Neuroprotection is a slippery construct anyway, it predicates that if you do X then in time Y will not develop. How is this a measurable thing, it is more akin to faith than science.

I woke today with a thought about this, triggered by Paula and Jaye's responses yesterday. There are no patient defined descriptives of the pre-diagnosis state, only anecdotes, which are almost always dismissed. Some of us came to forums like this to find out what was wrong with us originally, I was on the MGH fibro forum first, where I quickly learned that what I had was not fibro.

But there are hundreds of us now, connected and articulate, who possibly, through the treatments and diagnostic f/ups and the dysfunctional mess that PD can make of our lives, may remember and be able to tell what those early things were that set us on a course to find out what was wrong, why we did not feel 'right'. Not whether we fitted into that four cardinal signs paradigm, but what we were actually experiencing. What exactly made us go and see a doctor in the first place. With new patients, sadly, still joining our ranks all the time, it would make an interesting study. Personally I think looking at that would yield as many answers as anything. Goes back to what I always think, PwP themselves are an under-used resource in the search to find out more about this disease.

symptoms - lack of control of emotions, tantrums, had colic till 6 months cried all the time...but the first and only behavioral check on my report card i ever got in elemetary school was for lack of self control. i remember being upset and thought i was bad [ well looking back i did have trouble not talking in class and was very impulsive. luckily, i was smart, always did my homework, could play piano and sing in front of groups and from 3rd grade up my teachers knew i was a leader. but the adults at my mothers funeral service made comments like " you were cantankerous.

sorry for those who know this story but it never hurts to post a profile.

So i wasn 't a bad looking kid and got interested in boys in elementary school. had a boyfriend in 6th grade that went to my church iT was mutual altho we never did anything together, not even sit in church together. i was friends with his sisters. none of them went to my school.He gave me a ring but i don't think he gave it to me directly.

in junior high i had several "hotties" and began to hold hands and kiss; but always felt guilty because of those who saw that as promiscuous i see now that my behavior was pretty typical of junior high [today it would mean i was frigid. lol ]the point is i always had guilt -i was plagued with it early on. Then i started going with a boy in 8th grade that i would stay with till i graduated. we cheated on each other andbroke up several times . he asked me to marry him but i had to go off and see the world- wasn't ready yet; so throughout my college years i had several relationships, a couple of them were long and serious. The one I really liked had weaker feelngs for me. i sure liked him.

i started drinking and i was out of control drinking. it didn't make me sexually promicuous but just loud stupid. silly. then i met some "hippies' and started smoking pot. i smoked and drank frequently throughout ,my 20s, even went to workas a speech therapist stoned a few times in a mini dress that barely covered my back end and beginning of thigh. The school i was at that day had a prinicipal who liked to drink...but still, i was 21;started college at 17, i was stupid. But i was not sexually promiscuous. some things seem worse than others. i could handle that i liked to smoke pot. but could not handle being a "ho', slut." i had boyfriends, usually in more than one location. so my out of control behavior had "natural outlets" in junior high and high school . i was never home - was in the "in crowd."

But my home life was angry, frequently being smacked around the room by my father , who came home from a 3 to 11 shift on the railroad in the steel mill where he worked and picked a fight with my mother every night. He always found something to criticize. many a saturday morning my mother would get up late, crying as she cleaned the house, did the laundry, cooked and never sat down. This was the area where my life was a wash out. it got me depressed every time i had PMS and even more after i moved away to harrisburg to do speech therapy; after two years hanging with a real estate crowd i realized their wedding bands meant nothing to them.


Then i went to Hawaii and that was it; i went with my mother because the girl i was supposed to go with got proposed to and i had already paid for the tour.i fell in love with everything about hawaii, i still would move to maui in a heartbeat. i got a masters degree and taught learning disabled at pearl harbor.
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i supported my self thru school by bartending at Jolly Rogers restaruant where upstairs was the Crows' Nest. Frequented by the military- packed when the ships came in. This is the period that i was probably a drug addict or an alcoholic by its own definition. i loved gin and tonic and drank during the week and on weekends. we were allowed two drinks after closing and the employees, manager annd comedy team musicians looked forward to sitting and having them. but two gin and tonics , usually doubles made me quite drunk and one time i didn't remember driving home at all. when i got home i still couldn't sleep so i'd get out the pot and listen to music like janis ian's 'seventeen' or pure praire leagues 'amy" . joni mitchell was my favorite, loggins and messina . but next day the hangover always made me depressed. i will never allow myself to have another hangover as long as i have left to live. but somehow i held down that and a tutoring job in a house on the beach and got a masters degree. so you could say i was out of control for most of my 20s. my husband slept while i worked and vice versa.

is this type of personality similar to any of you here? i always had something going on but had to drink or be stoned to enjoy it. finally, my husband and i went back to church and cleaned ourselves up. We sold our condo and moved onto church property and lived in a quonset hut when my first daughter was born; we planned on leaving at the end of that school year but my mother got pancreatic cancer and we went home immediately. she was gone in five months. my oldst was only a year old and of course she never met my second child.

i stayed clean when raising the girls except for smoking cigarettes some. when i started going to pd get togethers i discovered that pot was helpful for symtom relief. i used it whenever i could but have no local contact and can't fly with it. i wish i did have some.

So i lived n Hawaii for over 10 years and came home when i began having children . we didn't want our kids in the hawaiian schools where they were an unwanted minority. my daughter was born in the same hospital as barack obama.

well i forgot to tale a klonopan and this is long so i'll wrap it up. i feel that pd is an emotional disorder as much as anything and trauma [and i had plenty of harsh discipline and felt no love from my father till i was much older.Now i realize he was just very insecure and my mother was his mother too.

when i went home shse was dying and they had made their peace. we have a picture of her s itting on his lap....so thin...but so different from what we had witnessed. as soon as i cleaned up my act in Hawaii i found out there was pesticide in the milk and they had to kill thecows. the rest i thnk ,,most of you know,,,,,hormones shut down , gastro intestinal problems, anxiety, etc etc ,then pd. so what is going to neuroprotect against a bright, cantankerous, out of control, substance abuser and now forced addict ?ii usually leave out the grieving. hmmmmmmmm i don't think the answer is in pub med. it lies within the patients - don't ever stop thinking.

ok i'm erasing my signature because this post is out of control. then will correct spelling.

Hi Paula

I agree that it appears as though we are all out of balance. If dopamine is the only neurotransmitter that is initially out of whack and it is that fact that is throwing the rest of the chemical balances off, then my question is why, if we are replacing depleted endogenous dopamine with exogenous dopamine, why is that balance not being restored? Is it because exogenous dopamine acts differently than endogenous dopamine? Or is it because dopamine is not the only neurotransmitter that is initially out of whack? Or both? Or something else?

And I agree also that any new therapy that does not address the the entire spectrum of imbalance will be just a Band-Aid, like levodopa is. However, I believe that it is possible to find a better Band-Aid than levodopa.

Lindylanka and Paula, I have the option to do a thesis next year if I want. T'm thinking about your suggestions and trying to figure out what some kind of pilot study would look like – something that I could do for my thesis, so it couldn't cost much, or possibly any money. I have another thesis idea that I'd really like to pursue – whatever thesis idea I pursue will be the one that is most amenable to pursuit, based on principles and constraints that govern such research, and whichever one is most in line with my area of study, which is health policy. I'm learning that it is not as straightforward as one might think to gather data and analyze it. Anyway, I'll give it some more thought. Maybe we could start a new thread brainstorming on what kinds of information we may collect that would be the most likely to produce results that have meaning beyond the study – in other words, I'm not sure it's the best approach, or even a feasible approach, to cast as wide a net as possible and collect every symptom that ever brought anyone to the doctor… Although maybe I'm wrong… I think you would have to have a very large sample size to be able to detect trends in a case like that, because there would be so many variables i.e. symptoms. So, depending on the sample size, and I don't know how large a sample I can get (selecting a sample is another challenge) it might be necessary to narrow the focus down to, say, for example, was it one of the Cardinal symptoms that brought you to the doctor initially – if it was for most people, then that would confirm those symptoms as being good diagnostic markers, I think. If it was not, for most people, that would be extremely informative as well. Does that make sense?

You would get the people- globally. Think on it.

thanks boann

That is the question - how would i get a really large, really representative sample?

i had some obvious pre-diagnosis "tells".
1. 2 occurrences of sudden frozen shoulders, no warning, just woke up and there it was.
2. lack of arm swing when running on only my right side years before my diagnosis. it was so obvious many people commented on it.
3. increasing procrastination.

i get the feeling more effort is going to be made on early detection, especially with dna analysis getting cheaper/quicker:
http://medicalxpress.com/news/2012-0...code-life.html

once all the genes are identified that makes one susceptible or more resistant from neurological damage, then drugs can be developed and/or diet, life style modifications, environmental awareness will contribute to avoidance. and who knows, there might be a one time "fix" that would stop the progression.

i think the problem is doctors, mainly general practitioners, not lack of data on early signs. they have no incentive to even train to look for early signs since there is nothing they can do - yet. i played soccer with my GP and he didn't notice the lack of arm swing and after i was diagnosed by a MDS, he had the nerve to tell me he was very skilled at diagnosing pd. and this was a GP in a very large, highly respected healthcare organization that saw a lot of patients.

Hi BoAnn,
Think it would be a great thing to do, there are communities that would provide a large sample, though I do not know about controls if they were needed. Spouses perhaps? A global one would be good........

I had a few weird health related things, first was a long time prior to dx, after a spell in France the day we were due to leave for home the lift broke, we had a 6 hour journey to catch the ferry. We had hired a track to get our stuff home, so the pressure was on. We hauled all the stuff down between us, from the 5th floor, furniture and all. Must had done the stairs around 25 times. 2 days later I fell into what I can only say was the tiredest state I had ever been in. It took me nearly a year to recover. Had to stop and rest every few yards, a loaf of bread in a bag felt like it weighed a stone. Got tested for everything under the sun. Nothing. that was '87.

The second was a painful right foot and right shoulder, not event specific, the shoulder lingered a bit, never really went away, the foot got diagnosed as a heel spur, had them on both feet but the other one never hurt ever. Hmm. My brother reckoned I could walked it off. So I walked a lot even though it was like being the little mermaid, after a while it went away. I guess the reason I'm talking about it is because the pain that I get from foot dystonia is so similar. It was '95.

Pre-diagnosis stuff - stiffness and pain, right sided again, couldn't go down stairs in the usual way, could go three days without sleep, other people thought that was odd, muscles felt very toned without doing much exercise, hard to breathe out, lung capacity tests showed that my lung reflexes were unusually slow, grinding teeth, daily migraine with not much pain but lots of aura, pillows got soaked, a buzzy sensation inside like a vibration. This developed over 2-3 years till 2001.

but i think it is beyond the scope of a masters thesis. i think a pilot-type project would be more appropriate.

Paula,
One thing I notice about your life, it sure has not been boring. Fire and passion and living on the edge.