I am interested in the replies to this, as well. Also does anyone know the connection between a surgery prior to diagnosis of PD? Our neuro said sometimes a surgery" brings it on". Another thing is the onset considered when you notice symptoms or when the official diagnosis is made?
This is my opinion only, but I believe the onset is when your symptoms start whether or not you notice them. I was just diagnosed August of this year but I knew I had something going on for many years, and it's the same with others here. Even before I made up my mind years ago that something was wrong there were signs that I never associated with a problem, such as dropping things routinely. Only in retrospect do I associate it with the beginning of PD...and that goes back a long time...at least a decade. So when I'm asked by a doctor how long I have had PD, I say I was just diagnosed this year but I'm convinced the onset was years ago and I'm not sure how many.
I have read several times that symptoms of PD begin typically about 4-5 years before diagnosis. That squares well with my experience of dragging one foot, with a resultant tendency to trip on the carpet. (No actual falls though since I caught myself.) Here is recent scientific validation. The graphs (figs 1-3) are the quickest way to get a bird's eye view on the onset of various prediagnsotic symptoms. These statistics will also help us decide which symptoms were foreshadowing Parkinson's.
In this study, we show that individuals with a subsequent diagnosis of Parkinson’s disease present to their primary care physicians with several motor and non-motor features of Parkinson’s disease that might represent prediagnostic features. At 2 years before Parkinson’s disease diagnosis, except neck pain or stiffness, the incidence of all examined features with prevalence of 1% or more was higher in patients who went on to develop Parkinson’s disease than in controls. At 5 years before diagnosis, compared with controls, patients with Parkinson’s disease had a higher incidence of tremor, balance impairments, constipation, hypotension, erectile dysfunction, urinary dysfunction, dizziness, fatigue, depression, and anxiety. At 10 years before diagnosis of Parkinson’s disease, the incidence of tremor and constipation was already higher in those who went on to develop Parkinson’s disease than in controls."
Well it is my opinion that if you are confident you can react quickly enough to avoid an accident then it's OK to drive. If not then you should not. I drive still, but I do not go long distances because I do not have the stamina and do not trust myself for more than about a half hour drive.
I do think it is a good idea if you can afford it to get a bran new car with all the new driving safety features. The newer models have the option of self breaking if you are about to hit something. Warnings of things in the way if you are backing up. Warnings if you go over the line without signaling. All these things can help.
I voluntarily gave up driving because I was falling asleep at red lights. It is life changing, freedom is gone and I must rely on my wife to take me everywhere. The local newspaper regularly has a photo on the front page of yet another vehicle that has gone through the front window of a local drugstore. In each case,the elderly driver says the brakes did not work but the people inside the store at the time say the engine was roaring. How are you going to deal with yourself if you kill somebody?
I had a very scary drive back from the local recreation groundlst month, when I 'sort of' forgot how to drive! Looking back afterwards, I realise I was using the clutch as the accelerator and trying to use the accelerator as the break. Luckily there was no one about as I surged forward onto the pavement. My daughter suggests that I had a panic attack, but I am not sure. But it could have been disastrous, so I took it as a warning and have never driven again. I am 85 and diagnosed with Parkinsons two years ago and have been driving for years. But how I hate relying on someone else to drive me about.
Good for you. Yea I am 68 and gave it all up also. It is like loosing your freedom and job , masculinity, your best friend and your dog , all in the same day, it sucks. No more trips to the hardware store for no reason. No more long drives, road trips south in the winter, visits to relatives, going to the big city, baseball and the art museum , because my wife will not drive that far. I worked so hard when I was young to get that freedom and worked hard, driving through rain and snow to retire .
The soles of our feet change. We use the bottom of our feet in ways we do not think much about, to transmit information so that we can keep our balance when standing and walking and we feel the gas peddle and brake. That is most people do. I get no information so it was kind of like pushing my foot against air when I pushed on the brake if indeed I was actually anywhere near it. Then it takes forever to pick up that right foot and put it on the brake. (if it is actually gets to the brake peddle).
This is all fixable, automatic transmission, hand controls, self parking , but then along comes dozyness and that is the end. I sit in the passenger seat now and keep my mouth shut (except when I am sleeping) but I constantly wake up in a panic thinking I am driving, but then I fall back to sleep.
I wake up, we are on a six lane divided highway , our car is stopped and cars are flying past us in the other two lanes and my wife is waiting for a women to come out of her drive way and get on the highway. I know I am seconds from a transport truck being in the back seat so I close my eyes and calmly suggest she drive on as soon as possible, before we are killed. Then I fall back to sleep.
I look up at the sound of an old blue Jeep going past my house, exactly like the one I had , a retired guy is pulling a box trailer just like mine, the dog has his head out the window and his grand-daughter is in the back seat with the fishing poles. He waves and smiles. This guy has my life. I want my life back, nuts. Then I fall back to sleep. I fell asleep 4 times writing this post and once reading it.
In the UK two main road safety organisations will do an assessment drive for you. Perh ps there are similar organisations in the US? That way you get an independent judgement. It doesn't always follow that PWP's reactions are slower when needed. I did a police road safety promotion test of reactions just after diagnosis age 69 and my reactions were better than some teenagers.
Anyone who develops PD symptoms after surgery should have their B12 levels checked. Nitrous oxide gas sometimes given during surgery can lower B12 levels. Low B12 can mimic parkinsons.
If you are in the UK you must notify the DVLA and your insurance Company that you have PD if you don't and you have an accident your insurance is invalidated.Your Dr and PD specialist will get a letter from the DVLA asking how bad your PD is and should you continue driving.If they say you are fit to continue driving and you still feel confident to drive what's the issue.
When I asked my Dr she was more than happy for me to continue driving, and has been for the 5 yrs since my diagnosis. At 68 still doing 10000+ miles a year, back and forwards to Spain, to the Pyrenees for Skiing and other long trips for holidays in the USA.
You will know yourself when you get behind the wheel if you feel OK to drive.
If you don't then sorry you will need to let the wife chauffeur you!
Wow an automatic shades of 1953, did you get the power brakes too?
I need to change to a self parking with hand controls and a shake reducer like my camera, radar, and global positioning system and a telephone with the numbers 9 and 1 already entered.
yes I forget those little differences in mind set between UK and America . A person would most likely have to order special and pay extra to get a manual transmission here. I have not seen one in ten years. With computer controlled systems there is very little fuel savings and at the present fuel price no one cares about gas mileage leaving only quick starts as an advantage and with newer automatic transmissions the difference is not much. Maybe we are lazy here or maybe it is like the difference in the use of peanut butter. We eat it by the carload and you do not use it, not explainable.
Yes your fuel is amazingly cheap compared to ours. Petrol here is expensive (highly taxed) and is a big part of motoring costs. I was glad to hire an automatic to drive in US because in a left-hand drive car the gear lever is on the 'wrong' side for me. But at home I prefer to be in charge!
As for peanut butter, yes we have that here. I eat it occasionally.
There have been several discussions in this group about surgery inducing Parkinsons. My symptoms began within days after my surgery but I believe mine was induced by the anesthesia and medications they gave me. My theory is they exacerbated Parkinsons which I would have developed later in life. I had no symptoms beforehand. Everyone noticed I changed significantly after the surgery.
As for the driving , when I was first diagnosed, my neurologist referred me for physical and occupational therapy to establish a baseline and one of the things they did was test my driving skills. Any motion disorder therapist should be able to assist you in that are.
It was general anesthesia and I was completely out, but no idea of what it specifically was. Post surgery I was so nauseous, they gave me every antiemetic contraindicated for someone with Parkinsons.
That is par for the course. My father was having severe spasms from a gallbladder condition and to quiet him down they shot him up with haloperidol - which is contraindicated for PD because is actually induces parkinsonism. I pointed this out to the nurse & it was ignored. Prior to passing he was a immobile zombie. That's our medical system for sure....
This may not be relevant but whenever my dentist gives me a numbing shot my tremors go off the chart. But when the shot wears off it goes back to the usual symptoms. Maybe the surgeries anesthesia has something to do with the increase of symptoms.
Not having driven for almost 18 months, you are already out of practise with driving. Are you sure other road users will be safe if you get back behind the wheel? Also check with your car insurance company.
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