This is what Brian did
Driving: This is what Brian did - PSP Association
Driving
Written by
jzygirl
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33 Replies
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OMG! Hope you're all ok. Was he driving? X
now I don't feel so bad I have a hard time judging distanc
Did feel sorry for the owner of that car still not sure how a small automatic car can reverse so fast and knock a parked car through a wall. Was scary so I now say if you feel someone not safe driving then stop them. Janexx
I hope you aren't driving now if you can't judge distances. My husband was worse on roundabouts as he would cut other drivers up. We always heard cars hooting on roundabouts but he wouldn't accept it was him they were hooting at. We had many near misses and the car had many war wounds but fortunately we didn't have any major accidents.
Don't people normally toot you? Sorry I thought that was normal! Although I have noticed that nobody does it to me!!!
It frightening, what we all have been through, not knowing what was going on. I think deep down I recognised that things weren't right, couldn't put my finger on it, if I asked S, he thought it was me going mad. To think of all the drugs I could have subjected myself to, if I had believed him!!!
Lots of love
Heady
Very impressed. S didn't manage anything like that! Just a few dents here and there!
Lots of love
Heady
You should of seen the damage to our car apart from the roof every panel was bent and buckled. As I say speak up if anyone is worried about the quality of other halfs driving. Janexx
Bob's last driving event was to head down the wrong lane of ...oncoming traffic all bright lights. I pulled us over and got behind the wheel and that was that...
Jill
Looking at those of us who have responded here about the dangerous driving, it's awful to think how many people with PSP and other similar conditions are still driving. Not a happy thought.
Talking of driving, this morning I opened my bedroom curtains and was horrified to see our car wasn't on our drive. I ran downstairs and asked our night nurse if she heard anything in the night. She hadn't. I was just trying to remember the car number before ringing the police. It's just as well I had forgotten it, which delayed the call as I would have looked a right nijit. It was parked 5 houses up, across the road. As our drive is so steep, I have to park on the road to get the electric wheelchair out safely. Returning home from playing darts yesterday, I couldn't park on the road near the house because of so many other parked cars, so parked further up the road. After unbuckling the 5 restraining straps, getting the chair indoors, taking off Colin's coat, hat, shoes etc, putting the hoist belt round him, hoisting him onto his rise recliner, taking off the belt, for him to then indicate he wanted the commode, belt on, hoist to commode and the rest, I was so exhausted, I forgot to put the car on the drive. Instead, I sat down and had a doze.
Hi NannaB
I think I would have had a nap too. Talking about cars. The timing belt went on my car 2 weeks ago and it refused to go. Fortunately our son has a garage business and I was able to call him. He had it fixed for me the next day. I am so lucky. My husband no longer has a car as we couldn't afford 2 cars now. I think my car has taken a dislike to me. Tuesday last week I shut the door on my finger. I had to go to A&E to ensure it wasn't broken. I felt awful as Les would have taken me there and he felt so helpless. He was diagnosed in November and it is really hitting us hard. Mostly Les, as he feels lost without his car. But it is much safer now that I do the driving, or so I thought. This morning on the way to work, one of the tyres my son had put on yesterday developed a puncture. 7.30 am on a busy morning being stuck with freezing temperatures and snow I felt absolutely alone. I know I am not but it is so hard now and I am realising just what PSP has taken from us. A mechanic was passing from my son's garage and, bless him, he changed the wheel for me. I just feel like crying I never had to rely on others so much. I know so little about cars and thankfully our son does but I hate feeling as though I am using him. I never call him regarding the car and recently it just all seems to have gone wrong. I just want to curl up in a ball. I am struggling so much. I work full time and Les is reasonably fit at this point in time but I miss knowing he is there for me. I know he is still there but it just isn't the same anymore. I am sure there are others who feel the way I do but I am struggling. Has anyone a magic wand to take this damned illness away?
Love
Pat
Hi Baileyboo, it is so difficult when the person you have relied on for practical and emotional support can no longer fulfil that task, even though they think they still can. Difficult for them as well, seeing us struggling with things they would have taken in their stride. It must be very handy having a son who knows about cars. It's worse for you at the moment as your husband was recently diagnosed and you are coping with the effects of PSP on the family and also working full time. I had to retire 6 months after diagnosis as the falls became more frequent. Fortunately I was able to claim my company pension early so converted the garage into a wet room which was completed days after he fell in the bath. It was such a relief not to have to worry about work as well as my husband (and my dad in his 90s). At some point, unless you can get a lot of help, you will need to give up work so think about it before it becomes necessary.
I think you will also find that you are far more capable than you may think. I have mended the flushes on 2 toilet cisterns, fixed a washbasin back on the wall, repaired 2 dining room chairs, filled in holes in the wall, painted, decorated and the list goes on. I'm not superwoman but use google a lot to find out how to do things and have a sense of pride when the job is complete. The jobs all need doing after my husbands spectacular falls break everything in his path.
When my husband was first diagnosed I felt the same as you describe but it hit me one day; this illness is not going away, it's going to get worse not better. Do I spend the rest of our life together fretting about what is happening and what might have been or do we make every day the best we can so we can make happy memories despite PSP. I chose the latter. It doesn't mean life is easier, it's hard, it's dirty, it's tiring but we laugh together about the stupidest of things, go out as much as possible, have a cuddle and sometimes cry together. I always kiss my husband goodnight after the night nurse and I have put him to bed and I always ask him if we have had a good day. His thumb goes up and he grunts. His way of saying "Yes".
Sending you a big hug.
Nanna B
good on yer nanna b your a champion that's for sure peter jones queensland Australia psp sufferer
Hi Peter Jones, Colin has just given you the thumbs up. He has been going through a rough time since Christmas. He had a urineary tract infection so was given antibiotics. They aggravated his ulcerative colitis. Steroids stopped the colitis. Then another UTI, different sort of antibiotic, they also restarted colitis so now on more steroids. The GP has now said no more antibiotics unless whatever he has causes a fever. He doesn't need this does he? poor chap.
Hope you are staying upright.
Take care.
X
hi nanna b im very sorry that colin has been unwell mate as if he has not got enough to contend with now it does not seem fair does it when your down everything seems to come along to join in but you will be ok colin you have a lot of guts and you will pick up again for sure matey so take care me old mate next time I hear from you I expect you will be running around the block
give us the thumbs up again so I know you will be ok cheers mate ok nanna take care yourself theres no point in me saying look after him cause I know you do very well see yer peter jones queensland Australia psp sufferer
oh nanna have been upright for a whole week now I don't know if im starting to learn that falling is b dangerous or what \maybe I should just keep quiet about it and take it as it comes cheers mate best wishes to colin
peter jones queensland Australia p-sp sufferer
Thank you Nanna B
I definitely need a hug. I am finding this very difficult. We have an appointment with the professor next Wednesday and I am dreading it. I just don't know what the next blow is going to be, if there is one. We do go out at weekends - just shopping but it gives Les some fresh air. I am hoping that when the weather warms up he will be able to do the garden.
Cut the grass or something. We do laugh together as much as we can, or I can. At least when the lighter nights come back we can go for a drive along the coast and maybe walk.
I am very impressed by your skills. Google is good. Maybe in time I will be using it more.
Thank you for replying
Baileyboo
Hi Pat, we all are waiting for that magic wand! Unfortunately, it won't happen for any of us, but we all keep writing in forums like this, noting every different symptom, talking when and where we first noticed something was wrong. May be, maybe, hopefully, fingers crossed etc etc, someone in the right place at the right time, may click and start looking in the right place to find a cure for this evil disease. Thus saving the next generation going through what we are suffering! My theory is, you are born with PSP. One thing I know for certain, it is NOT an old persons disease and while that is where all the research is going into, they are not going to find a cure!!!!
Please give yourselves time to come to terms with your new life. It is not over, just changed and you have to change with it. I know how horrible it is, to be totally responsible for everything in your lives now, the pain, the frustration and the tiredness! This will pass, you DO get use to doing everything, I don't know how, but I suppose like everything, it becomes a habit, the norm! I recently had two weeks, when my sister and my daughter came to visit us, while we were on holiday. Obviously, they tried to take over, helping with S. I really struggled, it's only ME that is capable of looking after him. How sad and crazy is that? But a firm lesson, that I am taking on too much. With your diagnois being new, people will be offering help. TAKE IT,!!!!! Get use to accepting any help NOW! Don't wait until you crash before realising that you need assistance in the care for your husband. This is really hard, we all fail, but please, please try!!!
Lots of love
Heady
Thank you Heady, Les is only 59 and every medical person tells me/him that he is very young to have this. That is not information we need as we already know that. How many other people need to be diagnosed at a slightly younger age before something is done.
I am very lucky in that Les is not seriously affected as yet. I have our daughter (30) still living at home and she helps. I also have our daughter-in-law who helps as much as she can. Most of all we have 3 beautiful grandchildren Caitlin 11, Evan 10 and Lakota 2.1/2. AND they are expecting twins in June this year. Why can I not look forward to that. I have so much to be grateful for and although I know it - I just can't. Life hasn't ended it has just changed. I will eventually get that into my head. I thought I was having a good month but the tears have started again and I just can't stop them. Maybe this is nature's way of helping - I, personally, would prefer to laugh. I will find something funny soon I hope. Although we did laugh the other night when Les woke me by standing on the bed trying to reach a shelf that wasn't there. Then woke me again saying I had to move as he wanted to move the bed because it was now on the landing. Oh boy, what fun. We would all like to live our dreams but not quite in this way! He hasn't fallen for more than 6 weeks now, perhaps his PSP has been spotted early. I don't know anymore. I hate the uncertainty. I will cope, I know I will I just don't know when the coping mechanism will take over. I don't mean to sound selfish but his habit of changing the television channel in his sleep is a pain. I never know what he has recorded until I look and I just pray he doesn't accidentally record something naughty. Still as long as I have people like you on here I know it will be fine.
Thank you so much Heady
Pat
Hi Pat, the tears? What can I say, my advise is buy shares in your favourite tissue company! I think that's one bit of solid advice the consultants should give us. Yes you are going to shed lots of them, I'm afraid it goes with the terrority! I go a few days, then bang, I have a day, when they are constantly there. There is no particular reason, but off I go! I don't know what you do about it. I am begining to recognise when I need a good cry and clear off to the loo, or if I can just manage to discreetly wipe my eyes. I hate S seeing me cry. Although sometimes it does them good to know, how some of their more awkward behaviour affects us!!!
Don't be frightened to let him know, if something he is doing is upsetting you. Bad language, climbing on beds in the middle of the night etc. don't forget you are still married and couples have rows! So you are doing all the shouting, big deal. My attitude is, if I can shout at S, he is in a good place, therefore should behave properly!!! Frusatration gets to us all and it has to be released!
You say, you don't know when the coping mechanism will kick in. Pat, it already has! You are coping, life is carrying on. If you and Les, get up in the morning and make to bed time, you have coped with another day!
Life with PSP, or really, life in general, is one day at a time and be positive. Very, very hard to acheive, but the days you do, are the good days. Make some plans, go away for the weekend, or whatever. Go out for a meal, cinema (if you can) anything that "normal" people do. We go to South Africa regularly, bought a house there just before we knew about PSP, it's still possible, getting harder now. Wheelchair assistance at the airports is a huge help. Lots of hotels have rooms for disabled people, again that makes life easier. There are loads of things out there, to make our lives more bearable. USE THEM!
PSP is an evil, nasty disease, but it doesn't have to win every battle, put you boxing gloves on and give it a black eye occassionally!!!
Lots of love
Heady
Dear Heady you are really wonderful. I will reply to this later. I have just typed a whole load of stuff and lost it. I need to get on with my work while I have some. Thank you for your support and good advice. I will follow it.
Love
Pat x
Hi Pat,
I too still work, not sure who long that will last. I drive 70 miles each way, and if I think about that, it scares me to death! when I least expect it, scary thoughts pop in my head like...what if driving into work, on one of the lonely country roads, my car "dies" at 4:00am, who do I call for help???? Would have been my husband, but not now. What if , What if etc... I've been trying to think of plans to cover the what if's, but it's not been easy. If I dwell on it too much, I would never leave the house. It is a very lonely and unfair feeling. PSP makes my husband feel very useless, and if I shared this, it would make him feel worse. So the only magic wand I can see so far, is prepare ahead for the what if's. I'm thinking about joining AAA (an automotive assistance in the U.S.) That would take care of the car part... now for all the rest!
Although I can't help you with your car or most of the other unfair parts of this horrible disease, know that I care and can understand your struggles, along with everyone else here, and your at least not alone with how you feel. I hope that helps a little!
Take care,
LynnO
Thank you for replying LynnO, I am very fortunate in that my son is a partner in a garage business and has been a mechanic for 22 years. I can't expect him to help all the time as he a wife and family, and another two joining in June as my daughter-in-law is expecting twins. She only wanted 1 more - nature's a funny thing. What ifs are horrendous. We are now taking things a day at a time and will continue to do this as long as PSP allows. We will see the professor on February 4, as the last drugs he gave Les didn't work I am hoping he will have something better. I have already emailed him 2 weeks ago to give him time to think of something. I sound so selfish - we are not alone with this bloody PSP. I just feel I am the only one that can fight for Les and try to get the right treatment - if that exists. I hope to continue to work as I am very lucky in that I love my job. My boss is very understanding and supportive.
There are a lot of good things in my life at the moment but every now and again the tears come and I am not feeling sorry for myself or for Les (I feel so helpless).
Thank you so much for caring. It does help believe me. Even if the replies or thoughts I receive make me cry more, they are good tears. Tears of relief, I suppose. I hope your car continues to behave itself. Mine has never given me a problem until this month. Surely 2015 has better things to offer. I will wait and hope.
Take care
Love
Pat x
We has so many arguments about hubby's driving, I was just pleading with him not to drive, he told me I was just a terrible passenger, yes I was when he was driving, I told him I was going to tell the consultant and I did but consultant seeme to be on his side, this was when the illness was thought to be Parkinson's, It was such a relief when he stopped..
Upon diagnosis, the neurologist told Tal not to drive. Two 1500 mile trips to the center of the country and back, he just one day said you better drive. I figure there must have been an incident. About a year ago, one of the neighbors saw him try to drive to get the mail. He got out and staggered around holding on to poles. He made it home, and did not tell me. he could have killed someone. I never said a word, but took the car or keys with me even for the shortest errand. Now, I can't leave his side for a minute. It's a whole different set of problems. Jill
hi i had a bad road crash b4 i was dxd and was lucky to survive it with only ribs bruising etc
the seat belt and the air bags def save dmd as the car was a write off and i was fine.
i never drove again and returned my licence to thE dDVLA straight away.
i think men have a thing about driving or not doing so - i am not being sexist.
And i have a mobility car now iwht my partner driving it and we are about to ge t our 2nd one nex month.
so i applaud any one who does give up driving without a fight or a bad crash!
;lol JILL
in the UK with PSP
After reading all the comments I do think its a common problem with psp that the ability to drive safely is one of the signs that the powers that be should take note of. Janexx
I;m quite shocked to think that doctors don't stop people driving more. Or suggest a retest. We drive from London to Yorkshire a lot and I have always shared the driving so that probably made it easier but Chris hated being told he couldn't drive and it is a nuisance him not driving at all. The final straw for me was when we had snow and Chris went out without me knowing and took the car " for a run", snowing and dusk ,6 o'clock in London and came back with a dent which he was very hazy about. That's when I hid keys !! Jean
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