What about being a passenger?

[mcfly]

Does your person with PSP have difficulties being a passenger in a car? Do they constantly feel like you are driving too fast? Are the images coming at them too fast?

[NannaB]

Hi Mcfly, when my husband stopped driving because of his PSP diagnosis, he did say I drove too fast and told me to slow down. On one occasion I went down to 25 mph in a 40 limit (nothing behind me) and he still said it was too fast. He never mentioned how he saw things, only that I was too fast. Sadly it doesn't happen now as he rarely speaks and his eyes are usually closed so journeys are silent except for the radio.

Nanna B

[SharonAB]

Dear McFly,

Yes, Yes and Yes.

Regards, Alana - Western Australia

[Heady]

Hi Mcfly,

S hasn't driven for about 18 months now. Can't say he moans about my speeding. Actually, he is normally very good. Knows his place, I do get a bit (!!) cranky, when he does criticise! So probably thinks it's not worth saying anything! Sensible man!!!

Lots of love

Heady

[revmmh]

My mom didn't talk about that specifically, but she had a hard time keeping a seat belt on and opened the door a few too many times as we were driving. I would say "Mom please don't unbuckle your seat belt." "I'm not." "Yes you are. Stop please." "okay" on a loop for minutes at a time. So frustrating! But I'd give anything to argue with her over the seat belt again!

[cabbagecottage]

You know you shouldn't argue but how can you help it . We are as human as they are lol

[quickgel]

Hi Mcfly, certainly my wife complained quite a lot, not so much when travelling in a straight line but every bend was attended by a fairly robust rebuke!! We lived on a narrow country road so there was plenty of opportunity for her to mention her displeasure/discomfort. When I offered a plea in my defence, explaining the need to follow the direction of the road, it was met with frosty silence - until the next bend!!

Severe motion sickness must be awful and there came a point when the benefit gained from going somewhere was outweighed by the misery of the journey getting there. The issue was resolved when the hospice very kindly arranged for alternative therapists to visit the house, and a carer or friend looked after Margaret while I shopped.

I hope you soon find a solution and there is always the chance that the symptom will become less pronounced, as sometimes happens with PSP. Regards Jerry.

[pollyannajo]

Hello Mcfly,

Yes my relative couldn't focus on anything and I drove really slowly at times!! sadly now he is too poorly to go in the car. I kept a running commentary up trying to make the journeys more interesting but am not sure how successful that was.

I still push him out in a wheelchair and don't think he sees much even in that , still do the commentary thing tho.

Love pollyannajo

[NannaB in reply to pollyannajo]

My hubby doesn't see much as his head is always down and eyes mostly closed but he does still enjoy going to gardens, parks, sea side etc. I take my iPad with me and take photos as we walk round. As the screen is large, I show him the photos of what I'm seeing, putting the ipad on his lap. I asked him if it made a difference and he put his thumbs up. I also do a running commentary.......even when I'm on my own.

Nanna B

[mcfly]

Now have had my wife drive me-my daughter drive me- my friend drive me -my brother drive me and all drove too fast-- the corners made me really nervous--My brain is not handling the change of the scenery if we turn--I know they are all good drivers so my feelings are not rational -- is like watching a movie with a bad camera man.

[zjillian]

Well my husband was always a backseat driver and nothing has changed about that but now it is more that he recognizes nothing and doesn't understand the images and traffic and buildings and all of the people on the street etc. So he get very nervous about where we are going and going so fast and why and why and .......I just try to keep him calm and reassured. But most of the time I just have to ignore it and tell him we will be home in 5 mins. Also I found that dark sunglasses help somewhat and food..candy, ice cream..anything sweet distracts and calms him.

Jill

[jimandsharynp]

Yes, my wife thought I was driving too close to the center line when I was not. I think the cognative part of PSP can cause things to SEEM speeded up when they are not. The PSP brain works but in my wife's case it worked very slow. Caused her to hit the back of another car. I think her perception and reaction time was slow because the car was stopped ahead of her and didn't stop suddenly. She said she saw the car but couldn't explain what happened. Probably because she knew she SHOULD know that happened but couldn't put into words what happened. Jimbo

[ultramodern]

Bonjour mcfly never had any problem with my wife (PSP) while driving because by the time we were out of the front drive she had fallen asleep!

Later this happened in ambulances going to hospitals.

About driving in the early stages of the disease. My bride came home one day from seeing her physiotherapist and said she'd had problems getting home...to do with steering. She decided then and there she was not fit to continue driving. And she never drove again. For the record, she loved driving and was exceptionally good at it.

[Sugardart]

My mother frequently grabbed at the door handle and opened the door. My husband had a brain stem stroke in the middle of all this. It turned out that he had visual issues with his peripheral vision. The vision specialist suggested limiting his view as we travelled and it did help significantly. It is similar to a horse wearing blinders. Wrap around sunglasses with the sides darkened or painted helped limit him seeing trees, cars, etc. zooming by.

[shasha]

i do feel like my husband is driving too fast - its weird i know he probably isnt but i still have to cling on

[LynnO]

Oh Mcfly you've described my husband to a "t". He is always telling me that I'm driving too fast. Normally I'm going a little under the speed limit just for that reason and he also feels like the cars in the other lane are coming directly at us. I tell him to close his eyes in traffic, and he does. (obviously I'm driving!) If a big truck passes by us on a two lane road he gets really frightened. He really doesn't like riding in the car when heavy traffic is present, it causes a great deal of anxiety. The car lights at night are very difficult for him also, so he's been wearing his sunglasses at night and that has seemed to help a bit.

[jillannf6]

hi mcfly

no its not a problem driving too fast - i just tend to be nervous when in my partners car and cannot explain why(and v restless too)

lol JIll