Three month check up: The PA working with... - Cure Parkinson's

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Three month check up

kaypeeoh profile image
27 Replies

The PA working with Dr Bortan was quite thorough. They found no tension in my right arm. I couldn't say ' World ' backwards. But I knew the date. But as before they want to take my license. Bottom line is No F******* Way. My wife keeps the key but I had decided long before the exam that I'll break into my pickup and leave the state as fast as possible if they push this. She and I are at a state of detente over this. But I am resolute.

Dr Bortan is raising the dose of Rytary and scheduling another Botox treatment for next week.

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kaypeeoh profile image
kaypeeoh
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27 Replies
kevowpd profile image
kevowpd

Not that me saying so will have any impact when you are already ignoring your doctor and wife, but if they are saying its time to stop driving, its probably time to stop driving.

Driving safely is not simply about navigating the vehicle in predictable conditions, its about being able to deal with the unexpected and being able to so quickly.

If you mean that you couldnt announce the letters d-l-r-o-w in that order then yeah, stop driving.

MarionP profile image
MarionP in reply tokevowpd

Well it depends what the empiric results from not being able to say that word associates to driving impairment. If it is just simply a suspicious prejudiced belief on the part of the examiner, then no I would not accept it. If there was a history of near misses or falling off the road or again, empiric evidence and events such as these, that's different. And yes, when my 93-year-old father finally started doing things that were sufficiently erratic and sufficiently incompetent, we turned on him even though my brother-in-law who actually had conservatorship and decision making power over his behavior continued to support him, we pressured them into having an examination and the examination showed he needed to hang up his keys and even then his guilt-ridden son would not force the issue, we did. We would not have got a hearing, not being direct guardians, but because of my prior status as licensed career psychologist, we were able to get a hearing. Sad that that is what it took. But as soon as the empirical evidence suggested a risk, a significant risk that is, we pushed hard and got the plug pulled. The driving evidence is what matters, not individual or primary care prejudices. But the decision does need to be made by an objective external party, not the driver, not the spouse, and not a physician concerned with his own personal liability. It's sad that you never know whether you can trust the physician or not.

My father deeply regrets that he refused to give up driving until he crashed. He too was very confident. I’m 46 with young onset Parkinson’s. It is my assumption that in 10 years when I will only be 56, there is a strong likelihood that I should no longer drive. We are planning for this eventuality. Thankfully I am a strong person who can emotionally handle this reality without letting my pride get in the way of reason.

kevowpd profile image
kevowpd in reply to

Unfortunately, MCI or PDD can influence the way things are processed, so how one deals with these things can change as those things develop.

ConnieD profile image
ConnieD in reply to

Your story is similar to mine, I was 46 when officially diagnosed but had symptoms prior. I’m 55 and haven’t been driving. Your so right we have to think of others first. If this disease teaches us anything it’s humility. Many other lessons but humility is a big one!

KERRINGTON profile image
KERRINGTON

There are better ways to test a person's functional skills than asking people to say words backwards. If. it were necessary to read and speak 'pig Latin', then it would make sense, but we don't. This doctor is using primitive tests. I bet he uses a tape measure to test brain size too. I had extensive training in my former position to evaluate functional abilities in adults, and children, I wd have been fired if I usednonsensical saying words backwards !

in reply toKERRINGTON

I agree. The doctors assessment sounds inept. But, seniors with Parkinson’s and driving is a bad combination. And if his wife who is or will likely be his caregiver, wants him to not drive, that should be respected. I went through this with my Dad.

Our Parkinson’s is not just a burden on us. It is a burden on the whole family. Adding to the stress and worry of the spouse who has to deal with us is cruel.

This is triggering for me because I went through it with my Dad.

But the problem was resolved when he crashed his car and was found by the police face down on the side of the road.

Fight Parkinson’s

Do not fight those who are trying to help you fight Parkinson’s.

kevowpd profile image
kevowpd in reply to

I think given that the Dr has been named, we should avoid forming conclusions on his/her job performance. There is every chance that there was a lot more done than we have been told about.

Gioc profile image
Gioc in reply tokevowpd

In this case, not even making judgments about the person's ability based on a single word like you did.

kevowpd profile image
kevowpd in reply toGioc

The doctor who examined him thinks he shouldnt drive. So does his wife.

Gioc profile image
Gioc in reply tokevowpd

there are precise motor and reaction tests that establish the driving ability not only for the pd and are evaluated by engineers. diabetics are less fortunate because they use disabling drugs. The latter is the medical field.

kevowpd profile image
kevowpd in reply toGioc

None of which is necessary if you have been assessed as being in the early stages of PDD or as suffering from MCI to a degree that means you shouldnt be driving. Its only going to get worse. Lets say one of these 'engineers' gives you sign off. When is the next test? In a week? A month? A year? What happens if there is significant deterioration prior to the next test? Would it not be better to err on the side of caution?

A wife and a doctor telling you not to drive is pretty compelling evidence that you shouldnt be driving. Driving is a privilege, not a right.

Gioc profile image
Gioc in reply tokevowpd

in Italy it is a constitutional right. By the way, what does your wife think of your driving? 😂😂

pdpatient profile image
pdpatient in reply tokevowpd

Driving is supposed to be incredibly satisfying, soothing to the soul and cathartic. At least in America, it epitomizes the free spirit and sense of independence.

I used to love going out solo business trips by rental car and I would drive long distances and listen to audio recordings of various types. It was liberating beyond words. On other long trips we would have fun as a family and when the kids were younger, they would fall asleep and my wife and I would have our own free time and have the most important couple conversations ever. The memories of those drives are still embedded in my mind as if they had just happened.

Once this same experience becomes a chore, and the car becomes an embarrassing encumberance and becomes a liability in more ways than one you have to emb a new normal. When one else wants to go anywhere with you in the car that you are driving, including the same wife and I should felt the safest when you drove, it becomes a pathetic situation. There is a point at the expression of your so called independence, it is time to let go.

I have personal and in depth perspective because I am in the process of renewing my California license. My job is made tougher because my wife is an ex DMV employee who was trained to spot drivers who shows signs of incapacitation such as a tremoring hand. Obviously, she would not allow me to fudge the question on the renewal forms which do ask if I

have developed any medical condition that interferes with my driving in a safe manner.

Lastly, I know that I am anonymous here and the statute of limitations has passed, but I still need to be careful with what I say here. So here goes :.

I was told that I had backed up into another parked car at a gas station two years ago. It was a very minor fender bender. I stopped immediately, but started tremoring furiously, so much so that the other party thought I was having a heart attack 😂😄 They accused me of not using my rear view mirror and not being mindful of my surroundings. In a rare situation, my own insurance company that I have had for 25 years sided with them. I had to pull out all the stops and fight it tooth and nail. I emerged triumphant.

Well as the records will show, the "accident" was their fault. After all I have an unblemished driving record of 35 years of driving with not a single claim for insurance. It was my word against theirs. It is after all their fault. 👌🙃😉😇

I have not driven much since that day! Who knows what kind of crazy drivers are out there? As one of the safest drivers around, I can't be too careful 🤔😨😱

RKM

ConnieD profile image
ConnieD in reply to

I have a license still but personally chose to

not drive after dyskinesia worsened. I couldn’t live with myself if I injured anyone. I haven’t driveN in a year and a 1/2, very difficult but I can’t live with the alternative.

ConnieD profile image
ConnieD

Is the Botox for dystonia? If so is it helpful? Thank you

kaypeeoh profile image
kaypeeoh in reply toConnieD

Thanks for the responses. I was seen at a motion/movement clinic. After a month of treatments they said I was fine and didn't need to come back. Another doc said I have problems with executive function. To me that just means I need longer time to make decisions.

Dr Bortan put the idea in my wife's head that we could be sued if I crashed into someone. She said she doesn't want to take my license because I might need it as identification for getting on a plane, etc. I think the doctors worry that they might be included in a suit if I crashed. It's in their best interest that I don't drive. I don't believe it's in mine.

I don't need to drive because I have this motor scooter.

But on the motor bike if I crashed I would be the only one affected.

I welded a luggage tray into the seat frame and lowered the shocks two centimeters to make the ride more stable.

I don't have dyskinesia, I don't freeze, I don't move slowly, I don't have balance problems; I can stand on one leg for 60 seconds or more. I don't have 'Off' periods where Rytary has stopped working. I think my mind is still functioning. I can easily complete crossword puzzles. Dr Bortan mumbled something about medication but doesn't want to try quite yet. I think she was describing Solace.

The botox is for left arm tremor, my only PD symptom.

Motor bike
pdpatient profile image
pdpatient in reply tokaypeeoh

Connecticut offers a Real ID Identification card. You don't need a driver license to board an airplane.

Other options exist for air travel. You can get a USA passport card and that alone might suffice. Or, the full passport alone will do.

Your doctor is right. You are looking at a lawsuit or worse if you're in a jam. The only person who can possibly save you is ironically, Dr. Bortan 🤗. She would have to testify that you are unaffected by the disease and when properly medicated, you will not pose a threat to other drivers on the road. If she was testifying in the case of an unfortunate accident, her words alone can save you or doom your chances of redemption.

Connecticut is still better than California. Here, they now ask you if you have any newly diagnosed condition that could impair your driving. This is new and did not exist when I moved out here from Connecticut five years ago. If you disclose the condition, you will be called to a hearing and guess what? The first thing that they ask you is whether you are okay to drive in the opinion of your doctor.

Sony to break it to you, pal. The doctor or MDS, in the eyes of the law always reigns supreme 😂.

RKM

MarionP profile image
MarionP in reply topdpatient

Pretty much what you said, yep.

in reply topdpatient

I agree with this statement. Men are so scared to lose a part of what made them worthy. But is it a worthy decision if you cause harm with a vehicle to someone else. The hard part may be losing your license but it's even harder explaining to the family why you drove when told not to.

Millbrook profile image
Millbrook

Try the psychobiotics ps 128 2 sachets or 2 tablets at bedtime. It made a great difference to my husband’s driving. Vit B1 helped with his lane discipline but he was driving very slowly. I suspect it’s because he is processing everything slowly that is why he is driving slowly. With the PS 128 he is processing everything faster so his driving is now back to normal n reflexes are faster too. Balance has improved as well. I hope it works for you. It took a few weeks to kick in.

But if doctor still thinks you should not drive, it’s for your own safety and others as well. It’s one of those things. So sorry.

M-o-ggy profile image
M-o-ggy in reply toMillbrook

Hi there. Where do you buy ps128

Millbrook profile image
Millbrook in reply toM-o-ggy

It’s sold in the US under Solace

In Asia info@activhealth.com.sg

It is transported under special conditions

The type is ACTIVE for PD not MIND

kaypeeoh profile image
kaypeeoh in reply toMillbrook

Thanks, I want to try it. Not much about it in Pubmed: pubmed.ncbi.nlm.nih.gov/307...

Millbrook profile image
Millbrook in reply tokaypeeoh

Look for Probiotics PS 128 in the search bar. Other members also posted articles there. My husband seldom drives because I do most of the driving. Most noticeable change was his driving.

kaypeeoh profile image
kaypeeoh in reply toMillbrook

Thanks, I want to try it. Not much about it in Pubmed: pubmed.ncbi.nlm.nih.gov/307...

Astra7 profile image
Astra7

When they took away my law abiding dads licence at 99 we were all stunned to find him ‘just making a short trip’ in his uninsured car driving right by the primary school. I have never seen my brother move so quickly to get round and remove all sets of keys before he killed someone! He got over it.

Sometimes we have to believe other people when they do things for our own good.

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