'm also not deluded. I know going forward I will not be driving for the rest of my life and do have the good sense to know when that it is, even if it's upsetting.
But, for right now, living in the present and experiencing my first real period of stability, I'm enjoying the ability to drive on a short-leash.
You've got a good heart and I appreciate your input.
Judy
Judy, There is a cognitive aspect to PSP so I'm wondering if the PSP patient MIGHT think they are ok to do certain things when in fact they are not. I've read posts of PSP patients who have had bad falls yet they still THINK they can walk and persist in trying without someone to help them. Clearly they may not be in a cognitive position to assess their own capabilities. Other caregivers know what I'm talking about I'm sure. No problem I'm not trying to tell you what to do but just give you something to think about. Jimbo
I understand what you're talking about; I understand that does come as the frontal lobe loses excessive numbers of cells.
I have lots of eyes on me, professional and personally. They won't be shy about bringing it to my attention. My most recent testing showed my frontal lobe is shrinking since first diagnosed.
What I know for sure is this is the first period of stability I've experienced, not to be confused with perfect by any means. I still have symptoms daily; at least for now they're not keeping me in bed almost 24/7.
So I'm going to enjoy this reprieve and live in the moment. I know it won't last very long.
And, be assured, I will not take unnecessary chances.
Judy
hi cheeky chops I was driving up to the last month wnen I went into hospital
with bladder infection and chest pneumonia there I saw an occupational therapist who said to me I see you are still driving and towing a van i said yes that's right she also said I think you had better stop now and go to a defensive driving place which i agreed to do when I got out of hospital ]\\ I went to the defensive driving place for my test i had to use their car the whole bit was 550 dollars it lasted a lifetime set down for 4 hrs I had a test on paper and computer the paper one I could not write anyway because i lost my writing a few years ago but you just had to draw things and tick others so i was ok\\ the driving instructor ask me if i had driven my car all the time or another car for 50 per cent of time I said I had only driven my pajero for the last 13 years oh well he said just go easy on the brake pedal they are very sharp so I jumped in == sort of=== and off we went well I wont go into the full story but I failed the driving part so now I have hand my licence in to main roads which is a bugger because where I live there are big hills to get out of the place and I cant walk up them so I am stuck indoors for now getting back to your medication I do not think they worry so much about it unless it makes you drowsy or effects your ability to drive mate but i think I was set up for some of the stuff but then I would would'nt i we got a cab just down the bottom of the road to the drs and itcost us 21 dollars return I thought if I had my licence I think i would become a cabbie at those prices I know you can apply for cabs through the govt which we have done but apparently it takes weeks to even hear from them but I miss driving myself it was so convenient out here mate where the stage coach goes past once a week or was it a month not sure now but anyway im off the road now they couldn't have done better if they had cut both legs off ah well thats the price you have to pay for getting old and psp to boot but better than knocking someone down \
\\ sorry it was so long winded telling you
about your medication but I wanted to get this off my chest perhaps thats what gave me pneumonia take care my friend peter jones queensland Australia definatley a psp sufferer
Dear Peter Jones, So glad to see you back on the site for a jaw-jaw. I do hope you are feeling better now. This business with the car is a bit of a 'nasty one' that's for sure.Funnily enough, my son in Oman has just bought a pajero. I had never heard of them but whilst I was out there we did a test drive in a brand new, latest model. It had all sorts of technical gadgets in it but one outstanding feature was the camera that helped in reversal and parking etc. My son could not afford a new one and has an earlier model without so much hi-tec but he has been able to have it installed into his car. I am just wondering, is there a chance there is something like this which could be added to adapt to yours to get them to allow you to drive it? Just a thought! X Anne
hi nader hows it going well thanks for your thoughts mate on the camera but i have had one on my pajero for a few years now
also I have one on the caravan connected to the car so I have a view of whats behind me but I do not think that this will get my licence back mate as I had to take the test in their car which I had never driven before because we have had pajeros for the last 17 years or so I got them because it suited my needs towing the caravan etc and they were a good vehicle
ours owes us nothing we have paid out nothing on repairs just usual service etc
we now feel isolated because the bus goes from the top of the hill which is to steep for me to climb and if we go to the other end of the road there s another hill there as well aint I just the lucky one well nader thanks fort your thoughts mate just going down tom the drs to see if i can get a restricted licence at least we will be able to get out of the house peter jones queensland Australia psp bloke take care
hi nader well mate I got a restricted licence from my doctor
he allowed me to drive within 5klms radius so I went down to main roads and changed my licence over to the restricted 5 klms and it is done in daylight hours which suited me anyway
because i never drove in the dark before anyway so it has turned out real good now 5 klm does not seem much but it can get us to the shopping centre and most places that we would want to go the only thing is I cannot tow our caravan
now but thats not the end of the world one door closes another door opens so I think we were pretty lucky to get that mate and we were over the moon to think we were not going to be isolated we were most grateful for small mercy's then today my son said he would tow the van down to the gold coast for us at Christmas and pick it up when we have had our 3 weeks away because it is more than my limit on my licence anyway mate I will know when its time pack up \\ I think if I had to walk up these hills around here I would have cut my life very short and I want to go on as ;long as I can that's if he will let me of course well nader I will go now
is one happy chappie take care mate see yer peter jones queensland Australia psp sufferer
Hi peter . Thanks for your reply . You are very kind to go into such detail about your feelings about driving . I have followed some of your posts and you refer to everything that is happening to you with such a great sense of humour . That to me shows such a great sense of character and strength . If I could be a bit more like yourself I'd be proud ! I liked the way you described the incident in the supermarket where you had to flea after worrying about the manager coming after you for knocking down a display. Have I got that right ?!. Chest pneumonia and bladder infection must have been horrible peter but reckon your sense of humour brought you through that . I wondered peter if you take any meds at all . They are still trying me on stalevo ( now 125mg four times daily). I take diazepam ,clonazepam and baclofen for muscle spasms and cramps also an antidepressant called citalopram . thanks again sir :)and every best wish to you
My Dear Mr. Jones....I am so sorry to hear you had to go thru ALL of that. Cripes and how frustrating to the nth degree!!!!!
Are you at least feeling better, pneumonia-wise?
And geez, don't apologize for long explanations. This is complicated stuff we are all dealing with and this is the place for long explanations.
Besides, I love reading your posts...
Best regards always,
Judy
When my husband was diagnosed we were told that here in the UK it is law to inform the DVLA if you have any neurological conditon, also our neurologist said he should not drive and I have to say that I agree. He was previously a very good driver, army trained, but I noticed a deterioration in his driving long before his diagnosis, slight at first but definately progressive and in the end I was scared to get into the car with him and was relieved when he was told not to drive. Sorry not to be more positive but my Pat did not think there was anything wrong with his driving even at the end.
Regards
Lynda P
hi all
i gave up drivign b4 my dxd as i had a horrible car crash - the car was a write off but i was ok and v lucky at that!
so please cheeky chops do not drive if you are at all in doubt!
i say this because when you look at the costs of keeping a car the taxi fares are relatively low or the bus which i can no longer use or the train
but i hav e a mobility car which my partner drives for me and it si good that he will drive me places
lol JIll
Thanks jillannf6 for your advice .So frustrating though not being able to do the things you always used to without even thinking . Know I would be devastated if I hurt anyone else . Also my mum is still driving after having half a lung removed through cancer . she is so brave . thankfully you got through that crash unscathed . I do have someone to drive me to appointments etc and to pick up meds! I have just had a personal independence payment assessment and am hoping to be awarded it but don't know if I will as can still walk be it with a lot of stiffness and spasming and having to keep stopping . thanks again . all the best to you
Hello from little UK. My husband was diagnosed with PSP and to legally keep driving he had to have a sight test at an optician and the opinion of a doctor,I was devastated when the result came and he could still drive.We live near a school in a village it is a single track lane to get out of the village Roundabouts were really scary I ended up refusing to be his passenger which seems unfriendly but I was so nervous it made his driving worse..None of the family would drive with him a ten minute opticians test and a doctor who was never a passenger of his is hardly a good test here in UK.He has now given up and surrendered his license his pleasure now comes in criticizing my driving.but we get there.Think of how you would feel if a slow reaction ended in an accident not your fault but PSP contributed.Have you driven someone who would give an honest opinion?Please be careful and do not take risks .Regards Loppylugs
Thank you everyone for your advice on driving .Think I may have to give it a miss after reading some of your stories . I have been diagnosed with probable cbd but told that its definitely a Parkinson's plus syndrome after a face to face consultation with my neurologist and if I caused an accident I would never forgive myself . To Peter Jones - I have read lots of your posts and love your sense of humour and bravery _ you're a one in a million. To Judy - you sound very brave after what you've been through in your life and thanks so much for your reply In fact thanks to everyone.
Thanks. Living with PSP, I know how important it is to know there is a least a few people who can relate to what you're experiencing. On my end, that's been one of the biggest/saddest struggles. People in general don't want to hear about it, much less the details. But, I believe it's reflection on them, not us. People tend to have small comfort zones. Or perhaps it really is impossible to understand this unless you live it.
When I stopped driving for over a year, it was not only hard to accept, it made me feel lonelier than I did and even more dependent on people who often weren't available. I completely understand.
I'm just very fortunate in this window of time I can drive again with restrictions. May only last this summer; may only last another week. I do know it won't be for extended period of time, and I'll be hanging up my keys and going through what you're experiencing again.
Fondly,
Judy
MN
USA
Hi, like the rest of you. I was scared stiff when S was still driving. He gave up about 6months before he was diagnosed. I thought he had had another stroke, so said no more until the doctor as seen him! The neuro asked if S was driving, when we said no, his reply was, good! So I guess that meant no more!!! His licence has been taken now, coming up for his 70th birthday, in UK you have to re-apply, so we didn't bother! Very sad, but it's stopped my hair going completely grey!!!!
Lots of love
Heady
My husband also doesn't drive anymore, much to his dismay! Most of the time he's very agreeable to our decision. He feels like the cars are going much too fast and are crossing the center line towards him. (He's not on any meds that would cause this) But there are days where he just really wants to drive. We live in a very small town, and on our anniversary while I was at work, he drove into town and bought me flowers. Glad I didn't know he did that till I got home! He did admit later, that it wasn't as easy as he thought it would be and went VERY slow. Don't think he'll be doing that again. It was and is an extremely hard thing for him to give up.
Lynn
Hello Cheekychops - sad day when that's another bit of independence gone.
Tony did inform the DVLA with the (wrong) Parkinson's diagnosis. However, looking back, his driving had got worse some years before. We had a trip to France lasting several weeks before he was diagnosed and when we got back to Calais on the way home I burst into tears. At the time, I thought it was the strain of navigating for him, being his eyes on joining traffic etc. Now I realise it was more than that.
After the PSP diagnosis Tony was sensible in not going out alone, and one day he pulled over and said "that's it, you drive". He had never been a good passenger but seemed to accept that was the way it was going to be.
What a blessing I was still driving as:
(1) he didn't want me to learn in the first place, but fortunately I had insisted, and
(2) I was going to give up at 70 but that went out of the window!
I'm now getting towards the stage again when I'm thinking of giving up - it's a hard decision, even without PSP.
Fortunately I live in a town with access to buses and trains, but it's still difficult to let go.
One of the things I worry about is the 17-yr-olds high on whatever, who don't see ME coming, quite apart from being a liability myself as my reactions slow.
Peterjones - as Jill has said, running a car is expensive!
Mo
My wife drove for a short time after diagnosis. After following her on the road after work and an evening basketball game (professional) I noted following her home in my car that she was wavering a bit on the road. I thought it was because of fatigue. Later she rear-ended another car coming home from work. It was close to our home so when she called I went to the scene. No damage to the other car but ours was damaged. The other person was fine as was my wife. It was at that point we decided she would no longer drive. She didn't know why she hit the other car. It was not on bad road, curves, or because the other car stopped quickly. I think it was due to reaction time which was already being affected by PSP. We must remember that the cognitive effects of PSP may be slight but can be the cause of bad things. In my opinion anyone having been diagnosed with PSP should stop driving immediately before they injure another person or themselves. It just isn't worth the risk. The university here in Florida will do driving assessment tests for people with Parkinson's and other diseases. Results are NOT sent to your insurance company or the license bureau, only to the person taking the assessment. Probably more patients should have this done before they crash up. Here's how I look at it. If you are having falls, balance issues, dizzyness, etc. then why take the risk of driving? Jimbo
For what it's worth, here is the US, it's up to each State whether a Doctor does or doesn't have to report a patient who may have a condition that might make them incompetent to drive.
I live in MN and Doctors by law are required to report their patients.
I've mentioned driving with restrictions a few times...these restrictions are what my Providers and I agreed upon. And I'm wildly happy to comply.
I do have enough self-respect and consideration for others...family and other drivers...I would never put myself or anyone in a compromising position by driving if I wasn't having a really good day.
My groceries and medications are delivered, and I shop on-line and have delivered what else I need.
uh...also, have PSP I have found hasn't been conducive to much, if any, of a social life...sigh. So...there's not a whole lot of places left for me to drive to. There are a couple of parks very close by I enjoy going to and watching wildlife. My soul needs it. What can I say?
HI MISS JUDY JOHNSON I THOUGHT YOU HIBERNATED WITH THE BEARS MATE ITS GOOD TO SEE YOU BACK ON HERE AGAIN AND GOING FULL STEAM \\ YES I HSAVE HAD A BIT OF A RUN AROUND AND THEN DOING SOMETHING STUPID LIKE WASHING THE CARAVAN CAUSED ME TO CRACK MY HEAD ON THE CONCRETE DRIVERWAY MY WIFE TOLD ME ABOUT 12OOOOO675843657898 TIMES TO COME IN THE HOUSE
ABD LEAVE IT MY SON WOULD DO IT LATER ON BUT NO I HAD TO DO IT AND EBNDED BACK UP IN THE SAME HOSPITAL THEAT I HAD ONLY JUST LEFT 3=2DAYSPREVIOUS BLOODY MARVELOUS AINT IT BUT I SHALL LISTEN TO HER NOW EVEN THOUGH SHE SAYS
TALKING TO YOU IS LIKE TALKING TO A BRICK WALL IM NOT STUBORN ITS JUST THAT I DO NOT LIKE SOMEONE ELSE DOING THE JOB I AM SUPPOSED TO DO ============ LIKE WASHING UP AND ALL THOSE MUNDANE LITTLE THINGS THATCAUSE SO MUCH HEARTACHE MATYE I HAVE ANOTHER FRIEND TAKEN INIO HOSPITAL ON FRIDAY NIGHT HE HAD A STROKE THE 2ND ONE AND HES HAD HEART SURGERY SO I FIGURE I HAVE NOT GOT TO MUCH TO WORRY ABOUT EXCEPT MAKING FRIENDS ===========WITH ONE OF MY VERY GOOD MATES DIED IN NEW EALAND AND ANOTHERR GOOD FRIEND DIED 9 MONTHS AGO OF CANCER ITS A TERRIBLE FEELING TO BE LEFT AT THE POST AND I WONDER IF IT EVER CROSSES SOME OF THE WIVES MIND THAT I HAVE PSP AND IM STILL HERE ====== WHY
I WONDER THAT MYSELF SOMETIMES MISS JOHNSON
WELL THANKS FOR LISTENING TO ME RANT ON AGAIN IVE BEEN WATCHING OVER YOU MISS JOHNSON SEE YER PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER AND SLEEP APNEA TO BOOT\\ FIN
O DO
