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Should PWME be driving?

Discussion in 'General ME/CFS Discussion' started by peggy-sue, Jan 5, 2013.

  1. peggy-sue

    peggy-sue

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    My personal opinion is that PWME are unfit to be behind a wheel.

    Our physical and mental reactions are slow and often incomplete, we cannot react quickly, we are not alert enough to pay attention. Our short-term memories are probably unlikely to be able to even carry a car registration number.

    Of course, all I expect is excuses from folk as to why they should be exempt, why they absolutely cannot possibly live without a car.... but I'd like justification from them as to why they are so much more important than the lives of the others they are putting at risk every time they get behind a wheel.

    Ok, I'm ducking behind a great big stone wall now.
     
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  2. Firestormm

    Firestormm Guest

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    I don't drive peggy-sue. Had some bad experiences. All got beyond me to be honest although i do know of course people and friends with ME who do drive.

    There is actually (that I am aware) very few diseases or disabilities that will preclude a person from getting behind the wheel. There was a red flag against me for Epilepsy but nobody ever said 'do not drive now'. It's very much from what I understand a personal choice and whilst I did suffer an 'episode' at the wheel - my decision was actually more to do with what i consider to have been cognitive difficulties arising from the ME.

    I found the concentration/focus and perhaps surprisingly memory failings or lack of reliability - made the decision for me. Though as I said it took some rather scary instances for me to surrender the car.

    I think in the past 5 years I have made a couple of very short trips to the local village shop when it became necessary and I wasn't able to walk that far - but they are really exceptions to the rule. It's a personal choice of course and I do very much miss it. Not much fun being driven around by one's parents I can tell you.

    Mind you I'm lucky I know to have that level of support and necessity these days will tend to overcome perhaps peoples reason when it comes to giving up the driving but for some of us there really isn't a choice - for me it was cognitive for others it is the physical requirements of driving I guess.

    Fire :cool:
     
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  3. Valentijn

    Valentijn Activity Level: 3

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    I think it depends on how severe someone's ME is. There's no way I'd try to drive now, but I never had a license, so I didn't feel entitled to drive in the first place.

    For me it would be primarily physical now, but I'd also be wary of trying to concentrate for long, with my feet down, etc. I drive my mobility scooter around, but that's relatively short trips and so far only when accompanied ... so if I did start having problems, someone could go fetch the car. And I only drive it when feeling pretty alert and if muscular symptoms aren't bad.
     
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  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Good Points, Peggy Sue,

    But I think this is another area where we vary a great deal individually. There were times, a few years ago, when I didn't feel alert enough to drive. But with treatment, now I am as competent behind the wheel as I ever was. If I have a bad day, yes, I don't drive, but usually I am fine for driving--except for night as I have poor night vision, and hence don't drive at night.

    Another friend with ME didn't drive for 5 years, but improved a great deal with treatment and is now an excellent driver.

    Sushi

    Sushi
     
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  5. justy

    justy Senior Member

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    Hi Peggy sue, i responded to this pont on another thread, but cant rmember which thread it was - i would like to copy and paste my post to this thread as i dont feel up to writing it all again. can you help out?

    Justy
     
  6. justy

    justy Senior Member

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    my post from the other thread

    http://forums.phoenixrising.me/inde...-do-i-experience-poll.2747/page-3#post-323082

    Hi Peggy Sue - totally off topic i know but i agree that driving with M.E is a hazardous affair that should be considered seriously by the driver with M.E (DWME)
    But (sorry there had to be one) i live in a very remote rural area - up a bridal path inbetween fields and woodland. I am relatively housebound - i cant physically drive more than a few miles due to brain fog etc caused by concentration. But if i didnt ever drive my car i would leave the house even less frequently! my nearest shop/town/life is 3 miles away. no public transport. Most of the time i only go out when taken - this is hideously restrictive. I cant drive the 30 minutes to the train station so cant go anywhere alone ever. Once approx every two weeks i drive to town. Alone. Carefully and meet up with a friend for lunch or a quick look in the charity shops beofre heading back to the prison of my home.

    Once or twice a month i drive the 3 miles to town to take my daughter to ballet - its touhg if i never ever take her and hard for my husband to do all the running around as well as all the working for money, shopping etc etc.

    Even if we had a bus i couldnt use it as i cant walk around twon much and need to park more or less outside the shop. So i hope you will reconsider your position that no one should ever be a DWME.

    What about the mildly affected? how can they work and schlepp about on public transport? I was only mildly affected when i learnt to drive and was perfectly safe so long as i knew my own boundaries (no driving alone at night, frequent stops if motorway driving (cant imagine ever being able to do that again!)

    All the best, Justy.
     
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  7. justy

    justy Senior Member

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    your response to my post:
     
  8. justy

    justy Senior Member

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    My response to your post:
    Well peggy Sue, perhaps you have the luxury of being able to move somewhere else. Do you suggest i leave my husband and children to live next to a shop, becuase you are not comfortable with me driving. I would not and do not drive further than i am able. I am a very competent driver. i drive on small country lanes, never on motorways. I drive very sensibly and dont speed. If i dont feel well enough to drive, i do not drive. I dont have any friends or realtions to help. I am totally dependant on my husband. Its hard enough being so inafntilised, without being told you cant drive. I have struggled to overcome agoraphobia, brought on by years of medical neglect - if ic an drive more i will.

    I'm certainly safer than all the 80 -90 year old farmers round here!​
     
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  9. SOC

    SOC Senior Member

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    When I was more severely ill than I am now, I didn't drive because I didn't feel that I was a safe driver. Once my cognitive function improved, I started driving again, although I don't drive a lot.

    Like so many other symptoms, cognitive impairment -- both in type and degree -- varies among PWME. I don't think all PWME should quit driving. Plenty of mild ME/CFS patients are not so cognitively impaired that they shouldn't drive. Many more physically impaired PWME are still cognitively capable of driving safely.

    I do hope, though, that those PWME who are seriously cognitively impaired have enough personal responsibility not to drive -- even when it's inconvenient or humiliating to give up another layer of independence.

    That said, I'm not living alone trying to care for myself. The question of when to stop driving comes up in other illnesses and especially old age and it's not easy for anyone. Giving up your only mode of transportation when you live in an area where there are no other options and you have no one else to drive for you is a different issue than giving up driving when you live in an urban area with mass transportation or have someone to drive you. I'm not in any position to make these kinds of decisions for someone else.

    I think we have to trust each other to make the best decisions we can. We also need to be emotionally supportive of those of us who have given up driving -- it's a huge loss of independence that no one wants.
     
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  10. Sea

    Sea Senior Member

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    I think it is an issue that we each must consider very carefully. We are all affected differently in many ways.

    As an aside I am always amazed at the number of people I've spoken with (who have doctors who don't take this illness seriously enough) that have been told by their doctor to continue driving in spite of complaining of difficulties such as struggling to stay awake, poor concentration, slow processing and responding. You know, part of the "don't act disabled" treatment and you'll be fine. Really scary and just dumb!

    I have limited my driving in recognition of my cognitive issues. Also these are some of the extra precautions I take:

    I don't drive more than 30 minutes, and even that is rare.

    I take quieter roads where less decisions have to be made, but it's not safety that is at stake - less decisions simply means longer before I am worn out and can't think.

    I keep a greater distance between me and the car in front so I have more time to react.

    I don't listen to music, radio or have conversations while I am driving. They are too great a distraction for me.

    I plan ahead by resting the day before I need to drive the 30 minutes to the doctor.

    There are days I can drive and days I won't. If I lose the confidence that I know when I should and when I shouldn't then I will stop driving completely.
     
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  11. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I, too, think that we vary enough in our functionality that the decision has to be an individual one. I have put about 100,000 miles on the car I currently own. I have put at least that much on other cars since I got ME. I have had two collisions in that time. The most recent one was about 10 years ago.

    There have been a few times that I pulled off of the road to rest in some less that safe situations. I figured by pulling off I endangered only myself, if I stayed on the road I would endanger myself and others. Fortunately, nothing bad every happened. There have been plenty of other times that I found safe places to rest. Much of this occurred before I had any sort of diagnosis or any clue what my problem was. I was simply becoming too tired to drive, so I pulled off.

    I did both my undergraduate and graduate work (where I got the killer flu) a few hundred miles from my parent's home. I developed safe long distance driving habits before I got ME. I stay well hydrated, eat small meals, stop every 1.5 hours to get out of the car, stretch, and move around and drive a reasonable speed.

    If I am driving in an area with high enough traffic density to have traffic lights, I try to make left turns at a light. I also do the 3 rights instead of a left.

    Should the distance I can drive safely before needing to rest ever become zero miles, I will stop driving.
     
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  12. taniaaust1

    taniaaust1

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    Im one who has had car accidents due to the ME and ended up running into another car due to this. I'd like to say I was unfairly FORCED to drive under threats of gov agency (Centrelink.. the australian welfare system) that if I didnt attend the part time work of 6 hrs? I was being forced to do... that they would completely cut of the money I got from the government to support myself. I needed that money for food, rent and to survive.. they did that to me while I was undergoing appeals as they kept on rejecting my disability application and then started to refuse to take my sickness certificates. (this was Mt Barker Office Centrelink). I had to appeal rejections for disability payments 3 times.. the gov agency wouldnt listen to my specialists or me on how sick I was.

    Id love to be able to sue them for the accident they caused me to have, due to the threats etc placed onto me about taking away my benefits if I didnt go to work which then costed me a lot of money due to the car smashes (I was basically falling asleep at the wheel while trying to get to the work I was being forced to do). I knew full well I shouldnt be driving (I would of otherwise been in bed asleep) and that I was too sick to be doing so. I DIDNT WANT TO BE UNSAFELY BEING MADE TO DRIVE. It could of killed me or another. (I did thou know back then when I was safe to drive and when I wasnt).

    After I got FINALLY onto disability (my case ended up being heard in a different Australian state).. I ended up stopping driving as soon as I found out that I was unawarely driving throu stop signs due to loosing comprehension of what was going on around me at times. (two different unrelated people within days told me I'd driven throu a stop sign without slowing down at all.. I did then remember seeing some sign but not comprehending what I was supposed to do). I then almost ran a road worker down so that that point realised I had to stop driving (unlike many, I had no support people around me at all.. no family etc to help, so the loss of being able to drive was a HUGE thing), I havent driven since as I know my brain still isnt up to it. My brain still has a way to go before I know Im a safe driver again.

    Irronically when I started having seizure like incidences and also having sudden unconciousness at times.. no doctor took my symptoms seriously enough to ask about my licence and remove it thou these problems became common for a while. It was only last year that a doctor finally asked me if I held a licence and when i said yes.. next thing I knew.. he'd got it cancelled.

    I ended up going to a different doctor and he helped me to get it back as he agreed with me that I should know when Im ready again to be able to drive and should then be able to do so when the time comes when that occurs (as I are on disability now.. Im not forced to drive by government people by threats!!). Its weird how I want to hold onto that when I cant even drive and havent done now for over 2 years (thou I still have a car but Im about to sell it)... I guess Ive had soo many looses in my life due to this illness..thou i dont drive.. I still dont want to loose my legal right to do so. So for now, I keep my licence but dont at all drive.

    There is no doubts in my mind that there must be a higher death rate for ME/CFS people when it comes to driving. Im sure Im not the only one who from life circumstances or due to others, has been forced to drive when knowing it is very unsafe to do so.
     
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  13. Firestormm

    Firestormm Guest

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    I'm not sure I'd equate greater risk with death rate, Tania. I think that as CFS/ME is yet another disease whereby the severity of symptoms varies and are unpredictable - greater care should be taken if a person decides they are able to drive. I am sure that some people (and maybe in the near future even myself) feel they have to drive when (as has been said above) there is no alternative due to rurality, a lack of alternative provision, or because of a need to work, get to appointments etc.

    There is no evidence that I am aware of that people with ME are even at risk from driving - or greater risk. It would be worthwhile perhaps for a study to be undertaken that did indeed look into this - even if it were to compare people with ME with those with MS for example. Whether or not such a study could quantify what symptoms were more likely to account for any increased risk would be interesting to read also I think.

    I can't say I ever ran any red lights due to my condition. That sounds very scary indeed. I felt great fear and a lack of control when driving at times when really I shouldn't or when symptoms become overwhelming; but in almost all instances I was able to pull over and rest and/or call for help. Even woke one time in the back of an ambulance - but fortunately I had again managed to pull over before blacking out and a passer-by had reported me being 'in distress'.

    A couple of instances like those above and I decided enough was enough - but I don't rule out a return to driving by any means. I think my health in general is at a point where to drive would be too risky at the moment - for others if not for me - but one day I hope to return to Formula 3 :)

    N.B. When I was working with people with MS I was also working alongside people with Parkinson's and I have to say - on a purely observational and therefore subjective point of view - they scared the crap out of me! Not all of them by any means but those who got behind a wheel and who to me were talking, acting, unable to walk very well etc. etc. i.e. those who I felt cannot possibly drive safely - I mean jeepers!!
     
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  14. peggy-sue

    peggy-sue

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    Thank-you all, for your responses :hug: - and I'm delighted to hear so many folk do think about this so carefully!

    Justy, I do understand your position, and I do think you are a very responsible person; I have read your posts here!
    My real and most sincere apologies for being so harsh on you on a personal level. I am very grateful to you for persevering with your responses.:)

    Tania, my heart goes out to you - you must be somewhere close to getting into the guniness book of records for being the single human being to be stuck between the most sets of rocks and hard places. :cry:
     
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  15. In Vitro Infidelium

    In Vitro Infidelium Guest

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    This is one of those areas where based solely on my own experience, I end up saying "I can't understand how anyone with M.E/CFS can drive". The reality of course is that when we talk about M.E/CFS we are dealing with a set of symptoms that vary hugely across a large patient population. So I am not at all suprised, that while I'm wholly unfit to drive, there may be many M.E/CFS sufferers who (at least on shortish journeys) can drive perfectly safely.

    In my case the combination of impairments of balance, visual perception, cognition and memory make even walking a problem at times - let alone using a machine and that would include a disabled person buggy. I surrendered my driving license years ago, which at least made it easy to qualify for free public transport. But for sufferers whose impairments are primarily muscular, physical weakness and/or PEM, then driving for a limited period, perhaps in adapted vehicles and with a companion may be perfectly reasonable. We are a very diverse group and I don't think we can be prescriptive about how folks choose to manage their lives.

    I don't know the answer, but I'm guessing that if someone is driving while knowingly impaired by an illness/disability that their insurrance would be void and in the case of any accident could be guilty of criminal negligence ?

    IVI
     
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  16. In Vitro Infidelium

    In Vitro Infidelium Guest

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    One thing that Parkinson's sufferers do report is that where they are able to concentrate, the physical symptoms, especially the shaking, can subside, so I'm guess that for some, being behind the wheel might actually offer a period of relief. Still there is certainly a question of responsibility to others.

    IVI
     
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  17. peggy-sue

    peggy-sue

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    Interesting point about Parkinson's sufferers, IVI!
    One of the things about driving is that it becomes automatic - automatic movment sequences are not under conscious control, but, I believe, controlled by the cerebellum. (not much is really known about the cerebellum)

    I would imagine the concentration involved - along with the confidence that driving is an easy and automatic thing to do once concentration is engaged, would help a great deal.

    This would eliminate the shaking - the problem in PD is initiating a movement, consciously and deliberately.

    My OU course where I studied this made an amusing, anecdotal point to illustrate this phenomenon.

    The actor Terry Thomas had PD and he had the most dreadful trouble getting through doors. He discovered the way to solve this was not to try to walk through a doorway - but to waltz!
     
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  18. justy

    justy Senior Member

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    I think that this is definately an interesting discussion and not one we have talked about much before (at least since ive been around)

    There have been days where i have tried to drive and it has been too difficult, die to blurred vision etc and i have given up, and times when i was afraid of driving, but didnt need to be.

    When you have a long term chronic illness that is undiagnosed (17 years for me) and all you get told is that you are a depressive, anxious etc, then other people around you cannot understand why you feel anxious and pnicky about driving, This is what happened to me - when i was so severely ill that i could only do one or two small tasks a day, and should have been in bed resting, instead i was pushing myself enormously, trying to run my household, trying to drive to do shopping, trying to get to work and appointments. Because i didnt know what was wrong with me i developed a terrible fear of going out and especially going out alone. I started having severe panic attacks.

    In this context family and friends pushed me to do more and get over my anxieties. In actual fact i was very ill and needed to stop. When i got my mito tests back from Dr Myhill and she gave me a score of 25/30 on the bell scale - putting me firmly in the mod severe category i literally collapsed and couldnt do more than get up and dressed once a day for over a year.

    Unfortunately the label of agoraphobia stuck, and although with improved functioning the anxiety reduced and the ability to go out and do things increased i still have this residual label - although my GP now calls it reactive agoraphobia (obviously a non sensical term, but i appreciate what hes trying to say)

    So for me i still CANT drive very much, which my family finds hard to accept. Most of the time i am fine with the 3 miles to town and back - but even my husband cant understand why i wont drive further. Driving these days is so much harder work in general - the concentration required can be very draining. I really miss my independance more than anyhting and if it were just up to me i would live in a town with good transport links where i could get around and learn to be a bit more in the world and less afraid.

    It is hard to be confident about being out in the world when you live in a remote place - help is not easily at hand and there is no mobile signal for miles around. If i break down i cant walk the three miles home. I cant move. so for now i hope that i can imporve some more and do the things rthat i used to do when i 'only' had mild M.E - take my kids to the beach, perhaps even drive to visit my mum 9although ive only ever been able to do that once in my life so thats a big ask.)
    Sorry for the long post - your question has brough up a lot of issues for me that i am currently struggling with.
    Justy x
     
  19. peggy-sue

    peggy-sue

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    Apologies yet again, for it being you that got the brunt of my points, Justy - and I'm also sorry I've brought so many uncomfortable and sad thoughts to the forefront of your mind. I would have said the same awful things to anybody who responded, it really wasn't personal. I do feel very bad that I've upset you, particularly as you are clearly very, very responsible about your driving.

    I find it's the loss of my concentration, short-term memory and ability to think clearly is
    (ie. basically the loss of my intelligence, the bit that makes me "me".)
    that is the very worst part of this disease.
    Social pressure makes me pretend I'm coping and understanding what's going on around me - I can't seem to stop pretending, but I'm really, really terrified of "being found out".

    On a brighter note, I found out a long time ago that a lot of folk underestimate their happiness, because they're forgetting to look at life as a whole.

    They look at what they want, but don't have and count that as negative.
    They look at what they have, but don't want and count that as negative.

    They look at what they have and do want, and mostly, can count that as positive.

    But they never, ever look at what they don't have and don't want, and remember to count that as positive.

    So, as I don't have a broken leg or ebola virus - I can be happy about that.
    It really does help to be able to include this way of thinking into life.

    The real secret of happiness is to actively want and appreciate what you do have.
     
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  20. justy

    justy Senior Member

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    Peggy sue, please dont be sorry - it is always good to talk about things - these things are much on my mind at the moment and its nice to be able to share it and vent a bit.

    I think you have a very valid point, and one worth talking about.
    all the best, Justy.x
     
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