I Need Someone to Speak On: Hi, I need... - PSP Association

PSP Association

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I Need Someone to Speak On

Boobe
Boobe

Hi,

I need someone to speak on what should be done when there is the diagnosis of 'probable PSP'. I've written before of how it is like pulling teeth with my husband to get him to be reasonable and cautious since his symptoms scream PSP. Someone wrote that he should stop working, stop driving, etc.

He needs to hear it and see it written from others, it could be helpful as he will not accept this from me. The Neurologist and his primary Dr. aren't helpful in this respect. Neither of them are familiar with PSP.

My husband thinks he can just carry on until he can't. He's had many falls, plenty stumbling, unfocused eyes, double and blurry vision, foggy memory, choking and just recently, freezing legs.

I'm afraid he'll kill himself or others while driving. To him, it's not probable. He's an eternal optimist.

Please weigh in. Thanks

19 Replies
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Dad gave up driving early on, it was just to unsafe for him and the other people on the road. He had stopped before even hearing anything but maybe Parkinson's.

With all the symptoms you've list it's not a matter of IF there's an accident BUT when....

Ron

Boobe
Boobe in reply to Dadshelper

Thank you. I feel the very same on the 'when'. I will have him read your reply and all that I receive.

Hey there. I finally talked my hubby into stopping driving couple months ago after he saw a neuro opthalmologist. He said he should stop driving because his eyes were slow to respond. I said to my hubby. "I think your driving is fine but what would happen if your foot froze on the accelerator and you caused an accident and someone was killed. First of all insurance wouldn;t pay out then you would be charged with manslaughter. Surprised me when he readily agreed. I also had told him before that he couldn't pick up his granddaughter any more. I now drive everywhere and I hate driving but it is better than his driving and risking lives. Please listen to your wife. stop driving and accept that you can't do everything any more. I let him still use riding mower to mow the grass and he nearly hit an electric pole the other day. So even that might stop soon.

Bobbe, doesn't your doctor have any advice for you? I'm surprised he/she wouldn't respond to the implicit danger when you describe the symptoms??

Is a possible idea to call your local vehicle licensing bureau and ask "anonymously" how to handle such a situation? They must get calls like this from children of aging adults all the time...??

So sorry you have this worry to go through. Stay strong. XX

Anne G.

I have written this several times before but if your husband reads this and he takes notice it will be worth repeating myself.

My husband wouldn’t admit he should no longer safe driving. I was terrified being a passenger in his car. The day he was diagnosed he asked the Neurologist if he could continue to drive. The neurologist said it wasn’t his place to say he couldn’t but said as many people are first diagnosed at post -Mortem after they have killed themselves in a car accident or after full investigations when they have killed someone else as the result of a car accident, he would not recommend driving and said he wouldn’t if he found out he had PSP. It was one of the most difficult things my husband had to do, give up his driving but I told him if he killed or badly injured me in his car and survived himself, he would have to spend the rest of his life in a care home. He handed me his keys and I drove him home from the hospital after a long walk to get over the shock of the diagnosis.

Best wishes

XxxX

Our neurologist told us that we were obliged by law to advise the DVLA of W's diagnosis and his car insurance company which we did. The DVLA then arranged for W to take a driving test with a driving instructor from Disability Action. He passed and DVLA gave him a new driving licence for 3 years. However after a year I noticed his driving had deteriorated and when I asked him if he was aware he was driving towards the kerbside and then out towards the white line he replied No. That's when I suggested he should stop driving before an accident occurred. Thankfully he did. It was a year later before I asked if he would consider selling his car, saying he was paying for car insurance, tax, and maintenance while it sat in the driveway, and he agreed. Now I do all the driving.

If you haven't informed your DVLA you really should do so asap and his car insurance company as he may not be covered in the event of an accident.

Good luck, it's not easy taking that little bit of independence away from them, but you are doing it for their safety and others. xx

Hi Val

I very much agree with the other posters.

The doctor has a responsibility to speak very directly to your husband about the risks to both himself and to others. In the UK the doctor can write to the licensing authority and advise them that the patient is no longer fit to drive and the license is revoked.

The employer too has a duty to ensure that the work place is safe and that workers are not at risk. The employer is legally liable if they fail to do this. Yes, I know some of this seems draconian, but you shouldn't be left alone on this.

There was a member of this forum who didn't stop driving. They had a very nasty car accident and now they are struggling with PSP and severe and painful back injuries along with facial injuries.

There have been at least two others here who only stopped driving after a road traffic accident. One of them said they were so relieved that they hadn'd killed anybody in the accident.

One of the problems with PSP is that mental processing slows. The paradox can be that one doesn't realise that one is thinking slower and that ones reactions are slowed too. My wife stopped driving after we went out in the car together. There is a roundabout near us where one has to be fairly nifty and pull out when there is a gap. Her issue was that she would see the gap, but by the time she pulled out another vehicle had the right of way and she was too slow to stop her manoeuvre. She stopped driving that day when I explained it to her.

I wonder to what extent your husband is just hoping that if he carries on as normal then he won't have to face the illness and what it means?

Ask him what he would say to someone who had a neurological condition and who was putting themselves and others at risk?

This might be a useful for him to watch.

youtube.com/watch?v=eAlLKni...

Wishing you both the best.

Kevin

Bargiepat
Bargiepat in reply to Kevin_1

Thanks for this link Kevin......... I had not watched it before.

How is not driving going for you, Patrick?

Anne G.

I am pleased I made the decision to stop driving.......... I do miss driving out to a picnic spot where I used to walk along the river bank.

I have applied for 'attendance allowance' because I am now having help daily with dressing and breakfast.

Good luck Patrick! Think of you often :-)

Xx. Anne G.

The last time Larry and I went away for a weekend was when I realized he should not drive any longer. His response time was very slow. He hadn’t been to a neurologist as of then. Nor did I know he hand any kind of neurology problem. In the prior recent years he had a few small accidents. I thought at the time it was age. I was going to tell him when we got home I would no longer get in a car with him.

On the way home it rained all the way. The road was wet. We were in rush hour traffic because he had thought it was later when we left. Close to home we hit a stop light that turned orange. Rather then going through the light he hit the brakes and we skidded to a stop. I expected to be rear ended. I braced for it. It didn’t happen. I relaxed. Then we were rear ended by a woman who was late for a doctor’s appointment she had been waiting 6 month to go to. She was late. We were OK. The woman had a bloody nose. She sped up to us and hydroplaned into us when she hit her brakes. He stopped driving after that.

I know it is hard for people to give up driving having done it all their life. Most every time I am out in a car I see people who should not be behind the wheel of an automobile.

Prior to my wife's diagnosis of PSP and only thinking it was Parkinson's, I was noticing she was always hugging the center line while I was a passenger, which would scare me to death. I had ruptured my Achilles Tendon, so for about 2 months I had to depend on others to chauffeur me around. PSP patients are always so stubborn and I would tell her she is too close to the center line, but she wouldn't pay attention. And when pulling our car into the garage, I could tell she was too close to the edge of the garage door and was going to rub. She'd fired back that she wasn't. But she was and she scraped the side of the car. She just shrugs her shoulders.

The day she got her PSP diagnosis from a Movement Disorder Specialist (Dr Litvan), she was told she should not be driving any more. That was a pretty big blow to my wife. She was only 48 at the time. But she had already retired from being a hair stylist and between me and other family and friends, we would be happy to drive her wherever she wanted to go. But that independence would be gone. She never drove again, except ... we had a lakehouse and I would occasionally let her drive our golf cart on the side roads down there. But many times I would have to grab the wheel before we took the ditch.

PSP patients are extremely stubborn and in denial about their abilities. As the disease progresses and they can barely get up from a chair on their own without falling, they will still attempt to do so when you're not looking. My wife even climbed out of the hospital bed we had in our bedroom at 3am, over the 18" railing, while being hooked up to her PEG feeding tube that was running and while having a Foley catheter inserted. Talk about an awakening.

Please convince your husband that he should not be behind the wheel. Living with this disease is bad enough, but living with injuries from an accident, or having to live with knowing you're caused the loss of someone else's life would be unbearable.

God bless you guys.

Ketchupman

Pavaga
Pavaga in reply to ketchupman

Jeff, thanks for sharing, Patty

Bobbe, I don’t often share with my husband the posts I see here but I did this morning by saying “I was just reading a PSP post from a woman whose husband is as stubborn as you.” Bob will try to do most everything he always has, even after it has caused multiple falls! Incredibly frustrating as he gets bruised and sore and then struggles to even get up.

But, anyway, I read the “he thinks he can carry on until he can’t” paragraph to him and then added “and he’s still driving”. His comment? “Tell him it’s not so bad to be driven everywhere!”

xoDorie

Take pride in haveing a clean driving licence, give up driving and hand in your licence , it's better than having it taken away under a cloud.....Brenda xxx

I remember the day when I had to give up driving... it was the day I lost my independence. The neurologist told me he was obliged to let MTO about my circumstances - he had the papers signed and faxed before I even left his office. There are a number of reasons already posted here, but the one most important consideration for... I didn't want to be responsible for injuring or killing someone while driving when I knew I shouldn't be.

Tim

Kevin_1
Kevin_1 in reply to daddyt

Tough thing to do. But, bravo.

Y'know what?

I don't have PSP and one day I too will have to face giving up my license... I dread that day.

I hope I have the humility to accept it too.

Big step.

Warmly

Kevin

My husband Charles was a nurse! He had several small accidents and one large one. He finally said I'll leave the driving to you, me! Don't let him drive.

PSP is so strange and everyone is different but truly, it is unpredictable and scary.

I agree with the others here. I'm glad he knew to stop. The journey ahead for you is going to be hard enough without the driving aspect. At least that's one thing you can control.

Bless you.

Cuttercat

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