December 6, 2022 at 9:24 pm #25576Sherman PaskettParticipant
When I was diagnosed 11 years ago, I told my wife that when she no longer felt safe with me driving she should tell me and I would hang up the keys.
That time came a few months ago. I did not have an accident; I just demonstrated poor judgment one time too many. Now she does 90% of the driving. I allow myself 2 exceptions: short trips in the neighborhood and giving her a break on long road trips. In both cases the meds have to be fully on and traffic light (not rush hour).
It is hard to lose your mobility, but that is what PD takes from us — it just never occurred to me that at 67 I would not be driving. This, in some ways, is a bigger blow than the diagnosis, but it is the responsible thing to do. I could not live with myself if I harmed someone because my foot was frozen on the gas and I could not get it on the brake to stop in a hurry.
How do other people cope with this loss (or rationalize continuing to drive when friends and loved ones tell them it’s time to stop)?
December 7, 2022 at 12:02 pm #25587Toni ShapiroParticipant
Yes Sherman, I hear you and I feel it too. When I was asked what is the thing I miss the most my answer was driving. I sold may car and gave up my license a few years ago. That was very, very difficult for me but the best decision I could have made. I noticed that my judgement was off in that I couldn’t tell just how close or far away another vehicle was, my leg would freeze or I would experience RLS, my anxiety was over the top which made my tremors worse. Always thinking what if I had a sleep attack or have an accident and so on. Like you I could never live with myself if I caused an accident and hurt someone because of my pride and desire to keep my independence. It was a blow but I found that using public transportation had advantages in that it relieved my anxiety, gave me exercise in longer walking times, got me out among people, allowed me to see new things from the window and helped to make me feel competent and still in control. I have been open to all the positives of public transport and it helped greatly in easing my loss however I am realistic and not in a fantasy about it. I still wish I could drive and know it has limited my world but I shudder when I think that I had my grandchildren in the car when my driving was reckless. I am grateful I recognized that it was time. I share your loss but I keep concentrating on the positives of letting go and I am ok. I am sure you will be too. Take care.
December 7, 2022 at 9:47 pm #25589Sherman PaskettParticipant
Interesting, Tony. It was inability to judge distance to oncoming cars that got me, too. Also taking too long to make decisions — I would see an opportunity but the thought process of deciding it was safe and executing the move now takes longer and I don’t factor that in. So far I have just been honked at, but I can see the time will come that something bad happens.
December 8, 2022 at 5:39 pm #25601Kathleen ErnstParticipant
I have not had to give up driving yet and hopefully not for awhile. I have changed how I drive, I will not drive freeways at night and I prefer not to drive at night at all. I do not drive when I’m feeling tired to any extent and I no longer listen to the radio while driving, I find it very distracting now and I don’t like driving to areas that are unfamiliar to me. I know there will be a day that I give up driving. I gave up driving in my early thirties due to vision problems, I was born with cataracts and my peripheral vision changed where I no longer felt safe driving. After having surgery on both eyes, I still didn’t drive for years. It was nice not having car payment and insurance costs! Like Tony, I used public transit everywhere and I too found it nice to relax, meet people and enjoy the view. I wish you the best
December 8, 2022 at 1:49 pm #25590JBParticipant
Hi Sherman and Tony,
My husband has PD, Young PD, is 60 now and has had it close to 30 years, slow progression but he has a lot of falls now, has DBS also, but I am sometimes terrified with his driving… “S’ing on the road so over the white lines on the curb side, always right close up behind cars and lots of other things. I really hope that when he decides it’s time, he takes the responsible path you have done.
I think it’s going to be an awful argument as he sees nothing wrong with his driving and that it’s all just style… I really don’t think so.
I will show him this post at some stage and hope that he will think deeply on whether the time is coming soon because what you did for your wife, by stopping, to put her mind at ease is absolutely top notch in my book. All the best.
December 8, 2022 at 2:27 pm #25591Lyn RichardsParticipant
Good for you, Sherman and Toni! I hope that your thoughtful and responsible choices will inspire others. I’ve been lucky so far, diagnosed 9 years ago at 66 but with slow progression, no freezing episodes or sudden sleep attacks, so I feel I can still drive fairly safely — with a few caveats. I have learned to avoid driving when I’m tired dt a few instances where I felt my vigilance or judgment was not optimal, and if I find I’m feeling a bit dozy I pull over right away & either switch drivers or, if alone, just wait until the drowsiness passes. That could take 15 or 20 minutes or more, but it doesn’t matter: safety first!
I don’t usually drive long distances (more than an hour) by myself now, even when I feel I could do it. I ride with friends when I can, walk to nearby shops more often, and have started using public transit occasionally so that when I can no longer drive the bus will be familiar. Like you, Toni, I really like taking the bus. It’s so relaxing to let someone else drive! And the bonus is that car-pooling, walking and using public transit all reduce CO2 emissions 😉
December 8, 2022 at 2:35 pm #25592Ross BergstedtParticipant
Hi Sherman and Toni,
Sherman, kudos to you for self-regulating your driving. I am currently 56 yrs old, and was diagnosed when I was 49. I am a car enthusiast and truly still love to drive. Thru my brilliant Physical Therapist a few years back, I avoided taking myself off of the road due to some neuropathic pain in my right foot, which compromised my dexterity. I also have MS, (diagnosed 2011) so some days are certainly worse than others, and the MS just so happened to compromise my right side arm and leg. With strengthening and limbering (is that a word?) exercises, I found that I was much improved in my driving ability and confidence.
I do avoid driving much at night or in rush-hour traffic. I am medically retired, so I have flexibility running errands, etc. I have had the conversation with my family, particularly my wife and adult niece, since they are my primary caregivers when I need direct care, that if they felt my driving skills had diminished, to please let me know. That way, I could either A.) have my driving evaluated and ask if there were any assistant devices that would help, or B). just shut it down, sell my extra vehicle and keep a fund that I could use for Uber, Lyft or the like. My wife and Niece were very happy to hear that I think, possibly because they had been worried, without voicing it, that “what do I do if I think that he shouldn’t drive any longer?”.
December 8, 2022 at 2:51 pm #25593CPOUSNRETParticipant
My wife was diagnosed 5 years ago and shortly after diagnosis she had to drive me home from surgery in San Antonio to our home 28 miles out of SAT.
She drove the entire trip either on the frontage roads or the right lane at 49 MPH on I 35!!
Needless to say she got home and said I don’t want to drive anymore.
That lasted 3 months and she started chirping about driving, since it was her car.
Her doctors strongly discouraged her from driving and it’s been a constant struggle since to not let her drive.
She just suffered her first broken bone with PD/ PDD over Thanksgiving so maybe she will finally relent on the idea of driving.
I tip my hat to those who do not elect to put others lives on the line by driving.
Husband of PWPD!!
December 8, 2022 at 3:41 pm #25596Alan MParticipant
Kia Ora Sherman & Tony:
My 20 year old son made me more aware of my driving limitations lately. I totally agree with the feelings you’ve both expressed, and the changes necessary to make in order to protect others (even the public at large). Like Ross, for me driving at night or when I’m extremely fatigued is tapu. This seems more of an issue in the winter, when days are shorter. My peripheral vision is fading fast, as well my reaction times seem to be lengthening — both these limitations will eventually end my ability to drive one day soon.
December 8, 2022 at 4:48 pm #25598Jon BuschParticipant
The new cars of today are advertised as almost driverless. If you believe the ads you might be able to extend your time behind the wheel.
December 8, 2022 at 5:29 pm #25599William RParticipant
I have had PD for 9 years. I gave up driving 4 years ago. I noticed my reaction had slowed and when a friend of mine with PD ran into the back of a car, I decided enough drriving for me. There have been some minor inconviences such as securing a ride to wherever I want to go, but the payoff in less woory has been worth it. I still have my license and am still covered by insurance in case there is an instance where I have to drive. I admit it drove (no pun intended) me a little crazy at first since I was alwaus the one who drove. But as my wife told me now it is her turn to drive.
December 8, 2022 at 5:31 pm #25600William RParticipant
I have had PD for 9 years. I gave up driving 4 years ago. I noticed my reaction had slowed and when a friend of mine with PD ran into the back of a car, I decided enough drriving for me. There have been some minor inconviences such as securing a ride to wherever I want to go, but the payoff in less worry has been worth it. I still have my license and am still covered by insurance in case there is an instance where I have to drive. I admit it drove (no pun intended) me a little crazy at first since I was always the one who drove. But as my wife told me now it is her turn to drive.
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